Charcot Marie Tooth Disease

[Zacksmom]

Hi, I just found out that my 9 year old son has CMT. Not sure what type yet. I was just wondering if anyone with CMT has had good progress with physical therapy. He has improved his coordination but still is getting weaker just over the past couple months. He has been in physical therapy for 2 months. I am starting to wonder if it is hurting him by working his muscles too much. Can anyone share their experiences rather good or bad. I am having mixed emotions about his diagnosis. For 4 years we have been told by doctors that they cant tell us what it is but something is wrong, and now we have a genetic test to show it. I am happy to have an answer but know that it has name, it is scary.

[bimmjim]

Hi, I just wrote a hugh essay about my life story to you but it seems to have been lost in cyberspace.
Here is the gist. Get your son to try yoga and physical therapy.
I have refused to take all the drugs that have been offered to my many doctors.
I'm 58. I have CMT and I can still walk a little.

[Zacksmom]

Thanks. I agree with not taking the drugs. His dr just prescibed a medicine that is a moderate risk to him with CMT. Medicine makes me nervous with him. He was put on stimulant after stimulant since he was little and that is when we noticed the tremors and when his CMT came out. After his diagnosis of Aspergers (high function autism) and Tourette's, ADHD was the least of our worries. And now this. Medicine scares me and I will avoid it as much as I can.
We just joined the YMCA so I will check into yoga and at the least I can watch a class and do it at home. He has been swimming as much as we possibibly can. And doing physical therapy at home. Its hard because he is so tired all the time. I am having problems with my legs and wrist, have been for years but I am afraid to get tested. I am just chalking it up to my weight at this point, so maybe it will do me good to do yoga with him.
Thanks for your response. :-)

[snowman88s]

Hi, Mom!

I am 26 years old, and have had CMT since I was 5. To answer your question, physical therapy is a good idea, though if your son is experiencing some muscle weakness, it might be a good idea to tone down the amount of therapy he does per session so that he does not have too much discomfort.

Keeping him moving with things like (modified) Pilates helps also. I have had great luck with Pilates and only wished I would have started it at a younger age.

I also want to tell you that it is completely understandable to be afraid or worried when a loved one is first diagnosed with a disease like CMT. I am however living proof that this disease though not curable is very manageable and a person can live a very normal, enjoyable life despite the disease. Some people develop weakness in their joints (and some pain as well) as I have. However, this again, is very manageable and I still get around very well even with the pain I have at times.

I cannot stress enough how important is is to keep your son moving. I played baseball and basketball when I was his age and that was invaluable to my physical health later on. I'd be more than happy to answer any further questions you might have. Just know you are not alone, and we are all here to help with any questions or issues that come up!

Take care,
Charlie

[EZgoing]

Zacks Mom, from my understanding, it is important that we keep what good muscle we still have toned up as best we can. It is also best to understand that the muscle that is already affected by CMT, can not be 'worked' or improved.

Before we knew and understood what we had, I can not begin to tell you how many 'doctors' or 'therapists told my mom that they would have her walking again in 6 months.

At this point in research, once the motor nerves that go to a particular muscle has died off, that's it... the muscle is destined to atrophy (die) also..

Having your son do work out sessions are a good idea, but be sure that they/he doesn't over do it. Most of these 'trainers' do not understand that when you do a hard workout, you are tearing down good muscle, and those of us with CMT do NOT rebuild that good muscle like a 'normal' person does.. so the process HAS to be well designed, monitored and SLOW...

If your son come away from a session feeling weak and shaky, they are pushing him too hard.

There was a study done on the subject by some Dr. P? (can't remember his name right now.. sorry) in Italy a few years ago. If I can find a copy or link of it, I'll post it at this group. I have heard that a new study is being done on the subject, but have not seen the results yet.

Hope this helps some.

Ez