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  1. Jenn

    Humira/Adalimumab Club

    Update to highly recommend the new Citrate Free version of Humira. It no longer burns and a smaller dosage, so no need for icing or warming or going slow. Still the needle pain, of course, but should save lots of grief, especially for kids. (Further update, now 7 years' on Humira and with 25mg MTX)
  2. Jenn

    Citrate Free Humira

    Took a bit to jump through insurance hoops after my son's GI told us of it, but my son (17 now, and 7 years of painful shots) has had it twice now and it's night and day, honestly. First time he said, 'that was weird', second time we didn't ice up and he said there was no soreness at all. What a...
  3. Jenn

    Out of remission and overwhelmed

    So sorry to hear, that is so stressful and being away from home too. Honestly, it seems Remicade is failing. Has he been tested for levels and/or antibodies? May be time to start a different med. He's not on a combo with Methotrexate? Or try steroids in the short term. Hope he gets back to...
  4. Jenn

    Elevated ALT (liver enzyme)

    Crohn's inflammation while on Remicade means Remicade isn't working right? I'd say it's time to try something else. Most times the symptoms are not obvious, which is why blood work is monitored. Ask the doc to run a blood level antibodies test too. I hear you on your concerns about adding...
  5. Jenn

    Success Stories

    *bump 7 years success on Humira for my son, and he's now 17, the time has really flown. Time to start thinking about transition to adult doctors (waaah!). There's a 'Citrate-Free', less painful version of Humira available now! Having delays in getting Insurance to switch to it tho, hopefully...
  6. Jenn

    Sticky Paediatric IBD - Articles and Research

    Article on the microbiome. https://www.nytimes.com/2018/04/06/opinion/sunday/germs-microbes-processed-foods.html
  7. Jenn

    Vaccines causing increase in IBD?

    As if the autism myth about vaccines wasn't enough? :) Vaccines are safe and do not cause IBD. Lots of things can cause temporary gastric upset. There is so much more at risk by not vaccinating.
  8. Jenn

    Sticky Paediatric IBD - Articles and Research

    Stem Cell Therapy for Crohn’s Disease Approved in Europe https://labiotech.eu/tigenix-alofisel-stem-cell-therapy/amp/?__twitter_impression=true
  9. Jenn

    EGD+C, difficult insurance

    Wisdom teeth extraction went well, seems to be recovering fine. 6 years' success on Humira now, but with some struggles. His Humira blood levels have come up, but still not enough, so we'll bump up to the full 25mg MTX (as GI wanted to do from beginning, but alas I'm so cautious and stubborn!)...
  10. Jenn

    In need of advice as to where to go from here

    The hives with grass and wool jumped out at me, have you followed up with an allergist? Food allergies can have intestinal effects, so just a thought. Hope you get it figured out soon and can begin to treat effectively wanted to add - for the mouth sores, try mixing a teaspoon each of liquid...
  11. Jenn

    Humira vs Remicade

    Usually insurance requires trying Remicade for kids first, then progress to Humira if/when Remicade fails. That's what we did. There are pros and cons for each, Remi infusion lab takes time, but nurses do ALL the work, which is nice, plus no separate bloodwork visits; Humira injections are...
  12. Jenn

    Wisdom Teeth Infected?

    wow! Sorry to hear it was so stressful. We just had a consult and scheduled wisdom teeth out for my son in Feb (16 in a couple weeks). Checking in with GI about stopping Humira/MTX and definitely doing abx. This is a great example for why not to wait til it's a problem, yikes. Hope he's better...
  13. Jenn

    EGD+C, difficult insurance

    updating.... the Humira levels were a little higher, but not enough, so we bumped up to 20mg MTX. He's tolerating it fine, will check again in a couple more months. Such a slow process. Everything else good though. And what timing, just as we get this worked out, we'll pull him off meds in Feb...
  14. Jenn

    Young Pilgrim's Headaches

    Hope you figure out it out and she gets some relief soon. Just an odd thought for something simple- but is her vision ok? Also, could be an allergy headache, maybe try an antihistamine?
  15. Jenn

    Chronic Headaches

    Sorry about the migraines. My non-IBD son started getting them when young, first vomiting, then the traditional head pain. We had him on imitrex, (nasal spray for awhile, then pill), and cyproheptadine for awhile too, but now nothing. He's really good at sticking to a sleep routine and staying...
  16. Jenn

    Will my son grow?

    Check in with an endocrinologist, even with the wait. We monitor my son once/year. It took awhile on Humira to reach remission, weight gain, and then finally height. He was 2 years' delayed and is catching up some now, but is still well shorter than his peers and shorter than his older brother...
  17. Jenn

    Athletes

    *bump* and tears! https://www.milb.com/milb/news/texas-rangers-jake-diekman-fights-ulcerative-colitis-and-gets-back-on-mound/c-252325144/t-185364810
  18. Jenn

    IBD and C-Section Kids

    Agreed, it's complicated. Last I'd heard at a talk, scientists generally think it's an unlucky combo of genetic disposition (inherent), with some environment primer (diet, antibiotics, pollution?), and a trigger (infection, then immune system never stops). Not that it can't hurt to try the...
  19. Jenn

    Afraid of Dr wanted to switch off Remicade

    Remicade usually does heal fistulas. People respond to the biologics differently so one of the others may be more effective for him and worth a try. My son had 8 weeks of IV antibiotics to heal his second fistula, before starting Remicade. The first fistula was laid bare after not healing after...
  20. Jenn

    New diagnosis for 15 year old son

    Hope it went well. It's a shocker in how much it hurts. We ice for 20 min beforehand while letting the syringe warm up. And syringe, not epipen to go a bit slower. Good luck!
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