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Old 11-17-2009, 03:11 AM
EliKyle EliKyle is offline
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Join Date: Nov 2009
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I'd never heard of CTMC until I stumbled across these postings tonight, but I have a 3-month old boy who has some of the traits described here...at birth - had mottled/marble looking skin, very cold hands/feet that could not get warm despite multiple layers, etc. Most recently, we had a dermatologist evaluate a cluster of broken blood vessels on his cheek, which were diagnosed as a cavernous hemangioma. [The suggestion was to let nature take it's course since it may involute/shrink, but as his Mom, it's difficult to sit back and just watch it grow in the proliferation stage (he has several telangiectatica starting to spread across his cheek ).]

I had a totally normal/healthy pregnancy, but interestingly, I had a vascular issue myself - onset of varicose veins mostly in my right leg. Not sure if there's any connection...

Some other history on my son:
- had a small head at birth (still does have very small head)
- is very strong with his neck/legs
- growth seems to be stunted over the last 2 months...although he was large at birth (8 lbs 10oz), has only put on 1 pound in the last 2 months and seems to be stuck at 12 pounds.
- in addition to hemangioma on L cheek, has a very visible vein on his L eyelid that seems to be getting darker and other visible veins by his forehead/hairline.
- had minor breastfeeding issues since birth - a lazy latch (to this day finds it difficult to finish nursing without excessive gas bubbles)

Again, I've never even heard of CMTC until this evening, but I am wondering what course we should take (if any) if this sounds indicative of any of the cases you've seen. For now, we have an appt with his pediatrician this week, plus a specialist (pediatric dermatologist) to evaluate the enlarging hemangioma-like growth, but I'm not sure if we should be searching further for possible CMTC as well. Thanks!
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