Product Description

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.

Product Details

• Amazon Sales Rank: #1140772 in Books
• Published on: 1999-09-09
• Original language: English
• Number of items: 1
• Binding: Hardcover
• 288 pages

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.

Review
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. -- Jane S. Van Ingen, WE, October 1999

Review

"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

Customer Reviews

A must-have book for the affected family, w/minor flaws
Raising a Child discusses all the forms of muscular dystrophy, so JDMS only gets scant treatment. Even so, most of the book is useful and practical. The introduction suggests it not be read cover-to-cover, but used as a chapter-by-chapter reference to find advice on the specific topics covered. Each chapter does stand alone in this way, but parents with a newly-diagnosed JDMS child may want to read the first six chapters right away.

The book begins with a description of common reactions to an initial diagnosis: shock, numbness, denial, anger and grief. There are good suggestions for handling these stages, including dealing with stress and having creative and enjoyable outlets for parents and children. Another very useful chapter follows: the author thoroughly discusses getting a correct diagnosis and finding a primary doctor who is both caring and knowledgeable. The author warns us against doctors who are arrogant or controlling or who don't take enough time to diagnose a rare condition. In this case, a second opinion is called for. And in many cases, a specialist may be the best doctor for your child, an option that should be discussed and also should be covered by your insurance.

Choosing and communicating with your medical team is crucial, and there are common-sense suggestions such as keeping a notebook, using a tape recorder, and keeping a record of tests. One critical characteristic of good medical professionals is they seek out and respect the observations of parents and children. Parents can also help foster good communication, and there are good suggestions in this area: being on time for appointments, using good phone manners, and giving an occasional thank-you note or small gift.

You'll find some good information on dealing with insurance companies in one chapter, including keeping a meticulous paper trail of medical information and insurance documents and finding help, if needed, in handling insurance problems.

The author presents some very wise advice on maintaining a perspective wider than the disease; both by remembering your child's other mental and physical health needs and by considering the recreational and emotional needs of all family members who are affected, including the parents. One contribution to your child's sense of well-being and independence comes form his ability to do things for himself, so every step you can make in that direction is very important. Detailed discussions of hygiene, assistive devices, travel and safety considerations make this part of the book very practical.

The author includes tips on coping with the emotional ups and downs of your child. Often, children can only express themselves by bad behavior. The best way to deal with children's anger and fear is to pay attention to non-verbal as well as verbal cues and let them know you understand. In some cases, outside help may be a good idea. Other strategies for parents are realistic goal-setting, focusing on what the child can do, and letting him take as much control as possible. Along the same lines, children must be treated as normally as possible, and this includes discipline. There are practical suggestions for mealtime discipline, chores and acknowledging triumphs.

One important chapter for school-age children with muscle problems talks about helping parents and children cope with the delicate balance between having their needs met and being as normal as possible. In this case, parents often have to be a strong advocate for their child, sometimes meeting reluctance on the part of the school. At times, it takes a great deal of attention and monitoring. The whole issue of over-all advocacy for your child is also discussed, with pointers to help, including building a support system and using professional advocates when necessary.

Other chapters deal with keeping a healthy outlook, living in the present, and dealing with the possible death of your child. A glossary includes a discussion of genetics, disease information and possible chores for children.

There are several notable omissions, in this reviewer's opinion. Faith is only mentioned as an afterthought, while most parents find it an important part of coping with a childhood disease. The author's specific knowledge of JDMS is not impressive. Most troubling, though, is the lack of any mention of the Internet as a possible source of information, advocacy and support. Not one e-mail address or link, or support site is listed. For a book published just a few months ago, this is an egregious failing.

This book save my son's life
Dr. Thompson was right. The entire body is a muscle. I followed her words and got a base line exam from every profession. Since my son looks good I was told not to worry. Although, many were surprised that he could walk. I kept asking what about his heart, lungs, gi and eyes. I was told not to worry.

I made the appointments with the cardiologist, geneticist, gi, pulmonary, optical. It was no surprise, my son had a hole in his heart, was aspirating, has mild cortical visual impairment. My family (father and uncle's) are misdiagnosed with Charcot-Marie-Tooth Disease (CMT) and we have Myotonic Muscular Dystrophy.

Just as Dr. Thompson states, "Don't let any doctor tell you that a specific problem is just a sympton of the disease/condition. Get a proper opinion from a professional in that area."