Raising a Child with a Neuromuscular Disorder: A Guide for Parents, Grandparents, Friends, and Professionals
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...
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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. WE - 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.
ForewordPrefaceIntroduction31Coping With the Diagnosis52When to Ask for a Second Opinion133Neuromuscular Disorders: History, Incidence, and Genetics204Neuromuscular Disorders: Descriptions and Treatment265Your Medical Team786Navigating the Medical Maze907General Medical Care978Special Needs1059Tips for Mothers, Fathers, Grandparents, Brothers, and Sisters11710Tips on Coping With Your Child's Ups and Downs13111Helping Develop Your Child's Coping Skills14012Finding the Best School Program14813How to Be a Strong Advocate for Your Child16414What Lies Ahead?17215Questions and Answers17516Surviving the Loss of a Child182App. AThe ABCs of Genetics189App. BTables193App. CChores Chart for Children201App. DResource Directories203Glossary257Suggested Readings263Index267
\ Jane S. Van IngenAn 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\ \ \ \ \ BooknewsThompson (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)\ \
