Hi I am new to the forum but want to say I am not new to PWS..my daughter (she's 5) has one on the left side of her face. She has been tested for glaucoma, and for SWS and doesn't have either. She has had 5 surgeries in almost 3 years..which honestly I don't feel that's enough for us to take an aggressive approach...we are getting ready to go in for her 6th one tomorrow. She is being treated at the Boston Shriners hospital. They are truly a wonderful group of people but then again it's hard to get in there bc they are a burn hospital. So here's my questions for you....we just recently changed insurance, I am going to try to find out if they will cover it, and if they do, does anyone know of a good doctor in the Rock Island,IL area or even in IL for that matter that I can take her to? I don't want to stop the surgeries at the Shriners hospital but she's starting kindergarten this year and I want her to be at the maint point before she goes into 1st grade. My next question is...with it being summer time i have noticed that her PWS has darkened quite a bit lately. Does that happen w/the sun? I only use suntan lotion on her w/an spf of 45....she actually said something to me about it the other day...it was almost like she was upset bc of it darkening. How can I handle that w/o making her feel bad? I have never made it seem that her birthmark is a defect or anything like that matter of fact in our house we have a saying...she walks around singing it..."I am beautiful w/my birthmark, I will be beautiful w/o my birthmark..doesn't matter what's on my skin....it matter what's in my heart. Mommy and daddy and sissy love me both ways." Don't know what tune she sings it to lol i think it's one she made up...but how do i continue to encourage her about it?
Okay this probably sounds really stupid to all of you but i just really needed to ask.