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  1. Pilgrim

    "Oh...so that's where you ended up." My intro to duodenal Crohn's

    So we got H's biopsy report and now the Crohn's has ended up in the duodenum. New to us. Her TI is healed and the colon and stomach look good this time (colon shows chronic but not active disease). There is shortening of the villi in the duodenum, and inflammation but not ulcers. She has been...
  2. Pilgrim

    Question about arthritis and Crohn's

    H has had chronic swelling in her ankle, mostly left but sometimes she complains about the right one also. For years it was just pain but in the past few months there is fluid. So she has xray next week and then GP will send info to GI. Meanwhile GI called to set up a conference on Friday. Her...
  3. Pilgrim

    Shingles

    Little H developed shingles. We ended up at children's hospital to see the infectious disease specialist. It devoloped in an odd way, working up her body as well as around one side. We had to drop her Humira and Mtx this week at least. Hopefully, it won't cause a problem with her response. She...
  4. Pilgrim

    Little Pilgrim's First Overnighter

    H and I are in hospital tonight. She has what seems like a virus and just can't keep food in her. She had her consult today, so she is staying in pediatric hospital at least tonight. She has lost 5 lbs in the past week. Her vomiting is worse in the morning when she wakes up. She was vomiting...
  5. Pilgrim

    Pediatric Pain Clinic

    C has been on 40mg of Pred for over 2 weeks and his pain has not changed. Possibly, it's worse. Labs are fine, small bowel is great, scope showed relatively small ulcers in TI, right side colon. There is no pain clinic for us to go to, and I am not getting help from GI team. We are seeing a...
  6. Pilgrim

    Skin smells

    My daughter developed a poop smell on the top of her head. At first, about a week ago, I thought she may have gotten some on her hands and into her hair (although she is typically very clean). But after several showers, the smell persists. I think it might be coming through her pores or hair...
  7. Pilgrim

    Anxiety, Crohn's, and our Children

    If anyone can help, my undiagnosed son is suffering from anxiety. I am wondering if any of your children have suffered with this prior to or after diagnosis. How did you deal with it. It is very tough. He is in chronic pain, but not really having bathroom issues. Thanks.
  8. Pilgrim

    H's Brother

    He's had weird issues pop up, but lately over the summer and getting much worse over the past several weeks is abdominal pain. He was prescribed Zantac for possible GERD which just doesn't make a dent in the pain. We're getting a referral to GI, labs (not fcal unfortunately ),and an abdominal...
  9. Pilgrim

    Young Pilgrim's Headaches

    A few weeks ago H developed headaches. I realized it was happening every day, and started writing them down a week ago. Every day headaches, light doesn't affect them, no aura, maybe worse with exercise, food doesn't hurt or help, she has said head is still hurting when she gets up to pee at...
  10. Pilgrim

    Vitamin testing

    We did a bunch of labs when she had her GI appointment, as we usually do. Then they send me a letter asking for me to get her vitamin E tested. Does anyone know why? It struck me as odd!
  11. Pilgrim

    Vitamin E issues?

    Did anyone require supplementing vitamin E? If so what other deficiencis did you have and what was your disease location? Thanks!
  12. Pilgrim

    Worrying is contagious!

    I am falling prey to the opportunistic infection worries! She has moderate ear pain after weeks of coughing. Normally with the other kids, I would wait it out. No fever. Should I wait for a Crohn's kid? New to us....
  13. Pilgrim

    Another go at SCD

    We're giving strict scd another go. We started a few weeks ago, and she's on Humira, Mtx, and Budesonide as well. I'm wondering if any other parents are revisiting it or already seeing some success. It's been tough but reminds me of the psychological hurdles with EEN. I feel like we just got...
  14. Pilgrim

    More Little Pilgrim's Progress

    I received our call from GI this morning. H's fcal is down to 1200 from 1500, so still dropping - but still high. He wants to add a therapeutic dose of MTX - 15mg injections. Also keeping her full dose of Humira to every other week. I thought the dose sounded high but I'm not the GI. Bummed...
  15. Pilgrim

    Bleeding after injection

    I gave my daughter her injection, and after pulling out the syringe there was some bleeding and an immediate bruise forming. Did I hit a vein? What happened?
  16. Pilgrim

    Another Sibling Another Worry

    I posted some months ago about one of H's sisters with periodic vomiting. GI prescribed PEG and after the clean out she was fine. No Crohn's. Now we have our 8 yr old son developing fecal incontinence. He's has a bm, often D, 2-3 times per day. Over the past several weeks I've seen signs of...
  17. Pilgrim

    Talk to me about your naturopath experience.

    I'm posting this here because I am making an appointment for my 5 yr old Crohnie. I want to hear your experience. It doesn't matter if it's a kid or adult experience but what treatments did you do and how did it work?
  18. Pilgrim

    Young Pilgrim on Entocort

    We were so fortunate get through two years of this disease before steroids. She is on her last two weeks of taper now. I noticed HUGE improvement with her bowel movements, appetite, and mostly her energy. I never imagined we could all enjoy hiking and camping together because she could never...
  19. Pilgrim

    Bladder control and Entocort

    Just wondering if anyone had bladder control issues connected to Entocort? My daughter was never a bed wetter but now there have been two incidents since starting the drug.
  20. Pilgrim

    Taking Entocort in the evening?

    We weren't told to have her take the Entocort in the morning specifically, so she has her dose at supper time. Our thinking was that she would sleep off more of the side effects. She woke up last night hungry and dizzy. I wondered if anyone had a problem taking their dose in the evening and...
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