Still battling H at age 2 - Vascular Birthmarks Foundation Forum
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Old 10-20-2012, 05:04 AM
AMR32 AMR32 is offline
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Join Date: Oct 2012
Posts: 5
Default Still battling H at age 2

Hi,

I'm Abbie. I'm new here. My daughter is now 26 months old and was born with a diaper area H that grew into her vagina and rectum. It began ulcerating in the first month. We started Propranalol at 4 months, after being told ridiculous things by other docs and finding an awesome pedi derm at Children's in Chicago. She got great results. The ulcerations healed, it flattened and lightened, and it even shrunk in size. She weaned at a year, and it ulcerated six weeks after stopping the meds. She's been on and off Propranalol four times in the last year. We treat ulcerations with Metrogel and Regranex, too. The most recent occurrence was a week ago, after being off Propanalol for 14 weeks. It ulcerated, but the scarier part is that is growing again. It's an angry red and getting puffer. Her derm prescribed Timolol, which hasn't had much of an affect yet, but its only been a few days. If it doesn't help in the next week, she has to go back on Propranalol. Her psi said that there is new research coming out about how the beta blockers are biologically altering the Hs and thir life cycles. Basically, that the medicine is, somehow, keeping the H from naturally involuting and starting to fade at a year. Although it is concerning, we had no choice but to treat. Her ulcerations were infected by her bowel movements, and she was being prescribed narcotics for severe pain. My questions are:

1) How long does Timolol take to see results?
2) Is anyone else still battling a H at age 2?
3) has anyone experienced a H regrowing like this?

Thanks so much. I wish I would've found this forum 2 years ago.
-Abbie
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