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

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9780195128437: 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 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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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.

From Library Journal:

Director of the Center for Handicapped Children (San Francisco) and author of Raising a Handicapped Child: A Helpful Guide for Parents, Thompson is also a renowned researcher and practitioner in the treatment of neuromuscular disorders. Her practical guide suggests ways parents can be strong advocates for their children, providing them with the basic medical background information necessary to select a qualified physician and to ask informed questions. For instance, Thompson discusses various diagnostic tests and enumerates cases in which they are appropriate. In addition to a chapter with descriptions and treatments of various neuromuscular disorders, there is a brief overview on genetics, a table summarizing the characteristics of various neuromuscular diseases, and a glossary of medical terms. 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. Throughout, she cites the personal experiences and advice of her patients' parents. Although she is writing primarily for a lay audience, health professionals should still be able to glean valuable tips from Thompson's account. Highly recommended for all consumer health collections.AXimena Chrisagis, Wright State Univ Libs., Dayton
Copyright 1999 Reed Business Information, Inc.

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