Re: Laser treatment
Dr. Sidbury performed the tests yesterday, we like him a lot but are very sad to hear that he is transferring to Boston Children's in February. He'll perform the first laser treatment in January and we'll meet his successor, Julie is her first name I don't know her last, who he highly recommends. We're actually going to the Vascular Anomolies Clinic at Boston Children's in 2 weeks for a 2nd opinion on the laser treatment schedule. The recommendation from Dr. Sidbury in Seattle was for her to go under g.a. and start with the face, every other month, for 6-8 treatments and then see what happens. Not sure when they'll work on the arm, hand, neck, back and chest, he said we'd have to see how much she could handle at one sitting.
After reading other people's postings I think g.a. is the best course, her PWS is so big I don't think numbing cream would suffice, plus holding her down was pretty traumatizing for me and my husband. Going under g.a. so many times at such a young age is a little scary for us but we just have to trust our doctors and hope that when Kate is older she'll be glad we put her through all this.
I just have to say thank god for the internet, it has been so helpful and therapeutic for me to come to this website and read people's postings and hear their stories. Friends and family try to say the right thing but they don't understand, and it's helpful to see other people with similar conditions and seeing how well they are handling it. We love our little girl more than words can express and just want to make sure we're doing the best things for her now and that in the future we'll be able to talk to her about her PWS in a way that makes her a confident, happy young woman.