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DS also was tested and had zero remi in his system at 8 weeks, so his GI upped his dose to 7.5mg/kg AND he went from 8 weeks to 6 weeks, but he had also just had a growth spurt that put him over 50kg. The GI also added a tiny, weekly dose of methotrexate and everything has been great since. If...

Ok, I'll give endo a call. Maya, you're right, his disease has been in the small bowel. I'm guessing his GI will order an MRE and require some sort of supplementation. I just don't want to be in the room when he does!

It's been awhile. DS is still on Remi (7.5mg/kg, 6 weeks) and mtx and has been feeling fine. His last scopes were just over a year ago and microscopically everything was great. Last MRE was... maybe 5 years ago? Last endo appt was 5 years ago and the bone scan said he was only 2 months behind...

What is his Remi dose? I'm guessing 5mg/kg? The nice thing about Remi is that it's pretty flexible and you can increase and decrease as needed. Some kids burn through Remi and need to be bumped up (my son is 7.5mg/kg every 6 weeks). There is a text that can check Remi levels and antibodies. It...

My son does pre-meds, but I was told it's because he had started building antibodies at one point and now he's considered high risk for a reaction. Does that sound right?

Oh my goodness... your description of your son was like reading a bio of my own son! The only difference was we got the Celiac and Crohn's dx at the same time (age 8, now 17). He went GF immediately and felt great and grew for about two years. Then the vomiting started. First monthly or so and...

Not twins, but jmrogers son and husband both have Crohn's.

I'm just going to second everything MLP (my little penguin) said. Pediatric Crohn's is it's own animal with unique considerations for growing kids. Sometimes, it's even hard to compare it to adult Crohn's. I'm not saying that your SIL might not have valuable info, but keep your end goal in mind...

My son is also on a methotrexate and Remi combo and doing well. He only takes 1mg of folic acid daily (I see others take 2mg). He's never had any side effects. The only thing I've found a tad annoying is that his mtx prescription always gets flagged at the pharmacy and I have to "chat" with...

I guess I wouldn't be too concerned just yet. We've had the occasional blip here and there and usually by the next blood draw things are back to normal again. It sounds like you're having great results with Remicade!

We submitted the EOB and itemized statement from the hospital for DS' last two infusions like I've always done in the past (but we have a new insurance company this year) for the Remi reimbursement program. I got a letter today saying Remi isn't able to process the request because the "document...

Weight was a factor in DS' bump to 7.5mg/kg. He was hovering just under 50kg and the breakpoint for an increase was 50kg. I don't remember the details, but his GI had to follow some pretty strict protocol and couldn't up the dose without approvals (from insurance?). Anyway, DS finally, broke...

My son had a stricture that had to be surgically removed, BUT... we had his GI, his surgeon, and a radiologist all looking at two MRE's over the course of two years to determine if it was really necessary to remove the stricture. Surgery is a big deal. The tricky part is determining whether it's...

DS has labs drawn before every infusion as well. Hep panel, CBC, ESR and CRP. Quite honestly, DS is doing so well on Remicade that I feel like even skipping labs would rock the boat!

My son is given a Benedryl tablet at the infusion center (along with Tylenol and Solumedrol) and is usually pretty tired after. He's always been the type of person who gets sleepy from it, but on the other hand my other son and myself get hyped up on Benedryl, so you never know! As for...

Sending hugs, Kim! Maybe the G tube will be the break you need? You are a great mom and support system for Caitlyn and we are all here for YOU. Hang in there, momma!

DS started at 5mg/kg every eight weeks. He kept petering out around 6 1/2 weeks (fatigue and nausea) so we had him tested and he had no Remi in his body at 8 weeks. His GI bumped him to 7.5mg/kg and every six weeks and he's been great since. I think that's part of the magic of Remi is that you...

What y'all are saying is what I keep saying to DH and DS. They think DS occupying a stall in a big bathroom would be better than locking out a roommate(s) from a smaller shared bathroom while he's using it. Unfortunately, neither of them seem to remember the details of DS' flare ups! And just as...

What is her dose and schedule for Remicade? Like MLP said, most kids burn through it sooner that the standard dose. My kiddo is at 7.5 mg/kg and every 6 weeks. Have you had her levels tested?

We're going on 3 1/2 years of Remicade now. Crazy! Like others have suggested, be sure the dose is adjusted by weight as he grows. I guess I would lean towards the infusion center that you spoke of. The nurses their will be experts at pokes and understanding the IV directions. Beyond that, Remi...