Search results

I just went back to look at her labs from 2016. She had antibodies (low but detectable) on Nov. 30, she started back on MTX on Dec. 2, and her antibodies were undetectable on Jan. 13. She's still on infliximab today, 5 years later, although she's now at the maximum dose and may need to switch to...

I hate waiting too! My daughter developed antibodies to Remicade several years ago, after we dropped methotrexate from her combo treatment. After adding back methotrexate and increasing the Remicade dose, her antibody level dropped back down to undetectable. So antibody development is not a...

I agree about starting Remicade right away, while using either diet or prednisone as a bridge. My daughter used EEN (she actually did 90% EN and was allowed 10% food) as a bridge therapy and it worked very well for her. She did end up needing an increased Remicade dose, though, before reaching...

Thanks for the update! Always love to read them.

I'm so sorry that your daughter is having such a hard time. My daughter had a similar experience. She was diagnosed at age 12 in December, started immediately on Remicade, and got worse over the next month. She was in the hospital twice, and she ended up being out of school from January-June...

My daughter also deals with constipation and associated pain. When her Crohn's is flaring badly she has diarrhea, but once the Crohn's is more under control, she becomes constipated. Like MLP's son, she takes a mild daily laxative. In her case, lactulose works better than Miralax. She takes a...

I agree with Scipio!

Sorry that your daughter is in so much pain. I agree it's probably good that calprotectin has dropped, but 1040 is still really high, and 3 Remicade infusions probably isn't enough to have calmed her inflammation yet. Is she on any other faster acting treatments, such as steroids or EEN? She may...

I just wanted to add some context to this. This is from the CDC website: --------------------------------------------------------------------------------------- Reports of death after COVID-19 vaccination are rare. More than 369 million doses of COVID-19 vaccines were administered in the United...

I have a 19-year-old daughter who has Crohn's. She's been on Infliximab + methotrexate for about 7 years. She started at 5 mg/kg every 8 weeks, but she needed to go up to 7.5 mg/kg every 6 weeks to reach remission. She was on that dose for a long time but has been flaring lately and is now on 10...

I meant to add that depending on how much time you have as parents, I think that homeschooling might be a better choice than virtual school for 5 and 6 year olds. You don't need to spend too many hours each day to cover the academics, and that leaves the rest of the day for group activities...

Yes, having a kid under 12 this school year makes decision-making so hard, even without adding IBD into the picture. We decided last summer to keep both our kids home last year, even before their schools (college and high school) made the decision to go fully virtual. Even when our non-IBD...

@Lisa: my daughter developed psoriasis on her scalp (especially behind the ears) after she started Remicade. Adding methotrexate completely eliminated the psoriasis.

My child was also diagnosed at 12. The first year was really hard for us too! Hang in there--things will get better. This forum has been a great resource for me; I hope it will be for you too.

My daughter has a short stricture and has had several partial obstructions and one total obstruction. With a total blockage, your son would not have diarrhea (I'm assuming that's what you meant by D?). The time that my daughter had the total obstruction, she was vomiting every 10 or 15 minutes...

I'm sorry that you're having such a rough time. My daughter is 19 now but was also diagnosed at 12. She started on infliximab right after diagnosis but it took more than 6 months for her to get to remission. She ended up needing to do EEN (formula only) for several months, to add budesonide for...

Third shot done for E too. We had to travel a bit to find a pharmacy that was already doing the 3rd shot and that had Moderna, but it was easy once we got there. This was also good timing for us with med spacing.

Yes, she'll be on campus this year finally. Her school is on quarters, so she doesn't start until the end of September. She's disappointed to wait that long, but that will give her time to have 2 infliximab doses at the new interval. Kaiser just opened an infusion center about 30 minutes from...

Yes, Remicade can heal fistulas in some percentage of cases. One study I saw said that higher trough levels (10-20) are associated with increased fistula healing. E's level before the dose change was 5.6. Her new doctor aims for a level of 10-12. 650 mg is already just over 10 mg/kg, so we're...

E has been in a weird flare for the past year. Her calprotectin has been slowly rising; it actually hit 1090 in the spring and then dropped back to 650 a little later--still way too high. Her iron levels dropped in the spring too, and she was feeling fatigued. But she wasn't really having any...