Hi, my son was diagnosed last week with CMT. It is recessive and we are still trying to work out the specific gene and type. However, Nerve tests show it is an axonal issue. He was fitted for leg braces yesterday. His foot is deformed, calves are tight. He can't walk very well, runs slower than his 2 year old sister and jumping is almost impossible. He still manages to do the things that most kids do, however, he is already realising that he can't keep up with them. He doesn't experience any pain, and the fatigue has gone since I have been giving him liquid vitamin B complex (20 mls = 350mcg).
I can't believe there is no treatment or cure. It is devestating. I want to explore every possible treatment. I would appreciate if people could tell me their experience with all different alternatives like vitamin c, peptides, turmeric, vitamin E, l-gluatmine, herbs etc… even stem cells. I would appreciate any information.
As I understand it everyone with CMT has different symptoms, different rates of progression, different reactions to supplements etc. Unfortunately it isn't one size fits all. Also, in your case because your son is only three, I would get professional advice before giving him anything (even supplements) one never knows the effect it may have on him and could do more harm than good. I find it amazing that in 2014 we haven't got the help or knowledge required to treat any of us. I went to the doctors today and had to explain to a different doctor to my usual one what CMT was! If one in 2,500 of us has it why don't more people know about it? Including GPs
And the bad part is you will learn more on here that from your doc. They know very little. Stay informed. God has placed you there to be an advocate for this baby. He needs you.
Thanks. I feel so lost with such little information. I will certainly be raising awareness and helping to find a treatment. Watch this space!!!
I wish you every success with this. We certainly need to get this horrible illness out in the open. If only each of us can tell 10 people and they can tell 10 people etc.. etc....... it wouldn't be too long before everyone could hear about it.
Mom, I would also suggest you visit this website: http://www.cmtausa.org/
I agree with PCM that any supplement or alternative treatment should be approved by your child's doc. I also want to reassure you that your child's experience will be different from those in previous generations. There will be advances, stem cell treatments, and what have you that will improve treatment options for your little one. Research everything, but go forward with caution. It's best not to be the first to jump on the bandwagon as far as new experimental treatments, as they can have unintended and possibly detrimental consequences. Also, be very skeptical of "too good to be true" treatments. There are many on the internet who would happily turn your desire to help your child into their own financial gain. I wish you and your child the best, and will be most happy to learn from anything your discover in your research. Moms can do amazing things in raising awareness,
Thanks everyone. I will take caution and investigate thoroughly. I will keep everyone informed of any progress or information. Btw, last Monday my boy got fitted for leg splints as he has foot drop. Does anyone know if splints cause atrophy in the calf, due to the calf not working as much?
That's a good question, Mom. If you don't get responses, you may want to open up a separate discussion about splints and their effect on muscles.