Welcome Hugo's Mom!
This is a great place for you to be and ask as many questions as you have! Can't imagine what you must be feeling about your little guy. At least with a diagnosis you can start to move forward!
I agree with what most people said here about keeping a diary about what he eats, meds, and tests. Seems like every time you go to the Dr. it is good for you to have a copy of what's gone on! I have a file cabinet and I just file everything from tests, to hospital stays, and now my disability papers:(
I was dx in 05...but looking back...I was a miserable kid. I can look back in my life and see times that I was probably flaring and didn't know it. Possibly as young as 2nd grade for me.
One thing I'd like to add..is I keep a med list on my refridgerator..I update it every 3 months or so. My daughter (a nurse) insisted I do this. It's been a life saver! Everybody in the family know's that's where it is and I've used it many times in a hurry...cuz' when you need that information it's usually quick and you don't have time to go over and are usually in NO mood!:)
"Get busy living or get busy dying"
Dx in 2005 with Crohns after a Hysterectomy. Re-section in 2006...came apart so got to do it again! Frequent Kidney stones and Shingles... a new present as of 08-09 Diabetes Type 2. Total of 12 surgerys.
Imran, Asacol, Colestid, Bentyl, Lamotil, Paxil, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!