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-   -   PHACE Syndrome Tampa, FL (http://birthmark.org/board/showthread.php?t=6419)

koneal 06-18-2013 01:50 AM

PHACE Syndrome Tampa, FL
 
Hi my name is Kristyn. Three weeks after my daughter was born a large facial hemangioma grew on the left side of her face. She has been on propranolol since she was 4 weeks old, she is now 10 months old. She had a mri/mra done last week that showed abnormalities in the blood flow of the brain and neck. It seems like in Tampa, FL NO ONE knows what they are doing. Does anyone have any advice? Trying to figure out what the next steps are. We've thought about taking her to the childrens hospital in Wisconsin. Any thoughts?

missy 06-18-2013 01:45 PM

Hi and welcome!

Tampa is a hard area to have a vascular birthmark! There's just no one in central Florida to help, it seems.

What made you choose the Children's Hosp in Wisconsin? Is that choice insurance related, or did you have a specific physician in mind?

Missy

koneal 06-19-2013 01:24 AM

We did some research on best places for PHACE syndrome, Wisconsin and Cinncinnatti were the first ones to come up. I contacted both of them, Wisconsin called me back first. I am totally noticing that its hard. Several mistakes have been made here.

koneal 06-19-2013 01:28 AM

Also I have read great things about Dr. Drolet. Any advice would be greatly appreciated. Also, do you know of ANY kind of phace support group. Just would love to talk to another mom that knows what I am going through.

smurph 06-19-2013 03:38 AM

Hi there! I'm trying to look into this a little more for you. In the meantime, I'm wondering if you've seen these sites:
http://phacesyndromecommunity.org/
https://www.facebook.com/pages/PHACE...Y/203907546588

While doing some research, I have noticed what you mentioned about Wisconsin being one of the leaders in this area. You said that they called you back (in your earlier post.) Maybe they could refer you to someone closer to home? I'm not sure if that is possible since there seems to be so few places that actually specialize in it.

A friend of mine has a son with PHACES so I'm going to ask her if she has any recommendations for support groups, etc. and I will get back to you, ok?
I'm sure it must be overwhelming right now and it is a lot to take in. I think it is a great idea to get hooked up with some other moms who are going through the same thing. I'll try to help you with this piece. Hopefully I will get back to you tomorrow. Take care!

Shannon

smurph 06-23-2013 01:05 AM

Sorry it took me a few extra days. You could also look into Denise Metry in Texas I believe. Good luck! Let us know how it goes!
Shannon


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