Guest guest Posted November 9, 2007 Report Share Posted November 9, 2007 , On one hand, an early diagnosis is a good thing. I too am a 'toewalker', always have been. I was diagnosed at age 10. I'm 55 now, the progression, if any, is barely noticeable. I have never had AFOs, but I do have orthotics/arch supports in my shoes which cushion my feet. I'm very active. CMT is the most common inherited neuromuscular syndrome...A note on that inheritance, most CMT is dominant - parent to child, but mine, so I recently found out is recessive - somewhere WAY back, but neither parent had it, both were 'carriers'. There's about 30 types of it now, the most common, CMT 1A affects about 70-75% of persons. It is not fatal, it does not affect intelligence. Muscles can weaken/atrophy - this is why my first doc had me walking in sand, swimming, biking and horsebackriding. Plus Physical Therapy, several courses of it.To this day I still do it all, and I do not have the atrophy in my legs. Do you know the 'type' of CMT your son has? If it is 1A, there are trials going on all over the world using Vitamin C as a treatment. There is a very special Australian trial for young children too. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2007 Report Share Posted November 9, 2007 My son has walked on his toes since he was three. He is 12yrs old now & he still wears AFOs and without them he still walks on his toes. He has half the muscle strength of regular boys his age so he always comes in last place in a race or sports or gym class but other then that he is just a normal kid. Even though he is slower then the other kids he still plays on team sports. He loves video games because that makes him an equal with his peers. He also loves go cart racing for the same reason. He also goes to Muscular Dystrophy Association Camp each year to meet other kids that are just like him. He loves that. Contact your local MDA and they can give you all kinds of info on CMT and kids with CMT and they will help pay for AFOs and doctors apmts & stuff too. God bless! Winndy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2007 Report Share Posted November 9, 2007 Hi , Each case is different. I wore orthopedic shoes for 7 years while growing up, that solved my gate problems until my 40's. I know others who weren't so lucky. No one can say for sure how your son's case will progress.Optimistically he'll continue to gain strength and his gate problems will work themselves out. My toe walking went away once my muscles strengthened, of course back then kids were much less couch potatoes than they are now. For some types of CMT I think think the best strategy is to get as strong as you can as young as you can, then avoid nerve killing scenarios to the greatest extent that you can. Sometime between 30 and 45 a biological switch flicks and by default you are in the best shape of the rest of your life, and the rest of your battles are waged with not losing ability rather then gaining ability. At three your son has over 30 years of getting better, if he works at it. Ed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2007 Report Share Posted November 9, 2007 Hi , My son was diagnosed almost a year ago when he was 17. From what I am learning, CMT affects everyone differently, even those in the same family, but here is what was going on with my son. He was a toe walker, always had trouble in sports - especially those that required running. He was always spraining his ankles, tripping, etc. As he got older his one foot started to look different - just happened to be the ankle he was always spraining. Anyway, the older he got the more it was obvious that something was wrong with his foot. His arch very high and he walked on the outside of his foot and wasn't able to put his foot flat. We went to several doctors over the years and it wasn't until one orthopedic doc mentioned CMT and referred us to a neurologist who was pretty sure it was CMT by the looks of his foot, he did some testing in the office and those results were also a sign that he had CMT then had my son had genetic testing through Athena Diagnostics and it was confirmed that he did have CMT. In May of this year he had reconstructive surgery to correct his foot. What I have learned is that it is important to find doctors that understand and treat CMT - that can be rather frustrating and difficult. I have also learned that proper diet, exercise and sleep are very important. When my son was diagnosed with CMT that was the first time we ever heard of it and I went on line and was reading all this stuff and freaking myself out. I found this group and it has been a Godsend. This group has helped us enormously and you will be able to have just about any question answered and the people in this group are very supportive and caring. Hope this helped. Carmella Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2007 Report Share Posted November 9, 2007 Hi : CMT is progressive...but unique to each individual. My son was a toe walker since he started walking. At age 4 1/2 he had heel cord extension surgery to help, followed by casting on his calves and feet for about 8 weeks (if memory serves correctly - it may have been longer). The surgery and casting helped correct his walk to almost " perfect " and it lasted for about a year and a half. As he grew older, he started to pull up on his toes again when he walked. From what I understand it is not uncommon for this to happen throughout the life of a CMT patient. But, because CMT affects everyone so uniquely, there is no way to know how your son will do. Your neurologist in conjunction with your orthopedist should be able to guide you down the appropriate path. If not, contact MDA. They are amazing! Please continue to post, or email me directly if you have questions...I am always happy to share our experiences and what we have learned with our son. (He's 14 now) You are in my prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2007 Report Share Posted November 9, 2007 hi michelle, my name is roxanne and im 44 yrs old ,my son is 9,i found out when my son was 2-3 yrs old and i near died with the news as i suffer badly with it,my son walks different than other kids but i think it depends on the child how this CMTprogresses,it's never the same twicei dont think. my brother had it so severe i lost him at the age of 42,just keep exercising those little feet and legs and hope for the best,good luck,write me anytime if you'd like,do you or your husband have cmt or who has it in your family? Roxanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2007 Report Share Posted November 9, 2007 Hello Ed thank you for your email, that helped alot, thank you again Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2007 Report Share Posted November 9, 2007 Winndy, thank you that info, i will contact the mda, the camp right now he goes to scottish rite hospital and they pay for eveything Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2007 Report Share Posted November 9, 2007 Gretchen Hi, i am not to sure what type he has, we will find that out in about a month the drs really didnt tell us much about it they just gave me pamplets to read and i still didn't understand it but i have been writing questions down to ask, thank you for your message Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2007 Report Share Posted November 10, 2007 , My son has walked on his toes since he was three. He is 12 yrs old now & he still wears AFOs and without them he still walks on his toes. He has half the muscle strength of regular boys his age so he always comes in last place in a race or sports or gym class but other then that he is just a normal kid. Even though he is slower than the other kids he still plays on team sports. He loves video games because that makes him an equal with his peers. He also loves go cart racing for the same reason. He also goes to Muscular Dystrophy Association Camp each year to meet other kids that are just like him. He loves that. Contact your local MDA and they can give you all kinds of info on CMT and kids with CMT and they will help pay for AFO's and doctors apmts & stuff too. God bless! Winndy Quote Link to comment Share on other sites More sharing options...
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