Hemangioma and propranolol- Help! - Vascular Birthmarks Foundation Forum
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Old 05-28-2012, 02:58 AM
jennr11 jennr11 is offline
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Join Date: May 2012
Posts: 14
Default Hemangioma and propranolol- Help!

My 12 week old daughter was born with a large hemangioma on her left forearm/wrist/hand. It was flat at birth and started puffing up and deepening in color by 2 weeks of age. I was persistent to see a ped dermatologist from the start so our appointment was made for a month and a half later. By 9 weeks old her hemangioma was very large and beginning to ulcerate. We had her dermatology appt at 10 weeks old and they suggested we start propranolol. After a visit with a cardiologist we started the drug the same week (2mg/kg/day). We are now currently on day 11 on the propranolol and I have not seen much change in her ulcers. She had 4 ulcers at the time of our visit, one healed, but she has actually just developed a new ulcer in the crease of her wrist. She's been in extreme pain for over 3 weeks now and it's breaking my heart. Every time she moves her arm the "wrong" way or brushes it against something she screams in pain to the point of tears. When I asked about anything topical for pain at the appt, the Derm said she wouldn't need it because the propranolol heals the ulcers so quickly. He went as far to tell me they wouldn't be hurting her in a week or two.
Wondering what others experience with the drug has been? Am I hoping for too much too soon? How quickly did the med make your ulcers heal? Is there anything I should specifically call back and ask for for the pain?
Thanks in advance!

I will add that I do feel like the propranolol has already slightly decreased the puffiness of her hem and changed the color from more of a red to a purple color.
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