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Little Pilgrim has Opinions

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?
 

my little penguin

Moderator
Staff member
Ugh …
Growing pains are so hard
Add in chronic disease
11 is young but very big but
She knows her body in terms of crohns more than most
She knows the pros and cons

not surprised by her choice
My kiddo is almost 18 so in short bit I will have no say
Age of ascent (agreeing with the medical decision made by parents /Gi ) is around 12 /13
At that age regardless of how long they have had crohns most Gi won’t force a procedure or med on a kiddo/teen if they are against it
They will present the options though and if what the child/teen wants is reasonable (MRE first vs scopes first , holding off on steriods for a minor flare , trying een but only for 2 weeks instead of 8 weeks , )

my kiddo talked through a lot with his docs around 12-13 by 14 the Gi was mostly talking directly with Ds not me at all except to add things he “forgot “

600 is still very high
2000 is very high
The thing with diet and a teen you can’t force it
You just can’t
They don’t process things fully until they are almost 25 so controlling diet when they have no other control on their body is not a good idea

I would ask her what things she didn’t like about
Cded … specific foods
missing out on food xyz
What foods did she like on the diet ?
Is she willing to add formula (kids boost etc..) as a supplement as well as mtx ?

has she tried lecovorin with mtx ?
Tried pills vs shots ?
Different mtx dosing levels .

oddly my kiddo tried mtx 4 or 5 times
All different dosing /pills /shots etc… until he found the right type /dose with least amount of side effects but still has some
Stelara is a very weak biologic imo compared to humira .
My very mild crohns kiddo started to flare when it was moved to 6 weeks from 4 weeks with mtx

humira /remicade- clean scopes pristine
Stelara very mild inflammation found
But we are talking a mild crohns kiddo who if it wasn’t for the extra intestinal stuff probably would not need biologics at all

Anyways back to your kiddo
If mtx is an option and she wants that after talking it through with her Gi
Then it’s worth a shot
Since you can stop and start mtx without any issue multiple times

but ask more questions about the diet
Especially what part if any of it she enjoyed
Let her pick recipes /cook with you
Find safe “mock junk “ food or a cheat day etc…
She needs to feel control
And test driving while your there with a safety net is good practice
 
Thanks @my little penguin . We've used Methotrexate 3-4 times over the years. Pills were easier on her system, but it might have been because she couldn't digest them properly. He seems to usually have her take 15mg subQ. We talk to him Tuesday so a lot of this is guessing.

We tried an anti-nausea med at one point and it might have been Lecovorin. It made her feel weird and she refused it. But I would try that again now that she's older.

I guess if she won't agree to the diet changes and I don't try to force it....what he wants to do will depend on the levels. If it's low I see him wanting to try methotrexate. If they are adequate I don't know. Where would he go from here? Stelara isn't working alone and the studies I've seen have suggested that concomitant therapy doesn't work with ustekinumab.

I will ask her more questions about the diet. Cheat days are built in after 12 weeks. The first 6 weeks are 50% EN. 50% listed foods. I think she's self conscious around her friends, school, etc. When we did it before and it worked SO well...it was covid lockdown and that actually eliminated the social pressure.
 

my little penguin

Moderator
Staff member
Lecovorin is taken 24 hours after mtx
It’s not anti nausea (that’s zofran )
Lecovorin helps with the side effects of mtx
As far as studies
There are very limited studies on veo ibd kids
They tend to be treatment resistant since the mechanism isn’t the same for little kids

has she had genetic testing done ?
Ds has had it three times -nih currently keeps re running his in a database for veo ibd kids through chop -they are looking for links
Three veo clinics in US not sure on Canada
Maybe they can share data ??

seen immunodeficiency experts for that testing??
May make a difference on what works

as far as school and kids

try to make it as acceptable as possible
Metal water bottles for shakes -Aka protein drinks
No one can see what in there
No smell
Keeps cold
Lunch
Mimic lunch tray food
Using hot packs to keep things warm
Like chicken nuggets (without breading )
Maybe try the AIDS (anti inflammatory diet instead )
Cded was very difficult for my kiddo and he was used to eating “weird” allergy free food compared to his peers
Cded took that to a whole other level
We were told diet itself didn’t matter
Just stick to one that’s all

AIDS is more freeing
And sticking out makes middle school so hard
 
Crohn's diets have a lot of things in common usually: gluten-free, processed food free, low or no sugar. Some are dairy or,specifically, lactose free.

Lecovorin wouldn't help her much because she would wake up usually 4-8 hours after injection and be miserably nauseous and sometimes vomit. On the upside we watched a lot of great documentaries while the rest of the family slept. The next day tired, quiet, not hungry.

I will ask about immunodeficiency testing. No genetic testing since age 3.

I'll look at AID diet. I know CDED works for her though. I don't know why. Her ASCA is always high and I have wondered if yeast is a problem but GI said there haven't been studies in that area.
 

my little penguin

Moderator
Staff member
Puberty ….
In crohns it’s evil
Typically chemical changes happen for puberty 1-2 years before the physical changes occurs.
The majority of kids starting into the chemical part of puberty find it extremely diffcukt to keep disease under control
So let her know it’s not forever
We had this extremely bumpy road for ds from 12 to 15
Things have slowly calmed down at 16/17/ almost 18
Just something to keep in mind
 
Good point! She has grown a lot this year and changes are happening. Maybe it would be smart to ask about a steroid burst as opposed to a treatment change. Any thoughts on what happens if Stelara hasn't cut it after an Anti-tnf failure?
 

my little penguin

Moderator
Staff member
If it’s puberty
Steriod burst won’t work
Puberty lasts years
Full court press on any and all meds
Since puberty in Ds experience causes tons of inflammation that’s difficult to pin down and treat for years .

as far as what drug after Stelara
Not many options which why while Stelara is not the most robust his Gi has kept Ds on it until there are more options

cimiza is anti tnf and not the best response rate
Entivyio but that takes forever to work 8-12 months so steriods until then

single case studies
Ilaris iL-1 in refractory crohns of a small child
(Ds is on ilaris and it does nothing for crohns )
Ivig -sometimes works -didn’t in Ds case (aseptic meningitis)
Jak inhibitors are doing good in jia but not approved for crohns
Which is why immunodeficiency and panels on immune dysregulatoon (Innate immune system ,auto inflammatory diseases etc…) are crucial.
 

crohnsinct

Well-known member
CDED is actually a very successful diet and one of the most studied with correlating scopes to prove remission. I have seen a case study where a young man was about to have a total colectomy and he was rescued with the diet. So I believe your experience! It is also one of the easier diets once you get past the first two phases. MLP has great suggestions for ways to discuss it with her. Also, a registered pediatric dietician who works in a GI office can certainly help as well. My girls adore their RD and I am often surprised at the things I towed a hard line on that she liberalized and found work around solutions for.

As for when I let the girls start making their own choices, it was pretty much at 11 or 12. So right from diagnosis. Of course we discussed a lot of things but it was always ultimately their choice. You could always let er try the methotrexate and if it doesn't work or is unbearable know you have a very good plan B in the diet. OR vice versa you could try the diet and let her know she has an escape clause being methotrexate.

As for what is next with regard to medical therapy....that all depends on which area is driving this inflammation. I will say that combo between an injection and an infusion is usually the way they go rather than two injectables but that could be a U.S. insurance thing (injectables go through pharmacy and infusions medical so often the two don't talk and they don't "catch" the double biologics).

Have you ever tried budesonide? That could be helpful in the TI or if you use the Uceris version the colon.
She has never tried Remicade right? Because of the distance to infusions? Sometimes people fail one anti tif but for some reason the other works and overall Remicade has a higher success rate.

There is antibiotic therapy but I believe that is more successful in the colon.

I am curious to hear what the GI has to say. Likely scopes/MRI to see what is driving this inflammation.

Sorry you are having to deal with this and puberty and asserting independence all at once! I will have a glass of wine for you;)
 

Maya142

Moderator
Staff member
We also let my girls have a say pretty soon after diagnosis. My younger one had just turned 12 a few days before being diagnosed and my older daughter was 14. We always let them talk to their doctors and encouraged it - my younger daughter was very shy and reserved, so it took her a while to feel comfortable discussing treatments with her doctors. But we always encouraged them to be as independent as possible - M started giving herself shots at 13.

I would echo what MLP says about genetic testing. My daughter with very refractory arthritis is undergoing the same thing - genetic testing to figure out what is driving the inflammation. In most big pediatric IBD centers (or at the very least at CHOP, where we went), VEO IBD was always treated as a different beast and immunodeficiencies and genetic testing was always discussed at the IBD education days (many of those presentations are now online actually).

As for MTX, well, I'm guessing you remember my younger daughter's experience with it. It made her sick for 2-3 days every week - she was extremely nauseous, dizzy, exhausted, would vomit. She was literally in bed all weekend and so miserable. She HATED it. But it helped her joints a LOT, so we tried it 3 or 4 times. All the tricks. First the pills - those caused the worst side effects for her - vomiting, mouth sores etc. Moving to the shot helped. We doubled her folic acid to 2 mg daily, which helped some. We added Leucovorin, which is folinic acid and is actually used as a "rescue" drug for cancer patients who take extremely high doses of MTX, to protect them from MTX toxicity (I had a friend who was taking 1000 mg of MTX, not 25 or 15 like my kids have!).

But in a tiny dose, it helps with the side effects. M was given it 12 hours after MTX and if side effects were really bad, she could take it again at the 24 hour mark. So that helped some too. We also tried several different doses by injection - 25 mg, 15 mg, 12.5 mg and 10 mg (or maybe it was 7.5 mg?). We tried Zofran before the shot and several times the day after. Nothing helped enough and so we moved on.

BUT fast forward 6 years since she last tried MTX, and M was in bad shape and actually asked to re-try MTX. I was shocked. She really truly hated it and it had made her so anxious. But her rheumatologist cautiously put her on 15 mg, by injection. She has no side effects. Literally none. She takes Zofran before the shot but I'm not sure she even needs that. Doesn't take Leucovorin. Just folic acid, 1 mg daily. She's been on it for a year and a half now. And she's fine. And I'm still shocked!

So this is a long way of saying that I think it's ok for her to try the MTX. Perhaps the escape clause could be that if she's totally miserable, she'll try the diet. MTX is a safe drug. And diets can be very hard on kids. My daughter has been on an extremely restricted diet due to her Gastroparesis and it's just tough. She gets tired of it. Wants to be able to eat normally, but knows if she does, she'll pay for it. EEN was extremely, extremely hard for her.

I think it's great that Little Pilgrim has opinions! I'd let her discuss it with her GI and see if you can come up with a compromise.
 

Maya142

Moderator
Staff member
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.
 
H had her appointment and it wasn't too much of an upheaval. Scopes in the next year, and MRI put on a rush order (Good GI guesswork @Maya142 ). For us that means sometime in the next month. Test for c-diff (just in case) and a repeat fcal right away. Her bloodwork is improving so the fcal result doesn't make sense to him.

He didn't end up making any mention of med changes or additions. However, we are still waiting a levels test result for Stelara. So that result may change things later on.

He did ask her to up her shake intake, and return to a CDED type diet if possible. We talked about it afterwards and she said she was OK with it but wanted to look normal around her friends. So maybe that means restarting the diet but just giving her an out for a Christmas party, classroom event etc. It helped that she felt terrible yesterday. Bathroom trips increased, gut pain increased and appetite down. Shakes are usually the default anyway in that case.
 

Maya142

Moderator
Staff member
That makes a lot of sense. Honestly, looking normal makes such a difference in middle school that I'd allow cheat days when needed. My daughter's diet has always been restricted (but for a long time we just thought she was incredibly picky - it all made sense when she was diagnosed with Gastroparesis) and I can tell you that while she was embarrassed in middle school, she was less embarrassed in high school and didn't even bother with her college friends for the most part. Her friends know she has health issues and they always accommodate her needs.

But in middle school, that's a lot harder. So I really do think compromising is best and talking through issues and coming up with solutions to them can really help. My daughter also walked around high school with formula/shakes in a water bottle - no one had to know!

I do think figuring out how bad the inflammation is by scoping and doing biopsies will drive the med decisions, as will the Stelara level. If trough levels are low, MTX may be your fix. If they're not, then you have figure out another solution. I wish there were more injectable meds for pediatric Crohn's - I know my girls definitely prefer injections now that they're older, and in your case, I know they're more of a necessity than a preference.

Poor kiddo. I hope they can get her in quickly. How long do scopes usually take? Do they ever admit to do scopes if the child is really struggling?
 
It turns out that her repeat calpro was similar to her last one (2000+) but her levels were great for Stelara at 11.
So what he wants to do is smack down the inflammation to allow the drug a better chance to work before considering a switch to either Entyvio or a double biologic.
Her choice was 40mg of Prednisone for a month and then taper or EEN for 6-10 weeks. Talk about a rock and a hard place for a middle school girl.
He preferred she take the EEN because of covid risks with high dose steroids.
In the end she chose EEN.
He can't scope her because his hospital has banned out of province patients for surgery due to a backlog related to covid.
So we are talking to the dietitian tomorrow and transition to 100% formula over the next few days.
 
Also @Maya142 I am buying 3 double wall stainless water bottles identical to her actual water bottle and those will hold 1 plus calorie Ensure each. She said if anyone asks she will refer to it as her smoothie. She cried for a few hours first but then formulated her plan.
 

my little penguin

Moderator
Staff member
For reference Ds are Stelara level was at 16 at every 4 weeks so her sounds like a good level of meds
Glad she has a plan
The water bottles will help a lot .
No one even asked Ds about his except at lunch
He made jokes like he was on protein shakes to bulk up at 12 😂
But he was a boy so …
Easier in some ways

fingers crossed it works
 
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