mylittlepenguin, thanks for posting the reference. I read through it and I see that there is a chance of him developing an antibody to the remicade, which will make it work no longer. It does mention that using methotrexate as a combo with it reduces that risk considerably, which is what we are going to do. But the 6mp and the methotrexate take months to develop a therapeutic level. And he has been on the budesonide/entocort for months already (since December) and Asacol, and is worse now than when he started. My husband and I have been reading like crazy about all this stuff, and we didn't really see another good alternative that will work quickly, and it sounds like the article is saying that doing this therapy early is a good thing for many. We are not really happy with our current GI office, but we couldn't get into the Vandy IBD clinic until mid June. So we can talk to them then, and determine if it really is a short term treatment, or if they think we should be continuing on with it. I just don't know what else to do at this point. I don't feel like our son can wait any longer. Is there another fast acting treatment that you know about we might not have considered? Our doctor said our insurance wouldn't approve Humira unless he failed Remicade. I didn't even see a treatment club for Cipro, so I am wondering how often that is really used for pediatric patients. And the idea of really strong antibiotics actually made me more nervous than biologics. lol Probably weird, but true. Anyway, I will be checking back tonight on the forum. I forwarded the link for the article to my husband to read as well. Because infusion is scheduled for the morning, anytime before then we could say no and do something else.
I hate making these decisions, honestly. So many variables and unknowns. A well meaning family member didn't help matters when she called me to let me know what her chiropractor had told her when they discussed my son at some sort of nutrition conference, that "the reason they are checking his blood values is to make sure they aren't killing him." I have a chiropractor I love, but I could have choked this unknown one for saying that. Yes, these medicines are risky. And I realize they are checking his cmp to make sure it's not toxic to him. But is that really necessary to say it like that? sigh. This family member is dearly loved, and was trying to be helpful suggesting dietary things INSTEAD of the meds. There are all these anecdotal stories of people curing their Crohn's with diet. And so there's part of me that worries we are subjecting our son to needless meds, when if we would JUST be willing to overhaul our diet he wouldn't need them. And if I knew that would work, I would in an INSTANT. Thing is, it's all a gamble, isn't it? If you don't do the meds, then the chances they'll need surgery are much higher. And knowing which med is the right one for your particular child seems like rocket science. Anyways, any info is appreciated with this stuff. My stomach is in knots about it all, tbh.
