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-   -   Has anyone else been in this situation? (http://birthmark.org/board/showthread.php?t=2750)

MRsCHADT 01-29-2008 03:30 PM

Has anyone else been in this situation?
 
My daughter Isabella is 5 now, and we've been through a lot if only we would have known or been told more. She was born with a hemangioma on her upper lip. By the time she was three months old it ballooned and spread up into her right nostril. The hemangioma was deep "compound" going the whole way from outside lip to inside. Our pediatrican sent us to a dermatologist who at three months gave her steroid shots, they worked enough so she could breath while nursing. Then at a year old we were sent to another dermatologistat the University of Michigan who did laser, it only changed the color of the H from bright red to a more flesh tone. At three years old we were sent back to the first dermatologist who then tried an experimental creme - it did't do anything. Then oral steriods and we stopped them due to Isabella refused to take them and we had to wrestle her down to get her to swallow. Horrible stuff - again didn't work so we stopped. So then the dermatologist said they couldn't do anything more and the peditrican's advice was to leave her alone it would go away before she started school. I had two children after Isabella. During my second pregnancy I asked the doctor what the chances were for another baby with a hemangioma, the reply was one in a millionth chance. My middle child, a boy, was born without any defects. My youngest, a girl, was born with an hemangioma. The pediatrican at the hosptal told me it was bad luck when I asked him the same question of having two children with an H.

Instead of her face like Isabella, it's on the back and "superficial". Two months ago Ali, my youngest, formed a red spot on her head behind her ear, the size of a small zit. It bothers her, she reaches back and fusses occassionally. But our ped doctor just says to monitor it. When Isabella was a baby she had her head scanned for hemangioma's, so why not Ali? Isabella cried her first year of life and ped doctor told me it was colic, I now begin to think it was pain from her H on her face. I don't want Ali going through the same experience as Isabella if we can prevent it.

Since Isabella is 5 were being sent to see a Laser Dermatologist at Geisinger Hospital in Danville, PA (about an hour or so from where we live.) I had Ali included in the appt, but now I'm not sure if I should go to see this dermatologist or if I should seek an appt and find the way to take my daughters to see someone who specializes in hemangoima's like Dr. Warner or Dr. Fay. I just don't want to put my daughter through anymore trauma of treatments that don't work, and I'm concerned with the dot forming on my baby's head since it bothers her. I read deep hemangioma's form between 2-4 months of age are painful and if it's in her head could affect her brain. She has been not wanting to eat cereal since I introduced it the beginning of December. Maybe I'm an overactive worried mom.

Has anyone been in this situation?

nickbar 01-29-2008 08:16 PM

I am sorry you've been through this. Trying things and then not having them work is beyond frustrating. Once the h. has stopped growing many of the treatment options will not work to "get rid of it". A couple possible things to research are surgical excision or laser (or both). If you are not finding the doctors in your area are experienced in treating hemangiomas, it might be a good idea to seek the opinion of one of the specialists on the board. You can email Dr. Levitin for an opinion. Sometimes even getting multiple opinions helps you search out what you think is the best route to go (for both your daughters). I had 7 opinions and some from well known specialists...they all did not agree...but I was able to feel what route was best for my son. Follow your instincts. How old is Ali?

Corinne

MRsCHADT 01-30-2008 12:24 AM

Ali will be 6 months old next week. Thank you for replying to my post. I really don't want my baby going through what my oldest daughter has, but I really want to find a doctor to help both my kids. Our family doctor is sending us to see a Dr. Pride at Giesinger Hospital in Danville, PA about an hour from where we live who is in laser surgery, but I'm not opposed to taking my daughters to another state if need be to get the best care. It's just really great finding this site to talk to others who are going through this.
thank you.

nickbar 01-31-2008 03:33 AM

If NYC isn't too much farther for you, you might consider getting an opinion from Dr. Levitin/Waner. You can find their contact information on this site and/or email Dr. Levitin for an opinion.

Corinne


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