The Official Parent's Sourcebook on Dyslexia: A Revised and Updated Directory for the Internet Age

THE OFFICIAL PARENT’S SOURCEBOOK

on

J AMES N. P ARKER , M.D. AND P HILIP M. P ARKER , P H .D., E DITORS

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ICON Health Publications ICON Group International, Inc. 4370 La Jolla Village Drive, 4th Floor San Diego, CA 92122 USA Copyright Ó2002 by ICON Group International, Inc. Copyright Ó2002 by ICON Group International, Inc. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without written permission from the publisher. Printed in the United States of America. Last digit indicates print number: 10 9 8 7 6 4 5 3 2 1

Publisher, Health Care: Tiffany LaRochelle Editor(s): James Parker, M.D., Philip Parker, Ph.D. Publisher’s note: The ideas, procedures, and suggestions contained in this book are not intended as a substitute for consultation with your child’s physician. All matters regarding your child’s health require medical supervision. As new medical or scientific information becomes available from academic and clinical research, recommended treatments and drug therapies may undergo changes. The authors, editors, and publisher have attempted to make the information in this book up to date and accurate in accord with accepted standards at the time of publication. The authors, editors, and publisher are not responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or implied, in regard to the contents of this book. Any practice described in this book should be applied by the reader in accordance with professional standards of care used in regard to the unique circumstances that may apply in each situation, in close consultation with a qualified physician. The reader is advised to always check product information (package inserts) for changes and new information regarding dose and contraindications before administering any drug or pharmacological product. Caution is especially urged when using new or infrequently ordered drugs, herbal remedies, vitamins and supplements, alternative therapies, complementary therapies and medicines, and integrative medical treatments. Cataloging-in-Publication Data Parker, James N., 1961Parker, Philip M., 1960The Official Parent’s Sourcebook on Dyslexia: A Revised and Updated Directory for the Internet Age/James N. Parker and Philip M. Parker, editors p. cm. Includes bibliographical references, glossary and index. ISBN: 0-597-83030-4 1. Dyslexia-Popular works. I. Title.

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Disclaimer This publication is not intended to be used for the diagnosis or treatment of a health problem or as a substitute for consultation with licensed medical professionals. It is sold with the understanding that the publisher, editors, and authors are not engaging in the rendering of medical, psychological, financial, legal, or other professional services. References to any entity, product, service, or source of information that may be contained in this publication should not be considered an endorsement, either direct or implied, by the publisher, editors, or authors. ICON Group International, Inc., the editors, or the authors are not responsible for the content of any Web pages nor publications referenced in this publication.

Copyright Notice If a physician wishes to copy limited passages from this sourcebook for parent use, this right is automatically granted without written permission from ICON Group International, Inc. (ICON Group). However, all of ICON Group publications are copyrighted. With exception to the above, copying our publications in whole or in part, for whatever reason, is a violation of copyright laws and can lead to penalties and fines. Should you want to copy tables, graphs or other materials, please contact us to request permission (e-mail: [email protected]). ICON Group often grants permission for very limited reproduction of our publications for internal use, press releases, and academic research. Such reproduction requires confirmed permission from ICON Group International Inc. The disclaimer above must accompany all reproductions, in whole or in part, of this sourcebook.

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Dedication To the healthcare professionals dedicating their time and efforts to the study of dyslexia.

Acknowledgements The collective knowledge generated from academic and applied research summarized in various references has been critical in the creation of this sourcebook which is best viewed as a comprehensive compilation and collection of information prepared by various official agencies which directly or indirectly are dedicated to dyslexia. All of the Official Parent’s Sourcebooks draw from various agencies and institutions associated with the United States Department of Health and Human Services, and in particular, the Office of the Secretary of Health and Human Services (OS), the Administration for Children and Families (ACF), the Administration on Aging (AOA), the Agency for Healthcare Research and Quality (AHRQ), the Agency for Toxic Substances and Disease Registry (ATSDR), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Healthcare Financing Administration (HCFA), the Health Resources and Services Administration (HRSA), the Indian Health Service (IHS), the institutions of the National Institutes of Health (NIH), the Program Support Center (PSC), and the Substance Abuse and Mental Health Services Administration (SAMHSA). In addition to these sources, information gathered from the National Library of Medicine, the United States Patent Office, the European Union, and their related organizations has been invaluable in the creation of this sourcebook. Some of the work represented was financially supported by the Research and Development Committee at INSEAD. This support is gratefully acknowledged. Finally, special thanks are owed to Tiffany LaRochelle for her excellent editorial support.

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About the Editors James N. Parker, M.D. Dr. James N. Parker received his Bachelor of Science degree in Psychobiology from the University of California, Riverside and his M.D. from the University of California, San Diego. In addition to authoring numerous research publications, he has lectured at various academic institutions. Dr. Parker is the medical editor for the Official Parent’s Sourcebook series published by ICON Health Publications.

Philip M. Parker, Ph.D. Philip M. Parker is the Eli Lilly Chair Professor of Innovation, Business and Society at INSEAD (Fontainebleau, France and Singapore). Dr. Parker has also been Professor at the University of California, San Diego and has taught courses at Harvard University, the Hong Kong University of Science and Technology, the Massachusetts Institute of Technology, Stanford University, and UCLA. Dr. Parker is the associate editor for the Official Parent’s Sourcebook series published by ICON Health Publications.

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About ICON Health Publications In addition to dyslexia, Official Parent’s Sourcebooks are available for the following related topics: ·

The Official Patient's Sourcebook on Asperger Syndrome

·

The Official Patient's Sourcebook on Attention Deficit Hyperactivity Disorder

·

The Official Patient's Sourcebook on Autism

·

The Official Patient's Sourcebook on Cerebral Palsy

·

The Official Patient's Sourcebook on Dysgraphia

·

The Official Patient's Sourcebook on Gerstmann

·

The Official Patient's Sourcebook on Septo-optic Dysplasia

To discover more about ICON Health Publications, simply check with your preferred online booksellers, including Barnes & Noble.com and Amazon.com which currently carry all of our titles. Or, feel free to contact us directly for bulk purchases or institutional discounts: ICON Group International, Inc. 4370 La Jolla Village Drive, Fourth Floor San Diego, CA 92122 USA Fax: 858-546-4341 Web site: www.icongrouponline.com/health

Contents vii

Table of Contents INTRODUCTION...................................................................................... 1

Overview............................................................................................................... 1 Organization......................................................................................................... 3 Scope ..................................................................................................................... 3 Moving Forward................................................................................................... 4

PART I: THE ESSENTIALS ................................................. 7 CHAPTER 1. THE ESSENTIALS ON DYSLEXIA: GUIDELINES .................. 9

Overview............................................................................................................... 9 What Is Dyslexia? .............................................................................................. 10 Is There Any Treatment? ................................................................................... 11 What Is the Prognosis?....................................................................................... 11 What Research Is Being Done? .......................................................................... 11 For More Information......................................................................................... 11 More Guideline Sources ..................................................................................... 13 Vocabulary Builder............................................................................................. 17

CHAPTER 2. SEEKING GUIDANCE ....................................................... 19

Overview............................................................................................................. 19 Associations and Dyslexia.................................................................................. 19 Finding More Associations................................................................................. 22 Finding Doctors.................................................................................................. 24 Finding a Neurologist......................................................................................... 25 Selecting Your Doctor ........................................................................................ 25 Working with Your Child’s Doctor.................................................................... 26 Broader Health-Related Resources ..................................................................... 27 Vocabulary Builder............................................................................................. 27

CHAPTER 3. CLINICAL TRIALS AND DYSLEXIA................................... 29

Overview............................................................................................................. 29 Recent Trials on Dyslexia................................................................................... 32 Benefits and Risks............................................................................................... 33 Keeping Current on Clinical Trials.................................................................... 36 General References.............................................................................................. 37 Vocabulary Builder............................................................................................. 38

PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL.................................................. 39 CHAPTER 4. STUDIES ON DYSLEXIA .................................................... 41

Overview............................................................................................................. 41 The Combined Health Information Database ..................................................... 41 Federally-Funded Research on Dyslexia ............................................................ 46 E-Journals: PubMed Central .............................................................................. 59

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The National Library of Medicine: PubMed ...................................................... 60 Vocabulary Builder............................................................................................. 61

CHAPTER 5. PATENTS ON DYSLEXIA ................................................... 63

Overview............................................................................................................. 63 Patents on Dyslexia ............................................................................................ 64 Patent Applications on Dyslexia ........................................................................ 75 Keeping Current ................................................................................................. 75 Vocabulary Builder............................................................................................. 76

CHAPTER 6. BOOKS ON DYSLEXIA ...................................................... 77

Overview............................................................................................................. 77 Book Summaries: Federal Agencies .................................................................... 77 Book Summaries: Online Booksellers ................................................................. 80 The National Library of Medicine Book Index ................................................... 80 Chapters on Dyslexia.......................................................................................... 84 Directories........................................................................................................... 95 General Home References ................................................................................... 97 Vocabulary Builder............................................................................................. 98

CHAPTER 7. MULTIMEDIA ON DYSLEXIA............................................ 99

Overview............................................................................................................. 99 Video Recordings ................................................................................................ 99 Bibliography: Multimedia on Dyslexia ............................................................ 100 Vocabulary Builder........................................................................................... 101

CHAPTER 8. PHYSICIAN GUIDELINES AND DATABASES ................... 103

Overview........................................................................................................... 103 NIH Guidelines................................................................................................. 103 NIH Databases.................................................................................................. 104 Other Commercial Databases ........................................................................... 107 The Genome Project and Dyslexia.................................................................... 108 Specialized References....................................................................................... 112 Vocabulary Builder........................................................................................... 114

CHAPTER 9. DISSERTATIONS ON DYSLEXIA ...................................... 115

Overview........................................................................................................... 115 Dissertations on Dyslexia................................................................................. 115 Keeping Current ............................................................................................... 117 Vocabulary Builder........................................................................................... 117

PART III. APPENDICES .................................................. 119 APPENDIX A. RESEARCHING YOUR CHILD’S MEDICATIONS ........... 121

Overview........................................................................................................... 121 Your Child’s Medications: The Basics.............................................................. 122 Learning More about Your Child’s Medications ............................................. 123 Commercial Databases...................................................................................... 124 Contraindications and Interactions (Hidden Dangers) ................................... 125

Contents

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A Final Warning .............................................................................................. 126 General References............................................................................................ 127

APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE ................... 129

Overview........................................................................................................... 129 What Is CAM? ................................................................................................. 130 What Are the Domains of Alternative Medicine?............................................ 130 Can Alternatives Affect My Child’s Treatment?............................................. 134 Finding CAM References on Dyslexia ............................................................. 134 Additional Web Resources................................................................................ 142 General References............................................................................................ 142 Vocabulary Builder........................................................................................... 143

APPENDIX C. RESEARCHING NUTRITION ......................................... 145

Overview........................................................................................................... 145 Food and Nutrition: General Principles........................................................... 146 Finding Studies on Dyslexia ............................................................................ 150 Federal Resources on Nutrition........................................................................ 152 Additional Web Resources................................................................................ 152 Vocabulary Builder........................................................................................... 153

APPENDIX D. FINDING MEDICAL LIBRARIES.................................... 155

Overview........................................................................................................... 155 Preparation ....................................................................................................... 155 Finding a Local Medical Library ...................................................................... 156 Medical Libraries Open to the Public............................................................... 156

APPENDIX E. YOUR CHILD’S RIGHTS AND INSURANCE ................... 163

Overview........................................................................................................... 163 Your Child’s Rights as a Patient ...................................................................... 163 Parent Responsibilities ..................................................................................... 167 Choosing an Insurance Plan............................................................................. 168 Medicaid ........................................................................................................... 170 NORD’s Medication Assistance Programs ..................................................... 170 Additional Resources ........................................................................................ 171

ONLINE GLOSSARIES.................................................... 173 Online Dictionary Directories.......................................................................... 174

DYSLEXIA GLOSSARY ................................................... 175 General Dictionaries and Glossaries ................................................................ 180

INDEX................................................................................... 182

Introduction

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INTRODUCTION Overview Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.”1 The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that all parents incorporate education into the treatment process. According to the AHRQ: Finding out more about your [child’s] condition is a good place to start. By contacting groups that support your [child’s] condition, visiting your local library, and searching on the Internet, you can find good information to help guide your decisions for your [child’s] treatment. Some information may be hard to find—especially if you don’t know where to look.2 As the AHRQ mentions, finding the right information is not an obvious task. Though many physicians and public officials had thought that the emergence of the Internet would do much to assist parents in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning: The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading.3 Quotation from http://www.drkoop.com. The Agency for Healthcare Research and Quality (AHRQ): http://www.ahcpr.gov/consumer/diaginfo.htm. 3 From the NIH, National Cancer Institute (NCI): http://cancertrials.nci.nih.gov/beyond/evaluating.html. 1 2

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Dyslexia

Since the late 1990s, physicians have seen a general increase in parent Internet usage rates. Parents frequently enter their children’s doctor’s offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding children through sound therapies. The Official Parent’s Sourcebook on Dyslexia has been created for parents who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to dyslexia, from the essentials to the most advanced areas of research. The title of this book includes the word “official.” This reflects the fact that the sourcebook draws from public, academic, government, and peerreviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on dyslexia. Given parents’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-ofcharge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current. In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process. We must emphasize that no sourcebook on dyslexia should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is “correct” or your child’s best option. This sourcebook is no exception. Each child is unique. Deciding on appropriate

Introduction

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options is always up to parents in consultation with their children’s physicians and healthcare providers.

Organization This sourcebook is organized into three parts. Part I explores basic techniques to researching dyslexia (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other parent networks dedicated to dyslexia. It also gives you sources of information that can help you find a doctor in your local area specializing in treating dyslexia. Collectively, the material presented in Part I is a complete primer on basic research topics for dyslexia. Part II moves on to advanced research dedicated to dyslexia. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on dyslexia. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend “free-to-use” options. Part III provides appendices of useful background reading covering dyslexia or related disorders. The appendices are dedicated to more pragmatic issues facing parents. Accessing materials via medical libraries may be the only option for some parents, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing children with dyslexia and their families.

Scope While this sourcebook covers dyslexia, doctors, research publications, and specialists may refer to your child’s condition using a variety of terms. Therefore, you should understand that dyslexia is often considered a synonym or a condition closely related to the following: ·

Congenital Word Blindness

·

Developmental Reading Disorder

·

Primary Reading Disability

4

Dyslexia

·

Specific Reading Disability

In addition to synonyms and related conditions, physicians may refer to dyslexia using certain coding systems. The International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) is the most commonly used system of classification for the world’s illnesses. Your physician may use this coding system as an administrative or tracking tool. The following classification is commonly used for dyslexia:4 ·

784.61 dyslexia

For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to dyslexia. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians.

Moving Forward Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by parents, patients, or their family members. These generally take a layperson’s approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful. As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for the purpose of educating you about basic and advanced knowledge as recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian. Why “Internet age”? When their child has been diagnosed with dyslexia, parents will often log on to the Internet, type words into a search engine, and receive several Web site listings which are mostly irrelevant or redundant. Parents are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with 4 This list is based on the official version of the World Health Organization’s 9th Revision, International Classification of Diseases (ICD-9). According to the National Technical Information Service, “ICD-9CM extensions, interpretations, modifications, addenda, or errata other than those approved by the U.S. Public Health Service and the Health Care Financing Administration are not to be considered official and should not be utilized. Continuous maintenance of the ICD-9-CM is the responsibility of the federal government.”

Introduction

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dyslexia is even indexed in search engines, a non-systematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion. While we focus on the more scientific aspects of dyslexia, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find parent groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you and your child the most options in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your child’s treatment plan. The Editors

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PART I: THE ESSENTIALS

ABOUT PART I Part I has been edited to give you access to what we feel are “the essentials” on dyslexia. The essentials typically include a definition or description of the condition, a discussion of who it affects, the signs or symptoms, tests or diagnostic procedures, and treatments for disease. Your child’s doctor or healthcare provider may have already explained the essentials of dyslexia to you or even given you a pamphlet or brochure describing the condition. Now you are searching for more in-depth information. As editors, we have decided, nevertheless, to include a discussion on where to find essential information that can complement what the doctor has already told you. In this section we recommend a process, not a particular Web site or reference book. The process ensures that, as you search the Web, you gain background information in such a way as to maximize your understanding.

Guidelines

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CHAPTER 1. THE ESSENTIALS ON DYSLEXIA: GUIDELINES Overview Official agencies, as well as federally-funded institutions supported by national grants, frequently publish a variety of guidelines on dyslexia. These are typically called “Fact Sheets” or “Guidelines.” They can take the form of a brochure, information kit, pamphlet, or flyer. Often they are only a few pages in length. The great advantage of guidelines over other sources is that they are often written with the parent in mind. Since new guidelines on dyslexia can appear at any moment and be published by a number of sources, the best approach to finding guidelines is to systematically scan the Internet-based services that post them.

The National Institutes of Health (NIH)5 The National Institutes of Health (NIH) is the first place to search for relatively current guidelines and fact sheets on dyslexia. Originally founded in 1887, the NIH is one of the world’s foremost medical research centers and the federal focal point for medical research in the United States. At any given time, the NIH supports some 35,000 research grants at universities, medical schools, and other research and training institutions, both nationally and internationally. The rosters of those who have conducted research or who have received NIH support over the years include the world’s most illustrious scientists and physicians. Among them are 97 scientists who have won the Nobel Prize for achievement in medicine.

5

Adapted from the NIH: http://www.nih.gov/about/NIHoverview.html.

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There is no guarantee that any one Institute will have a guideline on a specific medical condition, though the National Institutes of Health collectively publish over 600 guidelines for both common and rare disorders. The best way to access NIH guidelines is via the Internet. Although the NIH is organized into many different Institutes and Offices, the following is a list of key Web sites where you are most likely to find NIH clinical guidelines and publications dealing with dyslexia and associated conditions: ·

Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm

·

National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines available at http://www.nlm.nih.gov/medlineplus/healthtopics.html

·

National Institute of Neurological Disorders and Stroke (NINDS); http://www.ninds.nih.gov/health_and_medical/disorder_index.htm

Among the above, the National Institute of Neurological Disorders and Stroke (NINDS) is particularly noteworthy. The mission of the NINDS is to reduce the burden of neurological disease—a burden borne by every age group, by every segment of society, by people all over the world.6 To support this mission, the NINDS conducts, fosters, coordinates, and guides research on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke, and supports basic research in related scientific areas. The following patient guideline was recently published by the NINDS on dyslexia.

What Is Dyslexia?7 Dyslexia is a brain-based type of learning disability that specifically impairs a person’s ability to read. These individuals typically read at levels significantly lower than expected despite having normal intelligence. Although the disorder varies from person to person, common characteristics among people with dyslexia are difficulty with phonological processing (the manipulation of sounds) and/or rapid visual-verbal responding.

6 This paragraph has been adapted from the NINDS: http://www.ninds.nih.gov/about_ninds/mission.htm. “Adapted” signifies that a passage has been reproduced exactly or slightly edited for this book. 7 Adapted from The National Institute of Neurological Disorders and Stroke (NINDS): http://www.ninds.nih.gov/health_and_medical/disorders/dyslexia_doc.htm.

Guidelines 11

Is There Any Treatment? The main focus of treatment should be on the specific learning problems of affected individuals. The usual course is to modify teaching methods and the educational environment to meet the specific needs of the individual with dyslexia.

What Is the Prognosis? For those with dyslexia, the prognosis is mixed. The disability affects such a wide range of people, producing different symptoms and varying degrees of severity, that predictions are hard to make. The prognosis is generally good, however, for individuals whose dyslexia is identified early, who have supportive family and friends and a strong self-image, and who are involved in a proper remediation program.

What Research Is Being Done? The NINDS and other institutes of the National Institutes of Health, including the National Institute of Child Health and Human Development and the National Institute of Mental Health, conduct research on dyslexia. Current research avenues focus on developing techniques to diagnose and treat dyslexia and other learning disabilities, increasing the understanding of the biological basis of learning disabilities, and exploring the relationship between neurophysiological processes and cognitive functions with regard to reading ability.

For More Information For more information, contact: International Dyslexia Association 8600 LaSalle Road Chester Building, Ste. 382 Baltimore, MD 21286-2044 [email protected] http://www.interdys.org

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Tel: 410-296-0232 / 800-ABCD123 Fax: 410-321-5069 Learning Disabilities Association of America 4156 Library Road Pittsburgh, PA 15234-1349 [email protected] http://www.ldanatl.org Tel: 412-341-1515 / 412-341-8077 Fax: 412-344-0224 National Center for Learning Disabilities 381 Park Avenue South Suite 1401 New York, NY 10016 http://www.ld.org Tel: 212-545-7510 / 888-575-7373 Fax: 212-545-9665 National Institute of Child Health and Human Development (NICHD) National Institutes of Health Bldg. 31, Rm. 2A32 Bethesda, MD 20892-2425 [email protected] http://www.nichd.nih.gov/ Tel: 301-496-5133 / 800-370-2943 National Institute of Mental Health (NIMH) 6001 Executive Blvd. Rm. 8184, MSC 9663 Bethesda, MD 20892-9663 [email protected] http://www.nimh.nih.gov Tel: 301-443-4513 TTY: 301-443-8431 Depression Info: 800-421-4211 Anxiety Info: 88-88-ANXIETY (269-4389) Panic Info: 888-64-PANIC (64-72642) Fax: 301-443-4279

Guidelines 13

More Guideline Sources The guideline above on dyslexia is only one example of the kind of material that you can find online and free of charge. The remainder of this chapter will direct you to other sources which either publish or can help you find additional guidelines on topics related to dyslexia. Many of the guidelines listed below address topics that may be of particular relevance to your child’s specific situation, while certain guidelines will apply to only some children with dyslexia. Due to space limitations these sources are listed in a concise manner. Do not hesitate to consult the following sources by either using the Internet hyperlink provided, or, in cases where the contact information is provided, contacting the publisher or author directly.

Topic Pages: MEDLINEplus For parents wishing to go beyond guidelines published by specific Institutes of the NIH, the National Library of Medicine has created a vast and parentoriented healthcare information portal called MEDLINEplus. Within this Internet-based system are “health topic pages.” You can think of a health topic page as a guide to patient guides. To access this system, log on to http://www.nlm.nih.gov/medlineplus/healthtopics.html. From there you can either search using the alphabetical index or browse by broad topic areas. If you do not find topics of interest when browsing health topic pages, then you can choose to use the advanced search utility of MEDLINEplus at http://www.nlm.nih.gov/medlineplus/advancedsearch.html. This utility is similar to the NIH Search Utility, with the exception that it only includes material linked within the MEDLINEplus system (mostly parent-oriented information). It also has the disadvantage of generating unstructured results. We recommend, therefore, that you use this method only if you have a very targeted search.

The Combined Health Information Database (CHID) CHID Online is a reference tool that maintains a database directory of thousands of journal articles and educational guidelines on dyslexia and related conditions. One of the advantages of CHID over other sources is that it offers summaries that describe the guidelines available, including contact information and pricing. CHID’s general Web site is http://chid.nih.gov/. To search this database, go to http://chid.nih.gov/detail/detail.html. In

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particular, you can use the advanced search options to look up pamphlets, reports, brochures, and information kits. The following was recently posted in this archive: ·

Understanding Learning Disabilities Source: Chicago, IL: National Easter Seal Society. 1992. 2 p. Contact: Available from National Easter Seal Society. 230 West Monroe Street, Suite 1800, Chicago, IL 60606. Voice (312) 726-6200; TTY (708) 7264258; Fax (312) 726-1494. Price: $7.50 per 25 copies. Order Number A-240. Summary: This brochure provides an overview of learning disabilities and the types of intervention that children with learning disabilities will require. The author stresses that early diagnosis, proper remediation, and the support of caring and informed parents and teachers will do much to help a child with a learning disability overcome the problem. Topics include the incidence of learning disabilities, the signs and symptoms of learning disabilities, strategies for success at home and in the classroom, and likely causes of learning disabilities. The brochure defines three related terms: apraxia, dyslexia, and maturational lag. The brochure is produced by the National Easter Seal Society, an organization founded to help people with disabilities achieve maximum independence.

·

Learning disabilities: What is it Source: Pittsburgh, PA: Learning Disabilities Association. n.d. 2 pp. Contact: Available from Learning Disabilities Association of America, 4156 Library Road, Pittsburgh, PA 15234. Telephone: (412) 341-1515 / fax: (412) 344-0224 / e-mail: [email protected] / Web site: http://www.ldanatl.org. Summary: This brochure provides information on learning disabilities including how the disability is defined by the federal government, its symptoms, implications for social interaction, common behavior characteristics, and treatment. It also contains a brief section on dyslexia.

Guidelines 15

The National Guideline Clearinghouse™ The National Guideline Clearinghouse™ offers hundreds of evidence-based clinical practice guidelines published in the United States and other countries. You can search their site located at http://www.guideline.gov by using the keyword “dyslexia” or synonyms. The following was recently posted: ·

Care of the patient with learning related vision problems. Source: American Optometric Association.; 2000; 60 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 1828&sSearch_string=dyslexia

·

Practice parameters for the assessment and treatment of children and adolescents with language and learning disorders. Source: American Academy of Child and Adolescent Psychiatry.; 1998; 17 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 0756&sSearch_string=dyslexia

Healthfinder™ Healthfinder™ is an additional source sponsored by the U.S. Department of Health and Human Services which offers links to hundreds of other sites that contain healthcare information. This Web site is located at http://www.healthfinder.gov. Again, keyword searches can be used to find guidelines. The following was recently found in this database: ·

Dyslexia Summary: A general overview of dyslexia that includes a description of the disorder, and treatment, prognosis and research information. Source: National Institute of Neurological Disorders and Stroke, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=777

16 Dyslexia

·

Sam's Story of Life With Dyslexia Summary: This article is about the learning disability called dyslexia. It tells why what Sam and kids like him see and hear looks different or sounds different than it would to most people. Source: Nemours Foundation http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=5860

The NIH Search Utility After browsing the references listed at the beginning of this chapter, you may want to explore the NIH Search Utility. This allows you to search for documents on over 100 selected Web sites that comprise the NIH-WEBSPACE. Each of these servers is “crawled” and indexed on an ongoing basis. Your search will produce a list of various documents, all of which will relate in some way to dyslexia. The drawbacks of this approach are that the information is not organized by theme and that the references are often a mix of information for professionals and parents. Nevertheless, a large number of the listed Web sites provide useful background information. We can only recommend this route, therefore, for relatively rare or specific disorders, or when using highly targeted searches. To use the NIH search utility, visit the following Web page: http://search.nih.gov/index.html.

NORD (The National Organization of Rare Disorders, Inc.) NORD provides an invaluable service to the public by publishing, for a nominal fee, short yet comprehensive guidelines on over 1,000 medical conditions. NORD primarily focuses on rare medical conditions that might not be covered by the previously listed sources. NORD’s Web address is www.rarediseases.org. To see if a recent fact sheet has been published on dyslexia, simply go to the following hyperlink: http://www.rarediseases.org/cgi-bin/nord/alphalist. A complete guide on dyslexia can be purchased from NORD for a nominal fee.

Guidelines 17

Additional Web Sources A number of Web sites that often link to government sites are available to the public. These can also point you in the direction of essential information. The following is a representative sample: ·

AOL: http://search.aol.com/cat.adp?id=168&layer=&from=subcats

·

drkoop.comÒ: http://www.drkoop.com/conditions/ency/index.html

·

Family Village: http://www.familyvillage.wisc.edu/specific.htm

·

Google: http://directory.google.com/Top/Health/Conditions_and_Diseases/

·

Med Help International: http://www.medhelp.org/HealthTopics/A.html

·

Open Directory Project: http://dmoz.org/Health/Conditions_and_Diseases/

·

Yahoo.com: http://dir.yahoo.com/Health/Diseases_and_Conditions/

·

WebMDÒHealth: http://my.webmd.com/health_topics

Vocabulary Builder Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting from unrecognized intrapsychic conflict. Physiological concomitants include increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU] Auditory: Pertaining to the sense of hearing. [EU] Mental: Pertaining to the mind; psychic. 2. (L. mentum chin) pertaining to the chin. [EU] Oral: Pertaining to the mouth, taken through or applied in the mouth, as an oral medication or an oral thermometer. [EU] Panic: A state of extreme acute, intense anxiety and unreasoning fear accompanied by disorganization of personality function. [NIH] Psychiatry: The medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders. [NIH] Psychophysiology: The study of the physiological basis of human and animal behavior. [NIH]

Seeking Guidance 19

CHAPTER 2. SEEKING GUIDANCE Overview Some parents are comforted by the knowledge that a number of organizations dedicate their resources to helping people with dyslexia. These associations can become invaluable sources of information and advice. Many associations offer parent support, financial assistance, and other important services. Furthermore, healthcare research has shown that support groups often help people to better cope with their conditions.8 In addition to support groups, your child’s physician can be a valuable source of guidance and support. In this chapter, we direct you to resources that can help you find parent organizations and medical specialists. We begin by describing how to find associations and parent groups that can help you better understand and cope with your child’s condition. The chapter ends with a discussion on how to find a doctor that is right for your child.

Associations and Dyslexia In addition to associations or groups that your child’s doctor might recommend, we suggest that you consider the following list (if there is a fee for an association, you may want to check with your child’s insurance provider to find out if the cost will be covered):

Churches, synagogues, and other houses of worship might also have groups that can offer you the social support you need. 8

20 Dyslexia

·

International Dyslexia Association Address: International Dyslexia Association Chester Building, Suite 382, 8600 LaSalle Road, Baltimore, MD 21286-2044 Telephone: (410) 296-0232 Toll-free: (800) 222-3123 Fax: (410) 321-5069 Email: [email protected] Web Site: http://www.interdys.org Background: The International Dyslexia Association (IDA) is a voluntary not-for- profit international organization concerned with the complex issues of dyslexia. IDA membership consists of a variety of professionals in partnership with people with dyslexia and their families. Established in 1949, IDA is committed to helping affected individuals achieve their personal potential, strengthening their learning abilities, and removing educational, social, and cultural barriers to language acquisition and use. In addition, the IDA actively promotes effective teaching approaches and related clinical educational intervention strategies for affected people. The Association supports and encourages interdisciplinary study and research; facilitates the exploration of causes and early identification of dyslexia; and is committed to the wide dissemination of research-based knowledge on the condition. IDA provides a bibliography of published materials on dyslexia and a variety of educational brochures and referral services. Relevant area(s) of interest: Dyslexia

·

Learning Disabilities Association of America Address: Learning Disabilities Association of America 4156 Library Road, Pittsburgh, PA 15234-1349 Telephone: (412) 341-1515 Toll-free: (888) 575-7373 Fax: (412) 344-0224 Email: [email protected] Web Site: http://www.ldanatl.org/ Background: The Learning Disabilities Association of America (LDA) is a national not-for-profit voluntary and advocacy organization that was established in 1964 by a group of concerned parents. The only organization of its kind, the Association is dedicated to defining and finding solutions for the broad spectrum of learning disabilities (e.g., visual, auditory, motor, communication, and logical thinking problems). The Association has 50 state affiliates and more than 550 local chapters. Members include parents, professionals from many different disciplines,

Seeking Guidance 21

and other concerned citizens. The Association works directly with school systems in planning and implementing programs for the early identification and diagnosis of children with learning disabilities. The Learning Disabilities Association's Governmental Affairs Committee provides information and recommends action on pending legislation that may affect children with learning disabilities and/or their families. Educational materials produced by the Association include a newsletter published six times a year and numerous brochures, pamphlets, and books related to a variety of topics including adolescents with learning disabilities, LD assessment, and Attention Deficit Hyperactivity Disorder. LDA also publishes a biannual professional journal. Relevant area(s) of interest: Attention Deficit Hyperactivity Disorder, Dyslexia ·

March of Dimes Birth Defects Foundation Address: March of Dimes Birth Defects Foundation 1275 Mamaroneck Avenue, White Plains, NY 10605 Telephone: (914) 428-7100 Toll-free: (888) 663-4637 Fax: (914) 997-4763 Email: [email protected] Web Site: http://www.modimes.org Background: The March of Dimes Birth Defects Foundation is a national not-for- profit organization that was established in 1938. The mission of the Foundation is to improve the health of babies by preventing birth defects and infant mortality. Through the Campaign for Healthier Babies, the March of Dimes funds programs of research, community services, education, and advocacy. Educational programs that seek to prevent birth defects are important to the Foundation and to that end it produces a wide variety of printed informational materials and videos. The March of Dimes public health educational materials provide information encouraging health- enhancing behaviors that lead to a healthy pregnancy and a healthy baby. Relevant area(s) of interest: Autism, Cerebral Palsy, Dyslexia

·

National Center for Learning Disabilities Address: National Center for Learning Disabilities 381 Park Avenue South, Number 1401, New York, NY 10016 Telephone: (212) 545-7510 Toll-free: (888) 575-7373 Fax: (212) 545-9665

22 Dyslexia

Web Site: http://www.ncld.org Background: The National Center for Learning Disabilities (NCLD) is a national voluntary not-for-profit organization dedicated to improving the lives of millions of Americans affected by learning disabilities. Established in 1977, NCLD works toward several goals: advocating for increased research in learning disabilities; providing information and support to teaching professionals so that they are better equipped to assist individuals with learning disabilities; advocating in Washington, DC on behalf of individuals with learning disabilities; and raising public awareness and understanding of learning disabilities throughout the lifespan. In addition, NCLD disseminates information to the public, medical professionals, and individuals with learning disabilities and offers local and regional referrals through an information and referral service. The Center for Learning Disabilities produces a wide variety of educational and support materials including brochures, pamphlets, videotapes, a newsletter, an annual magazine entitled 'Their World,' and assorted reports. Relevant area(s) of interest: Attention Deficit Hyperactivity Disorder, Dyslexia

Finding More Associations There are a number of directories that list additional medical associations that you may find useful. While not all of these directories will provide different information than what is listed above, by consulting all of them, you will have nearly exhausted all sources for parent associations.

The National Health Information Center (NHIC) The National Health Information Center (NHIC) offers a free referral service to help people find organizations that provide information about dyslexia. For more information, see the NHIC’s Web site at http://www.health.gov/NHIC/ or contact an information specialist by calling 1-800-336-4797.

DIRLINE A comprehensive source of information on associations is the DIRLINE database maintained by the National Library of Medicine. The database

Seeking Guidance 23

comprises some 10,000 records of organizations, research centers, and government institutes and associations which primarily focus on health and biomedicine. DIRLINE is available via the Internet at the following Web site: http://dirline.nlm.nih.gov. Simply type in “dyslexia” (or a synonym) or the name of a topic, and the site will list information contained in the database on all relevant organizations.

The Combined Health Information Database Another comprehensive source of information on healthcare associations is the Combined Health Information Database. Using the “Detailed Search” option, you will need to limit your search to “Organizations” and “dyslexia”. Type the following hyperlink into your Web browser: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For publication date, select “All Years.” Then, select your preferred language and the format option “Organization Resource Sheet.” By making these selections and typing in “dyslexia” (or synonyms) into the “For these words:” box, you will only receive results on organizations dealing with dyslexia. You should check back periodically with this database since it is updated every 3 months. The National Organization for Rare Disorders, Inc. The National Organization for Rare Disorders, Inc. has prepared a Web site that provides, at no charge, lists of associations organized by specific medical conditions. You can access this database at the following Web site: http://www.rarediseases.org/cgi-bin/nord/searchpage. Select the option called “Organizational Database (ODB)” and type “dyslexia” (or a synonym) in the search box.

Online Support Groups In addition to support groups, commercial Internet service providers offer forums and chat rooms to discuss different illnesses and conditions. WebMDÒ, for example, offers such a service at their Web site: http://boards.webmd.com/roundtable. These online communities can help you connect with a network of people whose concerns are similar to yours. Online support groups are places where people can talk informally. If you read about a novel approach, consult with your child’s doctor or other

24 Dyslexia

healthcare providers, as the treatments or discoveries you hear about may not be scientifically proven to be safe and effective.

Finding Doctors All parents must go through the process of selecting a physician for their children with dyslexia. While this process will vary, the Agency for Healthcare Research and Quality makes a number of suggestions, including the following:9 ·

If your child is in a managed care plan, check the plan’s list of doctors first.

·

Ask doctors or other health professionals who work with doctors, such as hospital nurses, for referrals.

·

Call a hospital’s doctor referral service, but keep in mind that these services usually refer you to doctors on staff at that particular hospital. The services do not have information on the quality of care that these doctors provide.

·

Some local medical societies offer lists of member doctors. Again, these lists do not have information on the quality of care that these doctors provide.

Additional steps you can take to locate doctors include the following: ·

Check with the associations listed earlier in this chapter.

·

Information on doctors in some states is available on the Internet at http://www.docboard.org. This Web site is run by “Administrators in Medicine,” a group of state medical board directors.

·

The American Board of Medical Specialties can tell you if your child’s doctor is board certified. “Certified” means that the doctor has completed a training program in a specialty and has passed an exam, or “board,” to assess his or her knowledge, skills, and experience to provide quality patient care in that specialty. Primary care doctors may also be certified as specialists. The AMBS Web site is located at 10 http://www.abms.org/newsearch.asp. You can also contact the ABMS by phone at 1-866-ASK-ABMS.

·

You can call the American Medical Association (AMA) at 800-665-2882 for information on training, specialties, and board certification for many

This section is adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm. While board certification is a good measure of a doctor’s knowledge, it is possible to receive quality care from doctors who are not board certified. 9

10

Seeking Guidance 25

licensed doctors in the United States. This information also can be found in “Physician Select” at the AMA’s Web site: http://www.amaassn.org/aps/amahg.htm. If the previous sources did not meet your needs, you may want to log on to the Web site of the National Organization for Rare Disorders (NORD) at http://www.rarediseases.org/. NORD maintains a database of doctors with expertise in various rare medical conditions. The Metabolic Information Network (MIN), 800-945-2188, also maintains a database of physicians with expertise in various metabolic diseases.

Finding a Neurologist The American Academy of Neurology allows you to search for member neurologists by name or location. To use this service, go to http://www.aan.com/, select “Find a Neurologist” from the toolbar. Enter your search criteria, and click “Search.” To find out more information on a particular neurologist, click on the physician’s name. If the previous sources did not meet your needs, you may want to log on to the Web site of the National Organization for Rare Disorders (NORD) at http://www.rarediseases.org/. NORD maintains a database of doctors with expertise in various rare diseases. The Metabolic Information Network (MIN), 800-945-2188, also maintains a database of physicians with expertise in various metabolic diseases.

Selecting Your Doctor11 When you have compiled a list of prospective doctors, call each of their offices. First, ask if the doctor accepts your child’s health insurance plan and if he or she is taking new patients. If the doctor is not covered by your child’s plan, ask yourself if you are prepared to pay the extra costs. The next step is to schedule a visit with your first choice. During the first visit you will have the opportunity to evaluate your child’s doctor and to find out if your child feels comfortable with him or her.

11 This

section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.

26 Dyslexia

Working with Your Child’s Doctor12 Research has shown that parents who have good relationships with their children’s doctors tend to be more satisfied with their children’s care. Here are some tips to help you and your child’s doctor become partners: ·

You know important things about your child’s symptoms and health history. Tell the doctor what you think he or she needs to know.

·

Always bring any medications your child is currently taking with you to the appointment, or you can bring a list of your child’s medications including dosage and frequency information. Talk about any allergies or reactions your child has had to medications.

·

Tell your doctor about any natural or alternative medicines your child is taking.

·

Bring other medical information, such as x-ray films, test results, and medical records.

·

Ask questions. If you don’t, the doctor will assume that you understood everything that was said.

·

Write down your questions before the doctor’s visit. List the most important ones first to make sure that they are addressed.

·

Ask the doctor to draw pictures if you think that this will help you and your child understand.

·

Take notes. Some doctors do not mind if you bring a tape recorder to help you remember things, but always ask first.

·

Take information home. Ask for written instructions. Your child’s doctor may also have brochures and audio and videotapes on dyslexia.

By following these steps, you will enhance the relationship you and your child have with the physician.

This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.

12

Seeking Guidance 27

Broader Health-Related Resources In addition to the references above, the NIH has set up guidance Web sites that can help parents find healthcare professionals. These include:13 ·

Caregivers: http://www.nlm.nih.gov/medlineplus/caregivers.html

·

Choosing a Doctor or Healthcare Service: http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareserv ice.html

·

Hospitals and Health Facilities: http://www.nlm.nih.gov/medlineplus/healthfacilities.html

Vocabulary Builder The following vocabulary builder provides definitions of words used in this chapter that have not been defined in previous chapters: Cerebral: Of or pertaining of the cerebrum or the brain. [EU] Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU]

You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html.

13

Clinical Trials 29

CHAPTER 3. CLINICAL TRIALS AND DYSLEXIA Overview Very few medical conditions have a single treatment. The basic treatment guidelines that your child’s physician has discussed with you, or those that you have found using the techniques discussed in Chapter 1, may provide you with all that you will require. For some patients, current treatments can be enhanced with new or innovative techniques currently under investigation. In this chapter, we will describe how clinical trials work and show you how to keep informed of trials concerning dyslexia.

What Is a Clinical Trial?14 Clinical trials involve the participation of people in medical research. Most medical research begins with studies in test tubes and on animals. Treatments that show promise in these early studies may then be tried with people. The only sure way to find out whether a new treatment is safe, effective, and better than other treatments for dyslexia is to try it on patients in a clinical trial.

The discussion in this chapter has been adapted from the NIH and the NEI: www.nei.nih.gov/netrials/ctivr.htm.

14

30 Dyslexia

What Kinds of Clinical Trials Are There? Clinical trials are carried out in three phases: ·

Phase I. Researchers first conduct Phase I trials with small numbers of patients and healthy volunteers. If the new treatment is a medication, researchers also try to determine how much of it can be given safely.

·

Phase II. Researchers conduct Phase II trials in small numbers of patients to find out the effect of a new treatment on dyslexia.

·

Phase III. Finally, researchers conduct Phase III trials to find out how new treatments for dyslexia compare with standard treatments already being used. Phase III trials also help to determine if new treatments have any side effects. These trials--which may involve hundreds, perhaps thousands, of people--can also compare new treatments with no treatment. How Is a Clinical Trial Conducted?

Various organizations support clinical trials at medical centers, hospitals, universities, and doctors’ offices across the United States. The “principal investigator” is the researcher in charge of the study at each facility participating in the clinical trial. Most clinical trial researchers are medical doctors, academic researchers, and specialists. The “clinic coordinator” knows all about how the study works and makes all the arrangements for your child’s visits. All doctors and researchers who take part in the study on dyslexia carefully follow a detailed treatment plan called a protocol. This plan fully explains how the doctors will treat your child in the study. The “protocol” ensures that all patients are treated in the same way, no matter where they receive care. Clinical trials are controlled. This means that researchers compare the effects of the new treatment with those of the standard treatment. In some cases, when no standard treatment exists, the new treatment is compared with no treatment. Patients who receive the new treatment are in the treatment group. Patients who receive a standard treatment or no treatment are in the “control” group. In some clinical trials, patients in the treatment group get a new medication while those in the control group get a placebo. A placebo is a harmless substance, a “dummy” pill, that has no effect on dyslexia. In other clinical trials, where a new surgery or device (not a medicine) is being tested, patients in the control group may receive a “sham treatment.” This

Clinical Trials 31

treatment, like a placebo, has no effect on dyslexia and will not harm your child. Researchers assign patients “randomly” to the treatment or control group. This is like flipping a coin to decide which patients are in each group. If you choose to have your child participate in a clinical trial, you will not know which group he or she will be appointed to. The chance of any patient getting the new treatment is about 50 percent. You cannot request that your child receive the new treatment instead of the placebo or “sham” treatment. Often, you will not know until the study is over whether your child has been in the treatment group or the control group. This is called a “masked” study. In some trials, neither doctors nor patients know who is getting which treatment. This is called a “double masked” study. These types of trials help to ensure that the perceptions of the participants or doctors will not affect the study results. Natural History Studies Unlike clinical trials in which patient volunteers may receive new treatments, natural history studies provide important information to researchers on how dyslexia develops over time. A natural history study follows patient volunteers to see how factors such as age, sex, race, or family history might make some people more or less at risk for dyslexia. A natural history study may also tell researchers if diet, lifestyle, or occupation affects how a medical condition develops and progresses. Results from these studies provide information that helps answer questions such as: How fast will a medical condition usually progress? How bad will the condition become? Will treatment be needed? What Is Expected of Your Child in a Clinical Trial? Not everyone can take part in a clinical trial for a specific medical condition. Each study enrolls patients with certain features or eligibility criteria. These criteria may include the type and stage of the condition, as well as, the age and previous treatment history of the patient. You or your child’s doctor can contact the sponsoring organization to find out more about specific clinical trials and their eligibility criteria. If you would like your child to participate in a clinical trial, your child’s doctor must contact one of the trial’s investigators and provide details about his or her diagnosis and medical history.

32 Dyslexia

When participating in a clinical trial, your child may be required to have a number of medical tests. Your child may also need to take medications and/or undergo surgery. Depending upon the treatment and the examination procedure, your child may be required to receive inpatient hospital care. He or she may have to return to the medical facility for followup examinations. These exams help find out how well the treatment is working. Follow-up studies can take months or years. However, the success of the clinical trial often depends on learning what happens to patients over a long period of time. Only patients who continue to return for follow-up examinations can provide this important long-term information.

Recent Trials on Dyslexia The National Institutes of Health and other organizations sponsor trials on various medical conditions. Because funding for research goes to the medical areas that show promising research opportunities, it is not possible for the NIH or others to sponsor clinical trials for every medical condition at all times. The following lists recent trials dedicated to dyslexia.15 If the trial listed by the NIH is still recruiting, your child may be eligible. If it is no longer recruiting or has been completed, then you can contact the sponsors to learn more about the study and, if published, the results. Further information on the trial is available at the Web site indicated. Please note that some trials may no longer be recruiting patients or are otherwise closed. Before contacting sponsors of a clinical trial, consult with your child’s physician who can help you determine if your child might benefit from participation. ·

Brain Imaging of Childhood Onset Psychiatric Disorders, Endocrine Disorders and Healthy Children Condition(s): Autoimmune Disease; Congenital Adrenal Hyperplasia; Healthy; Mental Disorder Diagnosed in Childhood; Neurologic Manifestations Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Mental Health (NIMH) Purpose - Excerpt: Magnetic Resonance Imaging (MRI) unlike X-rays and CT-scans does not use radiation to create a picture. MRI use as the name implies, magnetism to create pictures with excellent anatomical resolution. Functional MRIs are diagnostic tests that allow doctors to not only view anatomy, but physiology and function. It is for these reasons that MRIs are excellent methods for studying the brain. In this study,

15

These are listed at www.ClinicalTrials.gov.

Clinical Trials 33

researchers will use MRIs to assess brain anatomy and function in normal volunteers and patients with a variety of childhood onset psychiatric disorders. The disorders include attention deficit disorder, autism, congenital adrenal hyperplasia, childhood-onset schizophrenia, dyslexia, multidimesional impairment syndrome, obsessive compulsive disorder, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection (PANDAS), stuttering, Sydenham's chorea, and Tourette's syndrome. Results of the MRIs showing the anatomy of the brain and brain function will be compared across age, sex (gender), and diagnostic groups. Correlations between brain and behavioral measures will be examined for normal and clinical populations. Study Type: Observational Contact(s): Maryland; National Institute of Mental Health (NIMH), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800-411-1222 [email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001246;jsessionid=F0A507 3919F5507284E605B905A60177

Benefits and Risks16 What Are the Benefits of Participating in a Clinical Trial? If you are considering a clinical trial, it is important to realize that your child’s participation can bring many benefits: ·

A new treatment could be more effective than the current treatment for dyslexia. Although only half of the participants in a clinical trial receive the experimental treatment, if the new treatment is proved to be more effective and safer than the current treatment, then those patients who did not receive the new treatment during the clinical trial may be among the first to benefit from it when the study is over.

·

If the treatment is effective, then it may improve your child’s health.

·

Clinical trial patients receive the highest quality of medical care. Experts watch them closely during the study and may continue to follow them after the study is over.

This section has been adapted from ClinicalTrials.gov, a service of the National Institutes of Health: http://www.clinicaltrials.gov/ct/gui/c/a1r/info/whatis?JServSessionIdzone_ct=9jmun6f2 91. 16

34 Dyslexia

·

People who take part in trials contribute to scientific discoveries that may help others with dyslexia. In cases where certain medical conditions run in families, your child’s participation may lead to better care or prevention for you and other family members. The Informed Consent

Once you agree to have your child take part in a clinical trial, you will be asked to sign an “informed consent.” This document explains a clinical trial’s risks and benefits, the researcher’s expectations of you and your child, and your child’s rights as a patient. What Are the Risks? Clinical trials may involve risks as well as benefits. Whether or not a new treatment will work cannot be known ahead of time. There is always a chance that a new treatment may not work better than a standard treatment. There is also the possibility that it may be harmful. The treatment your child receives may cause side effects that are serious enough to require medical attention. How Is Your Child’s Safety Protected? Clinical trials can raise fears of the unknown. Understanding the safeguards that protect your child can ease some of these fears. Before a clinical trial begins, researchers must get approval from their hospital’s Institutional Review Board (IRB), an advisory group that makes sure a clinical trial is designed to protect your child’s safety. During a clinical trial, doctors will closely watch your child to see if the treatment is working and if he or she is experiencing any side effects. All the results are carefully recorded and reviewed. In many cases, experts from the Data and Safety Monitoring Committee carefully monitor each clinical trial and can recommend that a study be stopped at any time. Your child will only be asked to participate in a clinical trial as a volunteer with your informed consent.

Clinical Trials 35

What Are Your Child’s Rights in a Clinical Trial? If your child is eligible for a clinical trial, you will be given information to help you decide whether or not you want him or her to participate. You and your child have the right to: ·

Information on all known risks and benefits of the treatments in the study.

·

Know how the researchers plan to carry out the study, for how long, and where.

·

Know what is expected of your child.

·

Know any costs involved for you or your child’s insurance provider.

·

Know before any of your child’s medical or personal information is shared with other researchers involved in the clinical trial.

·

Talk openly with doctors and ask any questions.

After your child joins a clinical trial, you and your child have the right to: ·

Leave the study at any time. Participation is strictly voluntary.

·

Receive any new information about the new treatment.

·

Continue to ask questions and get answers.

·

Maintain your child’s privacy. Your child’s name will not appear in any reports based on the study.

·

Know whether your child participated in the treatment group or the control group (once the study has been completed).

What about Costs? In some clinical trials, the research facility pays for treatment costs and other associated expenses. You or your child’s insurance provider may have to pay for costs that are considered standard care. These things may include inpatient hospital care, laboratory and other tests, and medical procedures. You also may need to pay for travel between your home and the clinic. You should find out about costs before committing your child to participation in the trial. If your child has health insurance, find out exactly what it will cover. If your child does not have health insurance, or if your child’s insurance policy will not cover care, talk to the clinic staff about other options for covering the costs.

36 Dyslexia

What Questions Should You Ask before Your Child Participates in a Clinical Trial? Questions you should ask when deciding whether or not to enroll your child in a clinical trial include the following: ·

What is the purpose of the clinical trial?

·

What are the standard treatments for dyslexia? Why do researchers think the new treatment may be better? What is likely to happen to my child with or without the new treatment?

·

What tests and treatments will my child need? Will my child need surgery? Medication? Hospitalization?

·

How long will the treatment last? How often will my child have to come back for follow-up exams?

·

What are the treatment’s possible benefits to my child’s condition? What are the short- and long-term risks? What are the possible side effects?

·

Will the treatment be uncomfortable? Will it make my child sick? If so, for how long?

·

How will my child’s health be monitored?

·

Where will my child need to go for the clinical trial?

·

How much will it cost to participate in the study? What costs are covered by the study? How much will my child’s health insurance cover?

·

Who will be in charge of my child’s care?

·

Will taking part in the study affect my child’s daily life?

·

How does my child feel about taking part in a clinical trial? Will other family members benefit from my child’s contributions to new medical knowledge?

Keeping Current on Clinical Trials Various government agencies maintain databases on trials. The U.S. National Institutes of Health, through the National Library of Medicine, has developed ClinicalTrials.gov to provide the public and physicians with current information about clinical research across the broadest number of medical conditions. The site was launched in February 2000 and currently contains approximately 5,700 clinical studies in over 59,000 locations worldwide, with most studies being conducted in the United States. ClinicalTrials.gov

Clinical Trials 37

receives about 2 million hits per month and hosts approximately 5,400 visitors daily. To access this database, simply go to their Web site (www.clinicaltrials.gov) and search by “dyslexia” (or synonyms). While ClinicalTrials.gov is the most comprehensive listing of NIH-supported clinical trials available, not all trials are in the database. The database is updated regularly, so clinical trials are continually being added. The following is a list of specialty databases affiliated with the National Institutes of Health that offer additional information on trials: ·

For clinical studies at the Warren Grant Magnuson Clinical Center located in Bethesda, Maryland, visit their Web site: http://clinicalstudies.info.nih.gov/

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For clinical studies conducted at the Bayview Campus in Baltimore, Maryland, visit their Web site: http://www.jhbmc.jhu.edu/studies/index.html

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For trials on neurological disorders and stroke, visit and search the Web site sponsored by the National Institute of Neurological Disorders and Stroke of the NIH: http://www.ninds.nih.gov/funding/funding_opportunities.htm#Clinica l_Trials

General References The following references describe clinical trials and experimental medical research. They have been selected to ensure that they are likely to be available from your local or online bookseller or university medical library. These references are usually written for healthcare professionals, so you may consider consulting with a librarian or bookseller who might recommend a particular reference. The following includes some of the most readily available references (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·

A Guide to Patient Recruitment : Today’s Best Practices & Proven Strategies by Diana L. Anderson; Paperback - 350 pages (2001), CenterWatch, Inc.; ISBN: 1930624115; http://www.amazon.com/exec/obidos/ASIN/1930624115/icongroupinterna

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A Step-By-Step Guide to Clinical Trials by Marilyn Mulay, R.N., M.S., OCN; Spiral-bound - 143 pages Spiral edition (2001), Jones & Bartlett Pub; ISBN: 0763715697; http://www.amazon.com/exec/obidos/ASIN/0763715697/icongroupinterna

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The CenterWatch Directory of Drugs in Clinical Trials by CenterWatch; Paperback - 656 pages (2000), CenterWatch, Inc.; ISBN: 0967302935; http://www.amazon.com/exec/obidos/ASIN/0967302935/icongroupinterna

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The Complete Guide to Informed Consent in Clinical Trials by Terry Hartnett (Editor); Paperback - 164 pages (2000), PharmSource Information Services, Inc.; ISBN: 0970153309; http://www.amazon.com/exec/obidos/ASIN/0970153309/icongroupinterna

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Dictionary for Clinical Trials by Simon Day; Paperback - 228 pages (1999), John Wiley & Sons; ISBN: 0471985961; http://www.amazon.com/exec/obidos/ASIN/0471985961/icongroupinterna

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Extending Medicare Reimbursement in Clinical Trials by Institute of Medicine Staff (Editor), et al; Paperback 1st edition (2000), National Academy Press; ISBN: 0309068886; http://www.amazon.com/exec/obidos/ASIN/0309068886/icongroupinterna

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Handbook of Clinical Trials by Marcus Flather (Editor); Paperback (2001), Remedica Pub Ltd; ISBN: 1901346293; http://www.amazon.com/exec/obidos/ASIN/1901346293/icongroupinterna

Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Anatomical: Pertaining to anatomy, or to the structure of the organism. [EU] Chorea: The ceaseless occurrence of a wide variety of rapid, highly complex, jerky movements that appear to be well coordinated but are performed involuntarily. [EU] Hyperplasia: The abnormal multiplication or increase in the number of normal cells in normal arrangement in a tissue. [EU] Psychiatric: Pertaining to or within the purview of psychiatry. [EU] Schizophrenia: A severe emotional disorder of psychotic depth characteristically marked by a retreat from reality with delusion formation, hallucinations, emotional disharmony, and regressive behavior. [NIH]

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PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL

ABOUT PART II In Part II, we introduce you to additional resources and advanced research on dyslexia. All too often, parents who conduct their own research are overwhelmed by the difficulty in finding and organizing information. The purpose of the following chapters is to provide you an organized and structured format to help you find additional information resources on dyslexia. In Part II, as in Part I, our objective is not to interpret the latest advances on dyslexia or render an opinion. Rather, our goal is to give you access to original research and to increase your awareness of sources you may not have already considered. In this way, you will come across the advanced materials often referred to in pamphlets, books, or other general works. Once again, some of this material is technical in nature, so consultation with a professional familiar with dyslexia is suggested.

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CHAPTER 4. STUDIES ON DYSLEXIA Overview Every year, academic studies are published on dyslexia or related conditions. Broadly speaking, there are two types of studies. The first are peer reviewed. Generally, the content of these studies has been reviewed by scientists or physicians. Peer-reviewed studies are typically published in scientific journals and are usually available at medical libraries. The second type of studies is non-peer reviewed. These works include summary articles that do not use or report scientific results. These often appear in the popular press, newsletters, or similar periodicals. In this chapter, we will show you how to locate peer-reviewed references and studies on dyslexia. We will begin by discussing research that has been summarized and is free to view by the public via the Internet. We then show you how to generate a bibliography on dyslexia and teach you how to keep current on new studies as they are published or undertaken by the scientific community.

The Combined Health Information Database The Combined Health Information Database summarizes studies across numerous federal agencies. To limit your investigation to research studies and dyslexia, you will need to use the advanced search options. First, go to http://chid.nih.gov/index.html. From there, select the “Detailed Search” option (or go directly to that page with the following hyperlink: http://chid.nih.gov/detail/detail.html). The trick in extracting studies is found in the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the

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format option “Journal Article.” At the top of the search form, select the number of records you would like to see (we recommend 100) and check the box to display “whole records.” We recommend that you type in “dyslexia” (or synonyms) into the “For these words:” box. Consider using the option “anywhere in record” to make your search as broad as possible. If you want to limit the search to only a particular field, such as the title of the journal, then select this option in the “Search in these fields” drop box. The following is a sample of what you can expect from this type of search: ·

Reconceptualizing Reading and Dyslexia Source: Journal of Childhood Communication Disorders. 16(1): 23-35. 1994. Summary: Among reading professionals, a basic controversy exists between those who conceptualize proficient reading as a matter of identifying words automatically and fluently and those who conceptualize proficient reading as a matter of orchestrating various reading strategies to construct meaning. The authors of this article explore this controversy and further explain and challenge the wordidentification view of reading and the resultant assumption that anyone who has difficulty reading words is dyslexic. The authors argue that reconsidering the nature of proficient reading leads to the discovery of the reading strengths of readers who have difficulty with word identification but who nevertheless control the needed strategies to construct meaning from appropriate texts. Their argument is illustrated by a case study of Erica, who was diagnosed as dyslexic in the first grade. Retrospective miscue analysis, a tutorial technique used with Erica, is also briefly explained. 4 figures. 54 references. (AA-M).

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Dyslexia: A Developmental Language Disorder Source: Child: Care, Health, and Development. 26(5): 55-80. September 2000. Contact: Available from Blackwell Science Ltd. Journal Customer Services, Osney Mead, Oxford OX2 OEL, United Kingdom. E-mail: [email protected]. Summary: The acquisition of literacy in an alphabetic script such as English makes heavy demands on linguistic skills. The relation between spoken and written language, however, is far from straightforward. This article reviews research that suggests that phonological processing skills are crucial in the translation of symbols to sounds, and the development of rapid and automatic decoding skills. The author examines studies indicating that children whose phonological processing skills are

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compromised in some way are at risk of experiencing difficulties in the acquisition of literacy. The author notes that these studies support the suggestion that dyslexia lands on the continuum of developmental language disorders. The author relates theory to practice and discusses the responsibilities of health care professionals in relation to the early identification of dyslexia. The author focuses on the responsibilities of speech and language therapy services in the care and management of children with dyslexia. 113 references. ·

Defining Dyslexia as a Developmental Language Disorder: An Expanded View Source: Topics in Language Disorders. 16(2): 14-29. February 1996. Summary: Dyslexia has recently been defined as a developmental language disorder. This article reviews the language basis of dyslexia and the current research that supports and extends it. Research continues to indicate that phonological processing deficits lie at the core of dyslexia. However, recent evidence also suggests that these deficits may underlie the difficulties of many poor readers who do not meet the traditional definitions of dyslexia. Rather than collapse individuals with dyslexia and those with low achievement into a single diagnostic category, the author argues that these groups or groups like them may be differentiated on the basis of higher-level language abilities. The role of higher-level language functioning and phonological processing in reading is further considered in an expanded view of the language basis of reading disabilities. The implications this view has for the early identification and remediation of reading disabilities are also presented. 1 figure. 152 references. (AA-M).

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Learning Disabilities and Dyslexia Source: ASHA. American Speech-Language-Hearing Association. 37(1): 63-64. January 1995. Contact: Available from American Speech-Language-Hearing Association (ASHA). Product Sales, 10801 Rockville Pike, Rockville, MD 20852. (888) 498-6699. TTY (301) 897-0157. Website: www.asha.org. Summary: This issue of Let's Talk, an insert from the ASHA Journal, focuses on learning disabilities and dyslexia. Through the story of a youngster with learning difficulties, the author describes how learning disabilities are usually a continuation of specific learning problems from early childhood. Topics covered include the symptoms and characteristics of learning disabilities, a definition of dyslexia and its related problems, early childhood difficulties with speech sound

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discrimination, the importance of early attention and intervention with any suspected learning problems, the type of evaluation performed by a speech language pathologist, and language treatment options. One sidebar presents the contact information for a number of organizations related to learning disabilities and/or dyslexia. The insert is designed for professionals to photocopy and distribute to their clients. ·

Genetic Research Yields Clues to Predicting Incidence of Dyslexia Source: Advance for Speech-Language Pathologists and Audiologists. 5(2): 7. January 16, 1995. Contact: Available from Merion Publications, Inc. 650 Park Avenue West, King of Prussia, PA 19406. (800) 355-1088. Summary: This article reports on work in which a group of researchers have discovered the location of a possible gene for dyslexia that may one day help scientists predict which children are likely to develop the disorder. The research project evolved to address the abnormally high prevalence rate of dyslexia in families of children diagnosed with the disorder. Topics covered include familial transmission in dyslexia; research on familial connections to reading disorders; autosomal dominant inheritance patterns; the identification of the potentially responsible chromosome; reading disabilities and asthma and/or migraines; and research studies on fraternal twins investigating the prevalence of reading disability when at least one twin exhibited reading problems. The article concludes with the addresses and telephone numbers of the researchers interviewed.

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(Dyslexia) Source: Perspectives: The Orton Dyslexia Society. 20(3): 16-17. Summer 1994. Summary: This article discusses at what age children are tested for dyslexia and the assessment instruments used. The author notes that typical psychoeducational tests are not designed to identify dyslexia; rather, diagnosticians must administer formal tests designed to measure oral and written, expressive and receptive language. The author describes the newly revised Detroit Tests of Learning Aptitude that are used to identify strengths and weaknesses in dyslexics. The author includes a list of suggested test batteries that measure various areas of psycholinguistic processing. A final section discusses the uses of testing results to determine eligibilities for special services and remediation programs.

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Researchers: Dyslexia May Be Caused by Flawed Brain Circuitry Source: Advance for Speech-Language Pathologists and Audiologists. 4(27): 5, 38. November 7, 1994. Contact: Available from Merion Publications, Inc. 650 Park Avenue West, King of Prussia, PA 19406. (800) 355-1088. Summary: This article reports on new investigations as to the role a brain structure abnormality plays in the processing of rapid auditory information, findings that may unlock clues to understanding dyslexia. The new finding suggests that dyslexia may not be solely a visual problem, as many researchers initially proposed; instead, it may be the result of a flaw in a specific brain circuit that processes rapidly flowing auditory information. The author discusses the research that located the brain flaw; timing flaws and reading trouble; behavioral studies of individuals with language and learning disabilities; the historical perspective on dyslexia; studies on the plasticity of the brain; relevant animal studies; and how this information might lead to new treatment approaches.

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Dyslexia May Have Auditory Roots Source: Hearing Journal. 47(10): 8. October 1994. Summary: This very brief article reports on recent research that suggests that dyslexia may stem originally from a malfunction in the brain's ability to process rapidly flowing auditory information. The research showed that in dyslexic children, the left brain hemisphere usually contains fewer than normal of the type of cell that specializes in comprehending rapid sounds. This inability to hear many common components of speech leads, the study found, to a delay in these children's ability to speak and understand spoken language. The article also mentions some theoretical treatment options that could be based on these new findings. (AA-M).

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Biology of Developmental Dyslexia Source: Journal of the American Medical Association. 268(7): 912-915. August 1992. Summary: Dyslexia is a relatively common disorder and when it is severe, it persists into adulthood. Evidence suggests that females are affected nearly as frequently as males. Neuropsychological studies characterize dyslexia as a language disorder that involves phonological deficits. Educational therapy aimed at direct improvement of reading skill constitutes the best available treatment. Variable genetic transmission leading to a final common pathway appears to involve

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deficits in phonological coding. Postmortem studies and in vivo anatomical imaging suggest altered asymmetry of structures in the temporal lobes, and neuroimaging with positron emission tomography indicates left temporoparietal dysfunction in particular. Neuroimaging is providing a window into the brain that promises further insights into the biology of dyslexia (AA).

Federally-Funded Research on Dyslexia The U.S. Government supports a variety of research studies relating to dyslexia and associated conditions. These studies are tracked by the Office of Extramural Research at the National Institutes of Health.17 CRISP (Computerized Retrieval of Information on Scientific Projects) is a searchable database of federally-funded biomedical research projects conducted at universities, hospitals, and other institutions. Visit the CRISP Web site at http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket. You can perform targeted searches by various criteria including geography, date, as well as topics related to dyslexia and related conditions. For most of the studies, the agencies reporting into CRISP provide summaries or abstracts. As opposed to clinical trial research using patients, many federally-funded studies use animals or simulated models to explore dyslexia and related conditions. In some cases, therefore, it may be difficult to understand how some basic or fundamental research could eventually translate into medical practice. The following sample is typical of the type of information found when searching the CRISP database for dyslexia: ·

Project Title: Brain Morphology and Neurolinguistic Ability in Dyslexia Principal Investigator & Institution: Hynd, George W.; Research Professor & Associate Dean; School of Professional Studies; University of Georgia Athens, Ga 30602 Timing: Fiscal Year 2000; Project Start 1-AUG-1993; Project End 0-NOV2003

17 Healthcare projects are funded by the National Institutes of Health (NIH), Substance Abuse and Mental Health Services (SAMHSA), Health Resources and Services Administration (HRSA), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDCP), Agency for Healthcare Research and Quality (AHRQ), and Office of Assistant Secretary of Health (OASH).

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Summary: The overall goal of this twice revised competitive continuation proposal is to further our investigation as to the relationship between variation in patterns in normal brain morphology and the neurolinguistic deficits documented as characterizing children and adolescents with developmental dyslexia. Based on the research that resulted from our first three years of funding, we are particularly interested in potential familial relationships that may exist in patterns of normal variation in brain morphology among dyslexics and their affected and non-affected biological parent. Significant revisions have been more accomplished and new data regarding gyral morphology patterns and their relationship to neurolinguistic ability are provided. In a series of on-going studies, we have (1) established that neurolinguistic and phonological coding deficits seem to characterize the core deficits in our dyslexic population, even when comorbid psychopathology exists (such as ADHD), (2) that reliable measurements ( r greater than .90) of the temporal and parietal banks of the bilateral planum temporale both correlate with and are theoretically related to neurolinguistic deficits and impoverished reading achievement, (3) that gyral morphology patterns in the posterior perisylvian region may be significantly different in some dyslexic individuals, and (4) that there may be a familial link in gyral morphology pattern which may in turn be related to transmission of deficient neurolinguistic processes so commonly reported in dyslexics. Based on the results of our studies to date, we wish to continue our examination of brain morphology variation in developmental dyslexia and its relationship to deficient neurolinguistic and phonological-orthographic coding processes with a particular eye on familial associations. Specifically, we intend to examine intact families (with a diagnosed dyslexic child) and an equal number of intact families with no history of any learning or behavioral problems and examine the familial link of brain morphology variation of the planum temporale, including sulcal morphology patterns, and neurolinguistic ability. Our studies to date would suggest that symmetry/reversed asymmetry (L=R;L less than R) of the plana, or Type II sulcal morphology in the left hemisphere, would be associated with significantly below average neurolinguistic and phonological processes in dyslexics and their affected parent. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Cognitive/Linguistic Factors in Acquired Dyslexia Principal Investigator & Institution: Berndt, Rita S.; Professor; Neurology; University of Maryland Balt Prof School Professional Schools Baltimore, Md 21201

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Timing: Fiscal Year 2000; Project Start 1-AUG-1989; Project End 0-JUN2002 Summary: Disruption of the ability to read is a common and debilitating consequence of focal brain injury, suCh as stroke. The "acquired" dyslexias, occurring in premorbidly literate adults, can take a number of distinct forms that appear to reflect selective impairment of different aspects of the cognitive operations that normally support reading. The long-term goal of this project is to develop a model of reading that describes those cognitive operations and their interactions. Such a model would have a variety of applications. If specific dyslexic symptoms can be interpreted as arising from identifiable processing deficits within a model, then attempts to remediate symptoms can be focused on the responsible representation or process. Moreover, discrete components of processing that are identified through studies of the patients with neurogenic reading impairments would be likely to be the components that will ultimately prove to be related to identifiable neurobiological processes. The Specific Aims for the next project period continue investigations of the relationships among the distinct processing components that are hypothesized to be involved in reading. Experiments are proposed to extend the focus to investigate the contribution o syntactic and semantic manipulations on reading and writing performance. Three methodological approaches will be used, as in the previous project period. The primary method will be the testing of patients with acquired dyslexia and control subjects on an experimental battery designed to identify selective impairments within hypothesized processing components. A second methodological approach to be continued is the development of targeted treatment studies, in which attempts are made to change specific aspects of patients' processing abilities so that th effects of change on other components can be assessed. A third approach is the development of an implemented computational version of the guiding processing model, so that specific hypothese about the time-course and interactions of specific components can be explored. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Cognitively Based Treatments of Acquired Dyslexias Principal Investigator & Institution: Friedman, Rhonda B.; Professor; Neurology; Georgetown University 37Th and O Sts Nw Washington, Dc 20057 Timing: Fiscal Year 2002; Project Start 1-MAY-1997; Project End 1-JUL2007 Summary: (provided by applicant): Acquired disorders of reading (acquired dyslexia) are common in patients with aphasia subsequent to

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left hemisphere stroke. Even when language functions recover sufficiently to enable the patient to return to work, an unrecovered dyslexia often interferes significantly with job performance. Patients who cannot return to work may be left with little to occupy their time; the ability to read for pleasure could make a significant difference in their quality of life. The purpose of this project is to test a set of therapy programs for the treatment of acquired dyslexia, based upon a cognitive neuropsychological model of reading. A comprehensive and detailed battery of reading and reading-related tests is used to determine the underlying impairment causing the reading deficit in each patient. This proposal focuses on three specific deficits: 1) impaired access to the visual word form from the visual modality (pure dyslexia); 2) impaired orthographic-phonologic connections (phonologic/deep dyslexia); 3) poor lector/affixed word reading in text (phonological text alexia)). A set of experimental treatment programs has been devised for each of these reading deficits. These therapy programs derive in part from cognitive models of reading, in part from differences in general approach to treatment, and in part from the results of previous treatment studies. A set of general external probe tests are administered to all subjects before and after treatment There are additional external probes for each of the three deficit types, consisting of a list of words targeted for improvement but never trained. Measures include both accuracy and speed of reading. Group studies will examine the efficacy of treatments that have been successful in prior single case studies, and in some instances will compare the efficacy of two treatments with each other. Single case studies will be implemented to explore new treatment protocols or variations on old treatment protocols. Treatment programs are evaluated for efficacy by comparing the accuracy and speed of reading the treatment-specific probe words pre- and post-treatment, and examining performance on the general external probes pre- and post-treatment. The results of this project will increase our understanding of reading and its breakdown, leading to more effective methods of teaching reading to both normal and developmentally dyslexic children, in addition to providing a scientific basis for the choice of effective intervention strategies for the treatment of acquired dyslexia. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: FMRI Of Phonological and Sensory Processing in Dyslexia Principal Investigator & Institution: Eden, Guinevere F.; Associate Professor; None; Georgetown University 37Th and O Sts Nw Washington, Dc 20057

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Timing: Fiscal Year 2000; Project Start 1-MAR-1999; Project End 9-FEB2004 Summary: Developmental dyslexia is a common disorder of reading whose etiology is poorly understood. The behavioral manifestations of dyslexia are complex, involving abnormalities in both language and visual perception. It is well known that reading ability is correlated with measures of phonological awareness. Because dyslexics exhibit abnormalities in various forms of phonological processing, this has been suggested as an explanation for their reading disability. While less clinically evident, specific visual processing problems have also been identified in dyslexia and it has been suggested that they contribute to the observed reading disorder. Surprisingly, few studies have attempted to reconcile these two apparently disparate views concerning the etiology of this disorder. Recent advances in functional neuroimaging techniques now provide a way to identify the regional specialization and spatial congruence of the cortical areas engaged in visual sensory and language processing. These new techniques make possible novel investigations of the pathophysiology of the reading disorder developmental dyslexia. We propose a series of integrated studies combining behavioral measures with functional magnetic resonance imaging (fMRI) to investigate the relationship between the disorders in phonological processing and visual motion processing in dyslexia. In the proposed research, functional maps obtained from control subjects during reading tasks will be compared to those obtained in individuals with dyslexia. Our central hypothesis posits the existence of a disorder in temporal information processing in dyslexia that exhibits itself in deficits in both sensory and language processing. In our previous work we have demonstrated a sensory deficit specific to the visual motion processing system. Using similar techniques we now propose to extend these investigations and relate them to dysfunction of phonological processing mechanisms. We hypothesize that we will identify spatial overlap in the cortical areas altered in dyslexia during both phonological and visual processing in the temporoparietal areas, as this area has shown to directly subserve both sensory visual motion and cognitive language processes. Specific questions addressed include: (1) What are the neural systems involved in phonological awareness (segmentation, rhyme generation and coding in verbal memory) and visual motion processing in normal subjects? (2) Do the neural systems involved in phonological awareness show sensitivity to performance rate, modality of presentation (oral versus visual) or response (covert versus overt)? (3) Is there spatial overlap in the neuronal systems involved in the performance of phonological awareness tasks and visual motion processing? (4) Since performance on these tasks reliably differentiates

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dyslexics from controls, are the neural systems involved differently activated in dyslexics and controls during the performance of these tasks? Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Heritability of an Anatomical Risk Factor for Dyslexia Principal Investigator & Institution: Eckert, Mark A.; Neuroscience; University of Florida Gainesville, Fl 32611 Timing: Fiscal Year 2000; Project Start 4-MAY-2000 Summary: Dyslexia is a form of reading disability that affects a significant proportion of children. Efforts to explain dyslexia have identified neural and chromosomal risk factors for dyslexia and the deficits related to dyslexia. The chromosomal markers implicated in dyslexia include regions related to a variety of developmental abnormalities. A neural risk factor related to dyslexia, Heschl's gyrus duplication, may be one aspect of the phenotypic expression of genes within the regions identified as chromosomal markers for dyslexia. A long term goal of this research will be to perform linkage analysis for Heschl's gyrus duplication. However, a pedigree for Heschl's gyrus duplication must first be developed in order to establish the proper linkage analysis approach. This proposal is designed to collect pedigrees for a Heschl's gyrus duplication and then identify chromosomal markers for the duplication. On a broader level, this proposal will combine two areas of biological research directed towards developing an understanding of the mechanisms that produce dyslexia. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket

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Project Title: Linguistic Phenotype in Familial Dyslexia Principal Investigator & Institution: Pennington, Bruce; Professor; Psychology; University of Denver Box 101562 Denver, Co 80208 Timing: Fiscal Year 2000; Project Start 1-JAN-1984; Project End 1-MAY2003 Summary: (Adapted from applicant's abstract): The proposed research is the competitive renewal of an NIMH MERIT award focused on the linguistic phenotype in familial dyslexia. Our earlier work has clarified both the underlying cognitive phenotype and the genetic etiology of familial dyslexia. We propose to extend that work by examining both the phenotypic and genotypic relation between dyslexia (or reading disability--RD) and phonological disorder (PD), which manifest at different ages but exhibit several intriguing commonalities. The two disorders overlap symptomatically in that some prospective studies of children with PD find they later have an elevated rate of RD and in that

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retrospective studies of children with RD document elevated rates of earlier PD. The underlying cognitive phenotype that is characteristic of RD, a deficit in phoneme awareness, is also found on follow-up in many cases of PD. Finally, there is evidence that each disorder is under genetic influence and that the two disorders are co-familial. In sum, there is evidence for overlap at three levels of analysis: defining symptoms, underlying cognitive processes, and familial etiology. We will test five competing explanations for this overlap: 1) that they are the same disorder in terms of both genetic etiology and cognitive phenotype, but that the symptom manifestations differ depending on severity such that PD + RD is a more severe manifestation than RD alone; 2) that they share a common etiology which acts pleiotropically to produce either PD, RD, or both in a given individual; 3) that PD and RD have distinct etiologies, but share a common cognitive phenotype (cognitive phenocopy hypothesis); 4) that PD and RD have distinct etiologies, but that PD accompanied by specific language impairment develops into a symptom phenocopy of RD (synergy hypothesis); or 5) that PD and RD have distinct etiologies, but co-occur in offspring because of assortment (RD individuals are more likely to mate with PD individuals). We will perform four principal tests to distinguish these hypotheses. Specifically, we will test 1) whether there is a common cognitive phenotype by means of a longitudinal study; 2) whether there is a common genetic etiology by means of a linkage analysis of PD families; 3) whether there is assortment by examining parents of PD and RD children; and 4) how PD, RD, and PD+RD segregate in families. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Reading and Sensorimotor Fluency in Dyslexia Principal Investigator & Institution: Zeffiro, Thomas; Director; Georgetown University 37Th and O Sts Nw Washington, Dc 20057 Timing: Fiscal Year 2001; Project Start 1-APR-2001; Project End 0-NOV2005 Summary: The behavioral-manifestations of developmental dyslexia are complex, including deficits in reading, motor control and early sensory processing. Although extensive behavioral research has carefully characterized these abnormalities, the specific neural mechanisms, whose dysfunction may explain the myriad behavioral manifestations of dyslexia, are still poorly understood. While many consider the core deficit in dyslexia to involve dysfunction of language mechanisms, others have emphasized the possible role of failure of sensory processing mechanisms or an overall disorder involving sensorimotor coordination evidenced by deficits in performance of speeded, bimanual movement

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tasks. One of the more prominent behavioral manifestations of dyslexia is impaired reading fluency, the ability to read connected text rapidly, smooth, effortlessly, and automatically. We propose a series of integrated studies combining behavioral measures with functional magnetic resonance imaging (fMRI) to investigate the relation of reading fluency to mechanisms involved in rapid naming, phonological processing, speeded motor performance and early sensory processing. Our central hypothesis posits the existence of a disorder in temporal processing in dyslexia that exhibits itself in deficits in these areas. In our previous work we have demonstrated a sensory deficit in dyslexia specific to the visual motion processing system. Using similar motor performance and to investigate the relationship of motor control abnormalities to deficits in reading fluency. A particular emphasis of the proposed research will be to identify the degree to which the systems responsible for reading, phonological processing, visual motion processing, speeded motor performance and rapid automatized name share common neural substrates. The proposed studies will provide important new information concerning the neural organization of reading in health and in disease. A deeper understanding of the processes involved when reading fails to develop normally may suggest new approaches to the diagnosis and treatment of developmental dyslexia. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Visual and Attentional Processing in Adult Dyslexia Principal Investigator & Institution: Elswick, Jennifer A.; Neurology; University of Maryland Balt Prof School Professional Schools Baltimore, Md 21201 Timing: Fiscal Year 2001; Project Start 4-AUG-2001 Summary: Dyslexia is defined as the difficulty learning to read despite adequate intelligence, instruction and socioeconomic opportunity. The range of figures given for the prevalence of the disorder is from 3-15%. Many of these children appear to have phonological and/or visual processing deficits that persist well into adulthood. It is important that we more fully understand these deficits and how they affect reading in order to advance remediation and intervention strategies. This study will compare the performance of adult readers with dyslexia, selected on the basis of a childhood history of dyslexia, discrepant performance on standardized reading tests and a specific visual processing deficit, to the performance of normal controls (matched on PIQ) on tasks of attentional and orthographic processing. The first phase of the project will be to obtain normative data from a coherent motion detection task, and to select dyslexic readers who demonstrate a deficit compared to the normal

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distribution. Following the recruitment of matched normal control subjects, the next step will be to assess both groups of subjects' attentive and pre-attentive processing in the visual modality using various types of visual search tasks. Lexical decision tasks will then be administered to both groups of subjects in order to determine the independent contribution of any sensory or attentional deficit to orthographic processing. The final set of experiments will look for differences in patterns of brain activity between the individuals with dyslexia and the normal controls using functional Magnetic Resonance Imaging (fMRI) methods. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Bases of Normal and Disordered Reading Principal Investigator & Institution: Manis, Franklin R.; Associate Professor; Psychology; University of Southern California University Park Los Angeles, Ca 90007 Timing: Fiscal Year 2002; Project Start 1-FEB-1996; Project End 1-MAR2007 Summary: (provided by applicant): This proposal is a competing continuation of a previous grant, "Perceptual, linguistic, and computational bases of dyslexia." The focus of our research was on using a connectionist model of reading to frame empirical studies of reading acquisition and dyslexia, with an emphasis on identifying subtypes associated with different underlying impairments. During the previous granting period, we conducted a longitudinal study of reading acquisition and dyslexia and behavioral experiments concerning speech perception, spelling, and learning targeted at identifying possible causes of dyslexia. We also completed a major extension of the Seidenberg and McClelland (1980) model to developmental dyslexia and implemented a model of the computation of word meaning from print. The behavioral research suggests that there are phonological and non-phonological bases for dyslexia which produce different behavioral profiles that are stable over time. Overt speech recognition deficits were only observed in a subset of phonological dyslexics with broader language impairments. Thus the studies suggest that phonological impairments can be severe enough to impact reading negatively but leave speech perception unaffected. In the next granting period we propose to conduct new experiments focused on the nature of the impairments in phonology, speech and visual perception that have been observed in dyslexics, the effects of these impairments on reading behavior, and whether different brain activation patterns underlie different subtypes. The research program involves using behavioral experimentation, computational

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modeling, and neuroimaging techniques to develop a unified account of normal and disordered reading. The studies are likely to yield advances with regard to theories of reading, the bases of reading impairments, basic aspects of normal and disordered speech and visual perception, and the brain bases of reading ability and disability. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Core--Clinical Principal Investigator & Institution: Berninger, Virginia W.; Professor; University of Washington Seattle, Wa 98195 Timing: Fiscal Year 2001; Project Start 1-MAR-1996; Project End 0-NOV2005 Summary: The Clinical Core, which provided services to Projects I, II, III, and IV, accomplished all its specific aims during the initial funding cycle. For the next funding cycle, it proposes five specific aims. Specific Aim 1 is to continue to ascertain families for Project III, with probands in grades 1 to 9. The goal is to ascertain 50 probands with dyslexia (reading and spelling disability) and 50 probands with dysgraphia (only spelling disability) in each project. Year and test the probands, their nuclear family members, and extended family members (N=500 families and approximately 2500 family members over the next five years). Specific Aim 2 is to modify the phenotyping batter to include only the best measures from the first four years, to reduce the time required to administered it from 4 to 2 hours, and to add measures of morphological processing to use in ongoing aggregation, segregation, and linkage studies. Specific Aim 3 is to triage qualified probands in Project III to the joint treatment/brain imaging studies of Projects I and IV. Specific Aim 4 is to conduct cross-sectional studies of Morphological Awareness and Motivation during the first 3 years and of Math Processes and motivation during the last 2 years in an unreferred sample of students in 4th through 9th grade. Results for the first three years will be used to evaluate the construct validity for morphological awareness relative to phonological, orthographic, and rapid naming processes for reading and spelling in normally developing students, to generate means and standard deviations for grade to use in computing z-scores for morphological measures in the phenotyping battery, to study math measures in a future phenotyping battery, and to study the normal development of motivation for reading and writing as a reference point for related study of motivation in students with dyslexia and/or dysgraphia. Specific Aim 5 is to provide outreach services in the form of (1) a summer intervention program for probands in Project III who do not qualify for or choose not to participate in the joint treatment/brain imaging studies of Projects I

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and IV, (2) a mentoring program for teachers to learn effective instructional strategies for working with student with dyslexia and/or dysgraphia, and (3) workshops for teachers, administrators, and psychologists to disseminate the research results generated across the projects of the UWLDC and to reduce research findings to practice. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Genetic Contributions to Learning Disabilities Subtypes Principal Investigator & Institution: Raskind, Wendy H.; University of Washington Seattle, Wa 98195 Timing: Fiscal Year 2000 Summary: The overall objective of this project is to investigate genetic factors involved in specific subtypes of dyslexia and dysgraphia by evaluating kindreds whose members have been well-characterized for learning disabilities (LD). Four lines of evidence support the hypothesis that there is a genetic contribution to LD: 1) individuals with dyslexia cluster in families; 2) the concordance for dyslexia is greater in monozygotic twins that in dizygotic twins; 3) segregation analysis of family pedigree data has found evidence for both major locus and polygenic transmission; 4) genetic linkage analyses have identified regions of the genome that are nonrandomly associated with LD. The exact role of genes in these disorders in unknown and patterns of inheritance, gene-gene interactions and gene-environment interactions are likely to be complex. Recent advances in molecular genetic methodology combined with improved approaches to statistical analysis make it possible to identify genetic factors in complex disorders. LD is a heterogeneous group of disorders with a spectrum of phenotypes. Individuals can have dyslexia alone, dysgraphia alone or a combination of both disabilities. These disabilities can be further subdivided by the specific processing deficit involved; individuals may be orthographically impaired, phonologically impaired or have a combination of both deficits. Furthermore, the deficit in dyslexia may be rule- governed or word-specific. In addition, dyscalculia may or may not be found in combination with the other disabilities. It is not known whether these LD subtypes are genetically distinct or whether they represent different manifestations of the same genetic defect. There is evidence that chromosomes, 1, 6 and 15 may contain genes involved in LD. Linkage studies that resulted in these localizations were performed on subject populations that were not categorized by LD subtype. We propose to evaluate the genetic distinction between dyslexia and dysgraphia, between orthographic and phonologic processing disabilities and between word-specific and rule-governed deficits. In collaboration with

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the Clinical and Statistical Cores, Project 3 will (a) receive and process blood samples from subjects and family members, prepare and store DNA and establish lymphoblastoid cell lines (b) confirm the published linkage associations to markers on chromosomes 1, 5 and 15, (c) investigate genetic heterogeneity and map other genes involved in LD. This will be accomplished by genotyping DNA samples for highly polymorphic short tandem repeat markers. Pedigree data will be evaluated to determine possible modes of transmission of LD. To detect sites of LD genes, genotype data will be analyzed using linkage analysis and non- parametric methods. Once regional localizations are identified, the map locations of the genes will be refined to enable positional cloning. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Predoctoral Fellowship for Students with Disabilities Principal Investigator & Institution: Kinsey, Kristofer K.; Psychology; Claremont Graduate School Claremont, Ca 91711 Timing: Fiscal Year 2000; Project Start 1-DEC-2000 Summary: The research proposed under this fellowship will examine the magnocellular pathway and it's role in reading. In the last few years, there have been a number of reports indicating a relationship between dyslexia and a visual processing deficit specific to the magnocellular pathway (M path). It is not clear how an M path dysfunction would cause reading difficulties, or even if the dysfunction contributes significantly to dyslexia.. Preliminary studies from this lab however, indicate there is an M path involvement in specific aspects of reading. Specifically, the M path seems to be involved with global orthographic processing. The research proposed under this NIH fellowship will be conducted to assess the involvement M path deficit has on reading performance and to show the specific reading mechanisms effected by M path dysfunction in adults and children diagnosed with dyslexia. The research project will be conducted in two parts. Part I: The first step to assess the M path involvement in reading will be to evaluate the vascular of currently available methodologies for inhibiting M path processing. The, second step will be to record and compare, in non-dyslexic individuals, neural activity associated with orthographic and phonologic processing tasks under M path inhibition and normal conditions. Part II: To test the hypothesis that an M path deficit is significantly contributing to reading problems in dyslexics, neural activity recorded under M path inhibition will be compared to neural activity recorded from dyslexic individuals performing the same tasks. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket

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·

Project Title: Regional Brain Metabolism Studies Principal Investigator & Institution: Wood, Frank B.; Wake Forest University Box 7373, Reynolda Sta Winston-Salem, Nc 27109 Timing: Fiscal Year 2000 Summary: In the first five years of this funded project, physiological studies using regional cerebral blood flow, event-related potentials, and positron emission tomography have separately suggested alterations of neural organization, particularly in the left hemisphere, in dyslexic individuals. The current proposal aims to unify the ERP and PET physiological methods as well as MRI profiles into an integrated anatomical and behavioral description of the neurobehavioral substrate of dyslexia. Accordingly, physiological measurements would be made during the performance of cognitive tasks chosen to elicit specific, localized regions of activation. In three groups of subjects (dyslexics and normal readers) with well-documented childhood reading data, four tasks will be measured across these methods. In Experiment 1, a group of 10 will perform two auditory linguistic activation tasks during PET scanning. In Experiment 2, a group of 40 will perform crossmodal linguistic activation tasks during simultaneouS PET and ERP measurement. MR images on all PET scan participants will allow reconstruction and measurement of the temporal plana and caudates to determine the anatomical characterization of dyslexia. In Experiment 3, another group of 40 will perform visual letter and word discrimination paradigms, again during simultaneouS ERP and PET measurement, with MR images for anatomical reconstruction. In Experiment 4, 100 subjects varying in reading disability, their spouses, and 150 of their children will undergo event-related potential measurement during various visual tasks, allowing direct comparison to their parent data as well as to the childhood longitudinal normal, reading impaired, and at-risk samples collected in the first five years of our current program project. We will specifically test the hypothesis of a unitary, underlying physiological deficit manifest in each of these physiological measurement domains. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket

·

Project Title: Temporal Frequency in Tactile Roughness Perception Principal Investigator & Institution: Cascio, Carissa J.; Neurology; Emory University 1380 S Oxford Rd Atlanta, Ga 30322 Timing: Fiscal Year 2001; Project Start 1-SEP-2001 Summary: The tactile perception of roughness depends on lateral movement between the skin and the surface, yet studies of the stimulus variables relevant to roughness perception have failed to find substantial

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evidence for temporal factors. This project asks whether the temporal frequency of a textured stimulus affects roughness perception. The hypothesis that tactile roughness perception depends partially on temporal factors will be investigated using three approaches. First, normal human volunteers will perform either of two psychophysical tasks as temporal frequency is manipulated as an independent variable. Next, the representation of stimulus frequency in somatosensory cortical neurons will be investigated. Finally, numerous studies have linked dyslexia to a mufti- modal sensory deficit specific for high-frequency information. In light of this evidence, volunteers with dyslexia will perform a psychophysical discrimination task using textured stimuli of varying frequencies. This project will contribute not only to the understanding of tactile coding of texture, but also to the understanding of sensory differences in dyslexia. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket

E-Journals: PubMed Central18 PubMed Central (PMC) is a digital archive of life sciences journal literature developed and managed by the National Center for Biotechnology Information (NCBI) at the U.S. National Library of Medicine (NLM).19 Access to this growing archive of e-journals is free and unrestricted.20 To search, go to http://www.pubmedcentral.nih.gov/index.html#search, and type “dyslexia” (or synonyms) into the search box. This search gives you access to full-text articles. The following is a sample of items found for dyslexia in the PubMed Central database: ·

Disruption of the neural response to rapid acoustic stimuli in dyslexia: Evidence from functional MRI by E. Temple, R. A. Poldrack, A. Protopapas, S. Nagarajan, T. Salz, P. Tallal, M. M. Merzenich, and J. D. E. Gabrieli; 2000 December 5 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=17674

Adapted from the National Library of Medicine: http://www.pubmedcentral.nih.gov/about/intro.html. 19 With PubMed Central, NCBI is taking the lead in preservation and maintenance of open access to electronic literature, just as NLM has done for decades with printed biomedical literature. PubMed Central aims to become a world-class library of the digital age. 20 The value of PubMed Central, in addition to its role as an archive, lies the availability of data from diverse sources stored in a common format in a single repository. Many journals already have online publishing operations, and there is a growing tendency to publish material online only, to the exclusion of print. 18

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·

Evidence for Aberrant Auditory Anatomy in Developmental Dyslexia by AM Galaburda, MT Menard, and GD Rosen; 1994 August 16 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=44534

·

Functional connectivity of the angular gyrus in normal reading and dyslexia by B. Horwitz, J. M. Rumsey, and B. C. Donohue; 1998 July 21 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=21181

·

Functional disruption in the organization of the brain for reading in dyslexia by Sally E. Shaywitz, Bennett A. Shaywitz, Kenneth R. Pugh, Robert K. Fulbright, R. Todd Constable, W. Einar Mencl, Donald P. Shankweiler, Alvin M. Liberman, Pawel Skudlarski, Jack M. Fletcher, Leonard Katz, Karen E. Marchione, Cheryl Lacadie, Christopher Gatenby, and John C. Gore; 1998 March 3 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=19444

·

Physiological and Anatomical Evidence for a Magnocellular Defect in Developmental Dyslexia by MS Livingstone, GD Rosen, FW Drislane, and AM Galaburda; 1991 September 15 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=52421

The National Library of Medicine: PubMed One of the quickest and most comprehensive ways to find academic studies in both English and other languages is to use PubMed, maintained by the National Library of Medicine. The advantage of PubMed over previously mentioned sources is that it covers a greater number of domestic and foreign references. It is also free to the public.21 If the publisher has a Web site that offers full text of its journals, PubMed will provide links to that site, as well as to sites offering other related data. User registration, a subscription fee, or some other type of fee may be required to access the full text of articles in some journals. To generate your own bibliography of studies dealing with dyslexia, simply go to the PubMed Web site at www.ncbi.nlm.nih.gov/pubmed. Type “dyslexia” (or synonyms) into the search box, and click “Go.” The following PubMed was developed by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM) at the National Institutes of Health (NIH). The PubMed database was developed in conjunction with publishers of biomedical literature as a search tool for accessing literature citations and linking to full-text journal articles at Web sites of participating publishers. Publishers that participate in PubMed supply NLM with their citations electronically prior to or at the time of publication.

21

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is the type of output you can expect from PubMed for “dyslexia” (hyperlinks lead to article summaries): ·

Time estimation deficits in developmental dyslexia: evidence of cerebellar involvement. Author(s): Nicolson RI, Fawcett AJ, Dean P. Source: Proceedings of the Royal Society of London. Series B. Biological Sciences. 1995 January 23; 259(1354): 43-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7700875&dopt=Abstract

·

EMG and EEG biofeedback training in the treatment of a 10-year-old hyperactive boy with a developmental reading disorder. Author(s): Tansey MA, Bruner RL. Source: Biofeedback Self Regul. 1983 March; 8(1): 25-37. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6882815&dopt=Abstract

Vocabulary Builder Aberrant: Wandering or deviating from the usual or normal course. [EU] Aphasia: Defect or loss of the power of expression by speech, writing, or signs, or of comprehending spoken or written language, due to injury or disease of the brain centres. [EU] Aptitude: The ability to acquire general or special types of knowledge or skill. [NIH] Bilateral: Having two sides, or pertaining to both sides. [EU] Cerebellar: Pertaining to the cerebellum. [EU] Chromosomal: Pertaining to chromosomes. [EU] Collapse: 1. a state of extreme prostration and depression, with failure of circulation. 2. abnormal falling in of the walls of any part of organ. [EU] Cortical: Pertaining to or of the nature of a cortex or bark. [EU] Cues: Signals for an action; that specific portion of a perceptual field or pattern of stimuli to which a subject has learned to respond. [NIH] Dominance: In genetics, the full phenotypic expression of a gene in both heterozygotes and homozygotes. [EU] Genotype: The genetic constitution of the individual; the characterization of the genes. [NIH]

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Lobe: A more or less well-defined portion of any organ, especially of the brain, lungs, and glands. Lobes are demarcated by fissures, sulci, connective tissue, and by their shape. [EU] Localization: 1. the determination of the site or place of any process or lesion. 2. restriction to a circumscribed or limited area. 3. prelocalization. [EU] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Neural: 1. pertaining to a nerve or to the nerves. 2. situated in the region of the spinal axis, as the neutral arch. [EU] Neuronal: Pertaining to a neuron or neurons (= conducting cells of the nervous system). [EU] Neurons: The basic cellular units of nervous tissue. Each neuron consists of a body, an axon, and dendrites. Their purpose is to receive, conduct, and transmit impulses in the nervous system. [NIH] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Phenotype: The outward appearance of the individual. It is the product of interactions between genes and between the genotype and the environment. This includes the killer phenotype, characteristic of yeasts. [NIH] Polymorphic: Occurring in several or many forms; appearing in different forms at different stages of development. [EU] Posterior: Situated in back of, or in the back part of, or affecting the back or dorsal surface of the body. In lower animals, it refers to the caudal end of the body. [EU] Prevalence: The total number of cases of a given disease in a specified population at a designated time. It is differentiated from incidence, which refers to the number of new cases in the population at a given time. [NIH] Psychology: The science dealing with the study of mental processes and behavior in man and animals. [NIH] Psychopathology: The study of significant causes and processes in the development of mental illness. [NIH] Substrate: A substance upon which an enzyme acts. [EU] Tomography: The recording of internal body images at a predetermined plane by means of the tomograph; called also body section roentgenography. [EU]

Triage: The sorting out and classification of patients or casualties to determine priority of need and proper place of treatment. [NIH] Vascular: Pertaining to blood vessels or indicative of a copious blood supply. [EU]

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CHAPTER 5. PATENTS ON DYSLEXIA Overview You can learn about innovations relating to dyslexia by reading recent patents and patent applications. Patents can be physical innovations (e.g. chemicals, pharmaceuticals, medical equipment) or processes (e.g. treatments or diagnostic procedures). The United States Patent and Trademark Office defines a patent as a grant of a property right to the inventor, issued by the Patent and Trademark Office.22 Patents, therefore, are intellectual property. For the United States, the term of a new patent is 20 years from the date when the patent application was filed. If the inventor wishes to receive economic benefits, it is likely that the invention will become commercially available within 20 years of the initial filing. It is important to understand, therefore, that an inventor’s patent does not indicate that a product or service is or will be commercially available. The patent implies only that the inventor has “the right to exclude others from making, using, offering for sale, or selling” the invention in the United States. While this relates to U.S. patents, similar rules govern foreign patents. In this chapter, we show you how to locate information on patents and their inventors. If you find a patent that is particularly interesting to you, contact the inventor or the assignee for further information.

22Adapted

from The U. S. Patent and Trademark Office: http://www.uspto.gov/web/offices/pac/doc/general/whatis.htm.

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Patents on Dyslexia By performing a patent search focusing on dyslexia, you can obtain information such as the title of the invention, the names of the inventor(s), the assignee(s) or the company that owns or controls the patent, a short abstract that summarizes the patent, and a few excerpts from the description of the patent. The abstract of a patent tends to be more technical in nature, while the description is often written for the public. Full patent descriptions contain much more information than is presented here (e.g. claims, references, figures, diagrams, etc.). We will tell you how to obtain this information later in the chapter. The following is an example of the type of information that you can expect to obtain from a patent search on dyslexia: ·

Dysmetric dyslexia screening procedure administered on the internet Inventor(s): Levinson; Harold N. (15 Lake Rd., Great Neck, NY 11020) Assignee(s): none reported Patent Number: 6,398,729 Date filed: November 18, 1999 Abstract: For a dysmetric dyslexia-identifying test herebefore administered to a mixed audience of children, some being dyslexic and others not, the administration thereof now over the Internet to a dispersed audience preferably consisting of a child in the singular in facing relation to an Internet display module, to thereby obviate by this dispersion any audience-influencing behavior which heretofore affected the test results. Excerpt(s): The present invention relates generally to improvements in a known diagnostic screening procedure implemented by administering a reading or symbol-recognition test that effectively identifies children, even of pre-school age, as having cerebellar-vestibular dysfunctions and, in medical parlance, being affected with dysmetric dyslexia wherein the improvements, more particularly, retain the substantive validity of the test and are in the nature of the administration of the test to the end of contributing significantly to the accuracy of the test, as will be better understood as the description proceeds. ... It is already known, as set forth in U.S. Pat. No. 3,842,822 for "Dysmetric Dyslexia Screening Procedure", issued to Harold N. Levinson on Oct. 22, 1974, of the discoveries involving children, some possibly dysmetric dyslexic and others not, of an eye oscillation of a selected extent which is normally below the level which produces blurred vision in those children not affected with dysmetric dyslexia but, in those children affected with dysmetric dyslexia, the noted eye oscillation in response to a reading or

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symbol-recognition exercise is increased to a higher extent which produces blurred vision, while the non-susceptible children continue to read without reporting any blurring. ... To take full advantage of the benefits of the noted discoveries, it was administered heretofore to a classroom-filled audience since to the audience, it was like watching a movie and thus was a pleasant activity well known to each participant. The test results to a significant extent correlated with the conditions of those affected with dysmetric dyslexia and those not so affected but, in practice, there was noted a variation in successive testing of a child participant, the cause of which was not understood. Web site: http://www.delphion.com/details?pn=US06398729__ ·

Method of and apparatus for multi-modal information presentation to computer users with dyslexia, reading disabilities or visual impairment Inventor(s): Kiraly; Jozsef (San Martin, CA), Ridge; Peter M. (San Jose, CA) Assignee(s): Mindmaker, Inc. (San Jose, CA) Patent Number: 6,324,511 Date filed: October 1, 1998 Abstract: A method of providing language assistance to a computer user with dyslexia, reading disabilities or visual impairment by presenting text-based information via multiple media channels. The method of the present invention includes the steps of: accessing a source of text-based data that can originate from a computer text document, displaying textbased data in a text window with a standard font size, displaying the text-based data in another text window with a magnified font size, sequentially highlighting the text-based data in the magnified text window one word at a time; generating synthesized speech signals representative of the highlighted text; rendering the synthesized speech signals audible synchronously with the displaying of the highlighted text; displaying images that correspond to the context of the highlighted text; and generating sound effects that are pertinent to the context of the highlighted text such that text-based information and corresponding graphical and audible information can be perceived simultaneously by the user. This technique effectively provides multiple channels of information to a user. The present invention is particularly useful for displaying text-based information to users having reading disabilities such as dyslexia, or for increasing the entertainment value of viewing a text document. The present invention may be used for assisting users in

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editing documents and in retrieving information from the World Wide Web. Excerpt(s): The present invention generally relates to the field of computer systems. More specifically, the present invention relates to the field of computer aided systems for computer users with dyslexia, reading disabilities, or visual impairment. ... However, not everyone is able to realize the full potential of computer systems or the World Wide Web. For instance, a person with certain reading or comprehension dysfunctions, e.g. dyslexia, may find producing and editing a document on a computer difficult because he/she may not be able to comprehend information that is presented only in the form of text. Moreover, for those who suffer from visual impairments like acute myopia, surfing the World Wide Web and comprehending information therefrom can also present a significant challenge. First of all, Web pages contain mainly text data. Even search engines, such as Excite, Lycos, or AltaVista, which are indispensable when searching for specific information on the Web, are text-based. Secondly, the font sizes and colors of the Web pages are usually predetermined by the owners of the Web pages. Therefore, a person suffering from a reading disability may have difficulty understanding those Web pages or a person suffering from visibility problems may have problems viewing those Web pages. Thus, most people who suffer from dyslexia, other reading disabilities or visual impairments can become discouraged from using computer systems and the World Wide Web for these reasons. ... The present invention provides for a method of assisting computer users in comprehending and understanding text-based information by simultaneously reinforcing the information via multiple media channels. Particularly, the method of the present invention is implemented in a computer system or embodied in a computer-usable medium in the form of a computer program, and includes the steps of: accessing a source of text-based data, displaying text-based data in a text window with a standard font and size, and/or displaying a portion of the text-based data in another text window with a magnified font and size, sequentially highlighting the text-based data in one or both text windows one word at a time; and generating synthesized speech signals representative of the highlighted word and rendering the synthesized speech signals audible synchronously with the displaying of the highlighted text such that text-based information and corresponding audible information can be perceived simultaneously by the user. The present invention is particularly useful for displaying text-based information to users having reading disabilities such as dyslexia as the simultaneous reinforcement of the audio and visual information renders the text-based data easily comprehensible. The present invention may also be used for assisting users with visual impairments in document

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editing and retrieving information from the World Wide Web. The present invention can yet be employed to increase the comprehension of and entertainment value of text-based information as displayed to computer users, especially young computer users. Web site: http://www.delphion.com/details?pn=US06324511__ ·

System and method for incorporating handwriting pattern recognition systems

dyslexia

detection

in

Inventor(s): Reitano; Carmen T. (192 N. End Blvd., Salisbury, MA 01952) Assignee(s): none reported Patent Number: 6,304,667 Date filed: June 21, 2000 Abstract: A method for incorporating dyslexia detection into existing handwriting pattern recognition software includes a database of distorted characters along with the database of legitimate characters with which the handwriting samples are compared. The distorted characters are those recognized as typical of those produced by dyslexic persons. The system used may be a personal computer, a personal digital assistant, or an Internet system. Whatever system is used, a means of freehand drawing must be included, such as a stylus with pressure sensitive drawing area, a drawing tablet, or pen-pad-type device. A character is first presented to the student for reproduction. The student then draws a character on the pad, attempting to reproduce the character. The system software detects a correspondence between the character input and the legitimate characters, when occurring. When the drawn character does not correspond to a legitimate character, but does correspond to one of the distorted character sets, the result is stored, and later reported. Excerpt(s): Dyslexia is a specific learning difficulty that hinders the learning of literacy skills. Its etymology is based on the Greek: `difficulty with words`. It affects millions of people worldwide. ... Dyslexia affects reading, spelling, writing, memory and concentration, and sometimes math, music, foreign languages and self-organization It is apparently neurologically based and tends to run in families. Other symbolic systems, such as mathematics and musical notation, can also be affected. However, there is controversy as to the exact definition of the syndrome of dyslexia and from contradictory theories that surround its etiology. ... Attempts to diagnose dyslexia generally fall into one of two categories: (1) generalized behavioral diagnoses, as in the list above, and (2) physiological tests involving detection of psychological and/or

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neurophysiological symptoms such as abnormal EEG or evoked potential and/or erratic eye movements. Web site: http://www.delphion.com/details?pn=US06304667__ ·

Method and apparatus for determining magnocellular pathway defect and dyslexia Inventor(s): Livingstone; Margaret S. (Chestnut Hill, MA), Galaburda; Albert M. (Andover, MA) Assignee(s): President and Fellows of Harvard College (Cambridge, MA) Patent Number: 5,474,081 Date filed: November 18, 1993 Abstract: A method and apparatus determine defective magnocellular pathway in the visual system of a subject. Such determination of defective magnocellular pathway in turn is deterministic of dyslexia. The invention method and apparatus presents to a subject eye a series of patterns spatially varying in light intensity, such as a checkerboard pattern. Each pattern provides a certain respective degree of contrast between areas of varying light intensity. In displaying each checkerboard pattern, it is alternated with display of its contrast reverse pattern at a frequency between about 0.5 Hz and about 15 Hz. The temporal frequency from one checkerboard pattern to the next checkerboard pattern in the displayed series of patterns is in the range of about 30 patterns per minute to hundreds of patterns per minute. Response of the eye, such as the visually evoked potential, to each pattern is measured as the pattern is being displayed. And the measured responses are compared to a predetermined range of standard/normal responses for the given displayed patterns. Measured responses falling outside of the predetermined range of standard/normal responses indicate a magnocellular pathway defect, and hence dyslexia. Excerpt(s): For example, development dyslexia is the selective impairment of reading skills despite normal intelligence, sensory acuity, motivation and instruction. Several perceptual studies have suggested that dyslexic subjects process visual information more slowly than normal subjects. The flicker fusion rate, which is the fastest rate at which a contrast reversal of a stimulus can be seen, is abnormally slow in dyslexic children at low spatial frequencies and low contrast. When two visual stimuli are presented in rapid succession, the two images fuse and appear as a single presentation. The temporal separation necessary to distinguish two presentations measures visual persistence, and for dyslexic children the temporal separation is a hundred milliseconds

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longer than for normal children, particularly for low spatial frequency stimuli. Dyslexic subjects also have trouble distinguishing the order of two rapidly flashed visual stimuli. In contrast, dyslexics perform normally on test having prolonged stimulus presentations. ... Thus, past perceptual studies suggest that the fast functioning part of the visual system is slowed down in dyslexia. Tests using behavioral methods have been unable to more specifically detect or localize the perceptual defects involved in dyslexia. On the other hand, further studies have been made to more accurately determine dyslexia using visually evoked potentials in response to stimuli at low spatial frequency (see "Factor Scores Derived From Visual Evoked Potential Latencies Differentiate Good and Poor Readers", by James G. May et al., Clin. Vision Sci., Vol. 7, No. 1, pages 6770, 1992) and visually evoked potentials in response to background flicker (see "The Effects of Uniform Field Flicker on Visual Evoked Potentials in Children With Reading Disability" by Steven Lehmkuhle et al., Investigative Opthomology and Visual Science, Supplement, Vol. 33 (1992), page 718. ... The foregoing perceptual studies suggest an abnormality in dyslexia affecting some part of the visual system that is fast and transient and has high contrast sensitivity and low spatial selectivity. Exactly, these properties characterize the magnocellular pathway of the visual system. Accordingly, Applicants in a physiological study measured the visual temporal resolution and contrast sensitivity of normal and dyslexic subjects, and correlated these physiological results with anatomical observations in autopsy specimens. As a result, Applicants have discovered a correlation between defects in the magnocellular pathway and dyslexia. Specifically, Applicants found that dyslexic subjects showed diminished visually evoked potentials to rapid low contrast stimuli but normal responses to slow, high-contrast stimuli. Such abnormalities in the dyslexic subject's evoked potentials were consistent with defective (reduced size) cells found in the magnocellular pathway. Further details and discussion of this study are presented in "Physiological and Anatomical Evidence For a Magnocellular Defect in Developmental Dyslexia" by Margaret S. Livingstone et al., Proc. of the National Academy of Sciences USA, Vol. 88, page 7943-7947, Sep. '91, herein incorporated by reference. Web site: http://www.delphion.com/details?pn=US05474081__

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·

Method and apparatus for the amelioration of visual stress and dyslexia Inventor(s): Mumford; Robin B. (29 S. Bay Ave., Highlands, NJ 07732) Assignee(s): none reported Patent Number: 5,420,653 Date filed: January 6, 1992 Abstract: A quantitative visual test measures the rate at which an individual is able to complete a defined visual task, either on paper or on a self illuminated screen. The task involves comparing a plurality of similar appearing numbers to determine if they are an exact match within predetermined levels of time. Inability to complete the test within the predetermined level of time indicates the likelihood that the individual will exhibit visual stress and dyslexia. Individuals under such stress are then remediated by the use of adjusted lighting environments sometimes including other visual aids. Excerpt(s): The term dyslexia is used in the context of this disclosure to describe an individual who persistently reads inaccurately and one who has a lower than average recall or comprehension of the contents of what the individual has recently read. In some cases, the individuals are unable to count more than five symbols due to the level of visual confusion. This condition creates a great deal of frustration for such individuals, and is frequently incorrectly perceived as a lack of intelligence. Accordingly, there is a continuing need for and interest in improved methods for the detection and treatment of this and other similar visual conditions. ... The present invention relieves dyslexia and other visual incapacities by testing methods combined with empirical optimization of the spectrum of the lighting and the ratio of direct to indirect lighting to achieve optimal visual capacity levels. ... The following case histories illustrate successful applications of the method of the present invention to help individual's overcome various visual incapacities and dyslexia. Web site: http://www.delphion.com/details?pn=US05420653__

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·

Method and means for detecting dyslexia Inventor(s): Pavlidis; George (Park La., Apt. 9E, New Brunswick, NJ 08901) Assignee(s): none reported Patent Number: 4,889,422 Date filed: January 28, 1986 Abstract: The specification discloses a diagnostic device and method for detecting various neurological conditions, particularly dyslexia. Eye movement patterns of the subject to be tested are separated into saccadic movement (both progressive and regressive) vergence, pursuit movements and fixations, and the subject's specific eye movement pattern, as evaluated against a specific stimulus, and normal patterns is used for diagnostic purposes. A variety of eye movement detectors is disclosed, together with a sampling means which evaluates the eye position at intervals of less than 10 milliseconds. A data processing means is used to isolate the significant samples and categorizes the retained data samples into the foregoing eye movements. The eye movement patterns are then evaluated against a statistical data base to determine the kind and severity of the diagnosed condition. For example, dyslexic individuals exhibit a high number of regressive saccades, while drug and alcohol impaired individuals are unable follow a stimulus with a pursuit movement, but must rely on a series of short saccades. Excerpt(s): The present invention is a diagnostic method and device for detecting various neurological conditions, including dyslexia. The device is particularly useful for diagnostic tests of dyslexia based on nonreading tasks, which are independent of reading skills. ... Dyslexia affects the lives of millions of people world-wide and often has devastating psychological, social and educational consequences. It is also one of the most controversial topics in the fields of developmental neurology, psychology, and education. The controversy arises from the incomplete definition of the syndrome of dyslexia and from contradictory theories that surround its etiology. ... A major difference between dyslexia and other reading disabilities is that, unlike dyslexia, other categories of reading failure can be predicted on the basis of neurological, intelligence, socio-economic, educational and psychological (motivational, emotional) factors known to adversely affect the reading process. If, for instance, a child has problems in one or more of the above-mentioned areas, he is expected to have reading problems. The extent of the reading disability is determined by the severity and number of factors that are involved. Web site: http://www.delphion.com/details?pn=US04889422__

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·

Diagnostic screening procedure for identifying dysmetric dyslexia Inventor(s): Levinson; Harold N. (600 Northern Blvd., Great Neck, NY 11021) Assignee(s): none reported Patent Number: 4,706,686 Date filed: October 27, 1986 Abstract: Subjects possibly suffering from dysmetric dyslexia are screened by providing a visual display consisting of a plurality of discrete objects moving in a continuous line between a pair of spaced stationary objects. The subject reads the display from a distance at which normal subjects being screened are capable of seeing not only the moving objects but both stationary objects within their field of vision, and failing to see the entire display are identified as possibly being dyslexic. Excerpt(s): The present invention relates to a screening procedure and apparatus for identifying children suffering from dysmetric dyslexia. ... For well over a decade I have employed a technique disclosed in my U.S. Pat. No. 3,842,822 dated Oct. 22, 1974 by which dysmetric dyslexia was attributed to a cerebellar-vestibular dysfunction which I found can be detected by creating a subclinical nystagmus or eye vibration which resulted in the blurring of moving images when engaged in a reading type activity, i.e. visual fixation, tracking and sequential scanning, which induces the corresponding eye vibration or back and forth reading type eye movement. This movement or eye vibration occurs at a frequency or number of beats per second which can be controlled, being more specifically a function of the speed of movement of the material being visualized or read by the subject. Such induced eye vibration is maintained below the normal threshold level producing blurred vision in normal subjects, but which in additive relation to the subclinical eye vibration noted to exist in dysmetric dyslexic subjects, results in a total eye vibration at a frequency or number of beats per second above the threshold level. Accordingly, those subjects experiencing blurred vision during the reading process are automatically identified as possibly being dysmetric dyslexic. ... It is a further object of the present invention to provide a diagnostic procedure and apparatus for testing and identifying members of the subject groups having dysmetric dyslexia. Web site: http://www.delphion.com/details?pn=US04706686__

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·

Method of and means for improved reading efficiency of persons with specific dyslexia Inventor(s): Nelson; Eileen M. (71 Cathryn Ct., Fox Lake, IL 60020) Assignee(s): none reported Patent Number: 4,379,699 Date filed: October 3, 1980 Abstract: A method of and structure for improving the reading efficiency of persons with specific dyslexia. The method of effecting such improvement includes providing to the dyslexiac reading material wherein the reading matter has a brightness substantially greater than that of the background on which the reading matter is provided. In the illustrated embodiment, the ratio of the brightness of the reading matter to the background is at least approximately 10 to 1. In a preferred form, the background is black and the reading matter is white. The treatment of the reading problem is advantageously adapted for increasing the reading speed of persons with specific dyslexia. Excerpt(s): This invention relates to the diagnosing and treating of reading problems in dyslexiacs and, in particular, to methods and means for increasing the reading efficiency of persons with specific dyslexia. ... Teaching persons with specific dyslexia to read with at least minimum efficiency is difficult and time consuming. Conventionally, such teaching has been done on a one-to-one basis with the dyslexiac and involves going over and over simple minimum reading material in an effort to build up the vocabulary and reading facility of the dyslexiac. ... One method of assisting the dyslexiac in gaining reading efficiency is to utilize tactile print means in conjunction with visual reading matter. Web site: http://www.delphion.com/details?pn=US04379699__

·

Method of measuring dynamic (a) auditory and (b) tactile sequencing or tracking, and diagnosing cerebellar-vestibular dysfunction and dysmetric dyslexia Inventor(s): Levinson; Harold N. (15 Lake Road, Great Neck, NY 11020), Frank; Jan (45 E. 82nd St., New York, NY 10028) Assignee(s): none reported Patent Number: 3,952,728 Date filed: February 24, 1975 Abstract: The discovery that the condition of dysmetric dyslexia results from dysfunctioning of the cerebellar-vestibular underlies the method of

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U.S. Pat. No. 3,842,822 issued on Oct. 22, 1974, which method uses blurring and scrambling of sequential visual stimuli to identify and measure ocular motor coordination, i.e. ocular fixation and sequential scanning abilities.As an improvement and/or alternative to the above method, the within methods, which also are useful in identifying dysmetric dyslexic children in an examination group, use response to acoustical and/or tactile stimulation, rather than response to visual stimuli, to identify said condition. Excerpt(s): It has been known, but heretofore never used for screening, identification or the like, that dysmetric dyslexic children frequently reverse the phonetic sequence of sounds while speaking and often have difficulty blending phonetic sequences in words and letters they see. When attempting to sound out and blend the phonemes in a word, they frequently skip over one or two in a sequence of three or four, and even reverse the whole sequence or phonetic pairs within a word. They even occasionally have difficulty matching, recalling or coordinating the sound of a letter with its visual form. These difficulties were thought to be cortical, since it was not fully appreciated that the cerebellar-vestibular controls sensory input. Rather, the prevalent belief was that the cerebellar-vestibular only controlled motor functions or performance. It is now demonstrated that this is not the case. Moreover, an important contribution of the present invention is the utilization of the foregoing as a basis for a test and procedure to diagnose on an individual and mass basis cerebellar-vestibular dysfunction and dysmetric dyslexia. More particularly, the within auditory test and procedure is effective because of a failure to identify "dynamic" or sequentially-presented auditory stimuli, even though the individuals that exhibit the failure have normal sufficient auditory acuity, and thus would perform well taking a conventional hearing test. ... In said U.S. Pat. No. 3,842,822, we have demonstrated that blurring and scrambling of sequential visual stimuli occurs at significantly lower input speeds in children with cerebellarvestibular dysfunction and dysmetric dyslexia than in normal children. By analogy to the visual or ocularmotor model, the acoustical response test hereof owes its effectiveness to its being related to the ability of the individual being tested to handle incoming auditory stimuli. That is, when there is poor performance, it is as if the auditory fixation and sequential scanning functions were impaired. Increasing the rate of incoming and sequential auditory stimuli leads, by analogy, to an auditory ataxia or nystagmus and auditory scrambling occurs. Thus, by speeding up the rate of presentation of sounds, e.g. letters, words or sentence sequences to an examination group, a speed is reached where "sound scrambling" or "blurring" occurs. The speed at which this auditory scrambling or blurring occurs is significantly less for children

Patents 75

with cerebellar-vestibular dysfunction than for those without cerebellarvestibular dysfunction. ... One form of a diagnostic screening procedure for identifying those in an examination group possibly having the condition of dysmetric dyslexia, demonstrating objects and advantages of the present invention, contemplates the step of reciting words at a selected volume level and in a language known to said group for the purpose of requiring identification of said recited words by members of said group. Simultaneously with this recitation of words, there is also presented in background relation thereto, auditory material which is initially at a volume at a selected volume level below that of the recited words. The volume level of the background auditory material, however, is progressively increased while the group continues its efforts to identify the recited words. Any group member unable to make said identification of recited words because of inability to suppress the background auditory material is automaticallly identified as possibly being dysmetric dyslexic. Web site: http://www.delphion.com/details?pn=US03952728__

Patent Applications on Dyslexia As of December 2000, U.S. patent applications are open to public viewing.23 Applications are patent requests which have yet to be granted (the process to achieve a patent can take several years).

Keeping Current In order to stay informed about patents and patent applications dealing with dyslexia, you can access the U.S. Patent Office archive via the Internet at no cost to you. This archive is available at the following Web address: http://www.uspto.gov/main/patents.htm. Under “Services,” click on “Search Patents.” You will see two broad options: (1) Patent Grants, and (2) Patent Applications. To see a list of granted patents, perform the following steps: Under “Patent Grants,” click “Quick Search.” Then, type “dyslexia” (or synonyms) into the “Term 1” box. After clicking on the search button, scroll down to see the various patents which have been granted to date on dyslexia. You can also use this procedure to view pending patent applications concerning dyslexia. Simply go back to the following Web address: http://www.uspto.gov/main/patents.htm. Under “Services,” click

23

This has been a common practice outside the United States prior to December 2000.

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on “Search Patents.” Select “Quick Search” under “Patent Applications.” Then proceed with the steps listed above.

Vocabulary Builder Acuity: Clarity or clearness, especially of the vision. [EU] Ataxia: Failure of muscular coordination; irregularity of muscular action. [EU]

Autopsy: Postmortem examination of the body. [NIH] Confusion: Disturbed orientation in regard to time, place, or person, sometimes accompanied by disordered consciousness. [EU] Myopia: That error of refraction in which rays of light entering the eye parallel to the optic axis are brought to a focus in front of the retina, as a result of the eyeball being too long from front to back (axial m.) or of an increased strength in refractive power of the media of the eye (index m.). Called also nearsightedness, because the near point is less distant than it is in emmetropia with an equal amplitude of accommodation. [EU] Nystagmus: An involuntary, rapid, rhythmic movement of the eyeball, which may be horizontal, vertical, rotatory, or mixed, i.e., of two varieties. [EU]

Ocular: 1. of, pertaining to, or affecting the eye. 2. eyepiece. [EU] Progressive: Advancing; going forward; going from bad to worse; increasing in scope or severity. [EU] Saccades: An abrupt voluntary shift in ocular fixation from one point to another, as occurs in reading. [NIH] Subclinical: Without clinical manifestations; said of the early stage(s) of an infection or other disease or abnormality before symptoms and signs become apparent or detectable by clinical examination or laboratory tests, or of a very mild form of an infection or other disease or abnormality. [EU] Vestibular: Pertaining to or toward a vestibule. In dental anatomy, used to refer to the tooth surface directed toward the vestibule of the mouth. [EU]

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CHAPTER 6. BOOKS ON DYSLEXIA Overview This chapter provides bibliographic book references relating to dyslexia. You have many options to locate books on dyslexia. The simplest method is to go to your local bookseller and inquire about titles that they have in stock or can special order for you. Some parents, however, prefer online sources (e.g. www.amazon.com and www.bn.com). In addition to online booksellers, excellent sources for book titles on dyslexia include the Combined Health Information Database and the National Library of Medicine. Once you have found a title that interests you, visit your local public or medical library to see if it is available for loan.

Book Summaries: Federal Agencies The Combined Health Information Database collects various book abstracts from a variety of healthcare institutions and federal agencies. To access these summaries, go to http://chid.nih.gov/detail/detail.html. You will need to use the “Detailed Search” option. To find book summaries, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer. For the format option, select “Monograph/Book.” Now type “dyslexia” (or synonyms) into the “For these words:” box. You will only receive results on books. You should check back periodically with this database which is updated every 3 months. The following is a typical result when searching for books on dyslexia: ·

Cognitive Disorders: Pathophysiology and Treatment Source: New York, NY: Marcel Dekker, Inc. 1992. 388 p.

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Contact: Available from Marcel Dekker, Inc. 270 Madison Avenue, New York, NY 10016. Price: $140.00. ISBN: 0824786017. Summary: Cognitive dysfunction is a common manifestation of many different disease states ranging from autism and dyslexia in children to Alzheimer's disease and Parkinson's disease in the elderly. This book reviews major disease states that involve cognitive dysfunction. Chapters in part 1 examine cognitive disorders of childhood. Parts 2 and 3 cover cognitive disorders of middle and later years, respectively. The final part discusses future pharmacological treatments and their evaluation. Topics include: (1) developmental disabilities in children, (2) cognitive function following closed head injury, (3) the neuropsychological aspects of Huntington's disease, (4) the cognitive disorders associated with psychiatric illnesses, (5) consequences of drug and ethanol use on cognitive function, (6) cognitive dysfunction in Parkinson's disease, (7) vascular dementias, and (8) age-associated memory impairment. ·

Multisensory Teaching of Basic Language Skills Source: Baltimore, MD: Paul H. Brookes Publishing Co. 1999. 608 p. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $59.00 plus shipping and handling. ISBN: 1557663491. Summary: This textbook focuses on multisensory language (MSLE). It provides teaching strategies for teachers working with students who have dyslexia and other students who struggle with reading, writing, and spelling. The volume offers educators specific teaching strategies that promote phonological awareness, alphabet skills, spelling and grammar, reading accuracy and fluency, reading comprehension, handwriting and composition, organization and study skills, and communication with parents. In addition, the authors discuss the connection between oral language and literacy, spelling rules and patterns, transition into the general classroom after special education, multisensory mathematics instruction, dyslexia, adult literacy, and high functioning adults with learning disabilities. Field tested instructional materials and activities are included along with observation and assessment models. Each chapter is written by experts in the field and each concludes with a summary and extensive references. The text concludes with a chapter on materials and resources, and a subject index.

·

Dyslexia: An Introductory Guide Source: San Diego, CA: Singular Publishing Group, Inc. 1996. 226 p.

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Contact: Available from Singular Publishing Group, Inc. 401 West 'A' Street, Suite 325, San Diego, CA 92101-7904. (800) 521-8545 or (619) 2386777. Fax (800) 774-8398 or (619) 238-6789. E-mail: [email protected]. Website: www.singpub.com. Price: $39.95 plus shipping and handling. ISBN: 1565936043. Summary: This British textbook provides an overview of dyslexia in children. The child with dyslexia has difficulty with learning to read. He or she is also likely to have other associated difficulties such as poor spelling, slow or immature handwriting or an inability to deal with numbers, but the reading difficulty is the principal reason for concern. Fifteen chapters in the text cover the measurement of reading, the types of reading difficulties that may be encountered, the influence of intelligence, the importance of mental age, the teaching of reading, the components of dyslexia, the dyslexic child, assessment of the child with dyslexia, the role of the brain and vision problems as causative factors for dyslexia, the role of phonemic awareness in dyslexia, help for the child with dyslexia, advice for the parents of a child with dyslexia, useful resources and suggestions, and a history of dyslexia. An appendix of definitions, a glossary of terms, and a subject index conclude the volume. ·

Tackling Dyslexia: The Bangor Way Source: San Diego, CA: Singular Publishing Group, Inc. 1993. 144 p. Contact: Available from Singular Publishing Group, Inc. 401 West 'A' Street, Suite 325, San Diego, CA 92101-7904. (800) 521-8545 or (619) 2386777. Fax (800) 774-8398 or (619) 238-6789. E-mail: [email protected]. Website: www.singpub.com. Price: $29.99 plus shipping and handling. ISBN: 1565933702. Book Code: 429. Also available from Whurr Publishers, Ltd. 196 Compton Terrace, London, N1 2UN, England. Summary: This book outlines the Bangor Dyslexia Teaching System, focusing on providing readers with the tools necessary to help dyslexic children. Ten chapters cover the dyslexia difficulty and the literacy task; the phonological approach, the phonic program, and testing and monitoring work; approaches and procedures for teaching; teaching the phonic program at different stages, including beginning pupils, students who are struggling, and working with poor spellers; lesson planning and sample lessons; reading skills and reading instruction; transfer of skills from individual lesson to curriculum work; dyslexic pupils and the National Curriculum (England); handwriting; special topics, including listening, speech, calendar, alphabet, and dictionary skills; and computers in lessons with dyslexic children, including appropriate software. Appendices list materials, games, and books for teaching, and checklists

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for recording progress. A subject index concludes the volume. 17 references.

Book Summaries: Online Booksellers Commercial Internet-based booksellers, such as Amazon.com and Barnes & Noble.com, offer summaries which have been supplied by each title’s publisher. Some summaries also include customer reviews. Your local bookseller may have access to in-house and commercial databases that index all published books (e.g. Books in PrintÒ). The following have been recently listed with online booksellers as relating to dyslexia (sorted alphabetically by title; follow the hyperlink to view more details at Amazon.com): ·

The Gift of Dyslexia: Why Some of the Smartest People Can't Read and How They Can Learn by Ronald D. Davis, Eldon M. Braun (Contributor), Joan M. Smith (1997); ISBN: 039952293X http://www.amazon.com/exec/obidos/ASIN/039952293X/iconinterna

·

Dyslexia: Theory & Practice of Remedial Instruction by Diana Brewster Clark, Joanna Kellogg Uhry (1995); ISBN: 0912752432 http://www.amazon.com/exec/obidos/ASIN/0912752432/iconinterna

The National Library of Medicine Book Index The National Library of Medicine at the National Institutes of Health has a massive database of books published on healthcare and biomedicine. Go to the following Internet site, http://locatorplus.gov/, and then select “Search LOCATORplus.” Once you are in the search area, simply type “dyslexia” (or synonyms) into the search box, and select “books only.” From there, results can be sorted by publication date, author, or relevance. The following was recently catalogued by the National Library of Medicine:24 In addition to LOCATORPlus, in collaboration with authors and publishers, the National Center for Biotechnology Information (NCBI) is adapting biomedical books for the Web. The books may be accessed in two ways: (1) by searching directly using any search term or phrase (in the same way as the bibliographic database PubMed), or (2) by following the links to PubMed abstracts. Each PubMed abstract has a “Books” button that displays a facsimile of the abstract in which some phrases are hypertext links. These phrases are also found in the books available at NCBI. Click on hyperlinked results in the list of books in which the phrase is found. Currently, the majority of the links are between the books and PubMed. In the future, more links will be created between the books and other types of

24

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Basic mechanisms in cognition and language with special reference to phonological problems in dyslexia. Author: edited by C. von Euler, I. Lundberg, and R. Llinás; Year: 1998; Amsterdam; New York: Elsevier, 1998; ISBN: 0080427472 http://www.amazon.com/exec/obidos/ASIN/0080427472/icongroupin terna

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Cross-linguistic studies of dyslexia and early language development. Author: edited by Åke Olofsson, Sven Strömqvist; Year: 1998; Luxembourg: Office for Official Publications of the European Communities, 1997 [i.e. 1998]; ISBN: 9282818063

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Dealing with dyslexia. Author: Pat Heaton and Patrick Winterson; Year: 1996; London: Whurr Publishers, 1996; ISBN: 1897635575 http://www.amazon.com/exec/obidos/ASIN/1897635575/icongroupin terna

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Developmental dyslexia: neural, cognitive, and genetic mechanisms. Author: edited by Christopher H. Chase, Glenn D. Rosen, and Gordon F. Sherman; Year: 1996; Baltimore, Md.: York Press, c1996; ISBN: 0912752394 http://www.amazon.com/exec/obidos/ASIN/0912752394/icongroupin terna

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Developmental reading disabilities: a language based treatment approach. Author: Candace L. Goldsworthy; Year: 1996; San Diego: Singular Pub. Group, c1996; ISBN: 1565930851 http://www.amazon.com/exec/obidos/ASIN/1565930851/icongroupin terna

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Dyslexia: a hundred years on. Author: T.R. Miles and Elaine Miles; Year: 1999; Buckingham; Philadelphia: Open University Press, 1999; ISBN: 0335200346 (pbk.) http://www.amazon.com/exec/obidos/ASIN/0335200346/icongroupin terna

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Dyslexia: a multidisciplinary approach. Author: edited by Patience Thomson and Peter Gilchrist; consultant editors, Margaret Edwards, Jean Cooper, and Robert Ringel; Year: 1997; London; New York: Chapman ; Hall; San Diego, Calif.: Distributed in the USA and Canada by Singular Pub. Group, 1997; ISBN: 0412596903 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0412596903/icongroupin terna

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Dyslexia: advances in theory and practice. Author: edited by Ingvar Lundberg, Finn Egil Tønnessen and Ingolv Austad; Year: 1999;

information, such as gene and protein sequences and macromolecular structures. See http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Books.

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Dordrecht; Boston: Kluwer Academic, c1999; ISBN: 0792358376 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0792358376/icongroupin terna ·

Dyslexia: biology, cognition, and intervention. Author: edited by Charles Hulme and Margaret Snowling; Year: 1997; London: Whurr Publishers, 1997; ISBN: 1861560354 http://www.amazon.com/exec/obidos/ASIN/1861560354/icongroupin terna

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Dyslexia: from theory to intervention. Author: by Torleiv Høien and Ingvar Lundberg; Year: 2000; Dordrecht; Boston: Kluwer, c2000; ISBN: 0792363094 (HB: alk. paper) http://www.amazon.com/exec/obidos/ASIN/0792363094/icongroupin terna

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Dyslexia: theory and good practice. Author: edited by Angela J. Fawcett; Year: 2001; London; Philadelphia: Whurr Publishers, 2001; ISBN: 1861562101 http://www.amazon.com/exec/obidos/ASIN/1861562101/icongroupin terna

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Dyslexia and other learning difficulties: the facts. Author: Mark Selikowitz; Year: 1998; Oxford; New York: Oxford University Press, 1998; ISBN: 0192626612 http://www.amazon.com/exec/obidos/ASIN/0192626612/icongroupin terna

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Dyslexia and stress. Author: edited by T.R. Miles and V.P. Varma; Year: 1995; London: Whurr Publishers, 1995; ISBN: 1897635222

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Dyslexia and vision. Author: Bruce J.W. Evans; Year: 2001; London; Philadelphia: Whurr, 2001; ISBN: 186156242X http://www.amazon.com/exec/obidos/ASIN/186156242X/icongroupi nterna

·

Dyslexia, speech, and language: a practitioner's handbook. Author: [edited by] Margaret Snowling and Joy Stackhouse; Year: 1996; London: Whurr Publishers, 1996; ISBN: 1897635486 http://www.amazon.com/exec/obidos/ASIN/1897635486/icongroupin terna

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Dyslexia. Author: Margaret J. Snowling; Year: 2000; Oxford, UK; Malden, Mass.: Blackwell Publishers, 2000; ISBN: 0631221441 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0631221441/icongroupin terna

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LCP solution: the remarkable nutritional treatment for ADHD, dyslexia, and dyspraxia. Author: B. Jacqueline Stordy and Malcolm J. Nicholl; Year: 2000; New York: Ballantine Books, 2000; ISBN: 0345438728 http://www.amazon.com/exec/obidos/ASIN/0345438728/icongroupin terna

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Learning disabilities: implications for psychiatric treatment. Author: edited by Laurence L. Greenhill; Year: 2000; Washington, DC: American Psychiatric Press, c2000; ISBN: 0880483830 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0880483830/icongroupin terna

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Learning to read: an integrated view from research and practice. Author: edited by Terezinha Nunes; Year: 1999; Dordrecht; Boston: Kluwer Academic Publishers, c1999; ISBN: 079235513X (hc.: alk. paper) http://www.amazon.com/exec/obidos/ASIN/079235513X/icongroupi nterna

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Nature of reading disability. Author: Donald E.P. Smith, Patricia M. Carrigan; Year: 1959; New York: Harcourt, Brace, c1959

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Neurodevelopmental approach to specific learning disorders. Author: edited by Kingsley Whitmore, Hilary Hart, Guy Willems; Year: 1999; London: Mac Keith, 1999; ISBN: 1898683115 http://www.amazon.com/exec/obidos/ASIN/1898683115/icongroupin terna

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Optometric management of reading dysfunction. Author: John R. Griffin ... [et al.]; Year: 1997; Boston: Butterworth-Heinemann, c1997; ISBN: 0750695161 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0750695161/icongroupin terna

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Other side of the error term: aging and development as model systems in cognitive neuroscience. Author: edited by Naftali Raz; Year: 1998; Amsterdam; New York: Elsevier, 1998; ISBN: 0444825223 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0444825223/icongroupin terna

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Psychological assessment of dyslexia. Author: Martin Turner; consultant in dyslexia, Margaret Snowling; Year: 1997; London: Whurr Publishers, 1997; ISBN: 1897635532

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Pure alexia: letter-by-letter reading. Author: edited by Max Coltheart; Year: 1998; East Sussex, U.K.: Psychology Press, c1998; ISBN: 0863779999 http://www.amazon.com/exec/obidos/ASIN/0863779999/icongroupin terna

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Understanding specific learning difficulties. Author: Margot Prior; Year: 1996; Hove, East Sussex, UK: Psychology Press, c1996; ISBN: 0863777120 (hbk) http://www.amazon.com/exec/obidos/ASIN/0863777120/icongroupin terna

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Vision and reading. Author: edited by Ralph P. Garzia; Year: 1996; St. Louis: Mosby, c1996; ISBN: 081513438X http://www.amazon.com/exec/obidos/ASIN/081513438X/icongroupi nterna

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Visual characteristics of poor readers [microform]. Author: by Paul Fendrick; Year: 1935; New York City: Bureau of Publications, Teachers College, Columbia University, 1935

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Visual dyslexia: the missing links. Author: Ian Jordan; Year: 2001; London; Philadelphia: J. Kingsley Publishers, 2001; ISBN: 1853029629 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/1853029629/icongroupin terna

Chapters on Dyslexia Frequently, dyslexia will be discussed within a book, perhaps within a specific chapter. In order to find chapters that are specifically dealing with dyslexia, an excellent source of abstracts is the Combined Health Information Database. You will need to limit your search to book chapters and dyslexia using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find book chapters, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Book Chapter.” By making these selections and typing in “dyslexia” (or synonyms) into the “For these words:” box, you will only receive results on chapters in books. The following is a typical result when searching for book chapters on dyslexia: ·

Reading and Spelling Disorders Source: in Vinson, B.P. Essentials for Speech-Language Pathologists. San Diego, CA: Singular Publishing Group. 2001. p. 349-375. Contact: Available from Thomson Learning Group. P.O. Box 6904, Florence, KY 41022. (800) 842-3636. Fax (606) 647-5963. Website: www.singpub.com. Price: $49.95 plus shipping and handling. ISBN: 0769300715.

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Summary: This chapter on reading and spelling disorders (dyslexia) is from a textbook that is designed to help new professionals with the transition to clinical practice in speech language pathology. In order to determine a child's status with regard to reading, it is necessary to assess his or her visual and auditory modalities to determine whether there is a problem and, if so, where the problem lies. Auditorily, an emphasis should be placed on phonics, phonetics, and linguistic information. The author first defines dyslexia and describes normal reading skills, then discusses problem areas with readers in trouble, dyslexia, neurological factors in dyslexia, the role of the speech language pathologist in diagnosing and treating developmental dyslexia, the DSM IV criteria for reading disorders, assessment considerations, specific assessment tools that can be utilized, and treatment protocols, {the Orton Gillingham method, the Auditory Discrimination in Depth program, Project Read, Montessori reading instruction, the Whole Language Approach, the Laubach method, the Brody reading method, the Wilson Reading System for Older Students from grade 6 to adulthood, and the J and J Reading Materials}. 4 tables. ·

Child with More than One Disability Source: in Cornett, R.O. and Daisey, M.E. Cued Speech Resource Book for Parents of Deaf Children. 2nd ed. Cleveland, OH: National Cued Speech Association. 2001. p. 537-562. Contact: Available from National Cued Speech Association. 23970 Hermitage Road, Cleveland, OH 44122-4008. Voice/TTY (800) 459-3529 or (216) 292-6213. E-mail: [email protected]. Price: $37.50 for members; $39.50 for nonmembers, plus shipping and handling. ISBN: 0963316419. Summary: Hearing impairment often occurs concurrently with one or more other disabling conditions that may impede communication or learning, such as memory problems, mental retardation, aphasia (lack of language comprehension), dyslexia, dysarthria (motor speech disorders), cerebral palsy, Usher syndrome (a cause of deaf blindness), and others. This chapter on children with more than one disability is from a book that offers an overview of cued speech, the use of hand cues with speech that permits the deaf child to learn the English language. The book includes information and advice for parents who have decided to use Cued Speech with a child who is deaf or hard of hearing, or are considering doing so. The authors discuss specific overlying conditions, including minor or correctable conditions, cerebral palsy, memory problems, aphasia, apraxia (difficulty in expressive language), dyslexia, deaf blindness, and nonspecific learning disability. The chapter then offers case histories of children who have at least one other learning

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problem in addition to hearing impairment. Two case histories, while not featuring additional learning problems, tell of children whose early years were so dominated by health problems that there appeared to be little hope for normal development of language, communication, or reading. ·

Visual, Auditory, and Motor Processing Source: in Mather, N. and Goldstein, S. Learning Disabilities and Challenging Behaviors: A Guide to Intervention and Classroom Management. Baltimore, MD: Paul H. Brookes Publishing. 2001. p. 165211. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $44.95 plus shipping and handling. ISBN: 1557665001. Summary: This chapter is from a book in which the authors propose a model called the Building Blocks of Learning, to explain why some children experience learning and behavior problems in the classroom and to detail the ways to help these students. The model includes 10 building blocks important to learning success, divided into three levels: the foundational level, the symbolic level, and the conceptual level. This chapter describes visual, auditory, and motor processing. These abilities, in the symbolic blocks of the framework, help children to process, produce, recall, and retrieve information. These abilities enable children to master the symbolic aspects of language (i.e., word identification, spelling, calculating, and handwriting). In this chapter, the authors review the difficulties that children experience when they have weaknesses in visual, auditory, or motor blocks, and suggest several informal assessments to use. In the section on the visual building block, the authors cover a definition and characteristics of orthographic awareness, the visual block questionnaire, a brief historical review of dyslexia, research on orthographic dyslexia, rapid automatized naming, and implications for intervention. In the section on the auditory (hearing) building block, the authors discuss the auditory block questionaire, a definition of phonological awareness, phonological dyslexia, a brief historical review, developmental sequence, and assessment and instructional activities. The authors also discuss fine motor development and classroom accommodations, including copying, the use of timed tests, following directions, and assignments. One appendix offers a screening of early reading processes; another explores the relationship between speech sounds and spelling development. The text is designed for teaching preservice educators and specialists to understand how

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specific developmental, behavioral, and academic problems influence school success. 21 figures. 8 tables. ·

Multisensory Instruction Source: in Birsh, J.R., ed. Multisensory Teaching of Basic Language Skills. Baltimore, MD: Paul H. Brookes Publishing Co. 1999. p. 1-17. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $59.00 plus shipping and handling. ISBN: 1557663491. Summary: This introductory chapter is from a textbook that focuses on multisensory language (MSLE). It provides teaching strategies for teachers working with students who have dyslexia and other students who struggle with reading, writing, and spelling. This chapter defines what multisensory education means, discusses how it has been implemented in the past, evaluates what direct and indirect evidence there is for its efficacy, and describes what other research might be needed to validate the beliefs and practices of experienced clinicians. The term multisensory has been used to refer to any learning activity that includes the use of two or more sensory modalities simultaneously to take in or express information. Over time, practitioners have learned that parsing language into small pieces with the aid of multisensory experiences and direct, systematic, sequential, and cumulative teaching allows struggling students to learn basic language skills. The authors focus on this type of instruction used to educate novice or poor readers in language concepts and associations integrating the senses: visual, auditory, kinesthetic, and tactile. 2 figures. 1 table. 67 references.

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Development of Oral Language and Its Relationship to Literacy Source: in Birsh, J.R., ed. Multisensory Teaching of Basic Language Skills. Baltimore, MD: Paul H. Brookes Publishing Co. 1999. p. 19-61. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $59.00 plus shipping and handling. ISBN: 1557663491. Summary: Language is perceived and used by humans on many levels and for many purposes, including reading. This chapter on the development of oral language and its relationship to literacy is from a textbook that focuses on multisensory language (MSLE). It provides teaching strategies for teachers working with students who have dyslexia and other students who struggle with reading, writing, and spelling. This

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chapter tackles language and it relationship to literacy and learning from both a developmental and pedagogical point of view. It describes the stark differences and the similarities of oral and written language. The authors focus on making teachers aware of the role that language plays as a child learns to decode words and comprehend the meaning of written text. The authors detail the components of language: form (phonology, morphology, and syntax), content (semantics), and use (pragmatics). For each of these components, the patterns of typical and disordered development and their parallel relationships to reading and writing are explained. The chapter also discusses the possible effects of middle ear infections on overall language and academic development and offers suggestions for working with children with recurrent middle ear infections. 4 figures. 6 tables. 152 references. ·

Alphabet Knowledge: Letter Recognition, Naming, and Sequencing Source: in Birsh, J.R., ed. Multisensory Teaching of Basic Language Skills. Baltimore, MD: Paul H. Brookes Publishing Co. 1999. p. 85-117. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $59.00 plus shipping and handling. ISBN: 1557663491. Summary: This chapter on alphabet knowledge (letter recognition, naming, and sequencing) is from a textbook that focuses on multisensory language (MSLE). It provides teaching strategies for teachers working with students who have dyslexia and other students who struggle with reading, writing, and spelling. This chapter assembles a significant amount of evidence that letter recognition and naming are essential components in learning to read and gain access to information in our culture. The authors contend that students with dyslexia especially need to understand the dictionary to check their work. The first section of the chapter advocates teaching accurate and fast letter recognition and letter naming when reading instruction begins. The second section presents a variety of multisensory lessons, activities, and games to help students with dyslexia to develop reliable and rapid letter sound associations. Many activities are derived from the experiences of clinical practitioners and involved guided discovery teaching in which the teacher leads the learner to make discoveries through careful questioning based on the learner's knowledge. The final section of the chapter describes activities to teach alphabetizing skills. After acquiring alphabet skills, it is not unusual for students with dyslexia to excel at them and gain a sense of confidence when dealing with word sources. 2 figures. 45 references.

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Short History of the English Language Source: in Birsh, J.R., ed. Multisensory Teaching of Basic Language Skills. Baltimore, MD: Paul H. Brookes Publishing Co. 1999. p. 119-139. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $59.00 plus shipping and handling. ISBN: 1557663491. Summary: This chapter presents a short history of written English and introduces the reader to the structure of English orthography, the English spelling system. This chapter is from a textbook that focuses on multisensory language (MSLE). It provides teaching strategies for teachers working with students who have dyslexia and other students who struggle with reading, writing, and spelling. The author explains that instruction in phonics alone is not sufficient. Once students have learned the basics of the letter sound correspondences, syllable types, and syllable division patterns, they will need to gain facility with words that have Latin and Greek origins. Addressing the history of English in MSLE also provides a framework for teaching a decoding and spelling curriculum based on word origin and word structure. Students will be able to analyze numerous kinds of multisyllabic words more easily. Teachers who understand the origins of words can enhance their presentation of reading instruction, improve their assessment skills, communicate clearly about the features of the language, and convey useful strategies to their students. The author outlines events in the development of English and then describes the letter sound correspondence, syllable patterns, and morpheme patterns unique to English words of Anglo Saxon, Latin, and Greek origin. The chapter also presents sample lesson plans centered around words from these origin languages. 3 appendices. 1 figure. 2 tables. 36 references.

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Teaching Reading: Accurate Decoding and Fluency Source: in Birsh, J.R., ed. Multisensory Teaching of Basic Language Skills. Baltimore, MD: Paul H. Brookes Publishing Co. 1999. p. 141-182. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $59.00 plus shipping and handling. ISBN: 1557663491. Summary: Accurate and fluent reading should be the outcome of a well structured research and language based reading program. This chapter on teaching reading is from a textbook that focuses on multisensory language (MSLE). It provides teaching strategies for teachers working

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with students who have dyslexia and other students who struggle with reading, writing, and spelling. This chapter presents a blueprint for a reading program and discusses both the developmental stages of learning to read and a precise, step by step curriculum appropriate for a range of students. The author first delineates the key elements of a multisensory, structured presentation of decoding instruction, phonemic awareness, and letter recognition. Next, the author explains how to introduce the concepts of vowel and consonant sounds and blending sounds. Decoding instruction can easily be incorporated into a literature based reading curriculum, and an example of a daily lesson plan is provided. The chapter also describes syllable types in English and how to introduce them to students. Morphology units (prefixes and suffixes) and syllable division are given the same analysis. In addition, the author presents a specific procedure of teaching irregular words and gives suggestions for the development of fluency in both oral and silent reading. 4 figures. 4 tables. 73 references. ·

Teaching Comprehension from a Multisensory Perspective Source: in Birsh, J.R., ed. Multisensory Teaching of Basic Language Skills. Baltimore, MD: Paul H. Brookes Publishing Co. 1999. p. 183-215. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $59.00 plus shipping and handling. ISBN: 1557663491. Summary: Comprehension is the primary goal in purposeful reading. To comprehend is to assemble many complex linguistic and cognitive processes, such as using background knowledge; making predictions; summarizing, analyzing, and evaluating ideas; and drawing conclusions. This chapter on teaching comprehension is from a textbook that focuses on multisensory language (MSLE). It provides teaching strategies for teachers working with students who have dyslexia and other students who struggle with reading, writing, and spelling. This chapter opens with a historical overview of comprehension instruction; an overview of various approaches to teaching comprehension; and a discussion of intra learner factors that can affect its development. The author addresses when to begin comprehension instruction and what materials to use. The chapter progresses from the introduction of the noun and words in other grammatical classes, to the teaching of sentence elements, to the introduction of links between comprehension and written composition. The author concludes by presenting outstanding examples of how to teach the elements of both narrative and expository texts. 5 figures. 36 references.

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Teaching Spelling Source: in Birsh, J.R., ed. Multisensory Teaching of Basic Language Skills. Baltimore, MD: Paul H. Brookes Publishing Co. 1999. p. 217-256. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $59.00 plus shipping and handling. ISBN: 1557663491. Summary: Learning to spell is not simply a by product of learning to read; it plays an important role in learning to read and enhances reading proficiency by reinforcing letter patterns. Spelling, however, is a far more difficult skill to learn than reading. This chapter on teaching spelling is from a textbook focuses on multisensory language (MSLE). It provides teaching strategies for teachers working with students who have dyslexia and other students who struggle with reading, writing, and spelling. This chapter explains how spelling requires explicit instruction supported by the teacher's knowledge of how spelling develops, the structure of spoken and written language, and how the orthography is represented in the alphabetic language of English. The author describes spelling development and explores the problems of poor spellers, such as difficulties with phonological processing and with memory for letter patterns. Next, the author outlines the knowledge necessary for teaching spelling, such as an understanding of the sounds of the English language and how they are produced, and a handle on the patterns and rules that govern how words are spelled. The author suggests an order of presentation in spelling instruction and includes many examples of discovery teaching procedures. 5 figures. 7 tables. 56 references.

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Teaching Handwriting Source: in Birsh, J.R., ed. Multisensory Teaching of Basic Language Skills. Baltimore, MD: Paul H. Brookes Publishing Co. 1999. p. 257-280. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $59.00 plus shipping and handling. ISBN: 1557663491. Summary: This chapter on teaching handwriting is from a textbook focuses on multisensory language (MSLE). It provides teaching strategies for teachers working with students who have dyslexia and other students who struggle with reading, writing, and spelling. In most books on reading and learning disabilities, handwriting instruction is given scant attention; in contrast, this chapter gives the rationale for placing handwriting in a prominent position as a vital component of MSLE.

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Handwriting instruction reinforces reading and spelling and provides practice in a skill with which students with dyslexia often struggle. In addition, fluent handwriting aids note taking, test taking, and other daily activities. Learning the shapes of each letter through analysis of strokes and structured practice promotes the integration of the visual, motor, and phonological characteristics of letters and often leads to improvement in spelling. The author presents multisensory instruction strategies in both print and cursive handwriting, with rationales for teaching each. The author also outlines the stages of handwriting development. Proper paper, pencil, and body position are explained; pointers on working with left handed students are given as well. The last section offers detailed lessons in print and cursive handwriting along with helpful charts that contain models of upper and lowercase letter shapes, with teacher verbalizations to promote consistency during lessons. 12 figures. 58 references. ·

Composition: Expressive Language and Writing Source: in Birsh, J.R., ed. Multisensory Teaching of Basic Language Skills. Baltimore, MD: Paul H. Brookes Publishing Co. 1999. p. 281-298. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $59.00 plus shipping and handling. ISBN: 1557663491. Summary: The development of narrative skills and sound expository writing abilities, discussing ideas or explaining processes, should be the primary aims of a written language curriculum. This chapter on teaching composition (expressive language and writing) is from a textbook focuses on multisensory language (MSLE). It provides teaching strategies for teachers working with students who have dyslexia and other students who struggle with reading, writing, and spelling. This chapter provides a program in composition instruction with clear guidelines and goals. The author describes sentence activities that use scrambled sentences, different sentence types, sentence kernels, and frequently used conjunctions and transition phrases. The author then provides paragraph activities that involve topic sentences and supporting details. Next, activities geared toward writing various kinds of longer expository compositions are given. The author describes three useful outline forms with preliminary activities and directions to accomplish these sequenced steps in writing. The chapter suggests techniques for revising and editing and lists many questions that teachers can use to help students focus on ways to improve and correct their work. 4 figures. 2 tables. 5 references.

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Multisensory Mathematics Instruction Source: in Birsh, J.R., ed. Multisensory Teaching of Basic Language Skills. Baltimore, MD: Paul H. Brookes Publishing Co. 1999. p. 299-322. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $59.00 plus shipping and handling. ISBN: 1557663491. Summary: This chapter on multisensory mathematics instruction is from a textbook that focuses on multisensory language (MSLE). It provides teaching strategies for teachers working with students who have dyslexia and other students who struggle with reading, writing, and spelling. This chapter is devoted to the description of the Structural Arithmetic method of teaching mathematical concepts, in which multisensory materials are used. This teaching approach helps children discover mathematical concepts and relationships through student and teacher manipulation of multisensory materials such as blocks, numbered tiles, and trays of various sizes. The author first describes children's exploration of the materials and the many things they can do with numbers. The children develop a language of mathematics as they naturally express their thoughts about their discoveries. The next step is to record the ideas with math symbols. Then, students learn number patterns, which they later relate to addition and subtraction facts, and they learn all of the combinations that make up 10. They also learn how to record math facts as equations. The chapter explains numerous games and activities so that students can gain confidence in such concepts as place value, zero, and the meaning and structure of two digit numerals. Next, students learn the concept of regrouping for addition and subtraction. The final sections of the chapter cover multiplication, division (including division with a remainder), and word problems. The author notes that the difficulties that children with learning disabilities have with language concepts and associations, with memory, and with sustained attention also affect their grasp of mathematical concepts. 7 figures. 4 references.

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Applying Multisensory Techniques to Interdisciplinary Studies Source: in Birsh, J.R., ed. Multisensory Teaching of Basic Language Skills. Baltimore, MD: Paul H. Brookes Publishing Co. 1999. p. 323-335. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $59.00 plus shipping and handling. ISBN: 1557663491.

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Summary: This chapter on applying multisensory techniques to interdisciplinary studies is from a textbook that focuses on multisensory language (MSLE). It provides teaching strategies for teachers working with students who have dyslexia and other students who struggle with reading, writing, and spelling. This chapter illustrates how the indepth study of a topic can help students capture the connections among subject areas in school and avoid fragmented learning. Rather than rely on abstract textbook descriptions of a topic, students with dyslexia can engage in real life presentations of materials. Interdisciplinary studies may also be called thematic units, central study, or integrated curriculum. The authors explain ways to choose what to study in a thematic unit based on the style of education in the school, the expectations of the community, and most of all, the needs of the students and teachers. Through examples from actual classes of students with learning disabilities, the authors also demonstrate how a unit of interdisciplinary studies can be taught at many different levels. The chapter also addresses how to wrap up a thematic unit so that students can share their knowledge with others and how to evaluate students using multisensory methods instead of traditional testing only. The chapter concludes with a discussion of ways that teachers can gain support for multisensory, interdisciplinary teaching. 3 figures. 5 references. ·

Organization and Study Skills Source: in Birsh, J.R., ed. Multisensory Teaching of Basic Language Skills. Baltimore, MD: Paul H. Brookes Publishing Co. 1999. p. 337-381. Contact: Available from Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Fax (410) 337-8539. Website: www.brookespublishing.com. Price: $59.00 plus shipping and handling. ISBN: 1557663491. Summary: This chapter on organization and study skills is from a textbook that focuses on multisensory language (MSLE). It provides teaching strategies for teachers working with students who have dyslexia and other students who struggle with reading, writing, and spelling. This chapter focuses on the techniques for training students in organization, time management, and specific learning strategies and study skills, which can be adapted immediately and applied to content subjects. The author details the typical difficulties of dyslexic adolescents and the effect of these difficulties on learning and academic success. Next, the author describes tips for working with preadolescent and adolescent dyslexic students, followed by a description of the materials to be used and the specific way in which to arrange them. The author then describes learning strategies and study skills techniques. The first phase of study

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skills training consists of Quick Tricks to help improve the student's relationship with his or her teachers. The second phase of study skills training comprised Advanced Quick Tricks to clear up high frequency spilling and mechanics errors and to give the student strategies for completing work and dealing with long texts in emergencies. The third phase of study skills training attends to critical thinking and developing higher order language skills, such as proofreading, using memory aids, writing summaries, and creating outlines. 9 figures. 69 references.

Directories In addition to the references and resources discussed earlier in this chapter, a number of directories relating to dyslexia have been published that consolidate information across various sources. These too might be useful in gaining access to additional guidance on dyslexia. The Combined Health Information Database lists the following, which you may wish to consult in your local medical library:25 ·

Brain Connections: Your Source Guide to Information on Brain Diseases and Disorders. 5th ed Source: New York, NY: Dana Alliance for Brain Initiatives. 2000. 49 p. Contact: Available from Dana Press. Charles A. Dana Foundation, 745 Fifth Avenue, Suite 700, New York, NY 10151. Fax (212) 593-7623. Website: www.dana.org. Price: Single copy free. Summary: This guide lists organizations that assist people with a brainrelated disorder or disease as well as those organizations that assist caregivers and health care providers in these areas. The guide lists more than 275 organizations alphabetically by disease or disorder. Listings of particular relevance to communication disorders include: acoustic neuroma, aphasia, ataxia, attention deficit hyperactivity disorder, autism, deafness and hearing loss, disability and rehabilitation, dizziness, dyslexia, dystonia, head injury, learning disabilities, neurofibromatosis,

You will need to limit your search to “Directories” and dyslexia using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find directories, use the drop boxes at the bottom of the search page where “You may refine your search by”. For publication date, select “All Years”, select language and the format option “Directory”. By making these selections and typing in “dyslexia” (or synonyms) into the “For these words:” box, you will only receive results on directories dealing with dyslexia. You should check back periodically with this database as it is updated every three months. 25

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smell and taste (chemosensory) disorders, spasmodic dysphonia, stuttering, tinnitus, Tourette syndrome, and vestibular disorders. Emphasis is placed on organizations that have a national focus, however, many of these groups sponsor local chapters or affiliates and make referrals to local medical professionals and organizations. For each organization listed, the guide notes mailing address, telephone numbers, e-mail and web sites; also provided are symbols which indicate that the organization offers support groups, referrals to doctors, referrals to other sources of information, regional chapters, availability of literature, availability of speakers, and volunteer opportunities. The guide also describes the publishing body, the Dana Alliance for Brain Initiatives, and provides a list of ways in which readers can support and further brain research. ·

Parent Resources: Agencies, Organizations, Support Groups Source: in DeFeo, A.B., ed. Parent Articles 2. San Antonio, TX: Communication Skill Builders. 1995. p. 213-234. Contact: Available from Communication Skill Builders. Customer Service, 555 Academic Court, San Antonio, TX 78204-2498. (800) 211-8378; Fax (800) 232-1223. Price: $55.00 plus shipping and handling. Order Number 076-163-0732. Summary: This appendix section is from a parent education skill builders textbook. The appendix lists agencies, organizations, and support groups that parents might want to contact as they work with developing communication skills in and with their child. National information and advocacy groups are listed, including groups for consumer information, education, financial aid, home care, legal assistance, nonoral communication, orthotics and prosthetics, psychiatry, psychology, rare disorders, rehabilitation, residential placement, self-help, severe disabilities, sibling support, social workers, and telephone usage for persons with disabilities. Also listed are national organizations for specific disabilities and conditions, including acoustic neuroma, autism, birth defects, chronic dizziness and balance disorders, cleft palate and craniofacial disorders, developmental disabilities, Down's syndrome, dyslexia, dystonia, genetic conditions, head injuries, hearing impairments, learning disabilities, mental retardation, neurofibromatosis, neurological disorders, stuttering, Tourette syndrome, and voice disorders and laryngectomies. The address and telephone number for each organization are noted.

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General Home References In addition to references for dyslexia, you may want a general home medical guide that spans all aspects of home healthcare. The following list is a recent sample of such guides (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Adams & Victor’s Principles Of Neurology by Maurice Victor, et al; Hardcover - 1692 pages; 7th edition (December 19, 2000), McGraw-Hill Professional Publishing; ISBN: 0070674973; http://www.amazon.com/exec/obidos/ASIN/0070674973/icongroupinterna · American Academy of Pediatrics Guide to Your Child’s Symptoms : The Official, Complete Home Reference, Birth Through Adolescence by Donald Schiff (Editor), et al; Paperback - 256 pages (January 1997), Villard Books; ISBN: 0375752579; http://www.amazon.com/exec/obidos/ASIN/0375752579/icongroupinterna · The Children’s Hospital Guide to Your Child’s Health and Development by Alan D. Woolf (Editor), et al; Hardcover - 796 pages, 1st edition (January 15, 2001), Perseus Books; ISBN: 073820241X; http://www.amazon.com/exec/obidos/ASIN/073820241X/icongroupinterna · Clinical Neuroanatomy Made Ridiculously Simple (MedMaster Series, 2000 Edition) by Stephen Goldberg; Paperback: 97 pages; 2nd edition (February 15, 2000), Medmaster; ISBN: 0940780461; http://www.amazon.com/exec/obidos/ASIN/0940780461/icongroupinterna · Helping Your Child in the Hospital: A Practical Guide for Parents by Nancy Keene, Rachel Prentice; Paperback - 176 pages, 3rd edition (April 15, 2002), O’Reilly & Associates; ISBN: 0596500114; http://www.amazon.com/exec/obidos/ASIN/0596500114/icongroupinterna · It’s Not a Tumor!: The Patient’s Guide to Common Neurological Problems by Robert Wiedemeyer; Paperback: (January 1996), Boxweed Pub; ISBN: 0964740796; http://www.amazon.com/exec/obidos/ASIN/0964740796/icongroupinterna · Medical Emergencies & Childhood Illnesses: Includes Your Child’s Personal Health Journal (Parent Smart) by Penny A. Shore, William Sears (Contributor); Paperback - 115 pages (February 2002), Parent Kit Corporation; ISBN: 1896833187; http://www.amazon.com/exec/obidos/ASIN/1896833187/icongroupinterna · Neurology for the Non-Neurologist by William J. Weiner (Editor), Christopher G. Goetz (Editor); Paperback (May 1999), Lippincott, Williams

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& Wilkins Publishers; ISBN: 0781717078; http://www.amazon.com/exec/obidos/ASIN/0781717078/icongroupinterna · Taking Care of Your Child: A Parent’s Guide to Complete Medical Care by Robert H. Pantell, M.D., et al; Paperback - 524 pages, 6th edition (March 5, 2002), Perseus Press; ISBN: 0738206016; http://www.amazon.com/exec/obidos/ASIN/0738206016/icongroupinterna

Vocabulary Builder Dementia: An acquired organic mental disorder with loss of intellectual abilities of sufficient severity to interfere with social or occupational functioning. The dysfunction is multifaceted and involves memory, behavior, personality, judgment, attention, spatial relations, language, abstract thought, and other executive functions. The intellectual decline is usually progressive, and initially spares the level of consciousness. [NIH] Dysarthria: Imperfect articulation of speech due to disturbances of muscular control which result from damage to the central or peripheral nervous system. [EU] Dystonia: Disordered tonicity of muscle. [EU] Ethanol: A clear, colorless liquid rapidly absorbed from the gastrointestinal tract and distributed throughout the body. It has bactericidal activity and is used often as a topical disinfectant. It is widely used as a solvent and preservative in pharmaceutical preparations as well as serving as the primary ingredient in alcoholic beverages. [NIH] Neuroanatomy: Study of the anatomy of the nervous system as a specialty or discipline. [NIH] Neuropsychology: A branch of psychology which investigates the correlation between experience or behavior and the basic neurophysiological processes. The term neuropsychology stresses the dominant role of the nervous system. It is a more narrowly defined field than physiological psychology or psychophysiology. [NIH] Pupil: The aperture in the iris through which light passes. [NIH] Semantics: The relationships between symbols and their meanings. [NIH] Spasmodic: Of the nature of a spasm. [EU] Tinnitus: A noise in the ears, as ringing, buzzing, roaring, clicking, etc. Such sounds may at times be heard by others than the patient. [EU]

Multimedia 99

CHAPTER 7. MULTIMEDIA ON DYSLEXIA Overview Information on dyslexia can come in a variety of formats. Among multimedia sources, video productions, slides, audiotapes, and computer databases are often available. In this chapter, we show you how to keep current on multimedia sources of information on dyslexia. We start with sources that have been summarized by federal agencies, and then show you how to find bibliographic information catalogued by the National Library of Medicine. If you see an interesting item, visit your local medical library to check on the availability of the title.

Video Recordings Most medical conditions do not have a video dedicated to them. If they do, they are often rather technical in nature. An excellent source of multimedia information on dyslexia is the Combined Health Information Database. You will need to limit your search to “video recording” and “dyslexia” using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find video productions, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Videorecording (videotape, videocassette, etc.).” By making these selections and typing “dyslexia” (or synonyms) into the “For these words:” box, you will only receive results on video productions. The following is a typical result when searching for video recordings on dyslexia:

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·

Dyslexia: Diagnosis and Treatment Source: Princeton, NJ: Films for the Humanities and Sciences. 199X. (videocassette). Contact: Available from Films for the Humanities and Sciences. P.O. Box 2053, Princeton, NJ 08543-2053. Voice (800) 257-5126 or (609) 275-1400; Fax (609) 275-3767. Price: $149.00 purchase or $75.00 rental; plus shipping and handling; price for 3/4 in U-matic format may vary. Stock Number BA5144. Summary: This videotape program explains dyslexia and the many ways in which it is manifested; the extensive testing necessary to make a diagnosis of dyslexia; and the role of heredity. Treatment builds on the student's strengths, while focusing on his or her weaknesses; treatment may involve neurological, psychological, or neuropsychological aspects, as well as individually-adapted language, auditive, reading, and spelling training programs. The program gives examples of each of these types of therapy. (AA-M).

Bibliography: Multimedia on Dyslexia The National Library of Medicine is a rich source of information on healthcare-related multimedia productions including slides, computer software, and databases. To access the multimedia database, go to the following Web site: http://locatorplus.gov/. Select “Search LOCATORplus.” Once in the search area, simply type in dyslexia (or synonyms). Then, in the option box provided below the search box, select “Audiovisuals and Computer Files.” From there, you can choose to sort results by publication date, author, or relevance. The following multimedia has been indexed on dyslexia. For more information, follow the hyperlink indicated: ·

Child psychiatry in the brain. Source: Judith Rapoport; Year: 1993; Format: Sound recording; [Bethesda, Md.: National Institutes of Health, 1993]

·

Could it be dyslexia? Source: Bright Solutions for Dyslexia, LLC; Year: 2000; Format: Videorecording; San Jose, CA: Bright Solutions for Dyslexia, c2000

·

Dyslexia: diagnosis and prognosis. Source: a Films for the Humanities and Sciences presentation; a joint production of Dartmouth-Hitchcock Medical Center and WNHT-TV21; Year: 1990; Format: Videorecording; [Princeton, N.J.]: Films for the Humanities, c1990

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·

Dyslexia: diagnosis and therapy. Source: a presentation of Films for the Humanities & Sciences; a Poseidon production for Channel Four; Year: 1994; Format: Videorecording; Princeton, N.J.: Films for the Humanities and Sciences, c1994

·

Dyslexia: theory, diagnosis, treatment. Source: a presentation of Films for the Humanities & Sciences; a production of the University of Nijmegen; Year: 1994; Format: Videorecording; Princeton, N.J.: Films for the Humanities and Sciences, c1994

·

Dyslexia. Source: Brooke Army Medical Center; Year: 1971; Format: Videorecording; Fort Sam Houston, Tex.: Academy of Health Sciences, 1971

·

School aged children with oral language and reading disorders. Source: produced by the National Center for Neurogenic Communication Disorders of the University of Arizona; Year: 1995; Format: Videorecording; [Tucson, Ariz.]: Arizona Board of Regents, c1995

·

Tangled, dealing with dyslexia. Source: a presentation of Films for the Humanities & Sciences; produced with the participation of Saskatchewan Communications Network, produced with the participation of SaskFILM; a co-production between Heartla; Year: 1996; Format: Videorecording; Princeton, N.J.: Films for the Humanities ; Sciences, c1996

Vocabulary Builder Heredity: 1. the genetic transmission of a particular quality or trait from parent to offspring. 2. the genetic constitution of an individual. [EU]

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CHAPTER 8. PHYSICIAN GUIDELINES AND DATABASES Overview Doctors and medical researchers rely on a number of information sources to help children with dyslexia. Many will subscribe to journals or newsletters published by their professional associations or refer to specialized textbooks or clinical guides published for the medical profession. In this chapter, we focus on databases and Internet-based guidelines created or written for this professional audience.

NIH Guidelines For the more common medical conditions, the National Institutes of Health publish guidelines that are frequently consulted by physicians. Publications are typically written by one or more of the various NIH Institutes. For physician guidelines, commonly referred to as “clinical” or “professional” guidelines, you can visit the following Institutes: ·

Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm

·

National Institute of General Medical Sciences (NIGMS); fact sheets available at http://www.nigms.nih.gov/news/facts/

·

National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines: http://www.nlm.nih.gov/medlineplus/healthtopics.html

·

National Institute of Neurological Disorders and Stroke (NINDS); neurological disorder information pages available at http://www.ninds.nih.gov/health_and_medical/disorder_index.htm

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NIH Databases In addition to the various Institutes of Health that publish professional guidelines, the NIH has designed a number of databases for professionals.26 Physician-oriented resources provide a wide variety of information related to the biomedical and health sciences, both past and present. The format of these resources varies. Searchable databases, bibliographic citations, full text articles (when available), archival collections, and images are all available. The following are referenced by the National Library of Medicine:27 ·

Bioethics: Access to published literature on the ethical, legal and public policy issues surrounding healthcare and biomedical research. This information is provided in conjunction with the Kennedy Institute of Ethics located at Georgetown University, Washington, D.C.: http://www.nlm.nih.gov/databases/databases_bioethics.html

·

HIV/AIDS Resources: Describes various links and databases dedicated to HIV/AIDS research: http://www.nlm.nih.gov/pubs/factsheets/aidsinfs.html

·

NLM Online Exhibitions: Describes “Exhibitions in the History of Medicine”: http://www.nlm.nih.gov/exhibition/exhibition.html. Additional resources for historical scholarship in medicine: http://www.nlm.nih.gov/hmd/hmd.html

·

Biotechnology Information: Access to public databases. The National Center for Biotechnology Information conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information for the better understanding of molecular processes affecting human health and disease: http://www.ncbi.nlm.nih.gov/

·

Population Information: The National Library of Medicine provides access to worldwide coverage of population, family planning, and related health issues, including family planning technology and programs, fertility, and population law and policy: http://www.nlm.nih.gov/databases/databases_population.html

·

Cancer Information: Access to caner-oriented databases: http://www.nlm.nih.gov/databases/databases_cancer.html

Remember, for the general public, the National Library of Medicine recommends the databases referenced in MEDLINEplus (http://medlineplus.gov/ or http://www.nlm.nih.gov/medlineplus/databases.html). 27 See http://www.nlm.nih.gov/databases/databases.html. 26

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·

Profiles in Science: Offering the archival collections of prominent twentieth-century biomedical scientists to the public through modern digital technology: http://www.profiles.nlm.nih.gov/

·

Chemical Information: Provides links to various chemical databases and references: http://sis.nlm.nih.gov/Chem/ChemMain.html

·

Clinical Alerts: Reports the release of findings from the NIH-funded clinical trials where such release could significantly affect morbidity and mortality: http://www.nlm.nih.gov/databases/alerts/clinical_alerts.html

·

Space Life Sciences: Provides links and information to space-based research (including NASA): http://www.nlm.nih.gov/databases/databases_space.html

·

MEDLINE: Bibliographic database covering the fields of medicine, nursing, dentistry, veterinary medicine, the healthcare system, and the pre-clinical sciences: http://www.nlm.nih.gov/databases/databases_medline.html

·

Toxicology and Environmental Health Information (TOXNET): Databases covering toxicology and environmental health: http://sis.nlm.nih.gov/Tox/ToxMain.html

·

Visible Human Interface: Anatomically detailed, three-dimensional representations of normal male and female human bodies: http://www.nlm.nih.gov/research/visible/visible_human.html

While all of the above references may be of interest to physicians who study and treat dyslexia, the following are particularly noteworthy.

The NLM Gateway28 The NLM (National Library of Medicine) Gateway is a Web-based system that lets users search simultaneously in multiple retrieval systems at the U.S. National Library of Medicine (NLM). It allows users of NLM services to initiate searches from one Web interface, providing “one-stop searching” for many of NLM’s information resources or databases.29 One target audience for the Gateway is the Internet user who is new to NLM’s online resources and does not know what information is available or how best to search for it. This audience may include physicians and other healthcare providers, Adapted from NLM: http://gateway.nlm.nih.gov/gw/Cmd?Overview.x. The NLM Gateway is currently being developed by the Lister Hill National Center for Biomedical Communications (LHNCBC) at the National Library of Medicine (NLM) of the National Institutes of Health (NIH).

28 29

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researchers, librarians, students, and, increasingly, parents and the public.30 To use the NLM Gateway, simply go to the search site at http://gateway.nlm.nih.gov/gw/Cmd. Type “dyslexia” (or synonyms) into the search box and click “Search.” The results will be presented in a tabular form, indicating the number of references in each database category. Results Summary Category Items Found Journal Articles 346318 Books / Periodicals / Audio Visual 2566 Consumer Health 294 Meeting Abstracts 3093 Other Collections 100 Total 352371

HSTAT31 HSTAT is a free, Web-based resource that provides access to full-text documents used in healthcare decision-making.32 HSTAT’s audience includes healthcare providers, health service researchers, policy makers, insurance companies, consumers, and the information professionals who serve these groups. HSTAT provides access to a wide variety of publications, including clinical practice guidelines, quick-reference guides for clinicians, consumer health brochures, evidence reports and technology assessments from the Agency for Healthcare Research and Quality (AHRQ), as well as AHRQ’s Put Prevention Into Practice.33 Simply search by “dyslexia” (or synonyms) at the following Web site: http://text.nlm.nih.gov. Other users may find the Gateway useful for an overall search of NLM’s information resources. Some searchers may locate what they need immediately, while others will utilize the Gateway as an adjunct tool to other NLM search services such as PubMed® and MEDLINEplus®. The Gateway connects users with multiple NLM retrieval systems while also providing a search interface for its own collections. These collections include various types of information that do not logically belong in PubMed, LOCATORplus, or other established NLM retrieval systems (e.g., meeting announcements and pre-1966 journal citations). The Gateway will provide access to the information found in an increasing number of NLM retrieval systems in several phases. 31 Adapted from HSTAT: http://www.nlm.nih.gov/pubs/factsheets/hstat.html. 32 The HSTAT URL is http://hstat.nlm.nih.gov/. 33 Other important documents in HSTAT include: the National Institutes of Health (NIH) Consensus Conference Reports and Technology Assessment Reports; the HIV/AIDS Treatment Information Service (ATIS) resource documents; the Substance Abuse and Mental Health Services Administration’s Center for Substance Abuse Treatment (SAMHSA/CSAT) 30

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Coffee Break: Tutorials for Biologists34 Some parents may wish to have access to a general healthcare site that takes a scientific view of the news and covers recent breakthroughs in biology that may one day assist physicians in developing treatments. To this end, we recommend “Coffee Break,” a collection of short reports on recent biological discoveries. Each report incorporates interactive tutorials that demonstrate how bioinformatics tools are used as a part of the research process. Currently, all Coffee Breaks are written by NCBI staff.35 Each report is about 400 words and is usually based on a discovery reported in one or more articles from recently published, peer-reviewed literature.36 This site has new articles every few weeks, so it can be considered an online magazine of sorts, and intended for general background information. Access the Coffee Break Web site at http://www.ncbi.nlm.nih.gov/Coffeebreak/.

Other Commercial Databases In addition to resources maintained by official agencies, other databases exist that are commercial ventures addressing medical professionals. Here are a few examples that may interest you: ·

CliniWeb International: Index and table of contents to selected clinical information on the Internet; see http://www.ohsu.edu/cliniweb/.

·

Image Engine: Multimedia electronic medical record system that integrates a wide range of digitized clinical images with textual data stored in the University of Pittsburgh Medical Center’s MARS electronic medical record system; see the following Web site: http://www.cml.upmc.edu/cml/imageengine/imageEngine.html.

Treatment Improvement Protocols (TIP) and Center for Substance Abuse Prevention (SAMHSA/CSAP) Prevention Enhancement Protocols System (PEPS); the Public Health Service (PHS) Preventive Services Task Force’s Guide to Clinical Preventive Services; the independent, nonfederal Task Force on Community Services Guide to Community Preventive Services; and the Health Technology Advisory Committee (HTAC) of the Minnesota Health Care Commission (MHCC) health technology evaluations. 34 Adapted from http://www.ncbi.nlm.nih.gov/Coffeebreak/Archive/FAQ.html. 35 The figure that accompanies each article is frequently supplied by an expert external to NCBI, in which case the source of the figure is cited. The result is an interactive tutorial that tells a biological story. 36 After a brief introduction that sets the work described into a broader context, the report focuses on how a molecular understanding can provide explanations of observed biology and lead to therapies for diseases. Each vignette is accompanied by a figure and hypertext links that lead to a series of pages that interactively show how NCBI tools and resources are used in the research process.

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·

Medical World Search: Searches full text from thousands of selected medical sites on the Internet; see http://www.mwsearch.com/.

·

MedWeaver: Prototype system that allows users to search differential diagnoses for any list of signs and symptoms, to search medical literature, and to explore relevant Web sites; see http://www.med.virginia.edu/~wmd4n/medweaver.html.

·

Metaphrase: Middleware component intended for use by both caregivers and medical records personnel. It converts the informal language generally used by caregivers into terms from formal, controlled vocabularies; see the following Web site: http://www.lexical.com/Metaphrase.html.

The Genome Project and Dyslexia With all the discussion in the press about the Human Genome Project, it is only natural that physicians, researchers, and parents want to know about how human genes relate to dyslexia. In the following section, we will discuss databases and references used by physicians and scientists who work in this area.

Online Mendelian Inheritance in Man (OMIM) The Online Mendelian Inheritance in Man (OMIM) database is a catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere. OMIM was developed for the World Wide Web by the National Center for Biotechnology Information (NCBI).37 The database contains textual information, pictures, and reference information. It also contains copious links to NCBI’s Entrez database of MEDLINE articles and sequence information. Go to http://www.ncbi.nlm.nih.gov/Omim/searchomim.html to search the database. Type “dyslexia” (or synonyms) in the search box, and click “Submit Search.” If too many results appear, you can narrow the search by adding the word “clinical.” Each report will have additional links to related Adapted from http://www.ncbi.nlm.nih.gov/. Established in 1988 as a national resource for molecular biology information, NCBI creates public databases, conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information--all for the better understanding of molecular processes affecting human health and disease.

37

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research and databases. By following these links, especially the link titled “Database Links,” you will be exposed to numerous specialized databases that are largely used by the scientific community. These databases are overly technical and seldom used by the general public, but offer an abundance of information. The following is an example of the results you can obtain from the OMIM for dyslexia: ·

Dyslexia Quantitative Trait Locus on Chromosome 18 Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?606616

·

Dyslexia, Specific, 1 Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?127700

·

Dyslexia, Specific, 2 Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?600202

·

Dyslexia, Specific, 3 Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?604254

·

Dyslexia, Specific, 5 Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?606896

Genes and Disease (NCBI - Map) The Genes and Disease database is produced by the National Center for Biotechnology Information of the National Library of Medicine at the National Institutes of Health. This Web site categorizes each disorder by the system of the body associated with it. Go to http://www.ncbi.nlm.nih.gov/disease/, and browse the system pages to have a full view of important conditions linked to human genes. Since this site is regularly updated, you may wish to re-visit it from time to time. The following systems and associated disorders are addressed: ·

Muscle and Bone: Movement and growth. Examples: Duchenne muscular dystrophy, Ellis-van Creveld syndrome, Marfan syndrome, myotonic dystrophy, spinal muscular atrophy. Web site: http://www.ncbi.nlm.nih.gov/disease/Muscle.html

·

Nervous System: Mind and body. Examples: Alzheimer disease, Amyotrophic lateral sclerosis, Angelman

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syndrome, Charcot-Marie-Tooth disease, epilepsy, essential tremor, Fragile X syndrome, Friedreich’s ataxia, Huntington disease, NiemannPick disease, Parkinson disease, Prader-Willi syndrome, Rett syndrome, Spinocerebellar atrophy, Williams syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Brain.html ·

Signals: Cellular messages. Examples: Ataxia telangiectasia, Baldness, Cockayne syndrome, Glaucoma, SRY: sex determination, Tuberous sclerosis, Waardenburg syndrome, Werner syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Signals.html

Entrez Entrez is a search and retrieval system that integrates several linked databases at the National Center for Biotechnology Information (NCBI). These databases include nucleotide sequences, protein sequences, macromolecular structures, whole genomes, and MEDLINE through PubMed. Entrez provides access to the following databases: ·

PubMed: Biomedical literature (PubMed), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

·

Nucleotide Sequence Database (Genbank): Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Nucleotide

·

Protein Sequence Database: Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Protein

·

Structure: Three-dimensional macromolecular structures, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Structure

·

Genome: Complete genome assemblies, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Genome

·

PopSet: Population study data sets, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Popset

·

OMIM: Online Mendelian Inheritance in Man, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM

·

Taxonomy: Organisms in GenBank, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Taxonomy

·

Books: Online books, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=books

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·

ProbeSet: Gene Expression Omnibus (GEO), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo

·

3D Domains: Domains from Entrez Structure, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo

·

NCBI’s Protein Sequence Information Survey Results: Web site: http://www.ncbi.nlm.nih.gov/About/proteinsurvey/

To access the Entrez system at the National Center for Biotechnology Information, go to http://www.ncbi.nlm.nih.gov/entrez, and then select the database that you would like to search. The databases available are listed in the drop box next to “Search.” In the box next to “for,” enter “dyslexia” (or synonyms) and click “Go.”

Jablonski’s Multiple Congenital Anomaly/Mental Retardation (MCA/MR) Syndromes Database38 This online resource can be quite useful. It has been developed to facilitate the identification and differentiation of syndromic entities. Special attention is given to the type of information that is usually limited or completely omitted in existing reference sources due to space limitations of the printed form. At the following Web site you can also search across syndromes using an index: http://www.nlm.nih.gov/mesh/jablonski/syndrome_toc/toc_a.html. You can search by keywords at this Web site: http://www.nlm.nih.gov/mesh/jablonski/syndrome_db.html. The Genome Database39 Established at Johns Hopkins University in Baltimore, Maryland in 1990, the Genome Database (GDB) is the official central repository for genomic mapping data resulting from the Human Genome Initiative. In the spring of 1999, the Bioinformatics Supercomputing Centre (BiSC) at the Hospital for Sick Children in Toronto, Ontario assumed the management of GDB. The Human Genome Initiative is a worldwide research effort focusing on structural analysis of human DNA to determine the location and sequence of Adapted from the National Library of Medicine: http://www.nlm.nih.gov/mesh/jablonski/about_syndrome.html. 39 Adapted from the Genome Database: http://gdbwww.gdb.org/gdb/aboutGDB.html#mission. 38

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the estimated 100,000 human genes. In support of this project, GDB stores and curates data generated by researchers worldwide who are engaged in the mapping effort of the Human Genome Project (HGP). GDB’s mission is to provide scientists with an encyclopedia of the human genome which is continually revised and updated to reflect the current state of scientific knowledge. Although GDB has historically focused on gene mapping, its focus will broaden as the Genome Project moves from mapping to sequence, and finally, to functional analysis. To access the GDB, simply go to the following hyperlink: http://www.gdb.org/. Search “All Biological Data” by “Keyword.” Type “dyslexia” (or synonyms) into the search box, and review the results. If more than one word is used in the search box, then separate each one with the word “and” or “or” (using “or” might be useful when using synonyms). This database is extremely technical as it was created for specialists. The articles are the results which are the most accessible to non-professionals and often listed under the heading “Citations.” The contact names are also accessible to non-professionals.

Specialized References The following books are specialized references written for professionals interested in dyslexia (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Atlas of Pediatric Physical Diagnosis by Basil J. Zitelli, Holly W. Davis (Editor); Hardcover, 3rd edition (March 1997), Mosby-Year Book; ISBN: 0815199309; http://www.amazon.com/exec/obidos/ASIN/0815199309/icongroupinterna · The 5-Minute Pediatric Consult by M. William Schwartz (Editor); Hardcover - 1050 pages, 2nd edition (January 15, 2000), Lippincott, Williams & Wilkins; ISBN: 0683307444; http://www.amazon.com/exec/obidos/ASIN/0683307444/icongroupinterna · The Behavioral Neurology of White Matter by Christopher M. Filley; Paperback - 279 pages; 1st edition (September 15, 2001), Oxford University Press; ISBN: 019513561X; http://www.amazon.com/exec/obidos/ASIN/019513561X/icongroupinterna · The Cerebellum and Its Disorders by Mario-Ubaldo Manto, Massimo Pandolfo; Hardcover - 1st edition (January 2002), Cambridge University Press; ISBN: 0521771560; http://www.amazon.com/exec/obidos/ASIN/0521771560/icongroupinterna

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· Clinical Neurology by David A. Greenberg, et al; Paperback - 390 pages; 5th edition (February 9, 2002), Appleton & Lange; ISBN: 0071375430; http://www.amazon.com/exec/obidos/ASIN/0071375430/icongroupinterna · Clinical Neurology for Psychiatrists by David M. Kaufman; Hardcover 670 pages, 5th edition (January 15, 2001), W. B. Saunders Co.; ISBN: 0721689957; http://www.amazon.com/exec/obidos/ASIN/0721689957/icongroupinterna · Comprehensive Neurology by Roger N. Rosenberg (Editor), David E. Pleasure (Editor); 1280 pages, 2nd edition (April 1998), Wiley-Liss; ISBN: 0471169587; http://www.amazon.com/exec/obidos/ASIN/0471169587/icongroupinterna · Emergent and Urgent Neurology by William J. Weiner (Editor), Lisa M. Shulman (Editor); Hardcover - 571 pages; 2nd edition (January 15, 1999), Lippincott, Williams & Wilkins Publishers; ISBN: 0397518579; http://www.amazon.com/exec/obidos/ASIN/0397518579/icongroupinterna · Nelson Textbook of Pediatrics by Richard E. Behrman (Editor), et al; Hardcover - 2414 pages, 16th edition (January 15, 2000), W B Saunders Co; ISBN: 0721677673; http://www.amazon.com/exec/obidos/ASIN/0721677673/icongroupinterna · Neurology in Clinical Practice: Volume I: Principles of Diagnosis and Management, Volume II: The Neurological Disorders (2-Volume Set, Includes a 12-Month Subscription to the Online Edition) by W. G. Bradley, et al; Hardcover - 2413 pages, 3rd edition, Vol 1-2 (January 15, 2000), Butterworth-Heinemann; ISBN: 0750699736; http://www.amazon.com/exec/obidos/ASIN/0750699736/icongroupinterna · Neuroscience: Exploring the Brain by Mark F. Bear, et al; Hardcover - 855 pages, 2nd edition (January 15, 2001), Lippincott, Williams & Wilkins Publishers; ISBN: 0683305964; http://www.amazon.com/exec/obidos/ASIN/0683305964/icongroupinterna · Office Practice of Neurology by Martain A. Samuels, Steven F. Feske; Hardcover, Churchill Livingstone; ISBN: 0443065578; http://www.amazon.com/exec/obidos/ASIN/0443065578/icongroupinterna · Patient-Based Approaches to Cognitive Neuroscience by Martha J. Farah (Editor), Todd E. Feinberg (Editor); Paperback - 425 pages (April 3, 2000), MIT Press; ISBN: 0262561239; http://www.amazon.com/exec/obidos/ASIN/0262561239/icongroupinterna · Principles of Neural Science by Eric R. Kandel (Editor), et al; Hardcover 1414 pages, 4th edition (January 5, 2000), McGraw-Hill Professional

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Publishing; ISBN: 0838577016; http://www.amazon.com/exec/obidos/ASIN/0838577016/icongroupinterna · Review Manual for Neurology in Clinical Practice by Karl E. Misulis, et al; Paperback, Butterworth-Heinemann Medical; ISBN: 0750671920; http://www.amazon.com/exec/obidos/ASIN/0750671920/icongroupinterna

Vocabulary Builder Cerebellum: Part of the metencephalon that lies in the posterior cranial fossa behind the brain stem. It is concerned with the coordination of movement. [NIH]

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CHAPTER 9. DISSERTATIONS ON DYSLEXIA Overview University researchers are active in studying almost all known medical conditions. The result of research is often published in the form of Doctoral or Master’s dissertations. You should understand, therefore, that applied diagnostic procedures and/or therapies can take many years to develop after the thesis that proposed the new technique or approach was written. In this chapter, we will give you a bibliography on recent dissertations relating to dyslexia. You can read about these in more detail using the Internet or your local medical library. We will also provide you with information on how to use the Internet to stay current on dissertations.

Dissertations on Dyslexia ProQuest Digital Dissertations is the largest archive of academic dissertations available. From this archive, we have compiled the following list covering dissertations devoted to dyslexia. You will see that the information provided includes the dissertation’s title, its author, and the author’s institution. To read more about the following, simply use the Internet address indicated. The following covers recent dissertations dealing with dyslexia: ·

A Comparative Study of Screening Tests in the Early Identification of Dyslexia. by Kirby, Timothy Stephen, Phd from University of Georgia, 1979, 104 pages http://wwwlib.umi.com/dissertations/fullcit/8001014

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·

A Comparison of the Phonological Processing Abilities of Two Groups of Disabled Readers (dyslexia) by Manley, Jacqueline, Edd from University of Nevada, Reno, 1993, 106 pages http://wwwlib.umi.com/dissertations/fullcit/9410120

·

A Multidimensional Approach to Dyslexia: Does Locus of Control and Self-esteem Increase with a Perceived Increase in Reading Skills by Callahan, Rebecca Tirado; Psyd from Carlos Albizu University, 2001, 98 pages http://wwwlib.umi.com/dissertations/fullcit/3040760

·

A Neuropsychological Investigation of Cerebral Dominance and Dyslexia by Mcneil, Susan Elaine, Edd from Drake University, 1981, 67 pages http://wwwlib.umi.com/dissertations/fullcit/8121529

·

A Study of College Graduates with Dyslexia by Rose, Zina R., Edd from University of La Verne, 1998, 140 pages http://wwwlib.umi.com/dissertations/fullcit/9839593

·

A Study of Critical Incidents Affecting the Success of Learningdisabled Students in Higher Education (dyslexia) by Howard, Priscilla Edwards, Edd from Lehigh University, 1992, 268 pages http://wwwlib.umi.com/dissertations/fullcit/9213002

·

A Study of Factors Involved in Early Identification of Specific Language Disability (dyslexia) by Oliphant, Genevieve Griebel, Phd from United States International University, 1969, 216 pages http://wwwlib.umi.com/dissertations/fullcit/7013206

·

A Study of Socioeconomic Status, Parental Child-rearing Attitudes and Marital Adjustment As These Factors Relate to the Rate of Progress in Special Education for Dyslexia in a Given Population of Children. by Cavaney, June Gardner, Dsw from The Catholic University of America, 1976, 120 pages http://wwwlib.umi.com/dissertations/fullcit/7621868

·

A System for Teaching Word Recognition Skills to Children with Severe Reading Disorders (dyslexia) by Steed, Maurine Robins, Edd from Brigham Young University, 1984, 99 pages http://wwwlib.umi.com/dissertations/fullcit/8412468

·

Administrative Implications of Assessment Practices in Special Education: Identification of Learning Disabled Children Through Spectral Analysis Electroencephalography and Traditional Psychoeducational Measures (dyslexia) by Flynn, Jane Malin, Phd from University of Minnesota, 1984, 117 pages http://wwwlib.umi.com/dissertations/fullcit/8512071

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Keeping Current As previously mentioned, an effective way to stay current on dissertations dedicated to dyslexia is to use the database called ProQuest Digital Dissertations via the Internet, located at the following Web address: http://wwwlib.umi.com/dissertations. The site allows you to freely access the last two years of citations and abstracts. Ask your medical librarian if the library has full and unlimited access to this database. From the library, you should be able to do more complete searches than with the limited 2-year access available to the general public.

Vocabulary Builder Electroencephalography: The recording of the electric currents developed in the brain, by means of electrodes applied to the scalp, to the surface of the brain (intracranial e.) or placed within the substance of the brain (depth e.). [EU]

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PART III. APPENDICES

ABOUT PART III Part III is a collection of appendices on general medical topics relating to dyslexia and related conditions.

Researching Your Child’s Medications 121

APPENDIX A. RESEARCHING YOUR CHILD’S MEDICATIONS Overview There are a number of sources available on new or existing medications which could be prescribed to treat dyslexia. While a number of hard copy or CD-Rom resources are available to parents and physicians for research purposes, a more flexible method is to use Internet-based databases. In this chapter, we will begin with a general overview of medications. We will then proceed to outline official recommendations on how you should view your child’s medications. You may also want to research medications that your child is currently taking for other conditions as they may interact with medications for dyslexia. Research can give you information on the side effects, interactions, and limitations of prescription drugs used in the treatment of dyslexia. Broadly speaking, there are two sources of information on approved medications: public sources and private sources. We will emphasize free-to-use public sources.

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Your Child’s Medications: The Basics40 The Agency for Health Care Research and Quality has published extremely useful guidelines on the medication aspects of dyslexia. Giving your child medication can involve many steps and decisions each day. The AHCRQ recommends that parents take part in treatment decisions. Do not be afraid to ask questions and talk about your concerns. By taking a moment to ask questions, your child may be spared from possible problems. Here are some points to cover each time a new medicine is prescribed: ·

Ask about all parts of your child’s treatment, including diet changes, exercise, and medicines.

·

Ask about the risks and benefits of each medicine or other treatment your child might receive.

·

Ask how often you or your child’s doctor will check for side effects from a given medication.

Do not hesitate to tell the doctor about preferences you have for your child’s medicines. You may want your child to have a medicine with the fewest side effects, or the fewest doses to take each day. You may care most about cost. Or, you may want the medicine the doctor believes will work the best. Sharing your concerns will help the doctor select the best treatment for your child. Do not be afraid to “bother” the doctor with your questions about medications for dyslexia. You can also talk to a nurse or a pharmacist. They can help you better understand your child’s treatment plan. Talking over your child’s options with someone you trust can help you make better choices. Specifically, ask the doctor the following: ·

The name of the medicine and what it is supposed to do.

·

How and when to give your child the medicine, how much, and for how long.

·

What food, drinks, other medicines, or activities your child should avoid while taking the medicine.

·

What side effects your child may experience, and what to do if they occur.

·

If there are any refills, and how often.

·

About any terms or directions you do not understand.

·

What to do if your child misses a dose.

40

This section is adapted from AHCRQ: http://www.ahcpr.gov/consumer/ncpiebro.htm.

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·

If there is written information you can take home (most pharmacies have information sheets on prescription medicines; some even offer large-print or Spanish versions).

Do not forget to tell the doctor about all the medicines your child is currently taking (not just those for dyslexia). This includes prescription medicines and the medicines that you buy over the counter. When talking to the doctor, you may wish to prepare a list of medicines your child is currently taking including why and in what forms. Be sure to include the following information for each: ·

Name of medicine

·

Reason taken

·

Dosage

·

Time(s) of day

Also include any over-the-counter medicines, such as: ·

Laxatives

·

Diet pills

·

Vitamins

·

Cold medicine

·

Aspirin or other pain, headache, or fever medicine

·

Cough medicine

·

Allergy relief medicine

·

Antacids

·

Sleeping pills

·

Others (include names)

Learning More about Your Child’s Medications Because of historical investments by various organizations and the emergence of the Internet, it has become rather simple to learn about the medications the doctor has recommended for dyslexia. One such source is the United States Pharmacopeia. In 1820, eleven physicians met in Washington, D.C. to establish the first compendium of standard drugs for the United States. They called this compendium the “U.S. Pharmacopeia (USP).” Today, the USP is a non-profit organization consisting of 800 volunteer scientists, eleven elected officials, and 400 representatives of state

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associations and colleges of medicine and pharmacy. The USP is located in Rockville, Maryland, and its home page is located at www.usp.org. The USP currently provides standards for over 3,700 medications. The resulting USP DIÒ Advice for the PatientÒ can be accessed through the National Library of Medicine of the National Institutes of Health. The database is partially derived from lists of federally approved medications in the Food and Drug Administration’s (FDA) Drug Approvals database.41 While the FDA database is rather large and difficult to navigate, the Phamacopeia is both user-friendly and free to use. It covers more than 9,000 prescription and over-the-counter medications. To access this database, simply type the following hyperlink into your Web browser: http://www.nlm.nih.gov/medlineplus/druginformation.html. To view examples of a given medication (brand names, category, description, preparation, proper use, precautions, side effects, etc.), simply follow the hyperlinks indicated within the United States Pharmacopoeia (USP). It is important to read the disclaimer by the USP (http://www.nlm.nih.gov/medlineplus/drugdisclaimer.html) before using the information provided.

Commercial Databases In addition to the medications listed in the USP above, a number of commercial sites are available by subscription to physicians and their institutions. You may be able to access these sources from your local medical library or your child’s doctor’s office.

Reuters Health Drug Database The Reuters Health Drug Database can be searched by keyword at the hyperlink: http://www.reutershealth.com/frame2/drug.html.

Mosby’s GenRx Mosby’s GenRx database (also available on CD-Rom and book format) covers 45,000 drug products including generics and international brands. It

Though cumbersome, the FDA database can be freely browsed at the following site: www.fda.gov/cder/da/da.htm.

41

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provides information on prescribing and drug interactions. Information can be obtained at http://www.genrx.com/Mosby/PhyGenRx/group.html. Physicians Desk Reference The Physicians Desk Reference database (also available in CD-Rom and book format) is a full-text drug database. The database is searchable by brand name, generic name or by indication. It features multiple drug interactions reports. Information can be obtained at the following hyperlink: http://physician.pdr.net/physician/templates/en/acl/psuser_t.htm.

Other Web Sites A number of additional Web sites discuss drug information. As an example, you may like to look at www.drugs.com which reproduces the information in the Pharmacopeia as well as commercial information. You may also want to consider the Web site of the Medical Letter, Inc. which allows users to download articles on various drugs and therapeutics for a nominal fee: http://www.medletter.com/.

Contraindications and Interactions (Hidden Dangers) Some of the medications mentioned in the previous discussions can be problematic for children with dyslexia--not because they are used in the treatment process, but because of contraindications, or side effects. Medications with contraindications are those that could react with drugs used to treat dyslexia or potentially create deleterious side effects in patients with dyslexia. You should ask the physician about any contraindications, especially as these might apply to other medications that your child may be taking for common ailments. Drug-drug interactions occur when two or more drugs react with each other. This drug-drug interaction may cause your child to experience an unexpected side effect. Drug interactions may make medications less effective, cause unexpected side effects, or increase the action of a particular drug. Some drug interactions can even be harmful to your child. Be sure to read the label every time you give your child a nonprescription or prescription drug, and take the time to learn about drug interactions. These precautions may be critical to your child’s health. You can reduce the risk of potentially harmful drug interactions and side effects with a little bit of knowledge and common sense.

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Drug labels contain important information about ingredients, uses, warnings, and directions which you should take the time to read and understand. Labels also include warnings about possible drug interactions. Further, drug labels may change as new information becomes avaiable. This is why it’s especially important to read the label every time you give your child a medication. When the doctor prescribes a new drug, discuss all overthe-counter and prescription medications, dietary supplements, vitamins, botanicals, minerals and herbals your child takes. Ask your pharmacist for the package insert for each drug prescribed. The package insert provides more information about potential drug interactions.

A Final Warning At some point, you may hear of alternative medications from friends, relatives, or in the news media. Advertisements may suggest that certain alternative drugs can produce positive results for dyslexia. Exercise caution-some of these drugs may have fraudulent claims, and others may actually hurt your child. The Food and Drug Administration (FDA) is the official U.S. agency charged with discovering which medications are likely to improve the health of patients with dyslexia. The FDA warns to watch out for42: ·

Secret formulas (real scientists share what they know)

·

Amazing breakthroughs or miracle cures (real breakthroughs don’t happen very often; when they do, real scientists do not call them amazing or miracles)

·

Quick, painless, or guaranteed cures

·

If it sounds too good to be true, it probably isn’t true.

If you have any questions about any kind of medical treatment, the FDA may have an office near you. Look for their number in the blue pages of the phone book. You can also contact the FDA through its toll-free number, 1888-INFO-FDA (1-888-463-6332), or on the World Wide Web at www.fda.gov.

This section has been adapted from http://www.fda.gov/opacom/lowlit/medfraud.html.

42

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General References In addition to the resources provided earlier in this chapter, the following general references describe medications (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): · Current Therapy in Neurologic Disease by Richard T. Johnson, et al; Hardcover - 457 pages, 6th edition (January 15, 2002), Mosby-Year Book; ISBN: 0323014720; http://www.amazon.com/exec/obidos/ASIN/0323014720/icongroupinterna · Emerging Pharmacological Tools in Clinical Neurology by MedPanel Inc. (Author); Digital - 66 pages, MarketResearch.com; ISBN: B00005RBN8; http://www.amazon.com/exec/obidos/ASIN/B00005RBN8/icongroupinter na · Goodman & Gilman’s The Pharmacological Basis of Therapeutics by Joel G. Hardman (Editor), Lee E. Limbird; Hardcover - 1825 pages, 10th edition (August 13, 2001), McGraw-Hill Professional Publishing; ISBN: 0071354697; http://www.amazon.com/exec/obidos/ASIN/0071354697/icongroupinterna · Neurology and General Medicine by Michael J. Aminoff (Editor), Hardcover - 992 pages, 3rd edition (March 15, 2001), Churchill Livingstone; ISBN: 0443065713; http://www.amazon.com/exec/obidos/ASIN/0443065713/icongroupinterna · Neurology and Medicine by Hughes Perkins; Hardcover - 415 pages, 1st edition (December 15, 1999), B. M. J. Books; ISBN: 0727912240; http://www.amazon.com/exec/obidos/ASIN/0727912240/icongroupinterna · Pharmacological Management of Neurological and Psychiatric Disorders by S. J. Enna (Editor), et al; Hardcover - 736 pages, 1st edition, McGrawHill Professional Publishing; ISBN: 0070217645; http://www.amazon.com/exec/obidos/ASIN/0070217645/icongroupinterna

Researching Alternative Medicine 129

APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE Overview Complementary and alternative medicine (CAM) is one of the most contentious aspects of modern medical practice. You may have heard of these treatments on the radio or on television. Maybe you have seen articles written about these treatments in magazines, newspapers, or books. Perhaps your child’s doctor or your friends have mentioned alternatives. In this chapter, we will begin by giving you a broad perspective on complementary and alternative therapies. Next, we will introduce you to official information sources on CAM relating to dyslexia. Finally, at the conclusion of this chapter, we will provide a list of readings on dyslexia from various authors. We will begin, however, with the National Center for Complementary and Alternative Medicine’s (NCCAM) overview of complementary and alternative medicine.

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What Is CAM?43 Complementary and alternative medicine (CAM) covers a broad range of healing philosophies, approaches, and therapies. Generally, it is defined as those treatments and healthcare practices which are not taught in medical schools, used in hospitals, or reimbursed by medical insurance companies. Many CAM therapies are termed “holistic,” which generally means that the healthcare practitioner considers the whole person, including physical, mental, emotional, and spiritual health. Some of these therapies are also known as “preventive,” which means that the practitioner educates and treats the person to prevent health problems from arising, rather than treating symptoms after problems have occurred. People use CAM treatments and therapies in a variety of ways. Therapies are used alone (often referred to as alternative), in combination with other alternative therapies, or in addition to conventional treatment (sometimes referred to as complementary). Complementary and alternative medicine, or “integrative medicine,” includes a broad range of healing philosophies, approaches, and therapies. Some approaches are consistent with physiological principles of Western medicine, while others constitute healing systems with non-Western origins. While some therapies are far outside the realm of accepted Western medical theory and practice, others are becoming established in mainstream medicine. Complementary and alternative therapies are used in an effort to prevent illness, reduce stress, prevent or reduce side effects and symptoms, or control or cure disease. Some commonly used methods of complementary or alternative therapy include mind/body control interventions such as visualization and relaxation, manual healing including acupressure and massage, homeopathy, vitamins or herbal products, and acupuncture.

What Are the Domains of Alternative Medicine?44 The list of CAM practices changes continually. The reason being is that these new practices and therapies are often proved to be safe and effective, and therefore become generally accepted as “mainstream” healthcare practices. Today, CAM practices may be grouped within five major domains: (1) alternative medical systems, (2) mind-body interventions, (3) biologicallybased treatments, (4) manipulative and body-based methods, and (5) energy 43 44

Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/faq/index.html#what-is. Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/classify/index.html.

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therapies. The individual systems and treatments comprising these categories are too numerous to list in this sourcebook. Thus, only limited examples are provided within each. Alternative Medical Systems Alternative medical systems involve complete systems of theory and practice that have evolved independent of, and often prior to, conventional biomedical approaches. Many are traditional systems of medicine that are practiced by individual cultures throughout the world, including a number of venerable Asian approaches. Traditional oriental medicine emphasizes the balance or disturbances of qi (pronounced chi) or vital energy in health and illness, respectively. Traditional oriental medicine consists of a group of techniques and methods including acupuncture, herbal medicine, oriental massage, and qi gong (a form of energy therapy). Acupuncture involves stimulating specific anatomic points in the body for therapeutic purposes, usually by puncturing the skin with a thin needle. Ayurveda is India’s traditional system of medicine. Ayurvedic medicine (meaning “science of life”) is a comprehensive system of medicine that places equal emphasis on body, mind, and spirit. Ayurveda strives to restore the innate harmony of the individual. Some of the primary Ayurvedic treatments include diet, exercise, meditation, herbs, massage, exposure to sunlight, and controlled breathing. Other traditional healing systems have been developed by the world’s indigenous populations. These populations include Native American, Aboriginal, African, Middle Eastern, Tibetan, and Central and South American cultures. Homeopathy and naturopathy are also examples of complete alternative medicine systems. Homeopathic medicine is an unconventional Western system that is based on the principle that “like cures like,” i.e., that the same substance that in large doses produces the symptoms of an illness, in very minute doses cures it. Homeopathic health practitioners believe that the more dilute the remedy, the greater its potency. Therefore, they use small doses of specially prepared plant extracts and minerals to stimulate the body’s defense mechanisms and healing processes in order to treat illness.

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Naturopathic medicine is based on the theory that a medical condition is the manifestation of alterations in the processes by which the body naturally heals itself and emphasizes health restoration rather than treatment for the condition itself. Naturopathic physicians employ an array of healing practices, including the following: diet and clinical nutrition, homeopathy, acupuncture, herbal medicine, hydrotherapy (the use of water in a range of temperatures and methods of applications), spinal and soft-tissue manipulation, physical therapies (such as those involving electrical currents, ultrasound, and light), therapeutic counseling, and pharmacology.

Mind-Body Interventions Mind-body interventions employ a variety of techniques designed to facilitate the mind’s capacity to affect bodily function and symptoms. Only a select group of mind-body interventions having well-documented theoretical foundations are considered CAM. For example, patient education and cognitive-behavioral approaches are now considered “mainstream.” On the other hand, complementary and alternative medicine includes meditation, certain uses of hypnosis, dance, music, and art therapy, as well as prayer and mental healing. Biological-Based Therapies This category of CAM includes natural and biological-based practices, interventions, and products, many of which overlap with conventional medicine’s use of dietary supplements. This category includes herbal, special dietary, orthomolecular, and individual biological therapies. Herbal therapy employs an individual herb or a mixture of herbs for healing purposes. An herb is a plant or plant part that produces and contains chemical substances that act upon the body. Special diet therapies, such as those proposed by Drs. Atkins, Ornish, Pritikin, and Weil, are believed to prevent and/or control illness as well as promote health. Orthomolecular therapies aim to treat medical conditions with varying concentrations of chemicals such as magnesium, melatonin, and mega-doses of vitamins. Biological therapies include, for example, the use of laetrile and shark cartilage to treat cancer and the use of bee pollen to treat autoimmune and inflammatory conditions.

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Manipulative and Body-Based Methods This category includes methods that are based on manipulation and/or movement of the body. For example, chiropractors focus on the relationship between structure and function, primarily pertaining to the spine, and how that relationship affects the preservation and restoration of health. Chiropractors use manipulative therapy as an integral treatment tool. In contrast, osteopaths place particular emphasis on the musculoskeletal system and practice osteopathic manipulation. Osteopaths believe that all of the body’s systems work together and that disturbances in one system may have an impact upon function elsewhere in the body. Massage therapists manipulate the soft tissues of the body to normalize those tissues. Energy Therapies Energy therapies focus on energy fields originating within the body (biofields) or those from other sources (electromagnetic fields). Biofield therapies are intended to affect energy fields (the existence of which is not yet experimentally proven) that surround and penetrate the human body. Some forms of energy therapy manipulate biofields by applying pressure and/or manipulating the body by placing the hands in or through these fields. Examples include Qi gong, Reiki and Therapeutic Touch. Qi gong is a component of traditional oriental medicine that combines movement, meditation, and regulation of breathing to enhance the flow of vital energy (qi) in the body, improve blood circulation, and enhance immune function. Reiki, the Japanese word representing Universal Life Energy, is based on the belief that, by channeling spiritual energy through the practitioner, the spirit is healed and, in turn, heals the physical body. Therapeutic Touch is derived from the ancient technique of “laying-on of hands.” It is based on the premises that the therapist’s healing force affects recovery and that healing is promoted when the body’s energies are in balance. By passing their hands over the patient, these healers identify energy imbalances. Bioelectromagnetic-based therapies involve the unconventional use of electromagnetic fields to treat illnesses or manage pain. These therapies are often used to treat asthma, cancer, and migraine headaches. Types of electromagnetic fields which are manipulated in these therapies include pulsed fields, magnetic fields, and alternating current or direct current fields.

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Can Alternatives Affect My Child’s Treatment? A critical issue in pursuing complementary alternatives mentioned thus far is the risk that these might have undesirable interactions with your child’s medical treatment. It becomes all the more important to speak with the doctor who can offer advice on the use of alternatives. Official sources confirm this view. Though written for women, we find that the National Women’s Health Information Center’s advice on pursuing alternative medicine is appropriate for everyone.45 Is It Okay to Want Both Traditional and Alternative or Complementary Medicine? Should you wish to explore non-traditional types of treatment, be sure to discuss all issues concerning treatments and therapies with your child’s healthcare provider, whether a physician or practitioner of complementary and alternative medicine. Competent healthcare management requires that the practitioner know of all conventional and alternative therapies that your child is taking. The decision to use complementary and alternative treatments is an important one. Consider before selecting an alternative therapy, the safety and effectiveness of the therapy or treatment, the expertise and qualifications of the healthcare practitioner, and the quality of delivery. These topics should be considered when selecting any practitioner or therapy.

Finding CAM References on Dyslexia Having read the previous discussion, you may be wondering which complementary or alternative treatments might be appropriate for dyslexia. For the remainder of this chapter, we will direct you to a number of official sources which can assist you in researching studies and publications. Some of these articles are rather technical, so some patience may be required.

National Center for Complementary and Alternative Medicine The National Center for Complementary and Alternative Medicine (NCCAM) of the National Institutes of Health (http://nccam.nih.gov) has 45

Adapted from http://www.4woman.gov/faq/alternative.htm.

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created a link to the National Library of Medicine’s databases to allow parents to search for articles that specifically relate to dyslexia and complementary medicine. To search the database, go to the following Web site: www.nlm.nih.gov/nccam/camonpubmed.html. Select “CAM on PubMed.” Enter “dyslexia” (or synonyms) into the search box. Click “Go.” The following references provide information on particular aspects of complementary and alternative medicine (CAM) that are related to dyslexia: ·

A child reading: some educational and psychological considerations. Author(s): Gopinathan S, Ling QM. Source: Ann Acad Med Singapore. 1979 July; 8(3): 237-43. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=547866&dopt=Abstract

·

A critical review of EEG coherence studies of hemisphere function. Author(s): French CC, Beaumont JG. Source: International Journal of Psychophysiology : Official Journal of the International Organization of Psychophysiology. 1984 March; 1(3): 24154. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6394561&dopt=Abstract

·

A randomized double-blind, placebo-controlled study of the effects of supplementation with highly unsaturated fatty acids on ADHD-related symptoms in children with specific learning difficulties. Author(s): Richardso AJ, Puri BK. Source: Progress in Neuro-Psychopharmacology & Biological Psychiatry. 2002 February; 26(2): 233-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11817499&dopt=Abstract

·

A review of the management of 323 consecutive patients seen in a specific learning difficulties clinic. Author(s): Evans BJ, Patel R, Wilkins AJ, Lightstone A, Eperjesi F, Speedwell L, Duffy J. Source: Ophthalmic & Physiological Optics : the Journal of the British College of Ophthalmic Opticians (Optometrists). 1999 November; 19(6): 454-66. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10768028&dopt=Abstract

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A study and meta-analysis of lay attributions of cures for overcoming specific psychological problems. Author(s): Furnham A, Hayward R. Source: The Journal of Genetic Psychology ; Child Behavior, Animal Behavior, and Comparative Psychology. 1997 September; 158(3): 315-31. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9255959&dopt=Abstract

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An evaluation of a non-visual method. Author(s): Maginnis GH. Source: Journal of Learning Disabilities. 1986 April; 19(4): 215-7. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3701216&dopt=Abstract

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Are abnormal event-related potentials specific to children with ADHD? A comparison with two clinical groups. Author(s): Kemner C, Verbaten MN, Koelega HS, Camfferman G, van Engeland H. Source: Percept Mot Skills. 1998 December; 87(3 Pt 1): 1083-90. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9885081&dopt=Abstract

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Auditory and visual temporal processing in dyslexic and normal readers. Author(s): Farmer ME, Klein R. Source: Annals of the New York Academy of Sciences. 1993 June 14; 682: 339-41. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8323130&dopt=Abstract

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Auditory attentional shifts in reading-disabled students: quantification of attentional effectiveness by the Attentional Shift Index. Author(s): Asbjornsen AE, Bryden MP. Source: Neuropsychologia. 1998 February; 36(2): 143-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9539234&dopt=Abstract

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Auditory event-related potentials among dyslexic and normal-reading children: 3CLT and midline comparisons. Author(s): Erez A, Pratt H.

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Source: The International Journal of Neuroscience. 1992 April; 63(3-4): 247-64. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1304558&dopt=Abstract ·

Auditory evoked responses to single tones and closely spaced tone pairs in children grouped by reading or matrices abilities. Author(s): Duffy FH, McAnulty GB, Waber DP. Source: Clin Electroencephalogr. 1999 July; 30(3): 84-93. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10578470&dopt=Abstract

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Auditory processing and dyslexia: evidence for a specific speech processing deficit. Author(s): Schulte-Korne G, Deimel W, Bartling J, Remschmidt H. Source: Neuroreport. 1998 January 26; 9(2): 337-40. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9507979&dopt=Abstract

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Auditory stream segregation in dyslexic adults. Author(s): Helenius P, Uutela K, Hari R. Source: Brain; a Journal of Neurology. 1999 May; 122 ( Pt 5): 907-13. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10355675&dopt=Abstract

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Auditory-brainstem synchronicity in dyslexia measured using the REPs/ABR protocol. Author(s): Lauter JL, Wood SB. Source: Annals of the New York Academy of Sciences. 1993 June 14; 682: 377-9. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8323140&dopt=Abstract

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Benefit of docosahexaenoic acid supplements to dark adaptation in dyslexics. Author(s): Stordy BJ. Source: Lancet. 1995 August 5; 346(8971): 385. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7623560&dopt=Abstract

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Brain activation during reading in deep dyslexia: an MEG study. Author(s): Laine M, Salmelin R, Helenius P, Marttila R.

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Source: Journal of Cognitive Neuroscience. 2000 July; 12(4): 622-34. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10936915&dopt=Abstract ·

Controversial approaches to treating learning disabilities and attention deficit disorder. Author(s): Silver LB. Source: Am J Dis Child. 1986 October; 140(10): 1045-52. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2875647&dopt=Abstract

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Cortical activation during spoken-word segmentation in nonreadingimpaired and dyslexic adults. Author(s): Helenius P, Salmelin R, Service E, Connolly JF, Leinonen S, Lyytinen H. Source: The Journal of Neuroscience : the Official Journal of the Society for Neuroscience. 2002 April 1; 22(7): 2936-44. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11923458&dopt=Abstract

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Cortical auditory signal processing in poor readers. Author(s): Nagarajan S, Mahncke H, Salz T, Tallal P, Roberts T, Merzenich MM. Source: Proceedings of the National Academy of Sciences of the United States of America. 1999 May 25; 96(11): 6483-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10339614&dopt=Abstract

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Cortical responses of infants with and without a genetic risk for dyslexia: I. Age effects. Author(s): Pihko E, Leppanen PH, Eklund KM, Cheour M, Guttorm TK, Lyytinen H. Source: Neuroreport. 1999 April 6; 10(5): 901-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10321457&dopt=Abstract

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Cortical responses of infants with and without a genetic risk for dyslexia: II. Group effects. Author(s): Leppanen PH, Pihko E, Eklund KM, Lyytinen H.

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Source: Neuroreport. 1999 April 6; 10(5): 969-73. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10321469&dopt=Abstract ·

Covering one eye affects how some children read. Author(s): Cornelissen P, Bradley L, Fowler S, Stein J. Source: Developmental Medicine and Child Neurology. 1992 April; 34(4): 296-304. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1572515&dopt=Abstract

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Dark adaptation, motor skills, docosahexaenoic acid, and dyslexia. Author(s): Stordy BJ. Source: The American Journal of Clinical Nutrition. 2000 January; 71(1 Suppl): 323S-6S. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10617990&dopt=Abstract

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Developmental dyslexia and animal studies: at the interface between cognition and neurology. Author(s): Galaburda AM. Source: Cognition. 1994 April-June; 50(1-3): 133-49. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8039357&dopt=Abstract

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Disruption of the neural response to rapid acoustic stimuli in dyslexia: evidence from functional MRI. Author(s): Temple E, Poldrack RA, Protopapas A, Nagarajan S, Salz T, Tallal P, Merzenich MM, Gabrieli JD. Source: Proceedings of the National Academy of Sciences of the United States of America. 2000 December 5; 97(25): 13907-12. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11095716&dopt=Abstract

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Dyslexia in relation to cerebral dominance and temporal analysis. Author(s): Zurif EB, Carson G. Source: Neuropsychologia. 1970 July; 8(3): 351-61. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=4941969&dopt=Abstract

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Dyslexia: empowering parents to become their child's educational advocate. Author(s): Linday LA. Source: Journal of Developmental and Behavioral Pediatrics : Jdbp. 1995 October; 16(5): 359-61. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8557837&dopt=Abstract

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Dyslexia: verbal impairments in the absence of magnocellular impairments. Author(s): Kronbichler M, Hutzler F, Wimmer H. Source: Neuroreport. 2002 April 16; 13(5): 617-20. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11973457&dopt=Abstract

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EMG and EEG biofeedback training in the treatment of a 10-year-old hyperactive boy with a developmental reading disorder. Author(s): Tansey MA, Bruner RL. Source: Biofeedback Self Regul. 1983 March; 8(1): 25-37. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6882815&dopt=Abstract

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Event-related potentials and dyslexia. Author(s): Fawcett AJ, Chattopadhyay AK, Kandler RH, Jarratt JA, Nicolson RI, Proctor M. Source: Annals of the New York Academy of Sciences. 1993 June 14; 682: 342-5. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8323131&dopt=Abstract

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Impaired auditory frequency discrimination in dyslexia detected with mismatch evoked potentials. Author(s): Baldeweg T, Richardson A, Watkins S, Foale C, Gruzelier J. Source: Annals of Neurology. 1999 April; 45(4): 495-503. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10211474&dopt=Abstract

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Mental imagery and dyslexia: a deficit in processing multipart visual objects? Author(s): Koenig O, Kosslyn SM, Wolff P.

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Source: Brain and Language. 1991 October; 41(3): 381-94. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1933264&dopt=Abstract ·

P300 component of the auditory event-related potentials and dyslexia. Author(s): Ortiz Alonso T, Navarro M, Vila Abad E. Source: Funct Neurol. 1990 October-December; 5(4): 333-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2093051&dopt=Abstract

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Scotopic sensitivity in dyslexia and requirements for DHA supplementation. Author(s): Greatrex JC, Drasdo N, Dresser K. Source: Lancet. 2000 April 22; 355(9213): 1429-30. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10791530&dopt=Abstract

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The mismatch negativity in evaluating central auditory dysfunction in dyslexia. Author(s): Kujala T, Naatanen R. Source: Neuroscience and Biobehavioral Reviews. 2001 August; 25(6): 535-43. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11595273&dopt=Abstract

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The problem of dyslexia in teenage. Author(s): Frisk M, Wegelius E, Tenhunen T, Widholm O, Hortling H. Source: Acta Paediatr Scand. 1967 July; 56(4): 333-43. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6039046&dopt=Abstract

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The proposed chiropractic cure for dyslexia. Author(s): Silver LB. Source: Am J Dis Child. 1987 May; 141(5): 476-7. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3578150&dopt=Abstract

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Time estimation deficits in developmental dyslexia: evidence of cerebellar involvement. Author(s): Nicolson RI, Fawcett AJ, Dean P.

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Source: Proceedings of the Royal Society of London. Series B. Biological Sciences. 1995 January 23; 259(1354): 43-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7700875&dopt=Abstract

Additional Web Resources A number of additional Web sites offer encyclopedic information covering CAM and related topics. The following is a representative sample: ·

Alternative Medicine Foundation, Inc.: http://www.herbmed.org/

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AOL: http://search.aol.com/cat.adp?id=169&layer=&from=subcats

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Chinese Medicine: http://www.newcenturynutrition.com/

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drkoop.comÒ: http://www.drkoop.com/InteractiveMedicine/IndexC.html

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Family Village: http://www.familyvillage.wisc.edu/med_altn.htm

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Google: http://directory.google.com/Top/Health/Alternative/

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Healthnotes: http://www.thedacare.org/healthnotes/

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Open Directory Project: http://dmoz.org/Health/Alternative/

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TPN.com: http://www.tnp.com/

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Yahoo.com: http://dir.yahoo.com/Health/Alternative_Medicine/

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WebMDÒHealth: http://my.webmd.com/drugs_and_herbs

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WellNet: http://www.wellnet.ca/herbsa-c.htm

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WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html

General References A good place to find general background information on CAM is the National Library of Medicine. It has prepared within the MEDLINEplus system an information topic page dedicated to complementary and alternative medicine. To access this page, go to the MEDLINEplus site at: www.nlm.nih.gov/medlineplus/alternativemedicine.html. This Web site provides a general overview of various topics and can lead to a number of general sources. The following additional references describe, in broad

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terms, alternative and complementary medicine (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Alternative and Complementary Treatment in Neurologic Illness by Michael I. Weintraub (Editor); Paperback - 288 pages (March 23, 2001), Churchill Livingstone; ISBN: 0443065586; http://www.amazon.com/exec/obidos/ASIN/0443065586/icongroupinterna · Healthy Child, Whole Child: Integrating the Best of Conventional and Alternative Medicine to Keep Your Kids Healthy by Stuart H. Ditchek, M.D. and Russell H. Greenfield; Paperback - 464 pages (June 2002), Harper Resource; ISBN: 0062737465; http://www.amazon.com/exec/obidos/ASIN/0062737465/icongroupinterna · Radical Healing: Integrating the World’s Great Therapeutic Traditions to Create a New Transformative Medicine by Rudolph Ballentine, M.D., Linda Funk (Illustrator); Paperback - 612 pages; Reprint edition (March 14, 2000), Three Rivers Press; ISBN: 0609804847; http://www.amazon.com/exec/obidos/ASIN/0609804847/icongroupinterna ·

The Review of Natural Products by Facts and Comparisons (Editor); CdRom edition (January 2002), Facts & Comparisons; ISBN: 1574391453; http://www.amazon.com/exec/obidos/ASIN/1574391453/icongroupinterna

For additional information on complementary and alternative medicine, ask your child’s doctor or write to: National Institutes of Health National Center for Complementary and Alternative Medicine Clearinghouse P. O. Box 8218 Silver Spring, MD 20907-8218

Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Ophthalmic: Pertaining to the eye. [EU] Psychopharmacology: The study of the effects of drugs on mental and behavioral activity. [NIH]

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APPENDIX C. RESEARCHING NUTRITION Overview Since the time of Hippocrates, doctors have understood the importance of diet and nutrition to health and well-being. Since then, they have accumulated an impressive archive of studies and knowledge dedicated to this subject. Based on their experience, doctors and healthcare providers may recommend particular dietary supplements for dyslexia. Any dietary recommendation is based on age, body mass, gender, lifestyle, eating habits, food preferences, and health condition. It is therefore likely that different patients with dyslexia may be given different recommendations. Some recommendations may be directly related to dyslexia, while others may be more related to general health. In this chapter we will begin by briefly reviewing the essentials of diet and nutrition that will broadly frame more detailed discussions of dyslexia. We will then show you how to find studies dedicated specifically to nutrition and dyslexia.

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Food and Nutrition: General Principles What Are Essential Foods? Food is generally viewed by official sources as consisting of six basic elements: (1) fluids, (2) carbohydrates, (3) protein, (4) fats, (5) vitamins, and (6) minerals. Consuming a combination of these elements is considered to be a healthy diet: ·

Fluids are essential to human life as 80-percent of the body is composed of water. Water is lost via urination, sweating, diarrhea, vomiting, diuretics (drugs that increase urination), caffeine, and physical exertion.

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Carbohydrates are the main source for human energy (thermoregulation) and the bulk of typical diets. They are mostly classified as being either simple or complex. Simple carbohydrates include sugars which are often consumed in the form of cookies, candies, or cakes. Complex carbohydrates consist of starches and dietary fibers. Starches are consumed in the form of pastas, breads, potatoes, rice, and other foods. Soluble fibers can be eaten in the form of certain vegetables, fruits, oats, and legumes. Insoluble fibers include brown rice, whole grains, certain fruits, wheat bran and legumes.

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Proteins are eaten to build and repair human tissues. Some foods that are high in protein are also high in fat and calories. Food sources for protein include nuts, meat, fish, cheese, and other dairy products.

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Fats are consumed for both energy and the absorption of certain vitamins. There are many types of fats, with many general publications recommending the intake of unsaturated fats or those low in cholesterol.

Vitamins and minerals are fundamental to human health, growth, and, in some cases, disease prevention. Most are consumed in your child’s diet (exceptions being vitamins K and D which are produced by intestinal bacteria and sunlight on the skin, respectively). Each vitamin and mineral plays a different role in health. The following outlines essential vitamins: ·

Vitamin A is important to the health of eyes, hair, bones, and skin; sources of vitamin A include foods such as eggs, carrots, and cantaloupe.

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Vitamin B1, also known as thiamine, is important for the nervous system and energy production; food sources for thiamine include meat, peas, fortified cereals, bread, and whole grains.

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Vitamin B2, also known as riboflavin, is important for the nervous system and muscles, but is also involved in the release of proteins from

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nutrients; food sources for riboflavin include dairy products, leafy vegetables, meat, and eggs. ·

Vitamin B3, also known as niacin, is important for healthy skin and helps the body use energy; food sources for niacin include peas, peanuts, fish, and whole grains

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Vitamin B6, also known as pyridoxine, is important for the regulation of cells in the nervous system and is vital for blood formation; food sources for pyridoxine include bananas, whole grains, meat, and fish.

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Vitamin B12 is vital for a healthy nervous system and for the growth of red blood cells in bone marrow; food sources for vitamin B12 include yeast, milk, fish, eggs, and meat.

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Vitamin C allows the body’s immune system to fight various medical conditions, strengthens body tissue, and improves the body’s use of iron; food sources for vitamin C include a wide variety of fruits and vegetables.

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Vitamin D helps the body absorb calcium which strengthens bones and teeth; food sources for vitamin D include oily fish and dairy products.

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Vitamin E can help protect certain organs and tissues from various degenerative diseases; food sources for vitamin E include margarine, vegetables, eggs, and fish.

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Vitamin K is essential for bone formation and blood clotting; common food sources for vitamin K include leafy green vegetables.

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Folic Acid maintains healthy cells and blood; food sources for folic acid include nuts, fortified breads, leafy green vegetables, and whole grains.

It should be noted that one can overdose on certain vitamins which become toxic if consumed in excess (e.g. vitamin A, D, E and K). Like vitamins, minerals are chemicals that are required by the body to remain in good health. Because the human body does not manufacture these chemicals internally, we obtain them from food and other dietary sources. The more important minerals include: ·

Calcium is needed for healthy bones, teeth, and muscles, but also helps the nervous system function; food sources for calcium include dry beans, peas, eggs, and dairy products.

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Chromium is helpful in regulating sugar levels in blood; food sources for chromium include egg yolks, raw sugar, cheese, nuts, beets, whole grains, and meat.

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Fluoride is used by the body to help prevent tooth decay and to reinforce bone strength; sources of fluoride include drinking water and certain brands of toothpaste.

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Iodine helps regulate the body’s use of energy by synthesizing into the hormone thyroxine; food sources include leafy green vegetables, nuts, egg yolks, and red meat.

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Iron helps maintain muscles and the formation of red blood cells and certain proteins; food sources for iron include meat, dairy products, eggs, and leafy green vegetables.

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Magnesium is important for the production of DNA, as well as for healthy teeth, bones, muscles, and nerves; food sources for magnesium include dried fruit, dark green vegetables, nuts, and seafood.

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Phosphorous is used by the body to work with calcium to form bones and teeth; food sources for phosphorous include eggs, meat, cereals, and dairy products.

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Selenium primarily helps maintain normal heart and liver functions; food sources for selenium include wholegrain cereals, fish, meat, and dairy products.

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Zinc helps wounds heal, the formation of sperm, and encourage rapid growth and energy; food sources include dried beans, shellfish, eggs, and nuts.

The United States government periodically publishes recommended diets and consumption levels of the various elements of food. Again, the doctor may encourage deviations from the average official recommendation based on your child’s specific condition. To learn more about basic dietary guidelines, visit the Web site: http://www.health.gov/dietaryguidelines/. Based on these guidelines, many foods are required to list the nutrition levels on the food’s packaging. Labeling Requirements are listed at the following site maintained by the Food and Drug Administration: http://www.cfsan.fda.gov/~dms/lab-cons.html. When interpreting these requirements, the government recommends that consumers become familiar with the following abbreviations before reading FDA literature:46 ·

DVs (Daily Values): A new dietary reference term that will appear on the food label. It is made up of two sets of references, DRVs and RDIs.

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DRVs (Daily Reference Values): A set of dietary references that applies to fat, saturated fat, cholesterol, carbohydrate, protein, fiber, sodium, and potassium.

46

Adapted from the FDA: http://www.fda.gov/fdac/special/foodlabel/dvs.html.

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·

RDIs (Reference Daily Intakes): A set of dietary references based on the Recommended Dietary Allowances for essential vitamins and minerals and, in selected groups, protein. The name “RDI” replaces the term “U.S. RDA.”

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RDAs (Recommended Dietary Allowances): A set of estimated nutrient allowances established by the National Academy of Sciences. It is updated periodically to reflect current scientific knowledge.

What Are Dietary Supplements?47 Dietary supplements are widely available through many commercial sources, including health food stores, grocery stores, pharmacies, and by mail. Dietary supplements are provided in many forms including tablets, capsules, powders, gel-tabs, extracts, and liquids. Historically in the United States, the most prevalent type of dietary supplement was a multivitamin/mineral tablet or capsule that was available in pharmacies, either by prescription or “over the counter.” Supplements containing strictly herbal preparations were less widely available. Currently in the United States, a wide array of supplement products are available, including vitamin, mineral, other nutrients, and botanical supplements as well as ingredients and extracts of animal and plant origin. The Office of Dietary Supplements (ODS) of the National Institutes of Health is the official agency of the United States which has the expressed goal of acquiring “new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold.”48 According to the ODS, dietary supplements can have an important impact on the prevention and management of medical conditions and on the maintenance of health.49 The ODS notes that considerable research on the effects of dietary supplements has been conducted in Asia and Europe where This discussion has been adapted from the NIH: http://ods.od.nih.gov/whatare/whatare.html. 48 Contact: The Office of Dietary Supplements, National Institutes of Health, Building 31, Room 1B29, 31 Center Drive, MSC 2086, Bethesda, Maryland 20892-2086, Tel: (301) 435-2920, Fax: (301) 480-1845, E-mail: [email protected]. 49 Adapted from http://ods.od.nih.gov/about/about.html. The Dietary Supplement Health and Education Act defines dietary supplements as “a product (other than tobacco) intended to supplement the diet that bears or contains one or more of the following dietary ingredients: a vitamin, mineral, amino acid, herb or other botanical; or a dietary substance for use to supplement the diet by increasing the total dietary intake; or a concentrate, metabolite, constituent, extract, or combination of any ingredient described above; and intended for ingestion in the form of a capsule, powder, softgel, or gelcap, and not represented as a conventional food or as a sole item of a meal or the diet.” 47

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the use of plant products, in particular, has a long tradition. However, the overwhelming majority of supplements have not been studied scientifically. To explore the role of dietary supplements in the improvement of health care, the ODS plans, organizes, and supports conferences, workshops, and symposia on scientific topics related to dietary supplements. The ODS often works in conjunction with other NIH Institutes and Centers, other government agencies, professional organizations, and public advocacy groups. To learn more about official information on dietary supplements, visit the ODS site at http://ods.od.nih.gov/whatare/whatare.html. Or contact: The Office of Dietary Supplements National Institutes of Health Building 31, Room 1B29 31 Center Drive, MSC 2086 Bethesda, Maryland 20892-2086 Tel: (301) 435-2920 Fax: (301) 480-1845 E-mail: [email protected]

Finding Studies on Dyslexia The NIH maintains an office dedicated to nutrition and diet. The National Institutes of Health’s Office of Dietary Supplements (ODS) offers a searchable bibliographic database called the IBIDS (International Bibliographic Information on Dietary Supplements). The IBIDS contains over 460,000 scientific citations and summaries about dietary supplements and nutrition as well as references to published international, scientific literature on dietary supplements such as vitamins, minerals, and botanicals.50 IBIDS is available to the public free of charge through the ODS Internet page: http://ods.od.nih.gov/databases/ibids.html. After entering the search area, you have three choices: (1) IBIDS Consumer Database, (2) Full IBIDS Database, or (3) Peer Reviewed Citations Only. We recommend that you start with the Consumer Database. While you may not find references for the topics that are of most interest to you, check back Adapted from http://ods.od.nih.gov. IBIDS is produced by the Office of Dietary Supplements (ODS) at the National Institutes of Health to assist the public, healthcare providers, educators, and researchers in locating credible, scientific information on dietary supplements. IBIDS was developed and will be maintained through an interagency partnership with the Food and Nutrition Information Center of the National Agricultural Library, U.S. Department of Agriculture.

50

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periodically as this database is frequently updated. More studies can be found by searching the Full IBIDS Database. Healthcare professionals and researchers generally use the third option, which lists peer-reviewed citations. In all cases, we suggest that you take advantage of the “Advanced Search” option that allows you to retrieve up to 100 fully explained references in a comprehensive format. Type “dyslexia” (or synonyms) into the search box. To narrow the search, you can also select the “Title” field. The following information is typical of that found when using the “Full IBIDS Database” when searching using “dyslexia” (or a synonym): ·

Dark adaptation, motor skills, docosahexaenoic acid, and dyslexia. Author(s): School of Biological Sciences, University of Surrey, Guildford, United Kingdom. [email protected] Source: Stordy, B J Am-J-Clin-Nutr. 2000 January; 71(1 Suppl): 323S-6S 0002-9165

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Dramatic favorable responses of children with learning disabilities or dyslexia and attention deficit disorder to antimotion sickness medications: four case reports. Author(s): Medical Dyslexic Treatment Center, Great Neck, NY 11021. Source: Levinson, H N Percept-Mot-Skills. 1991 December; 73(3 Pt 1): 72338 0031-5125

·

Dyslexia in adults is associated with clinical signs of fatty acid deficiency. Author(s): University Laboratory of Physiology, Oxford, UK. Source: Taylor, K E Higgins, C J Calvin, C M Hall, J A Easton, T McDaid, A M Richardson, A J Prostaglandins-Leukot-Essent-Fatty-Acids. 2000 JulAugust; 63(1-2): 75-8 0952-3278

·

Possible relevance of phospholipid abnormalities and genetic interactions in psychiatric disorders: the relationship between dyslexia and schizophrenia. Author(s): Scotia Research Institute, Kentville, Nova Scotia, Canada. Source: Horrobin, D F Glen, A I Hudson, C J Med-Hypotheses. 1995 December; 45(6): 605-13 0306-9877

·

Urine patterns, peptide levels and IgA/IgG antibodies to food proteins in children with dyslexia. Author(s): Center for Reading Research, Stavanger College, Norway. Source: Knivsberg, A M Pediatr-Rehabil. 1997 Jan-March; 1(1): 25-33 13638491

·

Zinc deficiency in children with dyslexia: concentrations of zinc and other minerals in sweat and hair. Author(s): Biolab Medical Unit, London.

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Source: Grant, E C Howard, J M Davies, S Chasty, H Hornsby, B Galbraith, J Br-Med-J-(Clin-Res-Ed). 1988 February 27; 296(6622): 607-9 0267-0623

Federal Resources on Nutrition In addition to the IBIDS, the United States Department of Health and Human Services (HHS) and the United States Department of Agriculture (USDA) provide many sources of information on general nutrition and health. Recommended resources include: ·

healthfinder®, HHS’s gateway to health information, including diet and nutrition: http://www.healthfinder.gov/scripts/SearchContext.asp?topic=238&page=0

·

The United States Department of Agriculture’s Web site dedicated to nutrition information: www.nutrition.gov

·

The Food and Drug Administration’s Web site for federal food safety information: www.foodsafety.gov

·

The National Action Plan on Overweight and Obesity sponsored by the United States Surgeon General: http://www.surgeongeneral.gov/topics/obesity/

·

The Center for Food Safety and Applied Nutrition has an Internet site sponsored by the Food and Drug Administration and the Department of Health and Human Services: http://vm.cfsan.fda.gov/

·

Center for Nutrition Policy and Promotion sponsored by the United States Department of Agriculture: http://www.usda.gov/cnpp/

·

Food and Nutrition Information Center, National Agricultural Library sponsored by the United States Department of Agriculture: http://www.nal.usda.gov/fnic/

·

Food and Nutrition Service sponsored by the United States Department of Agriculture: http://www.fns.usda.gov/fns/

Additional Web Resources A number of additional Web sites offer encyclopedic information covering food and nutrition. The following is a representative sample: ·

AOL: http://search.aol.com/cat.adp?id=174&layer=&from=subcats

·

Family Village: http://www.familyvillage.wisc.edu/med_nutrition.html

Researching Nutrition 153

·

Google: http://directory.google.com/Top/Health/Nutrition/

·

Healthnotes: http://www.thedacare.org/healthnotes/

·

Open Directory Project: http://dmoz.org/Health/Nutrition/

·

Yahoo.com: http://dir.yahoo.com/Health/Nutrition/

·

WebMDÒHealth: http://my.webmd.com/nutrition

·

WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html

Vocabulary Builder The following vocabulary builder defines words used in the references in this chapter that have not been defined in previous chapters: Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Cholesterol: The principal sterol of all higher animals, distributed in body tissues, especially the brain and spinal cord, and in animal fats and oils. [NIH] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]

Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic

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properties. [NIH] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Prostaglandins: A group of compounds derived from unsaturated 20carbon fatty acids, primarily arachidonic acid, via the cyclooxygenase pathway. They are extremely potent mediators of a diverse group of physiological processes. [NIH] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Thermoregulation: Heat regulation. [EU] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH]

Finding Medical Libraries 155

APPENDIX D. FINDING MEDICAL LIBRARIES Overview At a medical library you can find medical texts and reference books, consumer health publications, specialty newspapers and magazines, as well as medical journals. In this Appendix, we show you how to quickly find a medical library in your area.

Preparation Before going to the library, highlight the references mentioned in this sourcebook that you find interesting. Focus on those items that are not available via the Internet, and ask the reference librarian for help with your search. He or she may know of additional resources that could be helpful to you. Most importantly, your local public library and medical libraries have Interlibrary Loan programs with the National Library of Medicine (NLM), one of the largest medical collections in the world. According to the NLM, most of the literature in the general and historical collections of the National Library of Medicine is available on interlibrary loan to any library. NLM’s interlibrary loan services are only available to libraries. If you would like to access NLM medical literature, then visit a library in your area that can request the publications for you.51

51

Adapted from the NLM: http://www.nlm.nih.gov/psd/cas/interlibrary.html.

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Finding a Local Medical Library The quickest method to locate medical libraries is to use the Internet-based directory published by the National Network of Libraries of Medicine (NN/LM). This network includes 4626 members and affiliates that provide many services to librarians, health professionals, and the public. To find a library in your area, simply visit http://nnlm.gov/members/adv.html or call 1-800-338-7657.

Medical Libraries Open to the Public In addition to the NN/LM, the National Library of Medicine (NLM) lists a number of libraries that are generally open to the public and have reference facilities. The following is the NLM’s list plus hyperlinks to each library Web site. These Web pages can provide information on hours of operation and other restrictions. The list below is a small sample of libraries recommended by the National Library of Medicine (sorted alphabetically by name of the U.S. state or Canadian province where the library is located):52 ·

Alabama: Health InfoNet of Jefferson County (Jefferson County Library Cooperative, Lister Hill Library of the Health Sciences), http://www.uab.edu/infonet/

·

Alabama: Richard M. Scrushy Library (American Sports Medicine Institute), http://www.asmi.org/LIBRARY.HTM

·

Arizona: Samaritan Regional Medical Center: The Learning Center (Samaritan Health System, Phoenix, Arizona), http://www.samaritan.edu/library/bannerlibs.htm

·

California: Kris Kelly Health Information Center (St. Joseph Health System), http://www.humboldt1.com/~kkhic/index.html

·

California: Community Health Library of Los Gatos (Community Health Library of Los Gatos), http://www.healthlib.org/orgresources.html

·

California: Consumer Health Program and Services (CHIPS) (County of Los Angeles Public Library, Los Angeles County Harbor-UCLA Medical Center Library) - Carson, CA, http://www.colapublib.org/services/chips.html

·

California: Gateway Health Library (Sutter Gould Medical Foundation)

·

California: Health Library (Stanford University Medical Center), http://www-med.stanford.edu/healthlibrary/

52

Abstracted from http://www.nlm.nih.gov/medlineplus/libraries.html.

Finding Medical Libraries 157

·

California: Patient Education Resource Center - Health Information and Resources (University of California, San Francisco), http://sfghdean.ucsf.edu/barnett/PERC/default.asp

·

California: Redwood Health Library (Petaluma Health Care District), http://www.phcd.org/rdwdlib.html

·

California: San José PlaneTree Health Library, http://planetreesanjose.org/

·

California: Sutter Resource Library (Sutter Hospitals Foundation), http://go.sutterhealth.org/comm/resc-library/sac-resources.html

·

California: University of California, Davis. Health Sciences Libraries

·

California: ValleyCare Health Library & Ryan Comer Cancer Resource Center (ValleyCare Health System), http://www.valleycare.com/library.html

·

California: Washington Community Health Resource Library (Washington Community Health Resource Library), http://www.healthlibrary.org/

·

Colorado: William V. Gervasini Memorial Library (Exempla Healthcare), http://www.exempla.org/conslib.htm

·

Connecticut: Hartford Hospital Health Science Libraries (Hartford Hospital), http://www.harthosp.org/library/

·

Connecticut: Healthnet: Connecticut Consumer Health Information Center (University of Connecticut Health Center, Lyman Maynard Stowe Library), http://library.uchc.edu/departm/hnet/

·

Connecticut: Waterbury Hospital Health Center Library (Waterbury Hospital), http://www.waterburyhospital.com/library/consumer.shtml

·

Delaware: Consumer Health Library (Christiana Care Health System, Eugene du Pont Preventive Medicine & Rehabilitation Institute), http://www.christianacare.org/health_guide/health_guide_pmri_health _info.cfm

·

Delaware: Lewis B. Flinn Library (Delaware Academy of Medicine), http://www.delamed.org/chls.html

·

Georgia: Family Resource Library (Medical College of Georgia), http://cmc.mcg.edu/kids_families/fam_resources/fam_res_lib/frl.htm

·

Georgia: Health Resource Center (Medical Center of Central Georgia), http://www.mccg.org/hrc/hrchome.asp

·

Hawaii: Hawaii Medical Library: Consumer Health Information Service (Hawaii Medical Library), http://hml.org/CHIS/

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·

Idaho: DeArmond Consumer Health Library (Kootenai Medical Center), http://www.nicon.org/DeArmond/index.htm

·

Illinois: Health Learning Center of Northwestern Memorial Hospital (Northwestern Memorial Hospital, Health Learning Center), http://www.nmh.org/health_info/hlc.html

·

Illinois: Medical Library (OSF Saint Francis Medical Center), http://www.osfsaintfrancis.org/general/library/

·

Kentucky: Medical Library - Services for Patients, Families, Students & the Public (Central Baptist Hospital), http://www.centralbap.com/education/community/library.htm

·

Kentucky: University of Kentucky - Health Information Library (University of Kentucky, Chandler Medical Center, Health Information Library), http://www.mc.uky.edu/PatientEd/

·

Louisiana: Alton Ochsner Medical Foundation Library (Alton Ochsner Medical Foundation), http://www.ochsner.org/library/

·

Louisiana: Louisiana State University Health Sciences Center Medical Library-Shreveport, http://lib-sh.lsuhsc.edu/

·

Maine: Franklin Memorial Hospital Medical Library (Franklin Memorial Hospital), http://www.fchn.org/fmh/lib.htm

·

Maine: Gerrish-True Health Sciences Library (Central Maine Medical Center), http://www.cmmc.org/library/library.html

·

Maine: Hadley Parrot Health Science Library (Eastern Maine Healthcare), http://www.emh.org/hll/hpl/guide.htm

·

Maine: Maine Medical Center Library (Maine Medical Center), http://www.mmc.org/library/

·

Maine: Parkview Hospital, http://www.parkviewhospital.org/communit.htm#Library

·

Maine: Southern Maine Medical Center Health Sciences Library (Southern Maine Medical Center), http://www.smmc.org/services/service.php3?choice=10

·

Maine: Stephens Memorial Hospital Health Information Library (Western Maine Health), http://www.wmhcc.com/hil_frame.html

·

Manitoba, Canada: Consumer & Patient Health Information Service (University of Manitoba Libraries), http://www.umanitoba.ca/libraries/units/health/reference/chis.html

·

Manitoba, Canada: J.W. Crane Memorial Library (Deer Lodge Centre), http://www.deerlodge.mb.ca/library/libraryservices.shtml

Finding Medical Libraries 159

·

Maryland: Health Information Center at the Wheaton Regional Library (Montgomery County, Md., Dept. of Public Libraries, Wheaton Regional Library), http://www.mont.lib.md.us/healthinfo/hic.asp

·

Massachusetts: Baystate Medical Center Library (Baystate Health System), http://www.baystatehealth.com/1024/

·

Massachusetts: Boston University Medical Center Alumni Medical Library (Boston University Medical Center), http://medlibwww.bu.edu/library/lib.html

·

Massachusetts: Lowell General Hospital Health Sciences Library (Lowell General Hospital), http://www.lowellgeneral.org/library/HomePageLinks/WWW.htm

·

Massachusetts: Paul E. Woodard Health Sciences Library (New England Baptist Hospital), http://www.nebh.org/health_lib.asp

·

Massachusetts: St. Luke’s Hospital Health Sciences Library (St. Luke’s Hospital), http://www.southcoast.org/library/

·

Massachusetts: Treadwell Library Consumer Health Reference Center (Massachusetts General Hospital), http://www.mgh.harvard.edu/library/chrcindex.html

·

Massachusetts: UMass HealthNet (University of Massachusetts Medical School), http://healthnet.umassmed.edu/

·

Michigan: Botsford General Hospital Library - Consumer Health (Botsford General Hospital, Library & Internet Services), http://www.botsfordlibrary.org/consumer.htm

·

Michigan: Helen DeRoy Medical Library (Providence Hospital and Medical Centers), http://www.providence-hospital.org/library/

·

Michigan: Marquette General Hospital - Consumer Health Library (Marquette General Hospital, Health Information Center), http://www.mgh.org/center.html

·

Michigan: Patient Education Resouce Center - University of Michigan Cancer Center (University of Michigan Comprehensive Cancer Center), http://www.cancer.med.umich.edu/learn/leares.htm

·

Michigan: Sladen Library & Center for Health Information Resources Consumer Health Information, http://www.sladen.hfhs.org/library/consumer/index.html

·

Montana: Center for Health Information (St. Patrick Hospital and Health Sciences Center), http://www.saintpatrick.org/chi/librarydetail.php3?ID=41

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·

National: Consumer Health Library Directory (Medical Library Association, Consumer and Patient Health Information Section), http://caphis.mlanet.org/directory/index.html

·

National: National Network of Libraries of Medicine (National Library of Medicine) - provides library services for health professionals in the United States who do not have access to a medical library, http://nnlm.gov/

·

National: NN/LM List of Libraries Serving the Public (National Network of Libraries of Medicine), http://nnlm.gov/members/

·

Nevada: Health Science Library, West Charleston Library (Las Vegas Clark County Library District), http://www.lvccld.org/special_collections/medical/index.htm

·

New Hampshire: Dartmouth Biomedical Libraries (Dartmouth College Library), http://www.dartmouth.edu/~biomed/resources.htmld/conshealth.htmld/

·

New Jersey: Consumer Health Library (Rahway Hospital), http://www.rahwayhospital.com/library.htm

·

New Jersey: Dr. Walter Phillips Health Sciences Library (Englewood Hospital and Medical Center), http://www.englewoodhospital.com/links/index.htm

·

New Jersey: Meland Foundation (Englewood Hospital and Medical Center), http://www.geocities.com/ResearchTriangle/9360/

·

New York: Choices in Health Information (New York Public Library) NLM Consumer Pilot Project participant, http://www.nypl.org/branch/health/links.html

·

New York: Health Information Center (Upstate Medical University, State University of New York), http://www.upstate.edu/library/hic/

·

New York: Health Sciences Library (Long Island Jewish Medical Center), http://www.lij.edu/library/library.html

·

New York: ViaHealth Medical Library (Rochester General Hospital), http://www.nyam.org/library/

·

Ohio: Consumer Health Library (Akron General Medical Center, Medical & Consumer Health Library), http://www.akrongeneral.org/hwlibrary.htm

·

Oklahoma: Saint Francis Health System Patient/Family Resource Center (Saint Francis Health System), http://www.sfhtulsa.com/patientfamilycenter/default.asp

Finding Medical Libraries 161

·

Oregon: Planetree Health Resource Center (Mid-Columbia Medical Center), http://www.mcmc.net/phrc/

·

Pennsylvania: Community Health Information Library (Milton S. Hershey Medical Center), http://www.hmc.psu.edu/commhealth/

·

Pennsylvania: Community Health Resource Library (Geisinger Medical Center), http://www.geisinger.edu/education/commlib.shtml

·

Pennsylvania: HealthInfo Library (Moses Taylor Hospital), http://www.mth.org/healthwellness.html

·

Pennsylvania: Hopwood Library (University of Pittsburgh, Health Sciences Library System), http://www.hsls.pitt.edu/chi/hhrcinfo.html

·

Pennsylvania: Koop Community Health Information Center (College of Physicians of Philadelphia), http://www.collphyphil.org/kooppg1.shtml

·

Pennsylvania: Learning Resources Center - Medical Library (Susquehanna Health System), http://www.shscares.org/services/lrc/index.asp

·

Pennsylvania: Medical Library (UPMC Health System), http://www.upmc.edu/passavant/library.htm

·

Quebec, Canada: Medical Library (Montreal General Hospital), http://ww2.mcgill.ca/mghlib/

·

South Dakota: Rapid City Regional Hospital - Health Information Center (Rapid City Regional Hospital, Health Information Center), http://www.rcrh.org/education/LibraryResourcesConsumers.htm

·

Texas: Houston HealthWays (Houston Academy of Medicine-Texas Medical Center Library), http://hhw.library.tmc.edu/

·

Texas: Matustik Family Resource Center (Cook Children’s Health Care System), http://www.cookchildrens.com/Matustik_Library.html

·

Washington: Community Health Library (Kittitas Valley Community Hospital), http://www.kvch.com/

·

Washington: Southwest Washington Medical Center Library (Southwest Washington Medical Center), http://www.swmedctr.com/Home/

Your Child’s Rights and Insurance 163

APPENDIX E. YOUR CHILD’S RIGHTS AND INSURANCE Overview Parents face a series of issues related more to the healthcare industry than to their children’s medical conditions. This appendix covers two important topics in this regard: your responsibilities and your child’s rights as a patient, and how to get the most out of your child’s medical insurance plan.

Your Child’s Rights as a Patient The President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has created the following summary of your child’s rights as a patient.53 Information Disclosure Consumers have the right to receive accurate, easily understood information. Some consumers require assistance in making informed decisions about health plans, health professionals, and healthcare facilities. Such information includes: ·

Health plans. Covered benefits, cost-sharing, and procedures for resolving complaints, licensure, certification, and accreditation status, comparable measures of quality and consumer satisfaction, provider network composition, the procedures that govern access to specialists and emergency services, and care management information.

53Adapted

from Consumer Bill of Rights and Responsibilities: http://www.hcqualitycommission.gov/press/cbor.html#head1.

164 Dyslexia

·

Health professionals. Education, board certification, and recertification, years of practice, experience performing certain procedures, and comparable measures of quality and consumer satisfaction.

·

Healthcare facilities. Experience in performing certain procedures and services, accreditation status, comparable measures of quality, worker, and consumer satisfaction, and procedures for resolving complaints.

·

Consumer assistance programs. Programs must be carefully structured to promote consumer confidence and to work cooperatively with health plans, providers, payers, and regulators. Desirable characteristics of such programs are sponsorship that ensures accountability to the interests of consumers and stable, adequate funding.

Choice of Providers and Plans Consumers have the right to a choice of healthcare providers that is sufficient to ensure access to appropriate high-quality healthcare. To ensure such choice, the Commission recommends the following: ·

Provider network adequacy. All health plan networks should provide access to sufficient numbers and types of providers to assure that all covered services will be accessible without unreasonable delay -including access to emergency services 24 hours a day and 7 days a week. If a health plan has an insufficient number or type of providers to provide a covered benefit with the appropriate degree of specialization, the plan should ensure that the consumer obtains the benefit outside the network at no greater cost than if the benefit were obtained from participating providers.

·

Access to specialists. Consumers with complex or serious medical conditions who require frequent specialty care should have direct access to a qualified specialist of their choice within a plan’s network of providers. Authorizations, when required, should be for an adequate number of direct access visits under an approved treatment plan.

·

Transitional care. Consumers who are undergoing a course of treatment for a chronic or disabling condition at the time they involuntarily change health plans or at a time when a provider is terminated by a plan for other than cause should be able to continue seeing their current specialty providers for up to 90 days to allow for transition of care.

·

Choice of health plans. Public and private group purchasers should, wherever feasible, offer consumers a choice of high-quality health insurance plans.

Your Child’s Rights and Insurance 165

Access to Emergency Services Consumers have the right to access emergency healthcare services when and where the need arises. Health plans should provide payment when a consumer presents to an emergency department with acute symptoms of sufficient severity--including severe pain--such that a “prudent layperson” could reasonably expect the absence of medical attention to result in placing that consumer’s health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part.

Participation in Treatment Decisions Consumers have the right and responsibility to fully participate in all decisions related to their healthcare. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Physicians and other health professionals should: ·

Provide parents with sufficient information and opportunity to decide among treatment options consistent with the informed consent process.

·

Discuss all treatment options with a parent in a culturally competent manner, including the option of no treatment at all.

·

Ensure that persons with disabilities have effective communications with members of the health system in making such decisions.

·

Discuss all current treatments a consumer may be undergoing.

·

Discuss all risks, nontreatment.

·

Give parents the opportunity to refuse treatment for their children and to express preferences about future treatment decisions.

·

Discuss the use of advance directives -- both living wills and durable powers of attorney for healthcare -- with parents.

·

Abide by the decisions made by parents consistent with the informed consent process.

benefits,

and

consequences

to

treatment

or

166 Dyslexia

Health plans, health providers, and healthcare facilities should: ·

Disclose to consumers factors -- such as methods of compensation, ownership of or interest in healthcare facilities, or matters of conscience -that could influence advice or treatment decisions.

·

Assure that provider contracts do not contain any so-called “gag clauses” or other contractual mechanisms that restrict healthcare providers’ ability to communicate with and advise parents about medically necessary treatment options for their children.

·

Be prohibited from penalizing or seeking retribution against healthcare professionals or other health workers for advocating on behalf of their patients. Respect and Nondiscrimination

Consumers have the right to considerate, respectful care from all members of the healthcare industry at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality healthcare system. To assure that right, the Commission recommends the following: ·

Consumers must not be discriminated against in the delivery of healthcare services consistent with the benefits covered in their policy, or as required by law, based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.

·

Consumers eligible for coverage under the terms and conditions of a health plan or program, or as required by law, must not be discriminated against in marketing and enrollment practices based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.

Confidentiality of Health Information Consumers have the right to communicate with healthcare providers in confidence and to have the confidentiality of their individually identifiable healthcare information protected. Consumers also have the right to review and copy their own medical records and request amendments to their records.

Your Child’s Rights and Insurance 167

Complaints and Appeals Consumers have the right to a fair and efficient process for resolving differences with their health plans, healthcare providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review. A free copy of the Patient’s Bill of Rights is available from the American Hospital Association.54

Parent Responsibilities To underscore the importance of finance in modern healthcare as well as your responsibility for the financial aspects of your child’s care, the President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has proposed that parents understand the following “Consumer Responsibilities.”55 In a healthcare system that protects consumers’ rights, it is reasonable to expect and encourage consumers to assume certain responsibilities. Greater involvement by parents in their children’s care increases the likelihood of achieving the best outcome and helps support a quality-oriented, cost-conscious environment. Such responsibilities include: ·

Take responsibility for maximizing your child’s healthy habits.

·

Work collaboratively with healthcare providers in developing and carrying out your child’s agreed-upon treatment plans.

·

Disclose relevant information and clearly communicate wants and needs.

·

Use the insurance company’s internal complaint and appeal processes to address your concerns.

·

Recognize the reality of risks, the limits of the medical science, and the human fallibility of the healthcare professional.

·

Be aware of a healthcare provider’s obligation to be reasonably efficient and equitable in providing care to the community.

·

Become knowledgeable about health plan coverage and options (when available) including all covered benefits, limitations, and exclusions, rules regarding use of network providers, coverage and referral rules,

To order your free copy of the Patient’s Bill of Rights, telephone 312-422-3000 or visit the American Hospital Association’s Web site: http://www.aha.org. Click on “Resource Center,” go to “Search” at bottom of page, and then type in “Patient’s Bill of Rights.” The Patient’s Bill of Rights is also available from Fax on Demand, at 312-422-2020, document number 471124. 55 Adapted from http://www.hcqualitycommission.gov/press/cbor.html#head1. 54

168 Dyslexia

appropriate processes to secure additional information, and the process to appeal coverage decisions. ·

Make a good-faith effort to meet financial obligations.

·

Abide by administrative and operational procedures of health plans, healthcare providers, and Government health benefit programs.

Choosing an Insurance Plan There are a number of official government agencies that help consumers understand their healthcare insurance choices.56 The U.S. Department of Labor, in particular, recommends ten ways to make your health benefits choices work best for your family.57 1. Your options are important. There are many different types of health benefit plans. Find out which one your employer offers, then check out the plan, or plans, offered. Your employer’s human resource office, the health plan administrator, or your union can provide information to help you match your family’s needs and preferences with the available plans. The more information you have, the better your healthcare decisions will be. 2. Reviewing the benefits available. Do the plans offered cover preventive care, well-baby care, vision or dental care? Are there deductibles? Answers to these questions can help determine the out-of-pocket expenses you may face. Cheapest may not always be best. Your goal is high quality health benefits. 3. Look for quality. The quality of healthcare services varies, but quality can be measured. You should consider the quality of healthcare in deciding among the healthcare plans or options available to your family. Not all health plans, doctors, hospitals and other providers give the highest quality care. Fortunately, there is quality information you can use right now to help you compare your healthcare choices. Find out how you can measure quality. Consult the U.S. Department of Health and Human Services publication “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer.

More information about quality across programs is provided at the following AHRQ Web site: http://www.ahrq.gov/consumer/qntascii/qnthplan.htm. 57 Adapted from the Department of Labor: http://www.dol.gov/dol/pwba/public/pubs/health/top10-text.html. 56

Your Child’s Rights and Insurance 169

4. Your plan’s summary plan description (SPD) provides a wealth of information. Your health plan administrator can provide you with a copy of your plan’s SPD. It outlines your family’s benefits and your legal rights under the Employee Retirement Income Security Act (ERISA), the federal law that protects your family’s health benefits. It should contain information about the coverage of dependents, what services will require a co-pay, and the circumstances under which your employer can change or terminate a health benefits plan. Save the SPD and all other health plan brochures and documents, along with memos or correspondence from your employer relating to health benefits. 5. Assess your benefit coverage as your family status changes. Marriage, divorce, childbirth or adoption, and the death of a spouse are all life events that may signal a need to change your health benefits. You, your spouse and dependent children may be eligible for a special enrollment period under provisions of the Health Insurance Portability and Accountability Act (HIPAA). Even without life-changing events, the information provided by your employer should tell you how you can change benefits or switch plans, if more than one plan is offered. If your spouse’s employer also offers a health benefits package, consider coordinating both plans for maximum coverage. 6. Changing jobs and other life events can affect your family’s health benefits. Under the Consolidated Omnibus Budget Reconciliation Act (COBRA), you, your covered spouse, and your dependent children may be eligible to purchase extended health coverage under your employer’s plan if you lose your job, change employers, get divorced, or upon occurrence of certain other events. Coverage can range from 18 to 36 months depending on your situation. COBRA applies to most employers with 20 or more workers and requires your plan to notify you of your rights. Most plans require eligible individuals to make their COBRA election within 60 days of the plan’s notice. Be sure to follow up with your plan sponsor if you don’t receive notice, and make sure you respond within the allotted time. 7. HIPAA can also help if you are changing jobs, particularly if you have a medical condition. HIPAA generally limits pre-existing condition exclusions to a maximum of 12 months (18 months for late enrollees). HIPAA also requires this maximum period to be reduced by the length of time you had prior “creditable coverage.” You should receive a certificate documenting your prior creditable coverage from your old plan when coverage ends. 8. Plan for retirement. Before you retire, find out what health benefits, if any, extend to you and your spouse during your retirement years. Consult with

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your employer’s human resources office, your union, the plan administrator, and check your SPD. Make sure there is no conflicting information among these sources about the benefits your family will receive or the circumstances under which they can change or be eliminated. With this information in hand, you can make other important choices, like finding out if you are eligible for Medicare and Medigap insurance coverage. 9. Know how to file an appeal if a health benefits claim is denied. Understand how your plan handles grievances and where to make appeals of the plan’s decisions. Keep records and copies of correspondence. Check your health benefits package and your SPD to determine who is responsible for handling problems with benefit claims. Contact PWBA for customer service assistance if you are unable to obtain a response to your complaint. 10. You can take steps to improve the quality of the healthcare and the health benefits your family receives. Look for and use things like Quality Reports and Accreditation Reports whenever you can. Quality reports may contain consumer ratings -- how satisfied consumers are with the doctors in their plan, for instance-- and clinical performance measures -- how well a healthcare organization prevents and treats illness. Accreditation reports provide information on how accredited organizations meet national standards, and often include clinical performance measures. Look for these quality measures whenever possible. Consult “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer.

Medicaid Illness strikes both rich and poor families. For low-income families, Medicaid is available to defer the costs of treatment. In the following pages, you will learn the basics about Medicaid as well as useful contact information on how to find more in-depth information. Medicaid is a joint federal and state program that helps pay medical costs for some people with low incomes and limited resources. Medicaid programs vary from state to state. You can find more information about Medicaid on the HCFA.gov Web site at http://www.hcfa.gov/medicaid/medicaid.htm.

NORD’s Medication Assistance Programs Finally, the National Organization for Rare Disorders, Inc. (NORD) administers medication programs sponsored by humanitarian-minded

Your Child’s Rights and Insurance 171

pharmaceutical and biotechnology companies to help uninsured or underinsured individuals secure life-saving or life-sustaining drugs.58 NORD programs ensure that certain vital drugs are available “to those families whose income is too high to qualify for Medicaid but too low to pay for their prescribed medications.” The program has standards for fairness, equity, and unbiased eligibility. It currently covers some 14 programs for nine pharmaceutical companies. NORD also offers early access programs for investigational new drugs (IND) under the approved “Treatment INDs” programs of the Food and Drug Administration (FDA). In these programs, a limited number of individuals can receive investigational drugs that have yet to be approved by the FDA. These programs are generally designed for rare medical conditions. For more information, visit www.rarediseases.org.

Additional Resources In addition to the references already listed in this chapter, you may need more information on health insurance, hospitals, or the healthcare system in general. The NIH has set up an excellent guidance Web site that addresses these and other issues. Topics include:59 ·

Health Insurance: http://www.nlm.nih.gov/medlineplus/healthinsurance.html

·

Health Statistics: http://www.nlm.nih.gov/medlineplus/healthstatistics.html

·

HMO and Managed Care: http://www.nlm.nih.gov/medlineplus/managedcare.html

·

Hospice Care: http://www.nlm.nih.gov/medlineplus/hospicecare.html

·

Medicaid: http://www.nlm.nih.gov/medlineplus/medicaid.html

·

Medicare: http://www.nlm.nih.gov/medlineplus/medicare.html

·

Nursing Homes and Long-term Care: http://www.nlm.nih.gov/medlineplus/nursinghomes.html

Adapted from NORD: http://www.rarediseases.org/cgibin/nord/progserv#patient?id=rPIzL9oD&mv_pc=30. 59 You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html. 58

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·

Patient’s Rights, Confidentiality, Informed Consent, Ombudsman Programs, Privacy and Patient Issues: http://www.nlm.nih.gov/medlineplus/patientissues.html

·

Veteran’s Health, Persian Gulf War, Gulf War Syndrome, Agent Orange: http://www.nlm.nih.gov/medlineplus/veteranshealth.html

Online Glossaries 173

ONLINE GLOSSARIES The Internet provides access to a number of free-to-use medical dictionaries and glossaries. The National Library of Medicine has compiled the following list of online dictionaries: ·

ADAM Medical Encyclopedia (A.D.A.M., Inc.), comprehensive medical reference: http://www.nlm.nih.gov/medlineplus/encyclopedia.html

·

MedicineNet.com Medical Dictionary (MedicineNet, Inc.): http://www.medterms.com/Script/Main/hp.asp

·

Merriam-Webster Medical Dictionary (Inteli-Health, Inc.): http://www.intelihealth.com/IH/

·

Multilingual Glossary of Technical and Popular Medical Terms in Eight European Languages (European Commission) - Danish, Dutch, English, French, German, Italian, Portuguese, and Spanish: http://allserv.rug.ac.be/~rvdstich/eugloss/welcome.html

·

On-line Medical Dictionary (CancerWEB): http://www.graylab.ac.uk/omd/

·

Technology Glossary (National Library of Medicine) - Health Care Technology: http://www.nlm.nih.gov/nichsr/ta101/ta10108.htm

·

Terms and Definitions (Office of Rare Diseases): http://rarediseases.info.nih.gov/ord/glossary_a-e.html

Beyond these, MEDLINEplus contains a very user-friendly encyclopedia covering every aspect of medicine (licensed from A.D.A.M., Inc.). The ADAM Medical Encyclopedia Web site address is http://www.nlm.nih.gov/medlineplus/encyclopedia.html. ADAM is also available on commercial Web sites such as drkoop.com (http://www.drkoop.com/) and Web MD (http://my.webmd.com/adam/asset/adam_disease_articles/a_to_z/a). Topics of interest can be researched by using keywords before continuing elsewhere, as these basic definitions and concepts will be useful in more advanced areas of research. You may choose to print various pages specifically relating to dyslexia and keep them on file. The NIH, in particular, suggests that parents of children with dyslexia visit the following Web sites in the ADAM Medical Encyclopedia:

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·

Basic Guidelines for Dyslexia Developmental reading disorder Web site: http://www.nlm.nih.gov/medlineplus/ency/article/001406.htm

·

Signs & Symptoms for Dyslexia Behavior problems Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003255.htm

Online Dictionary Directories The following are additional online directories compiled by the National Library of Medicine, including a number of specialized medical dictionaries and glossaries: ·

Medical Dictionaries: Medical & Biological (World Health Organization): http://www.who.int/hlt/virtuallibrary/English/diction.htm#Medical

·

MEL-Michigan Electronic Library List of Online Health and Medical Dictionaries (Michigan Electronic Library): http://mel.lib.mi.us/health/health-dictionaries.html

·

Patient Education: Glossaries (DMOZ Open Directory Project): http://dmoz.org/Health/Education/Patient_Education/Glossaries/

·

Web of Online Dictionaries (Bucknell University): http://www.yourdictionary.com/diction5.html#medicine

Glossary 175

DYSLEXIA GLOSSARY The following is a complete glossary of terms used in this sourcebook. The definitions are derived from official public sources including the National Institutes of Health [NIH] and the European Union [EU]. After this glossary, we list a number of additional hardbound and electronic glossaries and dictionaries that you may wish to consult. Aberrant: Wandering or deviating from the usual or normal course. [EU] Accommodation: distances. [EU]

Adjustment, especially that of the eye for various

Acuity: Clarity or clearness, especially of the vision. [EU] Anatomical: Pertaining to anatomy, or to the structure of the organism. [EU] Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting from unrecognized intrapsychic conflict. Physiological concomitants include increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU] Aphasia: Defect or loss of the power of expression by speech, writing, or signs, or of comprehending spoken or written language, due to injury or disease of the brain centres. [EU] Aptitude: The ability to acquire general or special types of knowledge or skill. [NIH] Ataxia: Failure of muscular coordination; irregularity of muscular action. [EU]

Auditory: Pertaining to the sense of hearing. [EU] Autopsy: Postmortem examination of the body. [NIH] Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Bilateral: Having two sides, or pertaining to both sides. [EU] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars,

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celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Cerebellar: Pertaining to the cerebellum. [EU] Cerebellum: Part of the metencephalon that lies in the posterior cranial fossa behind the brain stem. It is concerned with the coordination of movement. [NIH] Cerebral: Of or pertaining of the cerebrum or the brain. [EU] Cholesterol: The principal sterol of all higher animals, distributed in body tissues, especially the brain and spinal cord, and in animal fats and oils. [NIH] Chorea: The ceaseless occurrence of a wide variety of rapid, highly complex, jerky movements that appear to be well coordinated but are performed involuntarily. [EU] Chromosomal: Pertaining to chromosomes. [EU] Collapse: 1. a state of extreme prostration and depression, with failure of circulation. 2. abnormal falling in of the walls of any part of organ. [EU] Confusion: Disturbed orientation in regard to time, place, or person, sometimes accompanied by disordered consciousness. [EU] Cortical: Pertaining to or of the nature of a cortex or bark. [EU] Cues: Signals for an action; that specific portion of a perceptual field or pattern of stimuli to which a subject has learned to respond. [NIH] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Dementia: An acquired organic mental disorder with loss of intellectual abilities of sufficient severity to interfere with social or occupational functioning. The dysfunction is multifaceted and involves memory, behavior, personality, judgment, attention, spatial relations, language, abstract thought, and other executive functions. The intellectual decline is usually progressive, and initially spares the level of consciousness. [NIH] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Dizziness: An imprecise term which may refer to a sense of spatial disorientation, motion of the environment, or lightheadedness. [NIH] Dominance: In genetics, the full phenotypic expression of a gene in both heterozygotes and homozygotes. [EU] Dysarthria: Imperfect articulation of speech due to disturbances of muscular control which result from damage to the central or peripheral nervous system. [EU] Dystonia: Disordered tonicity of muscle. [EU]

Glossary 177

Electroencephalography: The recording of the electric currents developed in the brain, by means of electrodes applied to the scalp, to the surface of the brain (intracranial e.) or placed within the substance of the brain (depth e.). [EU]

Ethanol: A clear, colorless liquid rapidly absorbed from the gastrointestinal tract and distributed throughout the body. It has bactericidal activity and is used often as a topical disinfectant. It is widely used as a solvent and preservative in pharmaceutical preparations as well as serving as the primary ingredient in alcoholic beverages. [NIH] Genotype: The genetic constitution of the individual; the characterization of the genes. [NIH] Heredity: 1. the genetic transmission of a particular quality or trait from parent to offspring. 2. the genetic constitution of an individual. [EU] Hyperplasia: The abnormal multiplication or increase in the number of normal cells in normal arrangement in a tissue. [EU] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]

Lobe: A more or less well-defined portion of any organ, especially of the brain, lungs, and glands. Lobes are demarcated by fissures, sulci, connective tissue, and by their shape. [EU] Localization: 1. the determination of the site or place of any process or lesion. 2. restriction to a circumscribed or limited area. 3. prelocalization. [EU] Mental: Pertaining to the mind; psychic. 2. (L. mentum chin) pertaining to the chin. [EU] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Myopia: That error of refraction in which rays of light entering the eye parallel to the optic axis are brought to a focus in front of the retina, as a result of the eyeball being too long from front to back (axial m.) or of an increased strength in refractive power of the media of the eye (index m.). Called also nearsightedness, because the near point is less distant than it is in emmetropia with an equal amplitude of accommodation. [EU] Neural: 1. pertaining to a nerve or to the nerves. 2. situated in the region of the spinal axis, as the neutral arch. [EU] Neuroanatomy: Study of the anatomy of the nervous system as a specialty or discipline. [NIH] Neurology: A medical specialty concerned with the study of the structures,

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functions, and diseases of the nervous system. [NIH] Neuronal: Pertaining to a neuron or neurons (= conducting cells of the nervous system). [EU] Neurons: The basic cellular units of nervous tissue. Each neuron consists of a body, an axon, and dendrites. Their purpose is to receive, conduct, and transmit impulses in the nervous system. [NIH] Neuropsychology: A branch of psychology which investigates the correlation between experience or behavior and the basic neurophysiological processes. The term neuropsychology stresses the dominant role of the nervous system. It is a more narrowly defined field than physiological psychology or psychophysiology. [NIH] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Nystagmus: An involuntary, rapid, rhythmic movement of the eyeball, which may be horizontal, vertical, rotatory, or mixed, i.e., of two varieties. [EU]

Ocular: 1. of, pertaining to, or affecting the eye. 2. eyepiece. [EU] Ophthalmic: Pertaining to the eye. [EU] Oral: Pertaining to the mouth, taken through or applied in the mouth, as an oral medication or an oral thermometer. [EU] Panic: A state of extreme acute, intense anxiety and unreasoning fear accompanied by disorganization of personality function. [NIH] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Phenotype: The outward appearance of the individual. It is the product of interactions between genes and between the genotype and the environment. This includes the killer phenotype, characteristic of yeasts. [NIH] Polymorphic: Occurring in several or many forms; appearing in different forms at different stages of development. [EU] Posterior: Situated in back of, or in the back part of, or affecting the back or dorsal surface of the body. In lower animals, it refers to the caudal end of the body. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH]

Glossary 179

Prevalence: The total number of cases of a given disease in a specified population at a designated time. It is differentiated from incidence, which refers to the number of new cases in the population at a given time. [NIH] Progressive: Advancing; going forward; going from bad to worse; increasing in scope or severity. [EU] Prostaglandins: A group of compounds derived from unsaturated 20carbon fatty acids, primarily arachidonic acid, via the cyclooxygenase pathway. They are extremely potent mediators of a diverse group of physiological processes. [NIH] Psychiatric: Pertaining to or within the purview of psychiatry. [EU] Psychiatry: The medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders. [NIH] Psychology: The science dealing with the study of mental processes and behavior in man and animals. [NIH] Psychopathology: The study of significant causes and processes in the development of mental illness. [NIH] Psychopharmacology: The study of the effects of drugs on mental and behavioral activity. [NIH] Psychophysiology: The study of the physiological basis of human and animal behavior. [NIH] Pupil: The aperture in the iris through which light passes. [NIH] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Saccades: An abrupt voluntary shift in ocular fixation from one point to another, as occurs in reading. [NIH] Schizophrenia: A severe emotional disorder of psychotic depth characteristically marked by a retreat from reality with delusion formation, hallucinations, emotional disharmony, and regressive behavior. [NIH] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Semantics: The relationships between symbols and their meanings. [NIH] Spasmodic: Of the nature of a spasm. [EU] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of

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activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Subclinical: Without clinical manifestations; said of the early stage(s) of an infection or other disease or abnormality before symptoms and signs become apparent or detectable by clinical examination or laboratory tests, or of a very mild form of an infection or other disease or abnormality. [EU] Substrate: A substance upon which an enzyme acts. [EU] Thermoregulation: Heat regulation. [EU] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH] Tinnitus: A noise in the ears, as ringing, buzzing, roaring, clicking, etc. Such sounds may at times be heard by others than the patient. [EU] Tomography: The recording of internal body images at a predetermined plane by means of the tomograph; called also body section roentgenography. [EU]

Triage: The sorting out and classification of patients or casualties to determine priority of need and proper place of treatment. [NIH] Vascular: Pertaining to blood vessels or indicative of a copious blood supply. [EU] Vestibular: Pertaining to or toward a vestibule. In dental anatomy, used to refer to the tooth surface directed toward the vestibule of the mouth. [EU]

General Dictionaries and Glossaries While the above glossary is essentially complete, the dictionaries listed here cover virtually all aspects of medicine, from basic words and phrases to more advanced terms (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·

Dictionary of Medical Acronymns & Abbreviations by Stanley Jablonski (Editor), Paperback, 4th edition (2001), Lippincott Williams & Wilkins Publishers, ISBN: 1560534605, http://www.amazon.com/exec/obidos/ASIN/1560534605/icongroupinterna

·

Dictionary of Medical Terms : For the Nonmedical Person (Dictionary of Medical Terms for the Nonmedical Person, Ed 4) by Mikel A. Rothenberg, M.D, et al, Paperback - 544 pages, 4th edition (2000), Barrons Educational Series, ISBN: 0764112015, http://www.amazon.com/exec/obidos/ASIN/0764112015/icongroupinterna

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·

A Dictionary of the History of Medicine by A. Sebastian, CD-Rom edition (2001), CRC Press-Parthenon Publishers, ISBN: 185070368X, http://www.amazon.com/exec/obidos/ASIN/185070368X/icongroupinterna

·

Dorland’s Illustrated Medical Dictionary (Standard Version) by Dorland, et al, Hardcover - 2088 pages, 29th edition (2000), W B Saunders Co, ISBN: 0721662544, http://www.amazon.com/exec/obidos/ASIN/0721662544/icongroupinterna

·

Dorland’s Electronic Medical Dictionary by Dorland, et al, Software, 29th Book & CD-Rom edition (2000), Harcourt Health Sciences, ISBN: 0721694934, http://www.amazon.com/exec/obidos/ASIN/0721694934/icongroupinterna

·

Dorland’s Pocket Medical Dictionary (Dorland’s Pocket Medical Dictionary, 26th Ed) Hardcover - 912 pages, 26th edition (2001), W B Saunders Co, ISBN: 0721682812, http://www.amazon.com/exec/obidos/ASIN/0721682812/icongroupinterna /103-4193558-7304618

·

Melloni’s Illustrated Medical Dictionary (Melloni’s Illustrated Medical Dictionary, 4th Ed) by Melloni, Hardcover, 4th edition (2001), CRC PressParthenon Publishers, ISBN: 85070094X, http://www.amazon.com/exec/obidos/ASIN/85070094X/icongroupinterna

·

Stedman’s Electronic Medical Dictionary Version 5.0 (CD-ROM for Windows and Macintosh, Individual) by Stedmans, CD-ROM edition (2000), Lippincott Williams & Wilkins Publishers, ISBN: 0781726328, http://www.amazon.com/exec/obidos/ASIN/0781726328/icongroupinterna

·

Stedman’s Medical Dictionary by Thomas Lathrop Stedman, Hardcover 2098 pages, 27th edition (2000), Lippincott, Williams & Wilkins, ISBN: 068340007X, http://www.amazon.com/exec/obidos/ASIN/068340007X/icongroupinterna

·

Tabers Cyclopedic Medical Dictionary (Thumb Index) by Donald Venes (Editor), et al, Hardcover - 2439 pages, 19th edition (2001), F A Davis Co, ISBN: 0803606540, http://www.amazon.com/exec/obidos/ASIN/0803606540/icongroupinterna

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INDEX A Accommodation.............................76, 177 Acuity...............................................68, 74 Anatomical...........................32, 46, 58, 69 Anxiety...........................................17, 178 Aphasia......................................48, 85, 95 Ataxia.......................................74, 95, 110 Auditory ......20, 45, 58, 73, 74, 85, 86, 87, 138, 140, 141 Autopsy..................................................69 B Bacteria .................................27, 146, 180 Bilateral..................................................47 C Capsules..............................................149 Carbohydrate.......................................148 Cerebellar ..............61, 64, 72, 73, 74, 141 Cerebellum ....................................61, 176 Cerebral...................................58, 85, 139 Cholesterol ..................................146, 148 Chorea ...................................................33 Chromosomal ........................................51 Collapse.................................................43 Confusion ..............................................70 Cortical ......................................50, 59, 74 Cues ......................................................85 D Degenerative .......................................147 Diarrhea...............................................146 Dizziness .........................................95, 96 Dominance ..........................................139 Dysarthria ..............................................85 Dystonia...........................................95, 96 E Ethanol ..................................................78 G Genotype .................................57, 62, 178 H Heredity ...............................................100 Hyperplasia............................................33 M Mental .....17, 62, 79, 85, 96, 98, 130, 132, 143, 166, 176, 179 Molecular .......................56, 104, 107, 108 Myopia ...................................................66

N Neural ....... 50, 51, 52, 57, 58, 59, 81, 139 Neurology...................................... 71, 139 Neuronal ............................................... 50 Neurons .................................. 59, 62, 178 Neuropsychology .......................... 98, 178 Niacin .................................................. 147 Nystagmus ...................................... 72, 74 O Ocular ..................................... 74, 76, 179 Oral ...... 17, 44, 50, 78, 87, 90, 101, 153, 175, 178 Overdose ............................................ 147 P Phenotype............................... 51, 62, 178 Polymorphic .......................................... 57 Posterior................................ 47, 114, 176 Potassium ........................................... 148 Prevalence ...................................... 44, 53 Progressive ............................. 71, 98, 176 Psychiatric......................... 33, 78, 83, 151 Psychiatry ....................... 38, 96, 100, 179 Psychology........................ 71, 96, 98, 178 Psychopathology .................................. 47 Psychophysiology ......................... 98, 178 R Riboflavin ............................................ 146 S Schizophrenia ............................... 33, 151 Selenium ............................................. 148 Semantics ............................................. 88 Spasmodic ............................................ 96 Spectrum................................... 20, 56, 70 Subclinical............................................. 72 Substrate............................................... 58 T Thermoregulation................................ 146 Thyroxine ............................................ 148 Tinnitus ................................................. 96 Tomography.................................... 46, 58 Triage.................................................... 55 V Vascular .......................................... 57, 78 Vestibular ...................... 64, 72, 73, 74, 96

Index 183

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Index 185

186 Dyslexia