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archamsm 02-26-2013 03:44 PM

treatment for blue/purple discoloration of hemangioma
Hi! I'm a newbie here. First time posting. My daughter is 2 1/2 and was diagnosed with a hemangioma on her lip and nose shortly after birth. We were seen at Cincinnati Childrens hospital where we started proprananol at 3 months. She was weaned off proprananol around 18 months and had surgery at 2 years as the hemangioma appeared to have some regrowth. The hemangioma was successfully removed from her lip and laser was done for discoloration under her nose. 6 months later the area abover her lip remains swollen and has purple/bluish undertones under the skin that are noticeable. We were told early on that they believed she presented with both a deep and superficial hemangioma, but that wasn't an absolute. I am wondering now if something more is going on and how to proceed with further treatment. Some days the area above her lip appears more swollen than others. I'm curious if anyone else has had a child with similar purple/blue discoloration? A child with vascular malformation that was covered up with a hemangioma? How was this diagnosed and how are you treating it. Any adivce or helpful leads would be greatly appreciated. stacy

smurph 02-27-2013 12:13 AM

Hi Stacy,
My daughter has a very similar hemangioma to what you described at first. It was on her upper lip and on the skin between her lip and nose. She was oral steroids for most of her first year and then had surgery (to repair where she had an ulceration on her lip) and then laser for the discoloration under her nose. BUT, through all that, her hemangioma was going through the course of natural involution, fading more and more over time with no swelling at all. The only discoloration left has been a slight redness. I'll send you some pictures to look at if you are curious.

So, I would have a hunch too that maybe something else might be going on but it's hard to tell without seeing pictures. Do you have any to share? I know you saw the other post about the arm hemangioma that had a venous malformation underneath....maybe it's something similar??? I don't know. Or maybe it's still soon (she's only 2 1/2) and things are still calming down from the surgery and laser??

Could you go back for an appt. at Cincinnati Childrens to share your concerns? I would try to take some pictures if you can of what you are noticing. If they are the ones who have been treating her, I would say that is definitely the best place to start first because they may have someone who specializes in those types of birthmarks. I hope you are able to find out some more information.

OR- I was just thinking, since that other thread mentioned that Dr. Rosen had diagnosed her daugther's hemangioma/venous malformation, you could always email him as well. He is on the "Ask the Expert" Panel here. That might be a good lead for you as well!

Good luck! Stay in touch!

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