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-   -   Discouraged... (http://birthmark.org/board/showthread.php?t=6348)

Jessica727 05-21-2013 08:18 PM

Discouraged...
 
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My son had developed his hemangioma about a week after birth. Since it was so close to his eye they started treatment right away. (About 1 month old) At first they put him on propranolol & it seemed to be working however not as fast as they would have liked. Then it seemed to be no longer helping so they switched us to Athenolol (same class) It has gotten a lot flatter and less red but I'm still discouraged at the length it is taking. Perhaps I'm not administering the prescription properly? It seems to work really well at first but then as the prescription gets older the results slow down. He is now 8 1/2 months old and taking this prescription twice a day. (Up to 5mls now each time) I've already asked about Timolol but they refuse to prescribe it to me as there has not been enough studies on it. I'm also wondering if this means he will have his birthmark longer or if he just does not respond as well to the meds as other babies. I'm discouraged but trying to stay positive. It has not affected his vision so we are very happy about that.

smurph 05-22-2013 02:07 AM

Hi there! I'm not too knowledgeable about hemangiomas near the eye, but it looks promising that it is so flat. Since he is only 8 1/2 months old it probably hasn't really started to involute on its own yet and the fact that the meds are keeping it from growing bigger seems like a good thing (esp. with it being so close to his eye.) If he had not taken them, it may have been growing bigger and bigger over the course of all of these months. So even though you are not seeing the fading that you are hoping for, it might be holding the hemangioma at bay during this growth stage. Once he is about a year or so, you might be begin to see more fading over the course of that next year.
I'm only talking from the experience of my daughter's hemangioma. She was on oral steroids (this was 8 years ago) and it really shrunk it but it remained quite red for the whole year...then from age 1-2-3 we saw significant fading. Here's her photo album so you can see how it was when she was on the meds, when she came off, and when it involuted.
I know it is discouraging when it doesn't change as fast as we would like. But maybe the medicine is really working well to keep it where it is at for now...does that make sense?
https://www.facebook.com/media/set/?...0902383&type=3

So hang in there! You will get there! :)
Shannon


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