Still battling H at age 2 - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Help and Resources for Hemangiomas

Reply
 
Thread Tools Display Modes
  #1  
Old 10-20-2012, 06:04 AM
AMR32 AMR32 is offline
Junior Member
 
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
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump