My son started Remicade in April and has had 3 infusions so far. Although Prednisone worked for him, we didn't want to keep him on it long-term. We also tried Entocort and 6-MP, as well as upping his dose of Asacol. Nothing really seemed to work for him. The Remicade does seem to be helping - not a miracle drug yet, but my son does seem to have more energy and just seems to feel better. However, he is still having loose stools 3 times a day, so I'm hoping that improves with more time.
Ben has no trouble with the infusions, and since we are at a children's hospital, there is a ton of stuff for him to do, such as Playstation games, DVDs, and air hockey! They even provode us with lunch for free. It takes us about 6 hours there from start to finish. Please feel free to ask if you have specific questions about the infusion, etc.
Something you should know that I learned the hard way. If you are in the U.S., there is a program called Remistart where the company will reimburse you up to $400 for the cost of each infusion (up to the first 8 infusions or one year). The amount reimbursed depends on your copay. I think it has to be over $100. Anyway, you need to register for the program BEFORE your first infusion, otherwise they won't reimburse you for it (they will only go back 2 weeks from the date of registration). Here is the website for Remistart. The info is near the bottom of the page. http://www.centocoraccessone.com/patientassist/intro.jsp
Also, please check out this other website that is geared for parents of children with IBD. The parents there have really been through it all and are very willing to share their experiences and advice. The site is http://www.dragonpack.com/ibdsupport/parents/index.html
Hope this helps!
I am not sure where you live but in Canada you can't get Remicade for the use in children. It was available but they now will not allow it to be prescribed to a child.
My son is on Remicade. He is also 10. He was diagnosed when he was 7. He has been on Remicade since 1 week after his diagnosis. He currently has his treatments every 12 weeks! He responded immediately to the Remicade. He is living a normal, pain-free life a 10 year old kid should. He is actually at Camp Oasis right now and is coming home tomorrow. It is the first time he has been away from us.
When he started the Remicade he was 4ft3 and 63lbs. As of 2 weeks ago he is 5ft and 110lbs.
Best of luck with the Remicade, I hope it works for your son as well.
Post Edited (Roni) : 7/20/2008 7:28:44 AM (GMT-6)
My son presented with stomach aches. Never had diarhea or blood in his stools. Lost about 5 lbs in a 4month period. Was a little anemic.