Vascular Birthmarks Foundation Forum - View Single Post - Age 6-Tears about appearance
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Old 01-20-2008, 07:44 PM
ewilliams ewilliams is offline
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Join Date: Nov 2003
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Unhappy Age 6-Tears about appearance

My daughter McKenna is now 6. She was diagnosed with infantile hemangiomatosis. We went thru Resp distress with a subglottic hemangioma, Bleeding from one in her stomach or intestines, we never did find it. And many months of high dose steroids, which controlled her extensive facial and eye lid hemangiomas, but left her tiny for so long(16lbs at 18 months old). We even had fully tracheoplasty to remove it from her airway after CO2 laser failed to control its growth. McKenna was blessed to come out of this a happy normal 6 year old. But I have recently been faced with a new set of issues. The hemangioma that covered nearly half of her scalp on the right side has receded, but her hair grows very thin and very slowly where the flat vessles remain, and she has a scar on her upper lip where her hemangioma ulcerated when she was little. She is occasionally upset about her appearance, and wants to know why she can't have pretty braids or other hairstyles that her classmates have. And some of the kids have been asking about her lip and teasing her. Any insight, any medical interventions, any ideas where to go from here?
i understand that these are strictly cosmetic issues, and that i should just be thankful that she is ALIVE, but I don't know how to explain that to her.

Last edited by ewilliams : 01-20-2008 at 07:45 PM. Reason: typo
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