My baby, Grayson, was born 9 days ago with a large "birth mark" on his left leg. We've seen 4 different pediatricians none of whom had any idea of what to think. We were told it is definitely vascular and one said it may be a hemangioma one said definitely not... you get the idea.
I'm 100% sure it's CMTC. Reading the descriptions and looking at pictures it's classic. Marble appearance, there all the time, has areas where the skin is tight, gets darker when cries or is cold. On his calf by his knee the area is also indented compared to the other leg. It also extends from his sacrum on that side, although on his bottom it's lighter.
My question is what kind of specialists should I be seeing? We are being referred to a pediatric dermatologist but don't know when we will actually get in to see them since there is only one in the area and I'm still waiting on a referral. We live in the Orlando area so there is no shortage of peds specialists for us to see. I want to make sure we get the right treatment and since this seems to be a rare disease I'm counting on having to dig for information. I'm going to attempt to upload some pictures. Any advise is appreciated!