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summercagle 01-08-2014 07:50 PM

hemangioma - advice
My daughter is now 21 months old.When she was born she had 3 hemangiomas that we noticed. Then when her umbilical cord fell off she had a tiny red spot on the bottom of her belly button about a week later it covered up her entire belly button its like a ball over her belly button. Her pediatrician sent us to Tx Childrens to a dermatologist. The dermatologist look at her and said that she had 4 hemangiomas but it was nothing to worry about that maybe around 1 year they could remove the one on her belly button. Just before her first birthday she woke up screaming and was flopping around in her bed would not let me hold her up against me. I was able to look at her belly button and pull it out enough to see between the belly button and the hemangioma it looked like raw skin but had black spots so I called the on call dermatologist in Houston and they told me to bring her in (it was 2am and its a 2 hour drive from my house) so of course we took her over there. We get there and they tell us its nothing to worry about its just part of having a hemangioma that they ulcerate. And that we had nothing to worry about and now she is saying that they dont want to remove it because they are not sure of what all it is attached to internally. But now for the last couple of days shes been holding her tummy by her belly button saying "ouch" and will not let anyone touch it and has been crying in her sleep every night. If you ask her what hurts she lifts her shirt up and touches beside her belly button and says "ouch". Also the one on her lower back is little but always has big dark blueish looking bruises all around it, is that normal?

smurph 01-09-2014 02:07 AM

Hi there!
Is there any way that you could get a second opinion? I see that you went to Texas Childrens Hospital and I think there is a Dr. Lisa M. Buckmiller, MD who works in San Antonio. She was Dr. Waner's partner and has extensive experience treating hemangiomas. But I'm not sure how far it is for you. Another option is to email Dr. Levitin (go to the Ask the Experts page on here and you can see how to do that.) It is true that hemangiomas can ulcerate, but I wouldn't consider it to be "just a part of having a hemangioma." It is very painful and often requires treatment to help it heal. As far as I know, hemangiomas are most likely to ulcerate when they are growing during the first year or so, not so much when you are at almost 2 years of age. That seems unusual to me. Also, I was wondering if she was ever checked for internal hemangiomas since having multiple hemangiomas can sometimes be a sign of that. I am not saying that it is anything to necessarily worry about, but since she is in pain and has been crying and you see big dark bruises around the one on her back, I would suggest that it is something to be investigated further by getting a second opinion. If you email Dr. Levitin, be sure to send pictures, and perhaps he may be able to give you his thoughts. I am not a doctor, but I'm just going on my experience as a mom-when your daugther's in pain and something doesn't seem right, I say trust your gut and look into it some more with another specialist. Let me know if you need any help connecting with someone or have any more questions! Good luck!

summercagle 01-09-2014 02:48 PM

Thank you very much. We are about 5 or 6 hours away from San Antonio, we are actually going there this weekend to visit family. I even asked her doctor if she should be checked for internal hemangiomas and she told me no that I wouldnt have anything to worry about. It just worries me that she has been saying it hurts. At Texas Childrens she just told me to keep vasoline on it and to use aveeno baby soap. I will definitely send the email to Dr. Levitin with some pictures.

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