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Old 12-31-2011, 02:54 PM
juliekelly317 juliekelly317 is offline
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Join Date: Dec 2011
Posts: 2
Default Advice?

Hi Everyone, I am new to this board but have been lurking a little bit and wanted to get some advice. My daughter Charlotte is 5 months old and has a lip hemangioma on her upper lip. My pediatrician (who I love!) told us to 'wait and see' but watch it and if it starts to grow, bleed or interfere with her eating than we would 'do something about it'. I wanted another opinion so we met with a plastic surgeon here in Nashville and he agreed to wait and see and if it got larger than a large pea he would recommend oral steroids.
After some research I decided to contact the Vascular Anomalies Center in Boston (we have family up there) and spoke with Kerri who was wonderful. She showed Charlotte's pictures to Dr. Green? and he recommended steroid injections to slow the growth. I've since made an appointment with a pediatric dermatologist at Vanderbilt Children's here in Nashville. The appointment is not until Feb. 15 and she will be 6.5 months by then. I feel like I should have pushed for more info from doctors when she was younger and maybe it would not have gotten as large as it is now? Also despite my appointment on Feb. 15, I'm not sure if this dermatologist will even administer steroid injections. I think there is another specialist facility in North Carolina as well as South Carolina (within an 8 hour drive or so).
I need help deciding if I should fly up to Boston to have her looked at? or if I should try to make an appointment at another facility or if I should not intervene at all and hope that it will fade enough overtime. I just want to make the right choices for my baby...
Anyone else in the south?
Thanks for is nice to know there are others in the same boat!
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Old 12-31-2011, 07:59 PM
smurph smurph is offline
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Join Date: Jan 2007
Posts: 459

Hi there! Your daughter is a real cutie! My daughter also has an upper lip hemangioma. And she has had all her treatment at Boston Childrens. I think you have a couple options. You could call the doctor in Nashville back and try to push for an earlier appt. We originally had an appointment for a month away, but when my daughter seemed to be developing some complications we called back and they took us that very day. If you call and tell them your concerns, maybe they will bump you up? It can't hurt to ask.

Another option is to contact Dr. Levitin (through the Ask the Expert page here) and you can send pictures and he will give you his opinion as well. I think he has an office right in N. Carolina and he is one of the leading experts in the field. I have spoken to him a couple of times online and met him at the Conference in NY and he is awesome! It would be easier than going to Boston.

Glad you found this site! My daughter had early treatment with oral steroids and it helped so much. I think it saved her lipline. She did have a small surgery when she was 5 to fix a spot that had ulcerated when she was about 2 months old and also one laser treatment. But she is 6 now and her lip looks great!
Hoped this helped! Please keep in touch! It's tough to make these decisions. I've totally been there. You love your baby and you really can't go wrong with that, no matter what decision you make. She is beautiful no matter what!

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