cold feet/possible CMTC?

[lizzyh]

My daughter has a flat, purple, hemangioma on her buttcheek. It was cavernous, ulcerated for about 3 months. She also has very cold feet since she was born. My mom says when she was born she was bluer than most babies and she watched the oxygen come over her. She had RSV at the beginning of the ulceration. I'm wondering how CMTC is usually diagnosed. Also, when is an internal scan for deeper hemangiomas indicated? I was thinking if there are 3 or more H's on skin. She only has the one on her bottom. I know the cold feet is related to the H and that she might have circulation issues. Thanks for any help!!

[abatie]

lizzyh,
My daughter has CMTC. She was diagnosed positively at 6 months of age but it had been suggested since her birth. She was diagnosed by a pediatric dermatologist who saw her. She did not have any special tests run since based on her history and the very clear appearance of the CMTC on her leg. She has had times when her legs and feet have been cold. Her normal body temperature runs much lower than a normal person but this is also getting much better. I do usually dress her warmer than my other children to help her maintain her body temp. She is much more active now that the temperature is getting warmer and eats much better. If you would like to discuss this further I am more than willing.

[lizzyh]

Thank you for the response! How is she doing now? I think I'm going to set up an appointment with the pediatric dermatologist at Denver Children's Hospital who lasered her ulcer. It probably won't be until July. I need to just rejoice that her ulcer is healed, but I don't want to miss anything. I also forget to mention that her normal body temp is low.

[abatie]

Becca is doing better than we expected in January when she was diagnosed. She has three atrial septal defects (holes in the heart) which will need to be repaired by the time she is five (she is 10 1/2 months old). She also has limb length discrepency. When she first went to Mayo there was concern that she may not crawl or walk. She is crawling like crazy and is starting to stand along furniture and even letting go. She may have some vision issues (tests were not accurate in January). Her biggest issue at this point is probably her hearing which we have yet to get the needed answers on. She is hearing better now that the temperature is warming up so I am more sure than ever that it is related to CMTC.

I guess my advice for someone who may be facing a CMTC diagnosis is to relax, don't get overwhelmed in the diagnosis because it will really be okay, and find a doctor that you are confident in. That made a huge difference when we finally found a doctor with a diagnosis and the answers for us to what was going on with Becca (Dr. Davis ROCKS!!!). The worst part about facing CMTC is trying to find someone in the same situation. It is just too rare and nobody has ever heard of CMTC so people think it is something you have made up. I feel like I am always educating all of Becca's doctors because even at Mayo the only doctor that we have seen that knows about CMTC is her pediatric dermatologist.

If there is anything else I can do just post! I am willing to help in anyway I can (although I am still learning too!).