My daughter was born july 12, 2011, she is my first baby so i have never been thro this before. She was born with it on her nose at first it was a little pink spot but a few days after she was born it started turn dark red and growing like crazy. now she is 4 months old and it is the size of a golf ball, it blocks her nostrils and she has a hard time eating and sleeping because she struggles to breath. It has started to split and bleed like crazy no matter how hard we try to stop it. I had to fight to get her to see a specialist and they put her on propranonal and steroids. the steroids seem to shrink it a bit but the said they could only keep her on it for a week cause she was so small and would cause her issues. She has been on the propranonal for about a month and there has been no change at all they wont operate or do laser they just keep saying to wait for it to start working. I am frustrated and dont know where to go from her i am tired of seeing my baby in pain and i fight and fight for someone to help her and all they say is i have to wait..
i just want to know where do i go from here and how lond did it take for this medicine to start working. please help!!
An international charitable
organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment,
provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and supports research and programs that promote acceptance
for individuals with birthmarks.
Here you will find information and resources for patients and families affected by hemangioma, port wine stain,
arteriovenous malformation, capillary malformation, lymphatic malformation, Sturge Weber syndrome, Klippel-Trenaunay syndrome, and any other type of vascular birthmark
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