Your thoughts, please. 10 yr old.

[Crohns dad]

10 year old on Remicade since 11/2021. Started at 10mg/kg every 8 weeks and it worked great. Reduced to 7.5mg and then to 5mg later on. After the change to 5mg we started seeing changes in his labs. ESR going up, iron going down, Calpro going up, etc. Asked about this over and over and finally did scopes which honestly, came back pretty normal. Things kept getting a little worse though. Changed dose back to 10mg at 8 weeks.

We got a referral for a 2nd opinion, his doctor changed before that, met with that doctor and put him on EEN and moved infusion to 6 weeks. Got a call a few days before his referral appt that we waited over two months this for that they scheduled him in the adult GI dept and no ped appts were available for that dates and it would be a couple more months so we cancelled

Looked like 6 weeks and EEN were working. ESR dropped, Calpro improved, etc.

Got a cough with no other symptoms back around end of August

Got thrush after that (8weeks later or so) in Late Sept/early Oct.

Then, Calpro jumped back up to over 3000 but ESR dropped some. Got a CT to see if he could do pill cam and there was some concern that he couldn’t due to small bowel but the CT was inconclusive. Decided to wait 3 months and repeat CT etc.

Started running evening fevers again, night sweats, coughing with no other symptoms and ended up in the hospital again. Repeated CT which showed small bowel was ok but maybe some inflammation in colon now. Endoscopy was ok was biopsies showed mild inflammation, no colonoscopy.

No infections, viral test negative, etc.

Got Remicade infusion at hospital, fever and cough subsided immediately, came home next day (this past Sunday). ESR up, CRP up, Calpro still over 3000, blood counts good, platelets good. They think virus caused flare but he didn’t have any virus symptoms except cough which seems to have been caused by Crohn’s.

Monday night (this week) pooped blood for the 1st time, ever.

No fevers, feels better, hurts when he poops, no more blood, no diarrhea Tues, Wed, or Thurs. Diarrhea tonight, no blood, hurt to poop.

The options seem to be a short course of prednisone now, maybe add MTX soon or change medications but doctor is weary of that since they have seen kids get worse when new meds didn’t work.

I am at a total loss. Remicade levels are in the upper 20’s, antibody testing has never been done because levels have never been below 7 on any dosage.

I’m extremely afraid that Remicade is not working well enough and that he will be bad off again before next infusion. I have no idea what to do.

Also, he’s ASD with sever sensory issues. He was drinking 50% Pediasure and 50% Kate Farms but will only drink Pediasure now.

 

[my little penguin]

My non medical opinion
Find another pediatric university based Gi with experience in ibd .
Your child has been flaring along long time.
If the ct was inconclusive they could have done a “dummy “ pill cam
It melts if it can make its way through so no big deal doesn’t get stuck
Changing meds is scary
Staying on the same med that isn’t working is worse
Right now they are adding things to push up the remicade
Given your child is on een already
Remicade should be good but it isn’t
Given the cough and other weird things have you looked at chop .
They have a “dirt” team
Basically so much easier -they bring all the specialists to you in one room -one at a time and you don’t need to repeat yourself -they talk in between.
My kiddo when he was a lot younger saw -Gi /immunology /rheumatology /genetics /nutrition and I think one more all within 2 hours
He has multiple autoimmune disorders and one auto inflammatory disorder so everyone wanted to check as a team .
They then make recommendations back to your normal specialist group .

my kiddo was dx at 7
Remicade at 8
Humira at 8 3/4
Humira plus mtx at 10-14
Stelara plus mtx 14 to present -about 7 years
Plus changed biologics for the auto inflammatory disorder more than once

my point taking a med that isn’t effective is taking all the risks of the drug but none of the rewards or benefits

we drove over 6 hours for one of my adult child’s specialists for close to two years .
Keep in mind you only see the specialist every 4 to six months so not that bad .

I know other parents who traveled multiple states -again 2-3 times a year not too bad .

hugs

 

[my little penguin]

If we suspect you have strictures or obstructions that will limit capsule movement, we give you a dissolvable, dummy capsule first. If the dummy capsule gets stuck, we can locate it via X-ray and note the location of the stricture without any complications. It will dissolve and be absorbed by the body within a few days.

https://www.marcusgi.com/pillcam-capsule-endoscopy/

 

[my little penguin]

https://www.chop.edu/centers-programs/immune-dysregulation-program

 

[Pangolin]

I regard this as somewhat similar to my son's situation, and I believe Remicade was at the root of the problems.

 

[AEisen]

I am familiar with some diet approaches to include trying with autoimmune also redundant colon . I my family SCD type diet without dairy has help considerably. Seems each person is individual with this.

 

[asadmom]

Did you get a chance to see Dr. McGreal? She recently left to start her own so all her kids are moved to a different doctor. Not sure if you got to see her but let me know if you want to see our new doctor.

 

[Crohns dad]

No. We waited about 2 months for that appt and a day or two before it they called and told us they accidentally scheduled him with her adults and she couldn’t see him as an adult so it would be about two more months.

Our Dr at UNC changed during that first two month period though and he has been really great, honestly.

Are you still seeing a Dr at Duke?

 

[asadmom]

No. We waited about 2 months for that appt and a day or two before it they called and told us they accidentally scheduled him with her adults and she couldn’t see him as an adult so it would be about two more months.

Our Dr at UNC changed during that first two month period though and he has been really great, honestly.

Are you still seeing a Dr at Duke?

Oh ok cool you have a great doctor now.

Yeah her kids are all transferring to another doctor also at Duke. She just left this week so we are waiting to get our appts set up. We just saw her last week to say goodbye so the next follow-up will be in March.

 

[Maya142]

I absolutely agree - he should be seen at a different children's hospital by a pediatric GI! And I agree that hospitals affiliated with universities are more up on the research etc. My daughter was seen at a large IBD center (one of the best in the US) and her GI was not hesitant to change meds when Remicade stopped working. Typically if a medication stops working and there are not antibodies that you know of AND levels are high, then you do need a different medication. Most GIs will put kids either on EEN or steroids as a "bridge" to give the new med to kick in.

There are many new medications now - generally your GI will scope and do either an MRE or pillcam (they should absolutely do a dummy pill if they're concerned it might get stuck!!!) and decide what med would work best. Anti-TNFs like Humira and Remicade tend to work will for the whole gut, as do JAK inhibitors like Rinvoq; Entyvio works best for the colon, and IL-23 meds like Stelars and Skyrizi work best for the small bowel. So doing ALL the tests is important before choosing a med.

 

[my little penguin]

@Crohns dad
How are things going now ?

 

[jadegreen]

It breaks my heart to read your story.

Have you heard about the Specific Carbohydrate Diet? It's being used at Seattle Children's hospital to treat Crohn's in children.

https://www.nimbal.org/

I am NOT saying you should stop all of your son's meds. I'm just saying that this could be something to consider, especially if you continue to have trouble finding a drug that is alone able to manage this disease. He might need drugs with dietary support. I know how it feels to watch a child suffer, and Crohn's can be particularly frightening. I also have a son with a (different) GI disease.

When I had a flare up about 10 months ago, I felt like I had a flu as well, but no coughing. Can coughing be related to Crohn's? Or is the suspicion that your son had a virus that caused the cough, and then the virus put a strain on his body that led to the flare up?