PWS on Leg - Concerned parent - what to look for - Page 2 - Vascular Birthmarks Foundation Forum
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Old 07-27-2012, 02:47 AM
kaykay kaykay is offline
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Join Date: May 2006
Posts: 233

your english is fine
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Old 08-09-2012, 04:49 AM
nataliegrace nataliegrace is offline
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Join Date: Aug 2012
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Default Mine too...

My daughter is 12 months old, and she too has a port wine stain from buttocks to toes on the outer part of left leg. It is very light when sleeping, but since she is learning to walk it is only getting darker. I took her to Mayo Clinic and it was confirmed that she has KT syndrome. It is a little bigger, but you can't tell unless you know what you are looking for. She is now wearing a fitted compression stocking as much as possible. I am worried for the future, but I am being hopeful. Scary stuff! I hope this helps. I am open to talk about anything if you have any questions...
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Old 08-12-2012, 09:24 PM
Jaja Krijesnica Jaja Krijesnica is offline
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Join Date: Jul 2012
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Hi nataliegrace,

I wrote about my daughter she has PWS on the right leg, buttocks, tongue, lower lip and forehead, also the right leg is thinner and shorter, about 1.5 cm.
Exploring all the vascular malformations seems to me that this might be a KT. Soon we go to a second opinion.
Can you send me your email and I would like to send you some pictures of my child?
My email is
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Old 08-23-2012, 05:03 AM
Babyshine12 Babyshine12 is offline
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Join Date: Aug 2012
Posts: 11

Hi my daughter was born on April with a pws on her left side ther do MRI mra Eco and eyes test and thank god everything is ok I am concerning laser treatments because of her self esteem in he future I have cried like crazy and asked my self why. I am concern about th anesthesia part. I am going to the vbf conference on November to talk to the experts on the topic. I will say trust your instinct. It is hard but it will get better
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