My 6 year old son has CMTC.
I am new on here. My husband and I have been dealing with this for 6 years with absolutely no help with questions about CMTC. We have gone to the University of Chicago to get as much information as we could but this was in his first years, but after a few years where to you go from there, except the yearly appointments with Derm, Ortho, cardio and several others. I can not tell you how happy I am to find this. Yes, we have been to all the Doctor's but it always seems I am explaining it to them. At 6 years old there is about a three inch difference in leg length, and one leg and foot is 2 sizes larger than the other leg. I cry every time he gets his new orthotics. I'm told he can not do anything about this until about 14 years of age. At the age of 2 he went to Children's hospital in Cincinnati, where he was seen by 7 specialist. They informed me at that time that he had no heart issues. They were wrong. At 4 he had heart surgery. This was a success. He is much slower with his learning then the average child. I would love to meet some other parents that are facing these same issues and find out what if anything else I can do and just have some more support. Thank you