PWS on leg and leg length discrepancy - Vascular Birthmarks Foundation Forum
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Old 06-06-2012, 02:39 AM
reenie252000 reenie252000 is offline
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Join Date: Jun 2012
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Default PWS on leg and leg length discrepancy

My ten year old son has a port wine stain from his left buttock down the back of his leg to his ankle. It is fairly light colored. As an infant/toddler he was followed at the Vascular Anomalies Clinic at Boston Children's. He had a slight leg length discrepancy that they recommended be monitored by the pediatrician, and it has remained slight for all these years.

He is now in a big growth spurt, and all of a sudden one of his shoulders is noticeably higher than the other. When I checked him out, I realized his PWS leg is now considerably longer than his other leg, which seems to be making his hip and shoulder higher than the other side.

I am taking him to the pediatrician next week and assume we will be sent back to Children's, but now I'm worried and wondering if anyone has been in a similar situation, and if so, what the outcome was? Thanks for any input!
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Old 08-09-2012, 05:20 AM
nataliegrace nataliegrace is offline
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Join Date: Aug 2012
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Default My 12 month old daughter has the same thing

Hi, my 12 month daughter has a port wine stain from her buttocks all the way down to her toes on the outer part of left leg. I noticed that that leg looked a little chubbier, so I had her checked out and sure enough she has KT syndrome. She has been wearing a compression stocking and that seems to be helping a lot. At Mayo clinic there is a Doctor Driscoll that is amazing. Highly recommend him and his staff. Hugs to you and Good Luck
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Old 08-10-2012, 02:43 AM
abatie abatie is offline
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Join Date: Oct 2009
Posts: 240

Our daughter has a LLD in her leg. She was having pain in her hip, back, and knee and so we had a custom lift made for her. Took care of all the pain. Becca was also evaluated for KT syndrome at Mayo (we wanted to see Dr. Driscoll but saw Dr. Brands and Dr. Nash for that part). Anyway we see someone closer to home now. Becca doesn't have a PWS but has CMTC (it is often misdiagnosed as a PWS). They basically have told us that action is needed when it is impacting. If it isn't causing problems then don't do anything.
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Old 08-20-2012, 01:05 PM
florina florina is offline
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Join Date: Aug 2012
Posts: 3

hello,my doughter have a PWS oh her arm,part of backpack, part of chest and hand,im so woried if she haves KT syndorme,from all the cases i read here i noticed almost everyone who gots PWS also have KT syndrome,im desperated,in my country theres no specialist in this cases and i dont know wat to dy,my doughter is one week old now,the hand het is afected by PWS is little inflated than other one,but orthopedic says that that is from enlarged capilars caused by PWS,IM SO UNHOPLES,I DONT NOW WHAT TO DO,doctors says m to wait until she grows one year old,how can i wait in anxiety one year...
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