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Thank you for the replies! I certainly didn't mean to abandon the thread - life took over and then she flared badly Sunday night such that we had to take her to the ER. :( They've put her on a prednisone taper; she got dexamethasone while there and is feeling lots better. We've put in a call to...

Thanks, pdx! We're in Corvallis, commuting up to OHSU. Do you see GI's there or at NW Peds? I had thought methotrexate was for diarrhea, but I see that I'm wrong. Yes, it looks like we will have to add something else in - whether it's another drug, EEN or surgery. I think we'll decide once we...

Thank you, it IS very hard to figure out. I'm wanting to be sure we're not missing something and that it is relatively common to have difficulty achieving some symptomatic control after all this time. My poor kid!

Thank you - I'm so glad to hear some other options. We will definitely look into a second opinion, probably after her MRI. Thanks for the info about when to know if a food isn't tolerated. Unfortunately, she really has absolutely NO symptoms (no diarrhea ever, and absolutely no belly pain) for...

Thank you, Maya142! I'm hoping to hear from her GI within the next day or two about her thoughts on what's happening and whether the Remicade is helping. Some of my frustation stems from being told, at each infusion, "this is the one that will help her feel better." And then we're back still...

Hello! Our daughter (16 yo) was diagnosed in November after having non-specific mid-abdominal GI pains for over a year ("it's stress"). She had a CT and MRI that showed lesions from stem to stern, but most specifically in her terminal ileum; there were also signs of adhesions, but no fistulas...