My daughter Ellie is 6 1/2 months old and has a dx of a segmental hemangioma. It affects her R leg and groin area and consists of several hemangiomas which have different appearances. Two are flat and dark red - one of these extends from her ankle nearly up to her knee and wraps halfway around her leg; the other is on her upper posterior thigh. She has 2 on her R inner labia which appear as more typical superficial hemangiomas. And she also has 1 just near her anus on the R side - it is a softer pinkish-red but still raised. She also has many prominent vessels on her R lower buttock. She has no hemangiomas elsewhere on her body and is developmentally normal (ie. meeting all her milestones appropriately). Abdominal and spinal imaging found no internal hemangiomas.
At birth, the flat hemangiomas on her R leg were noted and diagnosed as PWS, however on visiting our Peds Derm, she is confident of the Segmental Hemangioma diagnosis. I have found very little to read on this, as it seems quite rare, and want to ensure that she receives appropriate treatment for it. Currently she's on propranolol (for 4 months so far) and the hemangiomas aren't growing or shrinking. She has had ulceration at the ankle 3 times, but these have healed well now. Our derm doesn't think that other treatment is req'd at this point, and I do trust her opinion, but want to know if anyone else has any suggestions for treatment.
Also, the peri-anal hemangioma has recently started bleeding (only with a bowel movement) and it is impossible to apply a dressing that sticks as the hemangioma is immediately touching the anal opening. Any suggestions?
Sorry, I don't have pictures as I'm at work today (also, getting a focussed pic of her labia has been next to impossible).