In this special article on parenting children who are disabled, we talk to Dr. Charlotte E. Thompson, a graduate of Stanford University School of Medicine and a Fellow of the American Academy of Pediatrics. Dr. Thompson received advanced training in the diagnosis of neuromuscular diseases from the University of London and the University of Southern California. She is an assistant Clinical Professor at the University of California at San Diego School of Medicine, as well as the Director of the Center for Handicapped Children and Teenagers in San Francisco, California. She is the author of Raising a Handicapped Child: A Helpful Guide for Parents of the Physically Disabled, newly revised and expanded this year, and Raising a Child with a Neuromuscular Disorder published by Oxford University Press (1999.)
CMTI:
Dr. Thompson, thank you for doing this interview. I'd like to ask you a
few questions about raising a child with a neuromuscular disorder. In particular,
Charcot-Marie-Tooth disease. The book, Raising a Child with a Neuromuscular
Disorder touches only lightly on Charcot-Marie-Tooth disease. I'm thinking
that you intend your books to be a primary general guide for parents to
help them dig deeper for more information on the topic. Am I correct? Dr. T.:Yes.
CMTI: The book, Raising a Handicapped Child, gets into the nitty gritty of the concerns overall. If a parent already has a diagnosis of CMT for their child, which book would you suggest would be the most help?
Dr. T.: In many ways both. I just had a call from a father in Canada very excited that he could talk to me. His child has CMT and he had read the Raising a Handicapped Child book and hadn't known about the other one. They are in many libraries and they can also be bought on line. (Linda here: We'll put the ISBN locator numbers and any other information we have on the books after this interview.)
CMTI: Are you an advocate of DNA testing for a young child? We can test for several types of CMT now. What advantages do you see in knowing as early as possible that your child has CMT ?
Dr. T.: That's a very individual decision. Some parents who know the disorder may have a sense that their child has CMT. Some don't want to know until very much later. It is totally up to each parent. If you have just one child and the disease is picked up early, then you can make a decision as to whether you want to have more children. A next child could be fine or be more severely affected.
CMTI: In your book you stress the value of muscle biopsies to reach a diagnosis. How important is it to do a muscle biopsy when most of our CMT children have parents with the same disease?
Dr. T.: This is one disorder in which a muscle biopsy is probably not needed when there is a strong family history. If there isn't, sometimes you need to get one. A muscle biopsy should always be done under a local anesthetic because of the risk of malignant hyperthermia which is caused by specific anesthetic agents and causes markedly increased temperature, tightening of the jaw and other very serious reactions. There is such poor knowledge of neuromuscular diseases that even if general anesthetics don't cause this as a rule in people with CMT, we are still on our guard. Halothane is one of the anesthetics we avoid for CMT and succinylcholine. People with CMT might want to carry something in their wallets saying that doctors should be wary of general anesthetics if they need surgery or wear a Medic-Alert bracelet.
CMTI: What is the most important thing you would tell parents who have CMT when they find out they also have a child or children with CMT?
Dr. T.: Try and put as little emphasis as possible on the disorder and just go on with life.
CMTI: Do you ever counsel parents who have a neuromuscular disorder to have an abortion, rather than the child?
Dr. T.: That's a very individual thing and each couple has to decide that in relation to their religious beliefs and everything else. I don't think a physician has a right to say this is what should be done. You just give people choices.
CMTI: Do you feel it is important that the parents know if the child has CMT? I ask this because some parents with CMT can't wait to have their infant tested. What do you think?
Dr. T.: Some parents don't want to know, but once again, if they plan to have other children, it would help to know. And, if they themselves have a serious disorder, some parents can't handle their own children because of the tremendous weakness of their hands, and you never know what the severity of the disorder in a child will be, so you can't count on them having a mild disorder if you yourself have a mild disorder.
CMTI: How important do you think it is that a child knows he or she has a neuromuscular disorder? When should a child be told?
Dr. T.: Kids are very smart. They know there is something wrong from an early age. I suggest to parents that they simply answer the child's questions honestly. Kids are wonderful and they will accept anything if you tell them in a gentle, loving way.
CMTI: There are many types of CMT. Many doctors do not know the disease and are not familiar with the various types. Often our parents are told their children do not fit their profile for CMT. What they know about CMT can be 20 years old. What would you say to parents whose doctors have told them their children will grow out of whatever it is? Often these people have found us on the Internet and have pretty well diagnosed their child themselves.
Dr. T.: I find that parents these days have to research neuromuscular disorders themselves because the lack of knowledge about these among physicians in the United States is appalling. The doctors in Europe are five to 10 years ahead of us. In Canada I believe you are limited by funding. Even in the U.S.A. the people in some big universities aren't sending out tissues or blood to specific labs if, for instance, the patient is on welfare and if it is going to cost the university money.
CMTI: Day care is a part of life in most families. The parents aren't there as the child grows and develops. Is there anything a parent who has to put their CMT child in day care can do to make the transition easier on themselves and easier on the teachers and child?
Dr.T.: Parents need to talk to the teacher and make him or her familiar with the disorder. What I find is that when a child has a disability such as CMT, and something happens to a child, it is thought immediately to be due to CMT. This could be bed wetting or an ear infection or something else. Instead, the child may need a urologist or other specialist, it isn't all CMT... they are kids and kids get sick.
CMTI: When the child is ready for school, how would you suggest the parents approach the school to prepare them for the child's needs?
Dr.T. : They need to make the principal and teachers aware of the problem. Otherwise the child may be laughed at, may have problems with fun activities and be forced to sit by the sideline. Activities should be worked out so he or she can do fun things with friends. Forcing a child to sit by the sidelines is illegal in the U.S.A. We have an attorney for special education in our centre and she actually helps fight battles with schools.
CMTI: I've been approached often by parents trying to cope with the child's inability to do even reasonably well in Phys Ed classes. It can be a heartbreaker for both the child and the parents. What would you suggest?
Dr. T. : They should have an adaptive physical education program worked out. There are lots of fun things that kids can do. I worked with the San Diego school system many years ago to help kids find things that would be fun and give them some exercise.
CMTI: Children with CMT often have problems with their ability to learn to write. Their wrists and fingers tire very quickly and they simply cannot form the letters, so they fall behind. Any advice?
Dr.T.: Every school child should have a computer accessible to them at an early age, particularly if they have CMT, and it can be adapted to their needs. In the U.S. we have adaptive technology centres all over the country. If parents need help they might contact Tom Morales at the Alliance for Technology Access, 2175 E. Francisco Blvd., Suite L, San Rafael, CA 94901 U.S.A. or call (415)455-4575 (was relevant 7/9/01) for the address of the centre nearest you as the alliance has 42 computer resource centres throughout the U.S.A. They work with children and adults on a fee-for-service basis but no one is ever turned away.
CMTI: People living in rural areas often do not have a doctor who knows CMT available, and that's an understatement, therefore there is no one who can really diagnose the child and there is no way to keep track of the child's progression. In your book you stress regular visits to chart the child's growth and health. What would you suggest a parent of a child or children do to keep an eye on their children with CMT from birth to say age 18, if there isn't a doctor around who knows anything about CMT?
Dr. T.: I think that the main thing parents need to do is to find an orthopedic surgeon who is willing to make inquiries about CMT if he doesn't know anything about it. The feet are so very important that an orthopedist needs to watch the feet and the child's back because scoliosis or curvature of the spine can be a very big problem. Parents can be flown at no charge (if there is a financial problem) by American Airlines to a centre where there is knowledge. They will need a letter from their doctor.
CMTI: How important do you feel it is for a child with a disability to excel at something and why?
Dr. T.: It's not only important for a child with a disability but every child. Each one needs something special, like art, swimming, poetry, computers, that they can do well. Parents need to find every child's special interest and encourage it. Good self-esteem is going to help your child be an independent, happy adult. You also need to give him or her appropriate discipline, chores and love and treat the child with CMT just like the other kids. This is so important. Loving discipline is particularly important for kids with disabilities because they learn to manipulate at an early age, particularly their parents. Boy, do they learn! Kids without discipline can turn into nasty, whiney adults.
CMTI: You stress physiotherapy for CMT in your book. We've found that physiotherapy can only help so much and then the child's condition can begin to deteriorate. Sometimes a parent thinks physiotherapy can cure a child when in fact aggressive physiotherapy is not always helpful. Could you comment on this?
Dr. T.: A good physical therapist keeps her eye on a child and can alert both parents and physicians to problems such as curvature of the spine, increasing tightness of the heel cords and an abnormal gait. He or she should work with a physician to get the best treatment for the child. It isn't just the physical therapy, it is having another professional look for problems. I don't like the word aggressive attached to physical therapy for children. Early on, running and playing and being active are important and most little ones get enough activity just playing. If a teenager is becoming a lump, sitting and doing nothing, physical therapy can help the kid get up and get moving but aggressive physical therapy is not good. Mainly, you want to be sure that contractures are not developing and that the back is okay. You need to watch the hips as well, and look for any gait disturbances, and make sure the child doesn't become a couch potato.
CMTI: How important is good nutrition for kids?
Dr. T.: Very important. I find many children are living on fast foods; no breakfast, and no family meals. Also, individuals may eat alone in front of a TV. Protein helps the muscles work and adequate vitamins and minerals are extremely important for the nervous system and for muscles to function.
CMTI: Would you suggest that every child with CMT take a multi- vitamin?
Dr. T.: Every child and adult, CMT or not, should take a multivitamin with minerals. Look on the back of the vitamins and see what is in it. Children's vitamins don't always have minerals in them so don't worry about that for kids. They need to drink enough milk. It depends on their age but a physician should go over the diet to make sure there is adequate calcium for strong bones and good nerve development.
CMTI: The teen years are really tough. Any advice for parents of teens who have CMT?
Dr. T.: Be loving, tough and consistent. Kids want limits, they want to know the rules whether they have CMT or not. Don't let the kids manipulate you. If you say no, mean no and stick to it. I have two wonderful kids and four grandchildren and I was a tough but loving parent. I was a divorced parent most of the time when I raised them. My daughter and her husband have their own company and my son is now an anesthesiologist.
CMTI: I know when I was a teen having to wear huge braces was a terrible thing for me. Now plastic AFOs are available but they are still braces and pose a real problem for teens. Any advice for the teens themselves about appearance and self-esteem?
Dr. T.: I think that if the teens are involved in deciding about the braces it will be easier. In England, they are available in colors and designs. Get the kids involved and find a good orthotist who talks to the teen and not just to the parents.
CMTI: What about a teen who just wants to be gorgeous?
Dr. T.: We all have some disability. She can be gorgeous inside. She will just have to learn to accept her disability and get on with life and focus on other things rather than her legs and braces. You can focus on something you love to do and learn to do it really well. Computers are a terrific asset for people with CMT because there are so many possible vocations if you are computer literate.
CMTI: In your opinion, how important is a good education for a person with a disorder like CMT?
Dr. T.: Very important. Good parenting is finding every child's abilities and helping develop them. You don't let any child drop out without testing and finding out what they can do. The schools can help kids find their passion, too. One good teacher can make a huge difference in a child's life.
CMTI: We've been criticized for not counseling people to abort children and to stop CMT/HNPP by simply not having children. Some parents who have CMT have been criticized for having children who have CMT. What would you say to those who criticize?
Dr. T.: I don't think anyone has the right to say what is appropriate unless there is a situation where there is an enormous family history and the disease gets worse and worse or if all the family members are unhappy people on welfare. In that situation, I can understand where there would be extreme criticism and I would share that criticism.
CMTI: Parents can feel incredible guilt when they pass down CMT to their children. Sometimes this guilt changes the entire dynamics of a family and it becomes dysfunctional. Any advice to those parents?
Dr. T.: You have to get rid of the guilt because you are going to harm a child and usually spoil him or her. As parents we always have guilt - maybe I did something to cause X, Y or Z. Get rid of it and get counseling if you need it. Counseling can be very helpful for any parent of a child with disabilities and sometimes for the kids.
CMTI: What happens if a child blames his/her parents for the CMT/HNPP they develop? What can a parent say to deflate the situation and put it in perspective so the child can get on with life and the parents maintain their parenting roles and not become victims?
Dr. T.: You need outside help at that point if a child truly is blaming you, as a parent. You need a neutral person to sit down with all of you for a few sessions. Put it out on the table and talk about it.
CMTI: What would you say to a couple who already know that one of them has CMT they can pass on who are contemplating having children?
Dr. T.: Once again it is going to be a very individual decision. If I had a very severe disability, I would not have a child, but I cannot walk in somebody else's shoes.
CMTI: What would you say to that couple if they live in a social atmosphere where a well child is of the utmost importance?
Dr. T.: Unfortunately, in many other countries a child with a disability is allowed to die or not given appropriate treatment, so in these cultures you have to think even more carefully about having a child. It can be socially unacceptable to have CMT. Ask yourself, is it fair to the child? Let's look at it from the child's standpoint. Could a parent with severe CMT cope with a child without CMT? With outside help, yes. Is it fair to a normal child to have a parent so disabled that they cannot care for their child? If both parent and child have CMT again outside help is a must.
CMTI: If the parents are disabled as well as the child, what would be your parting words of advice to them?
Dr. T.: Find some special quality moments in each day and try to find some fun and laughter each day .
CMTI: If the child is disabled but not the parents how would that advice change?
Dr. T.: It wouldn't. Be tough, loving parents and find special moments, plus look for fun and laughter
CMTI: While I realize fully that this is a huge topic we have tried to tackle here, is there anything that you feel is very important that we have not touched on in this interview that you would like to address?
Dr. T.: A father criticized me for not mentioning faith enough. I think you do have to have faith in your ability to get through each day and, if you have faith in a greater power, that can offer some wonderful support.
CMTI: What resources are you aware of that parents of children with CMT can access that can help? We are aware of several newsletters that seem quite good.
Dr. T.: I'll send some.
CMTI: The next time you write a book would you please include CMT International in your resources section?
Dr. T.: Absolutely. CMT International will be in the paperback issue.
CMTI: Our readers are going to want to ask you questions. May we call on you again for this?
Dr. T.: Yes, for sure.
CMTI: Thank you very much for this.