Vascular Birthmarks Foundation Forum - View Single Post - PWS on Leg - Concerned parent - what to look for
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Old 07-02-2012, 03:35 AM
mikerd mikerd is offline
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Join Date: Jul 2012
Posts: 5
Default PWS on Leg - Concerned parent - what to look for

Hi,

It's amazing what you only find when you need it. What a great foundation and support group!

My daughter was born just a couple weeks ago. Healthy, happy baby. She has a birthmark on her right leg, covering most of the outside of the leg, and some of the inside of her leg including 1/2 of privates. The attending pediatrician said not to worry, it will fade over a few years, but come back in six months because in rare cases it could be a sign of something else.

Being your typical type-A parent, and based on subsequent comments from nurses, I began searching. I think its a port-wine stain (meaning the ped was wrong and it won't fade). And am now concerned about kt syndrome. I'm getting a referral to a dermatologist (hope that's the right specialist), but that's a few months away.

What I can't find readily through the internet is:

1) What is the likelihood of KT. Apparently its very rare, but then I imagine a PWS like that is also very rare. Is it still unlikely given the existing stain?

2) Both treatment of PWS and help with KT are apparently important early "in infancy". How late is too late, how pushy do I have to be?

3) Is there anything I can do to help / monitor during the waiting period? Things to watch for? Measurements over the next few months?

4) Any other observations, links or advice?

I've attached a picture taken at birth.
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