Butterfly42, you've gotten some great suggestions here; I will send all my good thoughts your way that JonPaul and you will get the answers you need. Do find a good doctor; one that listens to you. I went through two GI's before I found one that I could team with. JonPaul sounds like a wonderful young man and I'm sure he's thankful that he has such an incredible Mom.
Thanks Sherry; I am just doing my job as a moderator -- to all others, remember not to judge.