Recent content by Maya142

How is H doing @Pilgrim?

I agree, it does sound like he needs a med change. His fecal calprotectin could be up because of the delayed infusion, but if Remicade was actually working, it wouldn't be in the 2000 zone. Hope you get some answers soon!

My daughter has pretty severe juvenile arthritis - now Ankylosing Spondylitis and Psoriatic Arthritis. Unless his spine is affected by his arthritis, then you could try with Skyrizi. The only thing with ALL the IL-23s is that they take time to work. My daughter had a bad experience with a...

@mrmar It really does take time to find the right combination. My daughter's IBD is under control now but we have dealt with flares and plenty of med changes. She is lucky though, hers has always been in the mild-moderate range. But she also has severe inflammatory arthritis and was on a high...

I absolutely agree - he should be seen at a different children's hospital by a pediatric GI! And I agree that hospitals affiliated with universities are more up on the research etc. My daughter was seen at a large IBD center (one of the best in the US) and her GI was not hesitant to change meds...

That's a high CRP @Catherine for arthritis. So I do think it makes sense to see your PCP, even though it's gone down. Where is your hip pain? On the side of the hip? In front, near the groin? Do any joints seem swollen, besides your fingers? Not all NSAIDs are created equal. My daughter has...

Most things MLP said are right about CHOP - I think - my kiddo was last hospitalized there a while ago! My kiddo also spent a fair amount of time inpatient. There are often activities like crafts organized by Child Life but if your son is too miserable to leave the room, then they can bring...

Iron can definitely cause nausea and constipation. But I wouldn't expect 1 pill to wreak havoc for a week, unless he's still really constipated. It sounds like either a GI bug, or maybe upper GI Crohn's inflammation. So glad you're on the GI floor. Believe me, it makes a difference - we once...

Honestly, when my daughter's Ferritin was that low, oral iron supplements did nothing at all. We tried several over several weeks and they just caused belly pain and nausea and constipation. Her Ferritin fell further from 6 (I think? I can't remember) to 3 and she was given iron infusions over a...

EEN and diets are so hard when they're teenagers. Glad she seems to be doing better!!! Really glad her arthritis is related to her Crohn's and doesn't flare independently. And way to go for doing so well in high school - my daughters were major overachievers too, despite all they went through!

My daughter also had pancreatitis, although not from Aza/6MP. She also had horrific stomach pain - she says she's never been in so much pain (and this is a kid who has been through a LOT - including 11 surgeries). She was also extremely nauseous and if she hadn't had a G tube we could drain...

So I’m confused - her inflammation is now in her colon? And there’s none in her TI? Have you stopped Stelara or is she going to be on both Stelara and Entyvio? My daughter has been on Entyvio (but years ago). She took with it with another biologic though, so her experience was not typical. She...

I also wanted to add - they can still increase your son's frequency of infusions - 10 mg/kg every 4 weeks is an option. Have they checked for antibodies? It sounds like his Remicade level is definitely high, but sometimes if there are antibodies present, you want it to be higher than normal...

Honestly, MTX when given for chemo is given in MUCH higher doses. It's not considered chemotherapy at the doses used for autoimmune arthritis and IBD. The doses are tiny compared to the doses given for cancer. MTX is a very safe drug. It's been used in the arthritis world for a long time, and is...

I would say if it keeps going up, then ask about further testing and even seeing a hepatologist. We were quite freaked out by her liver values (mostly because her Alk phos was so high, but both AST and ALT were high too) till we saw a hepatologist - he made us feel a LOT better. They're still...