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Indeed the pen is awful! My son was 10 when he started Humira and the nurses did the loading dose with the pen and it was traumatic. I use the syringe and go slower, ice up for 20 minutes while the Humira warms, which helps, but it does still burn. Almost added the lidocaine, but decided against...

It's truly scary, I know, sorry. Steroids really are worse in terms of side effects. Remicade is great when it works. You can ask for a numbing cream to put on ahead of time to help. The infusion is really rather easy after the IV insertion. There's a sticky here on treatments, remicade is here...

Latest research is that combo meds help reduce likelihood of antibodies to remicade with mtx now the safer choice instead of 6mp, so it's probably worth the side effects/risks. My son's doc wants him on mtx combo with Humira, but he's doing really well with Humira as monotherapy and the...

I don't see how the esophagus/stomach issues and the ileum ulcer are not enough to point to Crohns, but then I'm not an MD either, so... The fecal calprotectin test is accurate on stools that are not loose, how ridiculous to say that ... What's her bloodwork like? SED rate? Has the omeparozole...

Welcome! My son is doing well on Humira, 3.5 years now. I hope it works for yours! Be aware the injections really hurt. It's not the needle pain, the medication is acidic and burns. It will be quite shocking. The nurse does the loading dose, probably with the epipens. But for the maintenance...

Maybe try an appetite stimulant like Periactin/cyproheptadine before changing the Remi dose? He may eat more during school, but is he also more active with PE/sports etc?

Jumping in to say Yes too. My son had no bowel or pain symptoms, dx after fistula and abscess, also growth failure. Agree that you need to do an MRI or fecal-cal and get a dx. In the meantime, you could try probiotics and/or a stool softener. Push lots of water and fruit juice, except for...

Interesting article about 4 strains of gut bacteria missing in asthma patients. Wonder if IBD will be soon? Or maybe genetics determine which strains can thrive or not...

3 years later and still using successfully. He did combo with 6mp for a year and that pushed his protein levels to normal, then went to the adult dose - 40mg/ml. Still using the syringe and I'm still administering it. All's been good. Bloodwork is now every 4 months, as are checkups with the GI...

Glad Humira seems to be working for him. My son had high eosinophils for about 6 months last year. The GI wasn't too concerned. He has seasonal allergies and his asthma was bothering him more than usual too. It's back to normal at the moment. Hope your son has a happy and healthy Golden year. :)

It's a good idea to check in with an endocrinologist, ask your GI for the referral. We go once/year. You want to catch it before his pubertal growth window closes. We've checked my son's hormone levels and bone age (hand xray). He is steadily 2 years delayed (no catch-up growth for him after 3...

I'd think winter babies would be more likely, less Vitamin D? Anyway, December here. And ABX nearly every month the first year for ear infections.

Kind of random, but a friend was having similar issues and it's looking like abdominal migraine. Pretty rare in adults, really common in kids as a precursor to traditional migraine. Something to consider with GI and neurologist. Does she get migraines? Are there specific foods she's eating that...

Welcome and sorry to hear about your son. Sounds like his current medications aren't working, it's so easy to get lost in the other details! Follow up with the GI, or a new one if need be. Hope you get him feeling better soon.

So sorry to hear! Nodules can be a risk from the MTX, right? Would they shrink if he stopped taking it?

So frustrating and I'm sorry for you and your son. You could get a 3rd opinion, maybe a Mayo clinic near you? I think it could still be IBD, growth failure is from lack of absorption, which is mostly done in the small intestine. My son had no symptoms, we missed the growth failure, until he had...

Thanks Crohnsinct. I don't know the dosage yet, but it would be oral. His psoriasis was worse while on Remicade (mono). Since he built antibodies to Remicade, it seems adding mtx wouldn't hurt. Wish I had a crystal ball... I should've added that we are going to repeat fecal calprotectin this...

Checkup yesterday and doc says latest research is that combination therapy is better. My son is doing fine on Humira alone, 3 years now (with 1 year of combo 6mp) but wants to add oral methotrexate. It will improve efficacy of and the long-term viability of Humira, reducing liklihood of...

I feel guilty about everything I'm doing "wrong" raising my children. :) IBD is not your fault.

lactose intolerance?