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Hey all, I'm the mom of an amazing little girl with ktws. (ok so I'm a little biased) Anywho, my daughter will be a year old next week and was diagnosed two months ago with ktws. It took 6 months for the diagnosis. She has port wine stains over 50% of her body and has a leg legth decrepency. She is a happy little girl none the less.

She is being fitted for compression stockings in 6 months. Don't know a lot about them. Are they uncomfortable, will they hurt? She has physical therapy once a week and as of today her therapist is concerned because it seems her body is changing, she is not symmetrical in any way shape or form. Her left arm and leg are bigger than their counterparts, as is her left butt cheek. She has some internal issues that we are still getting tested, but they have to do with her left kidney. Her left pupil is bigger than the right. Her left hand is bigger than her right. Her one hip seems to sit higher and the creases in her ankles, knees, groin, and back are all different than those on her other side, but no always supporting the left leg legth difference.

All in all I'm a very confused and scared mother. We go to numerous specialists, but it seems none of them are taking in the big picture.

Is all of this normal with ktws? My research that I've done didn't indicate it would affect everything on her affected side. And the diagnosing doctor was surprised when I indicated that my daughter seemed to be in pain and told me "give her some tylenol". What causes the pain, what eases the pain? I'm a methodical person and I know I can handle the road ahead, I just wish I had some light instead of looking ahead and seeing nothing but dark. Any advise, experiences, words of wisdom would be so greatly appreciated. Thanks for taking the time to read and listen.
Posted on 02/10/09, 02:59 pm
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Reply #1 - 03/01/09  9:19pm
" Tylenol? I know tylenol doesn't touch the pain when I have it. I am on neurontin, lortab,ultram and flexeril. Of course your little one would more than likely not be put on these meds, but there has to be something more than just tylenol. "
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Reply #2 - 03/01/09  9:22pm
" Also I would ask to see if she will need inserts once she starts walking(or is she already walking?). I never had a diagnosis of KT as a child and because of this I developed scoliosis. My KT leg is actually a little shorter. I now walk with a slight limp and I have right side hip pain all of the time. "
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Reply #3 - 06/16/09  3:59pm
" hi just wondered how your daughter and family was doing. in my experience my son did get pain. As a little boy it was easier to take care of but as he got older the pain at times seemed to be greater. i think that a lot of the pain is due to swelling in the affected areas. if you can control the swelling it helps. all the things that you described seems to be normal with ktw patients. everyone is different as far as the extent of there ktw. you probably will end up taking it day by day. that was the best way for us to deal with it. they're great kids and just enjoy them. always keep smiling. i haven't found a doctor that knew very much and it always seemed like a guessing game so we just haven't done any drastic medical procedures. hope this helps. God bless you and your family. Letitia "
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Reply #4 - 06/29/09  6:31pm
" Hi there,
My name is Christine. I have KTWS and am so surprised that so many other people have it too.
I'm 57 years old, and I only learnt that it's called KTWS two years ago when I had a riding accident in the states and was admitted to the mayo clinic. I'll be honest with you, it has dictated everything in my life, but never stopped me achieving the things I want to achieve. I've managed my condition very well with surgical appliances and surgery.
I'd love to talk to you on the phone or by email about my operations and the fact that my condition was very belittled by ignorant GPs.
And just so you know, surgical stockings don't cause any pain at all, in fact it's quite the opposite- they relieve you of the pain! In my case, they are an absolute neccessity to minimise the risk of ulceration. I've been so maddened by my local medical profession who referred to my condition as varicose veins! I was very lucky to have found a fantastic doctor as a child- Mr. Eirebrookes- who fused the growth plates in my left leg when I was 10, which allowed my right leg to catch up by the time I was 16. There's been too much in between then and now to write. My latest bit of luck was to have met a canadian doctor just by chance who had seen my condition many times and had been an intern in the mayo clinic so understood it very well, and was very frustrated by other doctors' ignorance, and had to write to my hometown consultant to tell him that a knee replacement operation he was about to perform on me would be disastrous. I never did get an apology from that consultant..
There IS hope, and there are medical people with knowledge, and we should all share it.
my email address is
christinerawle@hotmail.co.uk
I'd be more than happy to talk to you anytime.
Good luck and best wishes,
Chris "
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Reply #5 - 09/07/09  7:54pm
" hi, i know you must be scared, my mom passed out the first time she saw me.but from then on i was treated as i was normal. that really will help your daughter , to treat her as anyone else and have everyone else to do so if you can. just loveher,support her,be there for her and trust in God to help ya'll. i know with my kt it has taught me patience,to be humble,to see the good in people,to see the really important things,faith,family,friends. my motto is Faith is the ability not to panic and it works.thru all the surgeries,treatments,and tests,tests,tests.dont be so scared, God will give you the strength,and pass that on to your child. i now have 2 children,and 2 grandaughters. have been thru many scary moments but it will make you stronger with each problem you overcome.good luck and im glad i found this sight, ya'll are amazing, its great to talk or see other people like me. im 49 and had never known another with kt "

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