Advice? - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Help and Resources for Hemangiomas

Reply
 
Thread Tools Display Modes
  #1  
Old 12-31-2011, 01:54 PM
juliekelly317 juliekelly317 is offline
Junior Member
 
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 reading...it is nice to know there are others in the same boat!
Attached Images
File Type: jpg photo 1.JPG (35.6 KB, 0 views)
File Type: jpg photo 2.JPG (38.5 KB, 0 views)
File Type: jpg photo 3.JPG (41.9 KB, 0 views)
Reply With Quote
  #2  
Old 12-31-2011, 06:59 PM
smurph smurph is offline
Senior Member
 
Join Date: Jan 2007
Posts: 409
Default

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!

Shannon
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump