Updates/new adult GI

[pdx]

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 abdominal symptoms--no pain or diarrhea or nausea. Her doctor ordered an MRE in the fall and again in May, which just showed the usual inflammation at the ileum and the same old stricture there. Her doctor upped infliximab a bit up to 650 mg every 6 weeks, and ordered iron infusions.

In July, our HMO switched E to an adult GI and we didn't know what to expect. She had a video appt with her last month and the new doctor was great! She asked good questions and seemed to grasp E's case details right away, and she is definitely not a "Let's watch this for a while" kind of practitioner. She increased her infliximab dose to 650 mg every 4 weeks, scheduled a scope for August, and gave us a referral to rheumatology for mtx management. The scope was today and showed inflammation and ulceration at the ileum and a small fistula. We're going to get another calprotectin in a few months to see if the infliximab increase reduces the inflammation.

Another notable thing about today's scope is that I had to leave E at the door due to Covid restrictions. She did great, advocating for herself when needed and meeting her new doctor on her own.

 

[my little penguin]

Sounds like a great fit for her
So glad her transition to adult land was smooth and your new doc is on top of things
That is really great to hear

 

[Pilgrim]

H is similar. High calpro, fatigue and dropping iron are the symptoms. It's always interesting to read how that manifests under scopes for other kids! Sorry that there is a fistula starting but glad doc is right on it.

It must be so reassuring to see her advocating for herself. In another forum I give that advice to parents of newly diagnosed kids - teach them how to navigate the system, know how to ask questions, know the signs things are going off the rails. These kids have a huge responsibility for their own health as young adults.

Kudos to both of you!

 

[Tesscorm]

I'm glad the transition has gone so well! And so reassuring when you see the doctor taking quick action. Hopefully, the recent increases in remicade help with the flare and the fistula.

S is older now so managing his healthcare is mostly in his hands now but, I remember when he was younger and had just moved to adult GI, being surprised at how much he had actually taken in during my time being his advocate. Our kids take in more than we realize and are surprisingly capable!

Hope her flare improves quickly!

 

[Maya142]

I'm SO glad she has a great adult GI! My daughter switched when she was 22 I think and her adult GI is absolutely great. She is also really good about not just waiting and watching while M is not feeling well.
I'm sorry to hear about the ulceration and fistula. Remicade can heal fistulas, right? It's not something that has to be taken care of surgically? I'm glad the new doc upped the frequency. Is 650 mg 10 mg/kg or do you have room to go up on the dose too?
M has also had to deal with scopes and procedures all by herself for the last year and a half. It was a bit scary at first but she did great too. The only thing she hated was being hospitalized without any visitors but that was very early during COVID (now they do allow visitors).

But way to go E for doing it with a new doc she hadn't met in person yet. I'm so impressed!

Has she been having joint symptoms? Is that why she was referred to rheumatology?

 

[pdx]

I'm sorry to hear about the ulceration and fistula. Remicade can heal fistulas, right? It's not something that has to be taken care of surgically? I'm glad the new doc upped the frequency. Is 650 mg 10 mg/kg or do you have room to go up on the dose too?

Has she been having joint symptoms? Is that why she was referred to rheumatology?

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 now at the max dose without getting special approval.

She has a little joint achiness when her Crohns is flaring. Not enough that she's ever seen a rheumatologist. In her appt, E brought up that she'd like to try oral mtx again since that would be easier when she's away at college. The new GI doctor thought that a rheumatologist would have more experience with details of mtx dosing and delivery, and that's why she made the referral.

 

[Maya142]

I see...I'm a bit surprised because most GIs have been using MTX for a while now, though I guess it is much more common to use the injection in GI patients, although every rheumatologist we have ever seen has said the subq form is better because you then know how much is being absorbed, which is not the case when it goes through the stomach.
It might be something to watch for when she switches - if she's already flaring, I'd hate for her to get worse because she stops absorbing MTX or absorbs less.
But plenty of kids do just fine on the oral form too. And rheumatologists do have a LOT of experience with MTX. Plus, if she has achy joints, it wouldn't hurt to see a rheumatologist.
I really hope the increased dose of Remicade does the trick! Will she be living on campus this year?

 

[pdx]

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 her campus, so she won't have to come back to Portland every month which is nice.

I'm also super happy that she'll have a covid booster before heading to campus--such a relief!

We'll definitely watch things closely if she changes to oral mtx. She was on an oral dose for years and it worked well for her. She only switched to help with her nausea, so she'll have to decide which she dislikes more--the nausea or the shot. Honestly, neither one is that bad for her, but she is afraid that she will conveniently "forget" to take it in college, since it's just not that pleasant either way, so we're trying to figure out how to make it as frictionless as possible. (And yes, she understands rationally that she needs it, but she's never had to take complete responsibility for her health until now...)

 

[Maya142]

Oh I'm so glad she'll get her booster and get to be on campus! Starting school in the pandemic must have been so tough.

Hmmmm...what does she dislike about the shot? Is it doing it herself or seeing the needle or the poke? One way to ensure she stays on top of MTX is to get the health center to administer it, though then it would be given in the afternoon or evening (if you're lucky) and many kids (including mine) prefer to take it before bed. If it's seeing the needle, then there are auto-injectors/pens, though I would guess those hurt more than an insulin syringe. If the it's the shot that hurts I'd make sure you get the MTX with preservatives and she could try icing or using numbing cream. For the pills or the shot, she could set an alarm that goes off weekly on her phone. You could also remind her as she adjusts to taking charge of everything herself - it's a big step.

My older daughter hated taking MTX when she was a freshman/sophomore in college. It made her nauseous and tired and took away part of her weekend and she just wanted off it. She tried to taper off it (or just skipped it!) more than once, but each time she flared. Eventually she figured out it was not worth flaring, so she became very good about taking it. She started taking Leucovorin (folinic acid) which is more commonly prescribed by rheumatologists and that made a BIG difference for her. She actually doesn't need it anymore, but for a few years, it really made a big difference. Once MTX was not interfering with her life, she took it regularly.

One other thing to discuss with her- drinking while on MTX. Hopefully the rheumatologist will talk to her about that - we found that my older daughter was much more receptive to listening to her doc vs. her mom!