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We've made the switch and Humira is working great. But, I wouldn't switch until you're certain Remicade isn't working. Use it as long as you can. Usually, the frequency or dosage can be increased first or an immune suppressant added (like mtx or 6mp) to make it more effective. Looks like that's...

I'm so sorry, that is so hard. My son is older and is good about doing what he has to, but he did scream at the hospital middle of one night when they had to move his IV. It's traumatic. the numbing EMLA cream is a good idea. Can't really discuss it much with a toddler, but a little could help...

I think we all agree that the experience is worth whatever price for our children. It frustrates me that CCFA paid entirely for camp before and only stopped recently. They have the funds, they choose to use them otherwise, which I don't think is fair to the families caught in the middle of...

My son sees the GI about 3 times/year and check in once/year with the endocrinologist to make sure his growth is continuing and his treatment is continuing to succeed.

not exactly pediatric IBD article, but still thought provoking - impact on immune system in space. Might have study implications on disease onset. http://www.nasa.gov/content/study-reveals-immune-system-is-dazed-and-confused-during-spaceflight/#.U_JyuPldWSo

I'd heard this recently too. Both my husband and I have IBS and one of two sons has Crohn's

- sorry, this is really only for United States parents, but I am curious about what support other country organizations offer - Hi fellow parents! My son recently returned from another amazing trip to CCFA's Camp Oasis. I can't say enough good things about the life-changing effect it has on...

Camp Oasis. My son just got back from his 2nd trip there. It amazes me. edit Jul 30: ooooh, I am SO angry. Just got an email that CCFA is now CHARGING for campers. Seems they've lost their way. All good things.... huh?

Welcome and sorry to hear of your daughter. It can take 3-6 months for Aza to work effectively and it is SO so hard to wait. The lack of appetite and fatigue is indicative of disease activity. As is the joint pain, my son would have pains off and on too. Be sure to talk with her GI about this...

It shows how developed the wrist bones are compared to average. It's a more accurate age to use for the growth chart percentiles and expected final height. No, it won't tell you when growth will restart. Only effective treatment with weight gain would restart the growth process. My son's bone...

Humira can work where Remicade doesn't. Also, adding a 2nd immune modulator, like 6mp or mtx to the equation may boost the Remicade effectiveness. The combo is what helped my son.

Congratulations! Like most of life, you just have to jump in and hope for the best. :) The latest thinking is that there is a genetic susceptibility and disease gets triggered by the environment. Your child has good hope for a long life, better medications, and even a possible cure in their...

There's a difference between a flare and uncontrolled IBD with EIMs, I think. It's subtle, but after my son has been well for a couple years and a had a flare recently, where he was fatigued with headaches and mouth sores, I knew he'd gotten unbalanced but only for a short while before he...

When my son had repeated bouts of viral pinkeye, we postponed his Humira a couple weeks to let his immune system loose to clear it up. That might help if it's a virus, obviously not if its IBD related. I'd think the higher fevers are virus induced, IBD tends to be lower-grade just in the...

I agonized for quite awhile after dx about all the little things I could've/should've maybe done differently to prevent IBD in my son. sigh! I heard a fantastic talk a couple years back about causes. It was along the lines that genetics prime the system (make one susceptible) and inflammation...

My son had an abscess at age 8 that wouldn't heal after draining. Surgery showed a fistula so we followed up with the pediatric GI. Bloodwork indicated he was low end of normal with high sed rate. Then we scoped and got dx. In hindsight, there were other indications but we hadn't put things...

My son's cheeks and nose get pretty bad, especially with swimming. I've found bullfrog or the masking zinc oxide (stays white) stays on best. Dermatologist might know of a prescription sunscreen?

My bad, sorry. Yes, he has some scar tissue already and we are trying to minimize more of that. What I meant by cosmetic, is that we can't do much for the stuff already scarred/red. The redness bothers me more than it does him, no itching or pain. But we do still treat when it flares worse...

My son had this a few times early on. Are you using epipen or syringe? Humira has on-call nurses for questions, they know the meds and typical reactions better than GI does. It's probably fine as long as it goes away in a few minutes, takes a little time for the body to absorb it. Be sure you've...

Ditto here! My son has vernal conjunctivitis. We were treating it before his Crohn's dx. He's on Zaditor and we recently quit the daily steroid as it wasn't doing much anymore. We still use it for a big flare, mostly it's just cosmetic. Originally we thought he'd outgrow it, I guess it's fairly...