Vascular Birthmarks Foundation Forum - View Single Post - lower lip hemangioma, toronto
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Old 06-25-2013, 03:32 AM
smurph smurph is offline
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Join Date: Jan 2007
Posts: 457

I'm so sorry you are going through this. My daughter's lip hemangioma ulcerated when she was about 8 weeks old and it was sooo painful. She cried all the time and so I feel your pain. It was a very difficult time for us. At the time of my daughter's treatment (8 years ago) oral steroids were used and so that is what she went on. It worked very well for her. We also had to put an antibiotic cream on the ulceration until it healed and then we needed to put Aquaphor on her lip before every feeding and we continued to do this until she was almost one just to be on the safe side and to protect her lip from that friction. Finally, they gave us's like a numbing cream that helped with the pain until the ulceration healed. Oral steroids aren't used much anymore. Other meds like propanolol and timolol are used so those might be an option for you.

I'm not sure how health care works in Canada exactly, but is it possible for you to get a referral to a specialist? There is a Vascular Anomalies Clinics at Hospital for Sick Children in Toronto, Canada. That might be a good place to go if you can since you are right in Toronto. I would definitely tell the pediatrician/family doctor or whoever would be giving you the referral that your daughter's hemangioma is growing rapidly and is badly ulcerated to the point that she is in a lot of pain when feeding...if it is interfering with feeding I would hope that they would realize that it is not just your typical hemangioma that will go away without any complications. If you go on the Find the Doctor link and click on Canada it will give you more info about places to go. In terms of support, you have found a great site here, but you can also to:
You might find online support there as well. You could also call Sick Kids in Toronto to see if there are any support groups up in that area.
In the meantime, you could put aquaphor or vaseline on her lip.

Well, I hope some of that helps. I wish I lived closer to Toronto and I would come visit you!! haha! You are definitely not alone. I have been there and there are many others who have been too. Please let us know how it goes. Is there someone you can call to get that referral? I think that's the most important first step.
Hang in there. It will be ok.

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