Little Pilgrim has Opinions

[asadmom]

I

I also wanted to add that in the US, if Stelara did not work after Humira and the child had disease that was in the small bowel as well as the colon, they'd probably try Remicade. Or a combination of two biologics - one for the small bowel, one for the colon. She did respond to Humira for a while, right? So that would be considered secondary anti-TNF failure (i.e. it worked then you lost response vs. no response at all) and a second anti-TNF should work. I would DEFINITELY try Remicade over Cimzia. M has what her GI calls "mild to moderate Crohn's" though compared to kids on here, it seems quite mild to us. She was on Cimzia for 4 years, with a second biologic for her arthritis. She needed a double dose - two shots every two weeks instead of every 4 weeks and over time, those started lasting only 9 days or so. And then she'd start having diarrhea and would be up all night in the bathroom. She'd go from 3 BMs daily to 7-10 BMs daily. She became anemic, required iron infusions. And then once she'd have her next Cimzia dose, she'd magically get better.

I have to say, she did a LOT better on Remicade.

I know logistically Remicade would be extremely difficult, but I'd ask about home infusions after the loading doses. They're doing that more and more in the US, even for kids.

Other than that, Xeljanz or Tofacitinib might be an option. It's been approved for UC. There's another JAK inhibitor, Upadacitinib or Rinvoq that is in trials for Crohn's and doing very well - my kiddo is on that now and her Crohn's seems fine, though she is due for routine scopes.

I think for Little Pilgrim, scopes and an MRE would make a lot of sense since it's been a while and you need to know where the inflammation is, how bad it is etc.

Is upadacitinib available for children?

 

[crohnsinct]

It's not approved for Crohn's yet much less pediatric patients.

 

[asadmom]

It's not approved for Crohn's yet much less pediatric patients.

@Maya142 said her kiddo is on it?

 

[crohnsinct]

She is an adult and she is on it off label. It is generally very hard to get off label authorizations. You have to fail pretty much every other drug available. It is even more difficult to get off label authorization for a pediatric patient.

 

[Maya142]

Yes, she's in her 20s and she's failed absolutely everything - she has incredibly refractory arthritis. PLUS it was approved for her arthritis, NOT her Crohn's. She is on the dose used in IBD though. But it actually has not worked for her arthritis or her Crohn's and she is trying a new drug (well, 2 drugs).

In our experience, she's had more infections on upadacitinib than any other drug - even when she was on 20 mg/kg of Remicade every 4 weeks (the standard dose is 5 mg/kg every 8 weeks) or combinations of two biologics.

 

[asadmom]

I guess she's growing up. We talk about her test results, and weigh pros and cons of medical decisions. She has a lot of experience now that she's 11, and has been dealing with Crohn's for 8 years.
She's 7 months into Stelara and just had her fcal leap back up over 2000. She moved to monthly dosing back in August. We had her on the CDED for 12 weeks at the beginning to improve her outcome. When it seemed like Stelara was working we dropped the diet. So 3 months after upping Stelara and dropping the diet FCAL goes from 600 to 2000.
So something about this diet must have helped.
We are still waiting on the Stelara levels results. I am willing to help her with the diet again but she is unwilling and said she would rather add methotrexate if given the choice.
Methotrexate makes her feel terrible for a whole day every week. She knows this.
How much space do you give your kids to help make these decisions? When did you start?

Did you use Modulen with CDED or some other brand?

I think it's so wonderful that you found CDED to be effective. There are many diets out there including SCD which is popular too.

 

[Pilgrim]

We did SCD years ago and it didn't work for her. I think I relied too heavily on replacing my baking with almond flour and honey based items. She doesn't tolerate almond flour well.

We used Ensure/Boost and comparable generic brands instead of Modulen for CDED. I did the course they (Modulife) offers for medical professionals. The science is very up to date and evidence based.

 

[asadmom]

We did SCD years ago and it didn't work for her. I think I relied too heavily on replacing my baking with almond flour and honey based items. She doesn't tolerate almond flour well.

We used Ensure/Boost and comparable generic brands instead of Modulen for CDED. I did the course they (Modulife) offers for medical professionals. The science is very up to date and evidence based.

Thank you very much!!

 

[asadmom]

Thank

We did SCD years ago and it didn't work for her. I think I relied too heavily on replacing my baking with almond flour and honey based items. She doesn't tolerate almond flour well.

We used Ensure/Boost and comparable generic brands instead of Modulen for CDED. I did the course they (Modulife) offers for medical professionals. The science is very up to date and evidence based.

Do you know about the glucose controlled versions of those drinks? They are lower in sugar and I wonder if they deliver the same effects without the excessive sugar.