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

Overview

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 ...

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Overview

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.

The book contains no figures.

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Editorial Reviews

From the Publisher
"Dr. Thompson's book provides an excellent resource for parents and caregivers of children afflicted with neuromuscular disease. The chapters focusing on coping skills and navigating the medical maze will be particularly helpful to families as they deal with the complex issues that surround the care of their child."—Andrew G. Engel, M.D.

"This book is a must-read for parents, grandparents and others who care for children with a neuromuscular disorder. Dr. Thompson provides the best, up-to-date medical information on these disorders and carefully guides parents through the maze of real-life challenges that arise along the way."—Bobbi Conner, host of the award-winning Parent's Journal Public Radio Series, and author of The Parent's Journal Guide to Raising Great Kids

Jane S. Van Ingen
An excellent and inclusive resource, this should be the first book parents buy when they discover their child is learning disabled....Thompson, Director of the Center for Handicapped Children in San Francisco, provides much more insight into finding and accepting a diagnosis of a neuromuscular disease as well as the history, definitions and treatments of the different disorders.
WE
Booknews
Thompson (pediatrics, University of California in San Diego) draws upon her experience treating children with muscular dystrophy, spinal atrophy, congenital and mitochondrial myopathies, and Charcot-Marie- Tooth to present, not only the medical facts, but practical advice on how to cope with the challenges of parenting a child with neuromuscular disease. She discusses how to cope with the initial diagnosis and offers advice on second opinions, school placement, developing family closeness and other issues. Annotation c. Book News, Inc., Portland, OR (booknews.com)
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Product Details

  • ISBN-13: 9780195128437
  • Publisher: Oxford University Press, USA
  • Publication date: 9/28/1999
  • Edition description: New Edition
  • Pages: 288
  • Product dimensions: 9.30 (w) x 6.00 (h) x 1.10 (d)

Meet 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.

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Table of Contents

Foreword
Preface
Introduction 3
1 Coping With the Diagnosis 5
2 When to Ask for a Second Opinion 13
3 Neuromuscular Disorders: History, Incidence, and Genetics 20
4 Neuromuscular Disorders: Descriptions and Treatment 26
5 Your Medical Team 78
6 Navigating the Medical Maze 90
7 General Medical Care 97
8 Special Needs 105
9 Tips for Mothers, Fathers, Grandparents, Brothers, and Sisters 117
10 Tips on Coping With Your Child's Ups and Downs 131
11 Helping Develop Your Child's Coping Skills 140
12 Finding the Best School Program 148
13 How to Be a Strong Advocate for Your Child 164
14 What Lies Ahead? 172
15 Questions and Answers 175
16 Surviving the Loss of a Child 182
App. A The ABCs of Genetics 189
App. B Tables 193
App. C Chores Chart for Children 201
App. D Resource Directories 203
Glossary 257
Suggested Readings 263
Index 267
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