Is PWS causing my daughter's lip to bleed?
Hi. I'm new to this board and I'm hoping you all may have fedback for me. My 11 year old daughter was born with a large PWS, bilaterally, on the lower half of her face. She's had numerous laser treatments and two lip reductions. Unfortunately, though, her lower lip keeps thickening; It's not even been a year since her last surgery. If she has any more surgery to reduce her lip, it'll leave a scar on her chin. She'd really like to avoid another surgery for now which I can well understand because the recovery is difficult and also she would have to have her braces removed for the procedure. But recently, her lip has started to bleed. I think it's chapped and I suspect she picks it, although I'm always nagging her not to and plying her with Vaseline and Chapstick. I suspect this is related to her PWS and am wondering if any of you, or your kids, have experienced this? Of course, I contacted her doctor and am waiting for a response but I'm wondering:Is surgery the only way to resolve this? I understand that her PWS is hormone fed and will keep growing at least until she reaches puberty but how many times does a person with this condition typically require surgery? I feel terrible for my daughter and am worried that we'll never adequately resolve this problem for her. Thanks so much for any help you can give me.