Hemangioma and Treatments.. - Vascular Birthmarks Foundation Forum
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  #1  
Old 11-19-2011, 06:40 PM
Ahope2011 Ahope2011 is offline
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Join Date: Nov 2011
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Default Hemangioma and Treatments..

My daughter was born july 12, 2011, she is my first baby so i have never been thro this before. She was born with it on her nose at first it was a little pink spot but a few days after she was born it started turn dark red and growing like crazy. now she is 4 months old and it is the size of a golf ball, it blocks her nostrils and she has a hard time eating and sleeping because she struggles to breath. It has started to split and bleed like crazy no matter how hard we try to stop it. I had to fight to get her to see a specialist and they put her on propranonal and steroids. the steroids seem to shrink it a bit but the said they could only keep her on it for a week cause she was so small and would cause her issues. She has been on the propranonal for about a month and there has been no change at all they wont operate or do laser they just keep saying to wait for it to start working. I am frustrated and dont know where to go from her i am tired of seeing my baby in pain and i fight and fight for someone to help her and all they say is i have to wait..
i just want to know where do i go from here and how lond did it take for this medicine to start working. please help!!
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Old 11-19-2011, 11:38 PM
missy missy is offline
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Hi and welcome!

Sorry you've had such a tough time. Where are you located? My best advice right now would be to get in touch with one of our experts at
http://birthmark.org/experts.php

Other parents will be in soon to give you their experiences with propanolol.

Hang in there!

Missy
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  #3  
Old 11-27-2011, 09:12 PM
spaatz1329 spaatz1329 is offline
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Join Date: Jun 2011
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It took about 8 weeks to really start to notice a difference, but then it really changed fast. Hang in there!
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Jamie
Ellie- born 5/24/11
Forehead Hemangioma, Finger Tip Hemangioma
Large Diaper Area Hemangioma w/ PELVIS Syndrome
Tethered Spinal Cord, Bladder Exstrophy/Cloacal Anomoly
Diagnosed with Rhabdomyosarcoma 3/19 begins 46 week Chemotherapy treatment 4/9
On Propanol 1.4mL/3 times daily
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Old 12-01-2011, 12:27 AM
nickbar nickbar is offline
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Location: Pacific Northwest
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How are things going? Any changes. Where are you located?
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