Post Edited (EMom) : 5/1/2008 11:35:43 AM (GMT-6)
My son who is now 10 has been on Remicade for over 2 1/2 years now. He responded immediately and is doing fabulous. There is no way he could stick to a certain diet at the time being.....
He goes every 12 weeks. It has given him his life back. He is happy and painfree. He plays all sports. Does excellent in school and is just thriving.
I know how scary it is to have him on this med, but his quality if life is where it should be.
They may do things differently with with kids, but I've never had a numbing cream with my IV. Once you get past the initial pinch, it doesn't hurt at all. I go to my doctor's office, where the same nurse does the infusion every time. Ask if you and your son can take a tour of the infusion room/center ahead of time. That might make you both more comfortable.
My 13 year old son has had Crohn's for 2 years, and like you I struggled with the decision to put him on Remicade. However, after his colonoscopy in March it was very clear that the 6-MP, Asacol, and other supplements I was giving him just weren't working, and he is not willing to follow a drastic diet either. So, he had his first dose of Remicade last week. Although it is too soon for us to tell if it will work for him, I just wanted to let you know that the whole procedure itself was actually no big deal for my son. We were at the infusion center (located in the children's hospital) for 6 hours from start to finish. It took about an hour for the initial forms, tour of the center, etc. Then an hour for the pre-meds, 3 hours for the Remicade, and they made us stay there an hour after to make sure he had no reaction. My son actually had fun while he was there! There were 2 different video game systems, tons of DVDs to choose from, air hockey, board games, and a volunteer there doing crafts with the kids. The iv was on a pole with wheels, so he could move around as he wanted. They even gave us a free lunch which is provided by donors every day.
Please visit the www.dragonpack.com website as Writer suggested. There are many parents on there who have all tried different things with their kids and can offer lots of good advice.
Best of luck with your decision.