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Recent content by pdx

  1. pdx

    Iron Infusion for ACD (Anemia of Chronic Disease)

    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...
  2. pdx

    Heard from Doc today

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

    Iron Infusion for ACD (Anemia of Chronic Disease)

    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...
  4. pdx

    Heard from Doc today

    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...
  5. pdx

    Heard from Doc today

    Thinking of you all and hoping for good outcomes!
  6. pdx

    Remicade to Inflectra

    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...
  7. pdx

    Covid vaccination for teen kid

    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...
  8. pdx

    Heard from Doc today

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

    Heard from Doc today

    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...
  10. pdx

    5yo Son Diagnosed 1/20/21

    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.
  11. pdx

    Remicade - doctor wants to decrease dosage - is this a thing?!

    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...
  12. pdx

    Heard from Doc today

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

    Resection surgery scheduled

    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!
  14. pdx

    A Crohn's related skin question

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

    Pfizer vaccine and MTX

    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.