I fully understand how upset (and frustrated) you must be feeling right now. I had the problem of getting my son past the Dr to a specialist(Dr said it was heartburn) he finally got referred and more or less got diagnosed immediately then. My initial reaction was great there was(is) something wrong and I am not a neurotic mum and we have a name for what is actually wrong. Then came the reading and research and then I wished that I was neurotic and nothing was wrong!
I felt so much anger towards the Dr who had 'fobbed' us off for 2 1/2 years, a couple of months down the line now I am still cross although I haven't done anything about it-we still go to the same surgery but see one of the other Drs there. If, for whatever reason we did have to see him again I think I would bring it up but hopefully I would be a little calmer about it now.
One thing I have learnt is that there appears to be a lot of initial mis-diagnosis with this disease, it doesn't help but at least you know that you are not the only ones.
If you and your son are anything like me and mine, he will be quite accepting of the fact and you will do all the worrying for him. My heart goes out to you, as parents we tend to look at all the difficulties years down the line but what our children need is for us to reassure and stay positive for them(as PV said)
Haven't been here too long myself but they are a great group always ready to give advice and listen-sometimes it's easier to come here and express how you feel (get it out your system) and then be ready to support your child once more.
I wish you both luck