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

Raising a Child with a Neuromuscular Disorder

A Guide for Parents, Grandparents, Friends, and Professionals

Hardcover

Published: 1st November 1999
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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.

"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 "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 "I have known and admired Dr. Charlotte Thompson for many years and to have read this book has enhanced that admiration. As one who has spent much of a professional lifetime working on neuromuscular disease, I believe that this clear and sensitively written account by a doctor and a mother will be of inestimable benefit to parents and families of children with neuromuscular disorders and to the many healh-care professionals who care for them. Succinctly presented, refreshingly jargon-free, but never theless accurate and explicit, the book presents information and advice which will be invaluable to many; I commend it warmly."--John Walton, former Professor of Neurology, University of Newcastle-upon-Tyne; former chairman, Muscular Dystrophy Group of Great Britain and Northern Ireland; former president, World Federation of Neurology "A knowledgeable, sympathetic, and practical guide for both families of children diagnosed with a wide variety of neuromuscular disorders and professionals involved with their care.... First-rate help for a devastating problem."--Kirkus "Not limiting her book to medical care issues, Thompson provides discussion and resources for further information on almost every conceivable aspect of daily living, from locating a medical equipment vendor to finding the best school program.... Highly recommended."--Library Journal

Foreword
Preface
Introductionp. 3
Coping With the Diagnosisp. 5
When to Ask for a Second Opinionp. 13
Neuromuscular Disorders: History, Incidence, and Geneticsp. 20
Neuromuscular Disorders: Descriptions and Treatmentp. 26
Your Medical Teamp. 78
Navigating the Medical Mazep. 90
General Medical Carep. 97
Special Needsp. 105
Tips for Mothers, Fathers, Grandparents, Brothers, and Sistersp. 117
Tips on Coping With Your Child's Ups and Downsp. 131
Helping Develop Your Child's Coping Skillsp. 140
Finding the Best School Programp. 148
How to Be a Strong Advocate for Your Childp. 164
What Lies Ahead?p. 172
Questions and Answersp. 175
Surviving the Loss of a Childp. 182
The ABCs of Geneticsp. 189
Tablesp. 193
Chores Chart for Childrenp. 201
Resource Directoriesp. 203
Glossaryp. 257
Suggested Readingsp. 263
Indexp. 267
Table of Contents provided by Blackwell. All Rights Reserved.

ISBN: 9780195128437
ISBN-10: 0195128435
Audience: General
Format: Hardcover
Language: English
Number Of Pages: 288
Published: 1st November 1999
Publisher: Oxford University Press Inc
Country of Publication: US
Dimensions (cm): 24.0 x 16.1  x 2.7
Weight (kg): 0.59