i agree with Corinne. I do have a high tolerence to pain. The laser treatment will hurt, but only for a short time with the V-Beam Pulse Dye Laser.
If you are interested in another opinon closer to home I would suggest checking out Dr. Perkins or someone in CA.
After reading the postings, from what you discribed about your daughters PWS I think the condition you where thinking of is KT syndrome not KTW (but I could be wrong). KT syndrome is related to Sturge-Weber Syndrome (SWS). A few componants of SWS is KT on the limbs, glaucoma, seizures, and PWS on the brain. I have SWS but only PWS on the brain. I grew out of my seizures when I was two and will always have the risk of them coming back. I will also always have the risk of glaucoma forming as well. The extensiveness of your daughters PWS sounds like she might have SWS but the only way to tell is by having a MRI with and without contrast. I strongly recommend getting to the opthmologest to get Kate checked for glaucoma. Going untreated can cause damage to her vision. Your opthmologest will be able to tell you how often she will need to get checked after her first appointment depending on her risk level.
There is a SWS section of this group. I am sure Glenda will chime in to talk more about it. If not I will let her know you might be interested in more info. Also, I wrote a paper on social issues that you might be interested in for the future. It is my website at www.hankspws.com
If there is any questions you might have please ask we are here for you.