• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
Pilgrim
Reaction score
240

Profile posts Latest activity Postings About

  • Hi there:) I know I don’t know you from Adams cat but I’m struggling with the remicade infusions for my son. He had one induction did amazing despite the six pokes to get the iv. He then had an inflammatory bowel obstruction a few weeks ago and was hospitalized for a week. In the time he was extremely traumatized with ivs and now the infusions have taken a turn for the worse. He almost passed out …he is 7 and still a sweet squishy baby. We are going to try oral versed next to see if that helps. But after that I don’t know what else to do. In the hospital they did anesthesia to get an IV and that traumatized him even more so that is off the table for my husband and I. I guess my real question is lolol…..humira. My doctor wants to do the remicade and says that works best buttttttt what about the humira? His last mri when we left the hospital looked beautiful (after other one infusion and high dose steriods during the hospital admission) so I feel like humira is going to be a good alternative …..how has the humira been for your little?
    Pilgrim
    Pilgrim
    My daughter started Humira as her first biologic drug at age 4. She had 6 good years with Humira -of course we had dose increases and sometimes we had to add Methotrexate to keep things working.

    We would have started with Remicade but we live so far from the children's hospital and needed to have another option.

    It's so hard when they are so little. My advice isn't probably what you want to hear but there are so few options for Crohn's kids as far as medications with a good response and I think if you can keep him going on Remicade it would be wise. Once Remicade stops working then you have to switch and deal with the whole worry about bad reactions to the next medication plus waiting for the right dose adjustment that works....meanwhile sometimes they get sicker while you're waiting for everything to work.

    Can the hospital bring someone in who knows how to help with needle trauma? Or maybe a really good bribe for after his next iv?

    I've found it helps if I'm calm for my daughter, matter of fact about it, and a bribe doesn't hurt. She hates iv's and is hard to stick...we make sure she's hydrated beforehand. Sometimes it helps but mostly it just gets easier when they feel better.

    My daughter is now 12 and has moved to the drug Stelara. It took over a year to work but it's going well.

    You can send a note anytime.
  • Loading…
  • Loading…
  • Loading…
Top