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Remicade and anxiety questions

Hello all,

My 10 year old son was diagnosed with Crohn's this last summer and has been on Imuran ever since. We saw his GI yesterday who said he is quite concerned that the Imuran isn't working. He wants to do a scope in a few weeks and, depending on his findings, switch to Remicade with Methotrexate. I have watched my son slowly back slide these last few months and had a feeling this was coming. What are your experiences with Remicade? What are the infusions like and how long do they take? How much time out of school does your child take for infusions? Also, my son has some serious anxiety about doing another colonoscopy/endoscopy. Do any of you have advice on how to help your child through those anxious feelings? Thank you!
My son was dx with Crohn's at age 18 and was immediately put on Imuran, remicade, ferrous sulfate, pentasa and probiotics. He has done well on Remicade and has no side effects. He is in college and goes back immediately to classes. The infusions (his are 8 weeks apart) take about 2 1/2 hours and he usually tries to do homework (but often falls asleep). I was very anxious about remicade but it has put his Crohn's into remission. He also was switched to methotrexate and that seems to be going well (7.5 mg per week). I am not sure how to lessen your son's anxiety but I know with my son (who is much older) the more information he / we had the better it has seemed to go. I hope it goes well and that remicade / methotrexate works well for your son!

my little penguin

Staff member
Your GI department should have a psychologist on staff that works with medically complicated kids
That can help a lot
A lot of it is about control
Ds gets to chose to not have iv done until he is knocked out
He gets to chose to have versed or not prior to the procedure
He gets to chose if he wants knocked out by gas (mask with the flavor)
Or if he decided he actually wants an iv instead

He gets to chose if he wants me in the procedure room when he gets knocked out

For the clean out he gets to pick the flavor of Gatorade from the list of approved flavors
He gets to pick a few new movies to watch
We make sure to have calmoseptine to use before every bm during cleanout to protect his skin

Ds was placed on remicade at age 8
He was dx at age 7
Loved infusions (no school nurses fussing over him tv time movies )
Infusions took 4 hours
Ds had his every 6 weeks
Some do every 4
Some get every 8

He did have an allergic reaction after 8 months and was switched to humira at age 9
And has been on it almost 4 years now with mtx

He is 13

Good luck


Staff member
I strongly recommend a psychologist too. Unfortunately, there will be lots of procedures and tests and these poor kiddos need to learn how to deal with it.

My daughter struggled with anxiety too. She was very against seeing a psychologist, but her GI insisted. It made an incredible difference! It took some time, but now she is very good at dealing with procedures/tests and all the stuff that comes with chronic illnesses.

In terms of the scopes, the prep is the worst part. Once that is over, it's honestly just like a nap. At our hospital, they put the kids to sleep with a mask - so they don't even get poked till they're asleep!

The prep is no fun, but my daughter passes the time by watching movies on an ipad in the bathroom ;). That helps!

Remicade is about 3-4 hours or so. My daughters both actually liked the infusions - it was a chance to watch TV and miss school and nap! They used to bring an ipad and a book usually. The infusion center also had TVs and toys for younger kids. The nurses made a fuss of them and brought them warm blankets and snacks.

The IV is the hardest part, but it's only once every 6-8 weeks usually. You can use numbing cream for the IV or Buzzy. Some hospitals have J-tips and we've never tried them, but parents say they really help.

My girls had no reactions or side effects with Remicade. No increase in infections or anything like that. It helped them both a LOT.

My girls both missed a whole day or school or sometimes half a day if we were able to get a late infusion slot. They went back to school the next day.

Good luck!
My son gets Remicade 1x a month. He misses a day of school. We do Friday because at first he felt bad for a day after but now he's fine after. We go to Luries children's hospital Chicago and it takes us 50 min to get there we do a 7:30 am infusion and I like going to this hospital in case he needs a doctor one is there. They accomdate his wishes and use heat packs to find the vein and sometimes a red light and a jtip to numb him before the iv goes in. We are done by 11:30 and he sleeps mostly. They have limited Saturday appointments which we did once before vacation. When my son is older we will have a nurse do them in our home. This infusion is good but my sons eats through the meds so he gets a high dose abs every four weeks. Good luck!

my little penguin

Staff member
They don't recommend doing remicade infusions at all in the home
Since there is always a high risk so anaphylaxis
The reason for it being done in a hospital with doctors nearby mare to try and prevent anaphylaxis if it starts early enough
I agree with the advice to look for a psychologist who specialized in kids with chronic illness, and also the advice about giving as many choices as possible. I would also try to find something that your son really enjoys to keep him occupied during the scope prep. We gave my daughter a really complicated lego star wars set that she worked on all day during her prep (on a card table set up just outside the bathroom).

Our Remicade infusions generally take 3 hours. We used to be able to go on weekends, but now we have to go during the week. We try to get the last available appointment at 2:30, and then my daughter only has to miss the last hour of school.

Good luck. Hope that the scope is not too hard on your son, and that the Remicade/methotrexate combo works really well for him.
My dd gets Remicade every four weeks.
You've been given greet advice and I'm sorry if I missed it but child life specialist are a great resource to utilize If offered at the infusion center or procedure/surgery room.
They're adults trained in how to deal with with kids and Maske it as painless as possible.
My girl handles procedures well but I still ask for them to be present.
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