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  1. Pilgrim

    Flu shot stop mtx for two weeks study -stopping improves flu shot results

    Ugh. Flu shots today. MTX for one and Humira for the other tonight. And MTX kid gets weekly Humira Monday. No way to space without skipping a dose. I'll just have to make my best call.
  2. Pilgrim

    Flu shot stop mtx for two weeks study -stopping improves flu shot results

    Anyone know if this is true for Crohn's?
  3. Pilgrim

    A Cautionary Tale

    I am so glad you came back to tell us this story - thank God she is ok. I also wonder what about her return to North America might have set off the Crohn's. I am buying Vitamin D for my H tomorrow! We always wait until she has tested low to supplement. Going to stay on top of it...
  4. Pilgrim

    Heard from Doc today

    Thanks MLP!
  5. Pilgrim

    Heard from Doc today

    That is fabulous news! Also thank you for being so detailed about what works and doesn't. I hadn't heard about the antibiotics and VEO disease..very helpful to know. I hope she has a very happy birthday and I am happy it sounds so...normal!
  6. Pilgrim

    Anyone have a Normal Fecal Calprotectin Level but diagnosed with IBD?

    Both my Crohn's kids had at least one visibly good scope (I think we're up to 7 scopes between them) where I've been able to dream of real remission but have then had active Crohn's show in the biopsies. This is with great bloodwork as well. It's not over until the GI brings the pathology...
  7. Pilgrim

    Anyone have a Normal Fecal Calprotectin Level but diagnosed with IBD?

    Yes, we have both a son and daughter with Crohn's. My daughter was diagnosed at 3 yrs old (she is almost 10 now) and her older brother was diagnosed at age 9 (now is 12). We have a large family and these are 2 of 7 siblings. We have had one other tested but not scoped and she was found to be...
  8. Pilgrim

    Anyone have a Normal Fecal Calprotectin Level but diagnosed with IBD?

    This is not exactly the story you are looking for but my son, when he was 9, went through a long period of persistent abdominal pain which caused a ton of anxiety for him. He had some off and on diarrhea and some small accidents as well. His blood work was all fine. The GI felt it was...
  9. Pilgrim

    School or college reopening Fall 2020 immunosupressed

    It's probably good the wake up call came right away.
  10. Pilgrim

    School or college reopening Fall 2020 immunosupressed

    One of the BIG unanswered questions with us is...with 2 children having Crohn's and missing between 20-30 school days each per year (normal cold and flu, appointments, plus just "off" Crohn's days) we don't know if each time we call them in sick if they will have to have Covid-19 testing before...
  11. Pilgrim

    Much Ado About Nothing! eh!

    We did IKEA this weekend too! No college kids right now but planning to redo space for our youngest two daughters who share a room and we wanted to add individual desks in for the future probability of online school. I wish we had thought to go a few weeks ago before the college kids! Stock was...
  12. Pilgrim

    School or college reopening Fall 2020 immunosupressed

    We are in a low transmission area. Our schools are cohorting with an option of fully online school. Masks required all day for grades 4-12. The kids (Crohns and non-Crohns) are heading back early September. I figure we see how it goes and I can pull them out if need be. We did opt of of...
  13. Pilgrim

    Heard from Doc today

    They will both do NG Tube???!!! That is great news. It will leave no stone unturned!
  14. Pilgrim

    Sibling being evaluated

    I'd love to see how calpro changes on my kids every day for a month! Bet you feel the same...in theory anyway. Sometimes I rely oncalpro and sometimes mistrust it. Interested to hear what GI says about T's result.
  15. Pilgrim

    🤦‍♀️ Calling all moms with daughters. 🙄It's finally happened.

    I just refuse to believe she has grown up this much!🙈
  16. Pilgrim

    Heard from Doc today

    I have read quite a few stories of kids that have ended up having surgery and the overwhelming sentiment was that they were so grateful to have control of their lives again. I hope that it goes very well for O and I can't even imagine the heights she will reach without disease weighing her down!
  17. Pilgrim

    Parent of newly diagnosed kid

    I will add we have considered moving to Inflixamab. What stops us from doing that is the desire to completely run out of possibilities on the first biologic so that we don't run through too many drug options too quickly. Lifelong disease....
  18. Pilgrim

    Parent of newly diagnosed kid

    She usually shows improvement within 4-6 weeks after starting, or a dose escalation, or a med addition (like MTX). My thought is that you may not have seen a great improvement on a biweekly dose. In our experience, our daughter needed to be weekly by about age 6. It's a weight thing sometimes...
  19. Pilgrim

    Parent of newly diagnosed kid

    I would give weekly Humira a good try possibly adding in Methotrexate before giving up. We have had a lot of success with both dose escalation and adding the immune suppressant over the years. Our daughter started Humira age 4 and still having success at age 9. Right now she takes 40mg weekly...
  20. Pilgrim

    Heard from Doc today

    Calpro is mysterious. I hope things improve again. She has bounced back from worse.
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