Yea, that's the biggest problem, we don't know if, and if so, when it so going to heal / go away.
I live in Germany and have started to contact a "centre for rare diseases", which we have a few of in Germany. They have answered and the doctors want to have some findings of my derm, biopsy results (I'm only getting the biopsy tomorrow) and stuff like that. They probably wont fix me, but we'll see.
Best of luck to you and your son too! There are other things a guy of his age should be worrying about.. (as there are other things I at my age should be worrying about :)).