Vascular Birthmarks Foundation Forum - View Single Post - Hemangioma and propranolol- Help!
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Old 05-28-2012, 04:52 AM
smurph smurph is offline
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Join Date: Jan 2007
Posts: 459

Hi there! I feel for you and for your daughter. Ulcerations can be so painful. It kinds of bothers me that the Derm. said she wouldn't need anything for the pain because it wouldn't hurt anymore in a week or two! That's easy for him to say! How would he feel if he had 4 open wounds for 3 weeks and his doctor told him he didn't need anything for the pain because it wouldn't hurt in a week or two??!! Sorry, that's just the Mom in me talking!

My 7 year old has a lip hemangioma and she had an ulceration when she was about 2 months old and she cried and cried every waking moment.( I did not even know what an ulceration was at the time. )And if she bumped her lip on something...she cried and cried some more! The whole time our pediatrician was telling us that her hemangioma was not painful and just told us to put vaseline on it. He said she was just colicky. It got so bad that I called Boston to see if they could move our first appointment up because she was having a hard time nursing. You can imagine how horrified I was when they told me that she had an extremely painful ulceration that needed immediate treatment. So I think that's why your post struck a chord with me!

The first thing they did to help with the ulceration was give us a tube of Xylocane. I had to put it on her lip often, especially before every feeding, until her lip totally healed. I don't know if it works the same way on ulcerations in other locations but it might be worth a try to ask. If the Derm. doesn't want to maybe her pediatrician would help with this...or maybe if you have a nurse practitioner in your practice...someone who can sympathize and think about the "whole child" and not just the "hemangioma." I wouldn't want it to interfere with the propanolol in any way (my daughter was on steroids, not propanolol) so you'd definitely want to check. Or maybe there is something else. Even tylenol or something? I remember the regimen for us was-Xyloncane, Antibiotic Ointment and Aquaphor. It helped a lot in the healing process, but I'm sure the steroids also played a big part because really stopped the growth pretty quickly.

Ironically, I also have a 3 year old daughter who has/had a hemangioma on her hand and wrist. It has done amazingly well going away on its own though. We did not have the same problems with ulcerations as we did with my older daughter. Do you have any pictures to share? I could share some of my daughters' hemangiomas if you are interested. Just let me know!

I would definitely call back and tell him about the pain again and see if there is anything more that can be done. Maybe some other people will chime in with other suggestions too. Good luck and keep us posted!

Hang in there. It will get better!

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