I am a parent of a 3 month old that was diagnosed with CMTC. It was suspected at birth but we were told that at that point they couldn't diagnosis her for sure. I am wondering if there are other people that can tell me what to expect, what doctors we should be in contact with, etc. Many doctors saw her at birth and nobody knew what was going on with her. On a fluck a nurse suggested calling the dermatologist who was the person who actually diagnosed CMTC. My biggest concern at this point is keeping my daughter's body temperature at a normal level. She is not able to regulate temperature at all and even dressing in multiple layers she still struggles. The doctor has suggested that she sleep on a heating pad and has a small portable heater in her bedroom. This has helped dramatically. She is now able to sleep through the night for the first time ever and has now doubled the amount of formula she is taking at a feeding. Does anybody have any suggestions on other things that I can try?
Last edited by abatie : 10-21-2009 at 02:14 AM.