son with PWS on torso - what do we do?
I am new to the site. My son will be 2 years old next month, and was born with a PWS on three different areas of his torso, covering about 35% of his side, stomach and back. It seems really unsual to have a PWS on the torso. Does anyone else out there have a PWS on the torso area?
At his birth we were referred to a local dermatologist who recommended that we do nothing. Since then, I have struggled with knowing if that is the right the thing to do - treatment or not. My husband thinks I am being vain by even researching treatment, but the more I read the more I worry about how his PWS may become problematic as he ages and how much of a psychological effect it will have on him. His birthmark is not an issue at all when he is clothed, but now that he is a toddler and he lifts his shirt up for fun we are dealing with gasps and frantic looks from both strangers and friends. I took him to a hotel pool last week and a young woman asked me if he was 'sick'. I am not used to yielding these questions, and I am feeling very empathetic towards those of you who deal with this type of stuff daily.
Family is a whole other issue...His grandma's were both pro-treatment at first, and not accepting of his marks, but now that he is turning into a little man it seems to be less of an issue. His aunt has not even seen his marks, and I am happy for this - she is competetive with me and probably secretly gleeful that I am dealing with this. I am ashamed to admit that I cover him up when I can, both because I want to protect him and because of my own insecurities. I know other parents out there must feel this way sometimes too though.
I guess I am unsure about looking into treatment because I am unsure of what is best. Would it change things for you if you or your child's PWS was on an area of your body that was more hidden, such as your torso? Would you still seek treatment or would you have let things go and do the 'wait and see what happens' game?