Diaper Area Hemagioma - Vascular Birthmarks Foundation Forum
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  #1  
Old 10-12-2012, 02:53 PM
Meg.R Meg.R is offline
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Default Diaper Area Hemagioma

I am writing because I have no idea where to start with helping my 10 week old daughter who has several hemagiomas in her diaper area. They began around the time she was a week old. The ped thought it was a diaper rash and for the next 7 weeks we tried everything. It was not until we exhausted all treatments that she was referred to a dermatologist. The dermatologist look at her for 30 seconds said it was a hemagioma and send me on my way stating it would go away by the age 5.

Since then I have been doing my own research and have found out that this could be more of an issue with keeping the area protected from ulceration. I have called my ped back with questions and have no response and I also made appointments for her to see another dermatologist. I also want to note that my daughter was also born with a perineum skin tab the size of an pencil eraser. She was seen by pediatric surgery and they stated that they will remove it when she is older. I see them again in November.

I also want to add that when the hemagiomas started growing more pronounced she did have bleeding and one spot that looks like it is taking longer to heal - none of her doctors felt she need to treat.

Here are my questions for you

1.what doctors should I being seeing specifically

2. should she be check for internal hemagiomas - she is exculsively breastfed and has only water like stools, hiccups 3 to 4 times a day, sometimes sounds snotty, and coughs a couple times a day?

3 what form of treatment if any do you think I should look into - I am interested in the pulse dye laser treatment as it seems the most relavent to that area.

4. Do any of you know any doctors in the Albany, New York area that have expirence with this?

Thank you a milion times over for looking at this and helping me along. I feel a little overwhelmed by this and have no insight on how to keep her from getting an infection or pain.
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Old 10-20-2012, 04:51 AM
AMR32 AMR32 is offline
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Meg, I totally feel your pain. My daughter is now 26 months old, but she, too, was born with a H in the diaper area. At its worst, it grew overmtheleft side of her labia and into her vagina and rectum. It ulcerated the first month, and she was in excruciating pain. We got the run around, too, from a few docs, but your gut tells you there's something to be done. There is. I'm in the Chicago area, so I don't know specific docs in NY. We went to Children's Memorial. We looked specifically for a pediatric dermatologist who specializes in hemangiomas. She is wonderful. We started Propanalol at four months, and it greatly improved. The ulcerations in that area can be infected easily, so we also used topical gels Metrogel and Regranex and slather Aquaphor on every diaper change. We were told laser therapy and surgery in this area wasn't usually done. My daughter will have scarring already, and I don't want to make it worse. I can't encourage you enough to keep seeking help until you find the right doctor. This particular area for an H can be very painful. My daughter was prescribed narcotics at one point because the ulceration was deep. Do not let people blow you off. I know it is stressful and overwhelming, but you know what's best for her. Message me any time if you have questions. Good luck!
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Old 10-22-2012, 02:39 AM
Kmeppen Kmeppen is offline
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Meg, I'm in the Albany, NY area. I could have written your post. My 3 month old daughter has a hemangioma in her diaper area as well. She had it at birth and both the pediatrician in the hospital at birth and her regular pediatrician said to just watch it. It has started growing and now I believe it is ulcerating as there are areas that bleed occasionally when I change her. I found your post while searching for more information and just had to reply seeing as you're in my area. As far as doctors I'm planning on contacting a pediatric dermatologist if I can find one in the area. I am completely with you on the overwhelming feeling.
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