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Old 06-26-2013, 01:09 AM
smurph smurph is offline
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Join Date: Jan 2007
Posts: 459

Hi there! I know that many doctors want to do certain tests and monitor a baby closely as propanolol is started. Although I haven't heard of too many problems with it, it is still relatively new (not as a medication) but in terms of it being used to treat hemangiomas.
With the tests that you mentioned though, I'm wondering if the doctors are checking to rule out if your daughter has PHACES syndrome...did they mention anything about that at all? I'm not an expert on this, but I know that one of the pieces of PHACES syndrome is a large facial hemangioma. Since your daughter has this, I am guessing that the doctors want to look into if there any other issues going on before starting any medication. Just so you know though, it is possible to have a large hemangioma on the face and NOT have PHACES so try not to worry too much. It's pretty rare. So in that sense, I think it's ok to trust that these tests are warranted. I know it must be really, really scary. My cousin went through something similar with her son at a very young age and I remember how it hard it was for her, but she was at a really great hospital where they did tests like that on little babies all the time and everything went fine. The tests will probably help to make sure everything else is ok and then a proper course of treatment can be decided upon.
As for the laser, I'm not really sure on that. I think it could be really effective. I have another friend who's daughter had a large facial hemangioma and laser did wonders.
As for Timolol, I've heard it's pretty effective in some cases depending on the severity of the hemangioma and other factors. I think you just have to try and see what works best.
Hope this helps! Keep us posted on what happens with the tests.
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