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maisiesmum 01-07-2007 09:57 PM

Daughters Port Wine Stain

I am mummy to Maisie, aged 8 months old. She has extensive pws on her left arm, hand, shoulder, chest and top of back, plus her thumbs are displaced. The specialist thinks she may have a very mild form of Klippel Treanaury Syndromme and that her arm may/or may not grow longer or fatter. They said she may have to wear a compression stocking on her arm if it gets painful in later life and that she can not go on the pill, because of the clotting factors,,,, not that thats anything to worry about.

We have been told that laser may not be too successful however they are starting her first treatment in 4 weeks. Myself and my partner just can not cope with this. I cant handle the stares, the comments, and Im too scared to take her swimming because when she gets cold it goes blue, and I cant bear anyone staring at my prescious girl.

Im in desperate need of some support from any parents going through the same thing. Please email me anytime

Thanks xx

michelle.karim 01-08-2007 10:07 AM

Hi Maisie's mum
Read your message and wanted to let you know that you are not alone.
My son Sam is 10 and also has a PWS on his left hand and arm - it too goes blue and darkens when his temperature changes. It is always a sign with him if he is unwell. We have recently visited Great Ormond Street Hospital in London to ask about laser treatment but were advised that it probably wouldn't work too well as Sam's PWS is quite extensive. Also that the hand is a difficult place to work on as the skin is thin and the swelling from the laser can be extremely painful. Sam is not at all bothered by his PWS and says that it helps him remember which one is his left hand! When asked by children about it, he simply explains what it is and that it doesn't hurt. (They are often worried that it is a burn and that it is painful.)
At school last week his hand swelled up and became painful and I had to collect him and take him to our GP. He thought it might be chilblains but I am awaiting a call from GOSH to see if they can advise. After Calpol and a hot water bottle Sam was fine.
Anyway, any time you want to chat please feel free. Michelle.x

debbiesuth 01-23-2007 01:18 PM

daughters port wine
hi my 2 nd daughter isabel was born with a port wine stain on her face, we where first told it was a bruise until 3 days later when the news was broken to me when my partner was at home there is a possibilatie she may have sturdge webbers syndrome as well, we are going to see a consultant today to find out where we go from from here. I have no idea, I understand how you feel you just dont know whats coming next well I shall let you know.

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