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Raising a Child with a Neuromuscular Disorder - A Guide for Parents, Grandparents, Friends, and Professionals (Hardcover) Loot Price: R3,284
Discovery Miles 32 840
Raising a Child with a Neuromuscular Disorder - A Guide for Parents, Grandparents, Friends, and Professionals (Hardcover):...

Raising a Child with a Neuromuscular Disorder - A Guide for Parents, Grandparents, Friends, and Professionals (Hardcover)

Charlotte E. Thompson

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Loot Price R3,284 Discovery Miles 32 840 | Repayment Terms: R308 pm x 12*

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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.

General

Imprint: Oxford UniversityPress
Country of origin: United States
Release date: 2000
First published: September 1999
Authors: Charlotte E. Thompson (Director of the Center for Handicapped Children and Teenagers)
Dimensions: 240 x 161 x 27mm (L x W x T)
Format: Hardcover
Pages: 288
ISBN-13: 978-0-19-512843-7
Categories: Books > Medicine > Clinical & internal medicine > Neurology & clinical neurophysiology
Books > Medicine > Clinical & internal medicine > Diseases & disorders > General
Books > Medicine > Clinical & internal medicine > Paediatric medicine > General
Books > Health, Home & Family > Family & health > Popular medicine > General
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LSN: 0-19-512843-5
Barcode: 9780195128437

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