Looking for the best doctor in NY for treating PWS? - Vascular Birthmarks Foundation Forum
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  #1  
Old 10-27-2004, 02:43 PM
Newmom
 
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Default Looking for the best doctor in NY for treating PWS?

Hello,

I would like to know the name(s) of the best physician(s) in NY, who offer treatment for Port Wine Stains (especially on infants).

Our daughter is 2 months now, and she has a port wine stain on her entire right cheek, and we would like to know the foll:
(a) when is the good time to start treatment for her.
(b) Are there parent support groups for PWS, and
(c) how do parents deal with the treatment periods, and to deal with the emotional stress..
(d) Is "V-Beam" laser the way to go OR "CANDELA" laser the way to go ... (Although these are just different brands of pulse-dye lasers, we would like to use the technology that offers the best results..)

Please respond.

Thanks
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  #2  
Old 10-27-2004, 03:59 PM
alexasmommy
 
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Default Re:Looking for the best doctor in NY for treating PWS?

Hi. My daughter has a pws and she is treated by Dr Geronemus in NYC. He is considered the best or one of the best for treating pws especially in children.
He began treating my daughter at 6 weeks old.
From my understanding and research, the earlier you begin treatment the better it is.
The V Beam is a laser made by Candela. Dr Geronemus uses the Candela V Beam at I believe he has a "special: version of this laser that no one else has. That may have changed . I am not sure if other doctors have been able to get this "souped up" version from Candela. Only one was initially made.
I will send you a seperate post with all the links for other groups for support.
There are different lasers. One is the PDL-pulse dye. ANother is IPL which is a light laser. The PDL seem to be the most used and many feel it is the laser of choice for pws especially with children. However, I know of many adults who have had good results with the IPL laser.
How do I deal?? The first year was the worst for me. It did get easier as time when on, but three years later I still have days that are good and days that are bad. You sort of learn that this is her life and you have to do what you need to do. My daughter's also is near her eye so Glaucoma is also a risk for her.
If the pws is near or bisecting the eye or upper eyelid ,they are at an increased risk for Glaucoma among other issues.
Myself personally, have helped deal with the stress by getting involved with groups and talking to other parents and adults with pws. I promised my daughter that something good will come of this and I made a promise that I will help all new parents the way I was helped and guided when my daughter was born.
I will send you a seperate post with all the links for other groups for support.
Please feel free to email me privately. alexasmommy@realityquest.net
I can give you a lot more info but I do not want to overwhelm you at one time. I can only tell you that my daughter's doctor believes in early treatment. When I was at the PWS Conference in NY, all the docs there were in agreement that the earlier you begin treatments, the better. My daughter started at six weeks old and her fading has been dramatic.
Elena

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  #3  
Old 10-27-2004, 04:04 PM
alexasmommy
 
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Default Re:Looking for the best doctor in NY for treating PWS?


newsgroup of adults and parents
http://www.birthmarks.com
Also a wealth of info

This group is for parents and adults that are dealing with pws and other medical issues. A great group of people here. A lot of support.
http://groups.msn.com/Sturge-WeberSy...munitySupport/

My daughters Doctors website.
http://www.laserskinsurgery.com

Good luck.....
Elena
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