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. Pediatrician
Thompson is a powerful advocate. As Director of the Center for
Handicapped Children in San Francisco, she is used to dealing
effectively with all the wide-ranging physical, emotional, social,
educational, and legal issues that can arise. Her most encouraging
words are for parents devastated by the first diagnosis. Let "fear
become a motivating force rather than a paralyzing one," she
counsels, and recognize how much courage it will take to find
effective care for your child. She lists the real measures that
will help: always securing accurate, up-to-date information,
joining support groups, making time to be alone and to pursue other
interests, remembering that all family members will need extra
care. Because she recognizes that finding top-quality medical care
is usually a struggle, she offers, for each of a number of
diagnoses, a clear definition, such information as is available on
incidence, genetic factors, relevant laboratory findings, usual age
of onset, initial signs (muscle weakness is paramount for most of
these disorders), later signs, potentially life-threatenting
problems (e.g., recurrent lung infections), overall life
expectancy, and the most effective treatments. Parents will have to
be persistent, she warns: "If you have any doubt at all [whether]
your child has had a thorough, complete, neuromuscular
consultation," then another opinion is crucial, no matter how
difficult it is to obtain. Thompson concludes by discussing such
related concerns as developing the child's coping skills (from
fitting in at school to facing increasing disability and, in some
cases, death), finding the best school programs (legal help may be
necessary), and surviving the loss of a child. First-rate help for
a devastating problem. (Kirkus Reviews)
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, Charchot-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.
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