PWS and oral tumors
My 8 yr old was born with a PWS on his left cheek- about the size of an adult hand an in the shape of a comet.It hasn't grown into a different shape- but it has grown with him as he's grown. We've had 23 laser surgeries on it. 2 months ago I noticed a growth on his lower gums- back where there are no teeth. We've seen many dermatologists, dentists, ENT's, radiologists, and they found that he has thickening of his upper gums- consistent with untreated PWS. Years ago the dr's told us they didn't need to laser in his mouth b/c it was not present there, and now they think his PWS is causing this enormous tumor to grow- even though the birthmark is not present near that area of his mouth. In 2 months its grown to the size of 4 grapes, it bleeds ALL the time, though we can control it, and its beginning to make him feel uncomfortable. Feb 1st they will be doing an angiogram and embolism to see if this tumor IS part of his pws, then on the 4th of Feb they will begin the tedious/dangerous surgery of removing this tumor. HAS ANYONE ELSE GONE THRU THIS??? Its incredibly rare, but not impossible. I'm just wondering if we're alone in this...