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I'm so sorry that you're having such a hard time getting a diagnosis and effective treatment. I don't have a lot to add to what the others have already said, except to agree that my daughter (with Crohn's) has never had an IBD panel done. She did have high inflammatory markers (ESR and CRP)...

Pilgrim, the two formulations of oral iron that haven't caused stomach issues for my daughter are iron gluconate and iron bisglycinate, but they don't provide as much iron per dose as other types. (I don't know if they are actually easier on the system or if they just are typically given in...

Really glad to hear about the formula change to Peptamen. I hope that helps!

All I can tell you is that iron is very confusing! Last time my daughter's iron was checked, her red blood count, hemoglobin, hematocrit, and iron saturation were all low. Something called just "iron" was also low, but I don't know if that's ferritin? She has also been feeling really fatigued...

Everything about this is crazy. They put in a G tube but they're giving her Ensure? She should definitely be on elemental or semi-elemental formula with the state of her intestines. No wonder she's feeling nauseated. Even if she can tolerate a really slow drip of Ensure, it's not going to be...

Thinking of you all and hoping for good outcomes!

My daughter was switched to Inflectra a year ago when she turned 18. I don't know if it's made a difference. Over the past 18 months, my daughter's health has slipped a little. I wouldn't say she's in a flare, but her calprotectin has been slowly rising and her iron and zinc levels have been low...

My daughter didn't have any problem with her vaccine (Moderna). Her arm was a little sore for a couple of days after the first shot, and she didn't have any side effects from the second shot. My husband and I both had Pfizer without any side effects, and my younger daughter (also Pfizer) felt a...

Hope she is doing better now. Thinking of both of you.

sorry that she is doing so poorly, but I think the plan sounds good. And in our experience, treatments can be synergistic, so I think it's great to do EEN and increased Humira at the same time. The increased calorie absorption due to EEN will probably make the more frequent Humira work better...

My daughter also doesn't like the taste of zofran. (I didn't realize that you can get it as a pill, Maya.) We just put it in a gelatin capsule and she swallows it that way. It doesn't work as fast as when you let it dissolve under your tongue, so we give it a couple hours before the shot.

400 mg every 8 weeks is actually already a pretty low dose (unless your daughter is quite small?). My daughter is on 650 mg every 6 weeks, and that is 10 mg/kg for her at 140 pounds. I agree that I would want a second opinion before dropping down any further. We switch to an adult GI this summer...

Hope the EEN buys you all some time to figure out what's going on and what treatment will work best. Hang in there!

I don't have any advice or experience to offer but would appreciate if you would let us know how it goes for him. My daughter's disease is also focused at her terminal ileum, and she may need a resection at some time down the road. I hope that his surgery goes well and leads to a long remission!

Yes, my daughter's psoriasis completely cleared with methotrexate added to her treatment. Hope the dermatologist can figure out what's going on.

Our GI encouraged our daughter to get vaccinated and didn't have any suggestions about timing or holding any of her meds. We asked if we could skip mtx the week after each vaccine and she was fine with that.

I wish some of these studies had included people on biologics + methotrexate.

So glad to hear he's negative! And yes, I am also the "constant warning" mom. My two kids and I just got our first vaccine shots too, and I feel like I'm constantly reminding them to keep being careful. Our case counts in Oregon are going up a lot lately with the new variants...

Take a look at the second page of the school accomodation fact sheet that I linked above--it has a list of the steps you'll need to take with the school. Go ahead and start that process before you worry about the actual plan, since it takes a while to set up meetings and fill out the medical...

My daughter had a 504 plan for all four years in high school. She went to a large public school and her counselor was well-meaning but not that pro-active. What that meant for us was that I always needed to push for our 504 plan meeting to happen each year, and then I always e-mailed a copy of...