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  #1  
Old 03-03-2011, 04:59 PM
willasmama willasmama is offline
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Default help- how to push for surgery

My daughter Willa is 14 months old and has been getting laser treatments for two hemangiomas, one on her stomach and one on her forehead, since she was about six months, with almost no improvement. She had one cortisone injection on the stomach hemangioma (doc wanted to see how she reacted there first) and it only made a tiny tiny difference. I'm starting to get impatient and concerned. She's a very smart girl and is becoming aware of the one on her forehead already (when she pulls on it I tell her its her strawberrry mark and to be gentle, and she now points to it and calls it her "mawk") and of course people comment, some politely, some rudely, and I want to be sure that she doesn't have any emotional fallout from this.

I have an appointment with her dermatologist soon, and I think he'll probably be focusing on another injection or more laser, but I would like to push for a referral to a surgeon. I mean, health and safety is my first concern, of course, but from my research it seems like she would be a very good candidate for surgery if we found a good surgeon. (I live in Georgia, btw, if anyone has a surgeon they'd recommend)

Finally I get around to my question. Does anyone have advice on how to insist on taking more aggressive measures, or any suggestions of questions I should ask about surgery... gee that sounds vague... basically I'm just an anxious mommy who's eager to take action, and I want to be sure I do so in the best way possible for Willa. Any advice?

I attached a picture--one of my favorites because of her funny expression. ETA: I should say that this picture is a couple of months old (the latest ones are on my husband's computer) and I think the hemangioma has actually gotten bigger since then. If I can manage to get a pic of her tummy soon, I'll post that too.
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Last edited by willasmama : 03-03-2011 at 06:22 PM. Reason: clarification about photo
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Old 03-03-2011, 07:30 PM
adnama adnama is offline
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First off your little girl is beautiful! My son also has an H on his forehead and will require surgery but so far the Doctors we have talked to will not do it...yet. We live in Ontario Canada and it is really hard to get a Doctor willing to do surgery but we are really going to push for it this summer when our son has his check up and if they say no were heading to states to get it done. Seeing as you’re in the states I would recommend contacting Dr. Levitin, he is all for early treatment (even surgery) or search this website for other local Doctors. I have found that Doctors in the states are much more willing to do surgery early on, you just have to find the right Doctor.
Good luck with everything and please let us know how you make out!
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Old 03-03-2011, 09:49 PM
lizzyh lizzyh is offline
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So cute! I don't have much advice besides to say to trust your own instinct. You can put trust in the dr's but you are her mama and have to be her advocate. Good luck! Just ask lots more questions. Maybe type them up and take the list with you to the appointment. Get research to back up your questions. That helped me a little... (but I never had to deal with surgery, I felt laser was our best option and that's what the dr suggested). It is frustrating how vague the dr's can be.
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Old 03-04-2011, 01:15 AM
KatieG KatieG is offline
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I think there is a surgeon in SC that will do it. Hochman maybe? We saw Dr. Waner in NYC for our daughter's surgical removal. Let me know if I can help!
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Old 03-05-2011, 07:01 PM
shannonhinz shannonhinz is offline
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My daughter just had surgery yesterday on her scalp hemangioma. It went perfectly and I am so happy we did it. We basically contacted Dr. Levitin via the "ask the expert" tab on this website and than corresponded with him for awhile and met with him when he was in LA. Our dermatologist was against the surgery, but after doing research and talking to other parents who had it done, we decided it was the right choice. I think you really have to be your own advocate in this situation.
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Old 03-07-2011, 09:37 PM
willasmama willasmama is offline
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Thanks for all the feedback so far. It helps. Plus i's nice just knowing there are other moms going through similar experiences.
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