Sorry I haven't posted on this thread in a long time. We didn't get any answers in Dec. but we have gotten many since then at Mayo Clinic. Our daughter is going to be seen again in 6 months. In addition to the CMTC she has some vision issues and three holes in her heart. We are at Mayo again today to meet with the cardiologist about her heart and got good news - she doesn't need surgery right now. I am beinging to think my best source of information is going to be other parents. They are going through it and seeing these kids on a daily basis. Keep asking questions. Keep in touch.