Segmental Hemangioma - Vascular Birthmarks Foundation Forum
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  #1  
Old 08-13-2010, 06:16 PM
mommy23 mommy23 is offline
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Default Segmental Hemangioma

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).
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  #2  
Old 08-13-2010, 10:57 PM
nickbar nickbar is offline
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I would consider using a zinc oxide product or aquopher product on her peri-anal hemangioma to help protect the skin. In my opinion it would be a good idea to get a second opinion on possible treatment options, recommendations on current treatment, etc. If you would like to email me directly, please remind me of your daughter's case. You can write to Dr. Gregory Levitin on the website via "ask the expert".

My son had a facial segmental hemangioma and laser was very successful in his case. Dr. Stuart Nelson is our laser expert.
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  #3  
Old 08-14-2010, 02:54 AM
tlampley3 tlampley3 is offline
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My daughter has segmental hemangiomas on the side of her head and on her throat. She has another small one behind her ear on the other side of her head and in both corners of her mouth. Imaging found a small, flat hemangioma on the back of her tongue, but she is also taking Propranolol and that seems to be controlling it. THANK GOD! We also use Timolol drops on her head and throat and Timolol gel on her lips. It's just a topical version of Propranolol (from my understanding). Her Dr. recommended putting vasoline or Aquaphor on her lips to help keep them from ulcerating. So far, so good. Good luck to you. I hope you are able to find something that works for the diaper area. I agree that second opinions are always a good thing. My daughters pediatrician told me that there was nothing I could do and not to worry. I sought out a second opinion after I researched on my own and found this site. I am very happy and thankful I did, because if she hadn't been on Propranolol she could have had airway involvement with the internal hemangioma on her tongue. Again, best wishes!
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Old 08-16-2010, 03:41 PM
mortman mortman is offline
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my 4.5m old boy has a segmental hemangioma on his left leg (from hip to toes) and also the diaper area. We were told it was nothing to worry about. We noticed that it seemed to be spreading. When he was born there was nothing in the diaper area. I agree Zinc Oxide (40%) is great at keeping the bleeding at bay.

We went to a dermatologist. She and others in the office had never seen a hemangioma like my son's. They decided to take pictures and send them off for a second opinion.

We are now headed in for an MRI next week. They will be checking for hemangiomas on his internal organs. They will also check for a spinal cord abnormality (tethered cord) because our son's hemangioma crosses the centerline of his body.

Our situations sound similar. I thought you should know how our dermatologist is handling my son's hemangiomas.
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