OK, I give up. I hate this disease. It makes no sense and it's so inconsistent and unpredictable. My 17 year old son started Remicade in May and was doing amazing. He had his 4th infusion a couple weeks ago and it did nothing. It's as if they forgot to put the medicine in the IV. He's having 10-12 bms a day and there's all the symptoms of a flare. He has a doctor's appt on Monday, but I'm afraid they're just going to put him on Prednisone again (which he REALLY DOESN'T WANT). Because this disease has turned me into a rather pesimistic person, I take this to mean the Remicade isn't going to work. So what's next? I know he's totally freaked out about
surgery and what if you have the surgery and something comes along down the road. He's only 17.
I just don't understand why NOTHING is working for this poor child and he just wants to be able to be a normal kid.