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

by Charlotte E. Thompson

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.

Product Details

ISBN-13:	9780195128437
Publisher:	Oxford University Press
Publication date:	09/09/1999
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

	Foreword	ix
	Preface	xi
	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
Appendix A	The ABCs of Genetics	189
Appendix B	Tables	193
Appendix C	Chores Chart for Children	201
Appendix D	Resource Directories	203
	Glossary	257
	Suggested Readings	263
	Index	267

Editorial Reviews

"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

From the Publisher

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

Jane S. Van Ingen

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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