Vascular Birthmarks Foundation Forum

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-   Help and Resources for Hemangiomas (
-   -   Timonol (

lf 02-05-2013 01:41 PM

My 5 week old daughter had a H that was growing very fast. It is a comboined deep and surfical. At 5 weeks it was barely there, at 9 weeks it grew to almost a dime. I brought her to her pedi who said wait and see and I asked to go to as derm because I didn't like this answer. they couldn't tell me anything, how big it would get just that it would eventually stop growing and shrinking. I went and saw the derm and said the same thing. I was not happy with these answers so I went ahead and made an appointment with Boston childrens hospital at the end of December. They presecribed Timonol. The H stopped growing immediately! 7 weeks later it is slightly smaller, less red, less raised and you can see graying in the middle. It doesn't do anything for the deep, that seems to be the same also. I am so happy that I chose to this route!

smurph 02-06-2013 02:09 AM

We are fortunate that there are different options to choose from these days. Even as recent as 7 years ago, when my daughter was born the treatments were different. We also went to Boston Childrens (we live in NH) and my daughter received great care there. We had a similar experience with our pediatrician. It's true that sometimes the hemangiomas do go away on their of my daughters had a very large one on her hand and it totally went away on its own...I still can't believe it! But my other daughter had one on her lip and she ended up on oral steroids for months and has had surgery and laser. If it weren't for the early treatment with the steroids, she would have likely needed more serious surgery. My hope is that pediatricians will better inform patients about the options available or at least refer people to specialists when needed or when requested. I'm glad you are seeing great success! Keep us posted on how it goes!

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