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Recent content by Pangolin

  1. Pangolin

    Parent of newly diagnosed kid

    I hope they try TPN + bowel rest or at least all-formula to try to stabilize things. I'd be throwing antibiotics at it as well. eg Cipro, flagyl, azithromycin, or amoxicillin.
  2. Pangolin

    My 10 year old Boy - prescribed Humira for life before any diet assessment

    It probably is the case that a majority of people here have noticed substantial positive effects from biologics. However, in my son's case only two things have had dramatic effects: EEN and antibiotics. Remicade may or may not have helped temporarily but simply didn't get him to remission, and...
  3. Pangolin

    Sibling being evaluated

    Sounds like the calprotectin has been elevated for long enough to be a concern. You know there's inflammation in there, and you want to make sure things are moving in the right direction. Perhaps an MRE and/or a colonoscopy would be in order to help you figure out whether things are getting...
  4. Pangolin

    Anyone's child fail 3 biologics?

    Entyvio is a good option--I'd try that before surgery. There have been reports of success with a combination of Entyvio and Stelara in very tough cases, although it's highly experimental and doctors would be unlikely to be willing to try it.
  5. Pangolin

    Should I be getting infusions at this time?

    Entyvio is your best bet for Crohn's treatment that isn't immune suppressing. It has little known systemic immune suppression.
  6. Pangolin

    Newly diagnosed (16 years old) boy

    Kiny, I've seen Entyvio work. In particular, after each of the second and third doses there was a rapid and unquestionable reduction in pain and reduction of stool frequency and liquidity. I'm very sure this symptom reduction was from the Entyvio. That said, it is possible that Entyvio is...
  7. Pangolin

    Heard from Doc today

    The standard induction doses are at 0, 2, and 6 weeks, and then it's supposed to be every 8 weeks thereafter. He's in a drug trial, and they're testing different doses. 200mg would be considered a standard younger/smaller pediatric dose. My guess is he's going to need more, but that remains to...
  8. Pangolin

    Newly diagnosed (16 years old) boy

    You really want the inflammation to go away, and steroids are not a long-term solution. An all-formula diet (called EEN here) is very effective at reducing inflammation. Entyvio is an effective drug that has less immune suppression and fewer side-effects than your other options. It's a good...
  9. Pangolin

    Heard from Doc today

    Great news. Seems like a good example here of Entyvio taking a while to work but eventually getting there. My son is on Entyvio right now. It's been 3 months at either 100mg or 200mg (blinded). We've noticed substantial improvements but we'd like to see more. So far he's had a good experience...
  10. Pangolin

    Struggling to find out what this "rash?" is (was on Inflectra for about 4 infusions)

    It may not be fungal, but the symptoms are suspicious and tests can't rule the possibility out completely. These things aren't easy to diagnose. Might as well try some butenafine cream and see if it helps--it's unlikely to harm you. Edit: of course, there's also a very good chance this is an...
  11. Pangolin

    Struggling to find out what this "rash?" is (was on Inflectra for about 4 infusions)

    Have you tried an antifungal cream such as Lotrimin Ultra (butenafine)? Alternatively, you could try soaking the area in vinegar (as long as it's not stinging too much) to see if that helps.
  12. Pangolin

    Heard from Doc today

    I wonder if there's any chance of trying, say, Stelara plus Entyvio. It sounds like the Entyvio has helped some but not enough. I know it's unconventional, but this might be a case to add another biologic like that.
  13. Pangolin

    Heard from Doc today

    I'm concerned that things sound like they're getting pretty serious, and she may be running out of nonsurgical options. This disease can be so hard to get under control. I hope things turn around for her soon.
  14. Pangolin

    Heard from Doc today

    Poor O. If you ask me, I think it might be time for a couple weeks or so of TPN and nothing by mouth, and possibly more antibiotics.
  15. Pangolin

    Remission start

    Since Crohn's results in increased intestinal permeability, food molecules that wouldn't normally get into tissues get exposed to the immune system. The result is that over time Crohn's patients do seem to become sensitive to a wide variety of foods. A big change in diet could definitely help...
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