Raising a Child with a Neuromuscular Disorder: A Guide for Parents, Grandparents, Friends, and Professionals

Raising a Child with a Neuromuscular Disorder: A Guide for Parents, Grandparents, Friends, and Professionals

by Charlotte E. Thompson, M. D. Thompson

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Overview

Raising a Child with a Neuromuscular Disorder: A Guide for Parents, Grandparents, Friends, and Professionals by Charlotte E. Thompson, M. D. Thompson

Raising a child with a neuromuscular disorder can be a overwhelming experience for even the strongest parent or grandparent. Dr. Charlotte Thompson, a leading authority in pediatric neuromuscular disorders, draws on her 38 years of experience treating children with muscular dystrophy, spinal atrophy, congenital and mitochondrial myopathies, Charcot-Marie-Tooth, and all the childhood neuromuscular disorders. Her book provides not only medical facts but much practical advice on how to cope with the many challenges of day-to-day parenting a child with neuromuscular disease.
Dr. Thompson discusses how to cope with the initial diagnosis of a neuromuscular disorder and then suggests ways to get beyond the shock, numbness, and anger that may occur. She describes each of the principal diseases giving the history, signs and symptoms, the usual course, outcome, genetics, and any possible treatments. Subsequent chapters offer advice on when to ask for a second opinion about the diagnosis, how to navigate the medical maze and work with a child's medical team. Tips on finding the most appropriate school placement and developing an individual education program (IEP) are invaluable. Dr. Thompson stresses the importance of taking one day at a time and insists that parents must care for themselves. She offers suggestions for developing family closeness and even how to make time for fun. Wise advice from parents of children with neuromuscular disease is inserted in boxes throughout the chapters. A large appendix gives resources state by state and country by country.
There is no training that prepares you to be the parent of a child with a disability, but Raising a Child with a Neuromuscular Disorder should be a great help to parents, grandparents, and anyone who cares for a child or young person.

Product Details

ISBN-13: 9780195128437
Publisher: Oxford University Press, USA
Publication date: 09/28/1999
Edition description: New Edition
Pages: 288
Product dimensions: 9.30(w) x 6.00(h) x 1.10(d)

About the Author

Charlotte E. Thompson, M.D., is the director of the Center for Handicapped Children and Teenagers in San Francisco. She is a Fellow of the American Academy of Pediatrics and an assistant clinical professor of pediatrics at the University of California in San Diego. The author of the widely acclaimed book, Raising a Handicapped Child she lives in San Francisco.

Table of Contents

Forewordix
Prefacexi
Introduction3
1Coping With the Diagnosis5
2When to Ask for a Second Opinion13
3Neuromuscular Disorders: History, Incidence, and Genetics20
4Neuromuscular Disorders: Descriptions and Treatment26
5Your Medical Team78
6Navigating the Medical Maze90
7General Medical Care97
8Special Needs105
9Tips for Mothers, Fathers, Grandparents, Brothers, and Sisters117
10Tips on Coping With Your Child's Ups and Downs131
11Helping Develop Your Child's Coping Skills140
12Finding the Best School Program148
13How to Be a Strong Advocate for Your Child164
14What Lies Ahead?172
15Questions and Answers175
16Surviving the Loss of a Child182
Appendix AThe ABCs of Genetics189
Appendix BTables193
Appendix CChores Chart for Children201
Appendix DResource Directories203
Glossary257
Suggested Readings263
Index267

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