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