• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

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
 

Maya142

Moderator
Staff member
Poor kiddo - EEN is tough. But so is Pred...definitely in middle and high school. My girls were so self-conscious.

You know what helps middle school girls? Shopping ;). Perhaps as a reward for EEN??!

(And yes, I bribe shamelessly!!! But my DH is far worse - we got a kitten for M for the NJ tube. So you really would get off easy with just a shopping trip for clothes!).
 
This is getting more complicated. For the past week she's had unexplained back pain. I had been giving her Tylenol to manage it plus a heat pad. She couldn't manage at school yesterday and I had to pick her up early and decided to get her looked at by a doctor. His thought was possibly axial arthritis early stages given her history. Nothing showed up on xray but at least we have a baseline if needed. He wanted to have her try NSAIDS for the next two weeks. I called the GI office and he said he would never give approval for that. I did try Ibuprofen for a day and it seemed to help but we'll switch back to Tylenol. So, what does the beginning stages of axial arthritis look like and how long does a diagnosis take? I'm looking back even in this thread and seeing that genetic testing could really help. Hoping she just wrenched it somehow but it's been a week, not getting better, she has to struggle to get out of bed.
 
I don't have experience with arthritis but just wanted to say that I'm sorry that she's having to deal with this. Hope that you can figure out what's going on and a good way to treat it.
 
I don't have experience with arthritis but just wanted to say that I'm sorry that she's having to deal with this. Hope that you can figure out what's going on and a good way to treat it.
Thank you. As a parent it's super disappointing to be taking care of one issue and then just have some weird thing arrive alongside the first problem. Fortunately, her attitude is amazing.
 

my little penguin

Moderator
Staff member
X-ray won’t show anything until there is damage (takes many many years )
Mri would show if there is active inflammation.
She needs a rheumatologist.
They can evaluate for ERA or JAs
You may have been treating it all along with the humira
Stelara can treat arthritis but weakly and needs methotrexate in most cases per our rheumatologist
Blood tests are for hla B-27
Kids positive with that are more likely to progress from ERA to AS as adults

most do not recommend standard nsaids

Ds takes Celebrex which is prescription only
That protects the stomach somewhat
Even that we only have permission to a certain dose
Above that dose he gets Gi issues

swimming /hot tubs (we got an inflatable one )
Heated mattress pad
Volteran gel (some Gi are ok with just the gel )

hope it isn’t the case
But only a rheumatologist with an mRI can tell
 
I have her booked in to GP after Christmas, probably would see a referral to Rheumatologist at that time.

It's important to me to sort it out in the next few months the because if she does fail Stelara then I can make a push for Remicade instead of Entyvio to try and treat both issues.

She does love to swim. Does not love any other exercise.

Does arthritis cause changes on blood work? Her inflammatory markers for Crohn's on bloodwork are only really perceptible to the GI after years of working with her. She does not get wild swings on bloodwork unless she is severely inflamed.
 

my little penguin

Moderator
Staff member
Rheumatology needs to see her over a period of months (multiple times ) to assess her joints properly and determine if she has issues
Bloodwork depends on the kiddo
Mine typically has normal bloodwork (crp /sed rate ) despite visible flare the rheumatologist can feel
Others have high markers
Peripheral Manifestations Influence Spondyloarthritis Trajectory
Heidi Splete
December 07, 2021
0

Added to Email Alerts


Peripheral manifestations contribute significantly to disease activity in adults with spondyloarthritis (SpA), point toward a generally worse prognosis, and play a big role in defining the phenotypic clustering of the heterogenous disease, according to findings from what researchers called the first prospective study "to comprehensively describe the prevalence, clinical patterns, and prognostic implications of peripheral manifestations across the entire SpA spectrum."
The stratification of patients in the study based on the presence of peripheral manifestations (arthritis, enthesitis, and/or dactylitis) led to the identification of an endotype with unfavorable outcomes, which not only has prognostic value but supports the need for an endotype-based treatment approach rather than one centered on C-reactive protein (CRP) and the Ankylosing Spondylitis Disease Activity Score (ASDAS).
The findings "advocate strongly for the presence of a distinct SpA endotype, based on potentially different immunopathological mechanisms and characterized by high disease activity at initial presentation with lack of substantial improvement upon follow-up," first author Ann-Sophie De Craemer, MD, of Ghent, Belgium, and colleagues wrote.
Because the diagnostic and prognostic value of peripheral manifestations has not been well studied in SpA in general and in newly diagnosed patients in particular, De Craemer and associates decided to analyze their impact in 367 patients in the Be-Giant (BelGian Inflammatory Arthritis and spoNdylitis cohorT) cohort, a multicenter, prospective, observational cohort of newly diagnosed patients with SpA in Belgium. The study was published in Rheumatology.

The study population included 257 (70%) patients with axial-predominant SpA (axSpA) as classified by Assessment of Spondyloarthritis International Society criteria and 110 (30%) with peripheral-predominant SpA (pSpA) as defined by ASAS criteria. A total of 52 patients with axSpA had peripheral manifestations at baseline. The mean age of the patients was 34 years, and 52% were male.

The 162 patients with peripheral manifestations included 143 with arthritis, 52 with enthesitis, and 55 with dactylitis.
Two Patient Clusters Emerge From Data
In a cluster analysis that used baseline clinical features, the researchers divided the patients into cluster A (of which 242 of 248 were patients with axSpA) and cluster B (of which 104 of 119 were patients with pSpA). Most of the patients with peripheral manifestations were in cluster B (117 of 162 [72%]), compared with cluster A (45 of 162 [28%]).
A longitudinal analysis included 195 patients who completed a minimum 2-year follow-up. The longitudinal analysis identified high- and low-disease activity trajectories in each cluster.
In axSpA-predominant cluster A, patients with "high" trajectory had high disease activity levels at baseline (mean ASDAS-CRP, 3.2) that remained relatively stable, while those in the low-trajectory group (62%) had less disease activity at baseline (mean ASDAS-CRP, 2.0), which then further declined during follow-up.
Patients in the high trajectory in cluster A were more often affected by peripheral manifestations, "which remained a significant predictor in multivariate analysis," with an odds ratio of 2.4, the researchers noted. In addition, patients with peripheral manifestations were significantly more likely to have persistent high disease activity despite starting biologics earlier than patients without peripheral manifestations (hazard ratio, 2.1).
Patients in pSpA-predominant cluster B showed differences that were similar to those seen in cluster A in terms of high– and low–disease activity trajectories (mean ASDAS-CRP of 3.6 and 2.8, respectively), but among these patients, a high level of disease activity was significantly associated with elevated CRP, rather than with peripheral disease, the researchers said.

The study findings were limited by several factors, including the exclusion of patients who did not complete the follow-up, which reduced the sample size for longitudinal analysis. However, the results were strengthened by the inclusion of patients from the full SpA spectrum, a geographically spread-out patient population, and a study design that mirrored clinical practice, the researchers noted.
Study that just came out

rheumatologist typically can’t dx until they observe the joint issues multiple times versus just once
So ….


Getting hla b-27 drawn would help prior to seeing Rheumo

now that she is older
Remicade is being done by home health at least on the US
 
So sorry you and she are dealing with this on top of everything else.

Forgive me if you already answered these questions.

Where is the back pain? Midline? Or to the side? Lower, mid or upper back? How large an area is it? Is it over her vertebrae? What makes it better or worse? Is she having any other symptoms or increase of other symptoms at this time? Any urinary symptoms? Is she lying in bed with the pain?
 
So sorry you and she are dealing with this on top of everything else.

Forgive me if you already answered these questions.

Where is the back pain? Midline? Or to the side? Lower, mid or upper back? How large an area is it? Is it over her vertebrae? What makes it better or worse? Is she having any other symptoms or increase of other symptoms at this time? Any urinary symptoms? Is she lying in bed with the pain?
The back pain is in her lower mid back and spreads a bit laterally on both sides. It includes her vertebrae. Her urine was checked for signs of kidney issues. She is responding to extra strength Advil (although we have stopped the Advil per GI) it lasted 6 hours before pain ramped up. I'm trying extra strength Tylenol now which is helping but have to see how long it lasts.
She does lie in bed when the pain killer wears off. She had trouble getting out of bed this morning and had to carefully roll out.
 
She also had restricted movement when they checked. Couldn't slide her hand down her legs down too far on either side or bend very much toward her toes.
 

my little penguin

Moderator
Staff member
Do you have to wait for gp?
Can’t you get Gi just refer to the pediatric rheumatologist at the same hospital ?
Ours can do that to any specialist they feel the child needs .
Wait many months to get into a Rheumo is concerning based on what your describing.
 
If she has this much discomfort, can she see her GP sooner for a sick visit? The two weeks and see plan might work in someone who can take NSAIDS but she can't so she needs a new plan. There's a limit to the amount of Tylenol one can safely take.

She had difficulty getting out of bed, but once out of bed, is she ok walking around? Does the pain and stiffness get better with movement during the day?
 

my little penguin

Moderator
Staff member
Morning stiffness
If it is arthritis …
Have her document how long it lasts in the morning and if it gets better with movement ..
If it gets worse again if she stays still (sitting or laying )
Morning stiffness is hard
A mattress heating pad you can turn on prior to her needing to get up helps Ds
A regular heating pad
Or he has used a bedjet (fills a sheet thing with hot air similar to warm towels out of the dryer )
Warm showers or soaking baths help as well in the morning Or before bed
Tylenol does do much unfortunately
Later once inflammation is under control
Physical therapy can help a lot
 
If she has this much discomfort, can she see her GP sooner for a sick visit? The two weeks and see plan might work in someone who can take NSAIDS but she can't so she needs a new plan. There's a limit to the amount of Tylenol one can safely take.

She had difficulty getting out of bed, but once out of bed, is she ok walking around? Does the pain and stiffness get better with movement during the day?
Our only other option is to go back to ER, otherwise it has to wait until the last week of December. She did well for about 6 hours on 650mg of Acetaminophen then repeat.

In some instances it seemed worse after getting up. She had me pick her up from school because her pain became intolerable after standing up and holding a ukelele. Lying on her stomach seems to be most able to help mitigate the pain. It is 6-7 when she isn't medicated and 3-4 with Tylenol.

It seems like she's less stiff after she gets up but her range of motion is not really different if that makes sense.

I can get her in to a chiropractor in a couple of days to at least get another perspective. The physio waiting list here is over a year.
 
Morning stiffness
If it is arthritis …
Have her document how long it lasts in the morning and if it gets better with movement ..
If it gets worse again if she stays still (sitting or laying )
Morning stiffness is hard
A mattress heating pad you can turn on prior to her needing to get up helps Ds
A regular heating pad
Or he has used a bedjet (fills a sheet thing with hot air similar to warm towels out of the dryer )
Warm showers or soaking baths help as well in the morning Or before bed
Tylenol does do much unfortunately
Later once inflammation is under control
Physical therapy can help a lot
Good advice. We will document the length of time of stiffness and other details.
She said the shower this morning helped better than a heating pad.
The Tylenol helped at the larger dose.
 

my little penguin

Moderator
Staff member
No chiropractor
If it’s anklylosing spondyloarthritis
Even the kiddie kind
Chiropractors are a big no no
After you have ruled out axial JSpA disease by mri with a rheumatologist
Then by all means see anyone you think would help
But please do not see a chiropractor until after axial Jspa has been ruled out definitively.
Damage can be done
 

my little penguin

Moderator
Staff member
If you call I am sure there is similar in Canada
They will send you a book
Called “raising a child with arthritis “
It has lots of tips and tricks
But also has a section on range of motion exercises that you can work through with her
Similar to what a physical therapist would do

i am sure your library may have a e copy of it as well
 

Maya142

Moderator
Staff member
I will answer tomorrow - my kiddo is not doing well. But PLEASE avoid a chiropractor until you are 100% sure she does not have axial arthritis
 

Maya142

Moderator
Staff member
My quick take is:
She needs an MRI and to see a rheumatologist ASSP. Unfortunately in the US that can be waiting 3 months. In Canada, I suspect it could be longer. Going to the ER is a possibility or pushing for her GI to get her in with rheumatology ASAP are two possibilities. Or your GP could push (well at least in the US).
In terms of NSAIDs, Celebrex is easiest on the gut. Other ones we have tried with success are Mobic (meloxicam) and Nabumetone. My girls both need a stomach protectant to take them - M takes Omeprazole and S takes Pepcid. But not all kids need that. But of course, clear it with your GI.
As MLP has said I’m sure (I’ve only been able to skim this thread) Stelara does NOT work for axial arthritis. Unfortunately, that just leaves Remicade or other anti-TNFs. Or Xeljanz, which is only approved for UC here, but may work for her Crohn’s. The good part is that both Stelara and entyvio are not very immunosuppressive at all, so you could easily combine them with an anti-TNF. You could try for Cimzia or Simponi since they’re shots. They are not approved for JIA in the US but Cimzia did well in JIA trials and the IV form of Simponi, Simponi Aria is approved for JIA. It’s the same drug as Simponi just IV. So you may be able to get that approved. Simponi injections are approved for JIA in Europe so it’s possible they are approved in Canada.

Her symptoms do seem entirely consistent with ERA unfortunately. And it often develops into axial disease in the early teen or preteen years. It could, of course, be something else but if it is ERA, you want to treat early and avoid ending up like M. Her diagnosis was delayed and then we delayed treatment with a biologic for a year or so because her arthritis seemed much milder than her sister’s, but the poor kid has paid the price and it is a decision I will never forgive myself for.

You are of course welcome to PM me at any time and I will reply in detail tomorrow on this thread. Sending BIG hugs.
 
I think it could be ok to see a chiropractor if they only examine her and don't do any manipulations. You'd have to be in the room to make sure.
An MRI is a good idea.
Sending lots of 🤗🤗🤗 and well wishes.
 
Hi Pilgrim, I'm so sorry to hear that Little Pilgrim is going through this. My son also has Ankylosing Spondalitis and it was diagnosed around the same time as Crohn's. Remicade has helped both conditions. His bloodwork showed very high inflammatory markers when he was at his worst. At one point, he couldn't walk, and his arthritis actually was visible on xrays on both hips. MRI showed slight erosion of the Si joint, but Remicade has helped on both conditions and you wouldn't know that he had anything. Physiotherapy was an amazing help btw and he was going 3 x a week for a long time and then that was reduced. I wouldn't go to a chriropractor at this point. Ibuprofin helped but it's not good for Crohn's part. As suggested earlier, hot water bottles and epsom salt baths were helpful for some relief.

As you know, we live in Ontario (GTA) and we went to the emergency and was given a Rheumatologist app't within weeks, so that was the fastest way to get a specialist otherwise it takes months.

Hugs.
 

Tesscorm

Moderator
Staff member
Sorry she's dealing with this. Having had back issues myself, I really do feel for her and I hope you can get referrals and appointments quickly. I've also found going to ER gets the quickest referrals.

FWIW, S had lots of back pain pre crohns dx. In his case, not sure which came first... He took a lot of advils, I know advils don't cause crohns but I still wonder if they may have triggered it in S. He'd started complaining about his back in the summer but, as he played lots of hockey, our thought (and his doctor's) was that he was repeatedly injuring/straining his back without giving it a chance to recover. I'm fairly sure we didn't do a MRI (no reason to believe it was anything more than a sore back at that time), not sure we even did an x-ray but maybe... His back pain was mostly lower/mid back but did travel up towards shoulder blades. His ped suggested he take advil before games/practices to head off inflammation. So that's what we did but, and I still blame myself for this, I didn't really consider just how often he was on the ice, 5-6 times per week... equals lots of advils! Plus he would take more, at times, to alleviate the pain. This went on for months! We tried physio, stretches, yoga, sleeping on floor (hard, flat surface), keeping him off the ice for a few days (we could never convince him to give it a longer break). It never occurred to me that all those advils could cause a problem.

By December, he started to show mild crohns-type symptoms which continued and worsened as the months went on (still had the back pain so the advils were continuing - we thought he had a stomach bug, so no relation to back pain). He was diagnosed with crohns in May. At this point, he was referred to a rheuma, who found no problems. Advils were immediately stopped.

He started on his crohns treatment (EEN only) and then only supplement EN - his only medication was nexium because NG tube caused nighttime heartburn (so no biologic to treat arthritic conditions). As his intestinal inflammation went away, so did his back pain. Hi ped GI believed it was referred pain caused by crohns inflammation. The back pain has never returned.

Hopefully, Little Pilgrim is having the same problem and it will abate as her crohns inflammation is brought under control. (Something that did help S was Tiger Balm ointment. He kept packs in his school locker, knapsack, gym bag, hockey bag, etc.... He hated the smell but I do remember him saying it helped.)

😘
 

my little penguin

Moderator
Staff member
Important note @Tesscorm brought
Arthritis associated with inflammatory bowel disease
Can be one of two types

One type only flares the arthritis when the gut is inflamed from a crohns flare .
When the patients crohns is in remission so is the arthritis

the second type is arthritis that flares independently of the gut inflammation.
In this case even when the gut is quiet the arthritis can still be inflamed

my kiddo unfortunately has the second type so his arthritis needs to be treated independently of his crohns
 
Hi Pilgrim, I'm so sorry to hear that Little Pilgrim is going through this. My son also has Ankylosing Spondalitis and it was diagnosed around the same time as Crohn's. Remicade has helped both conditions. His bloodwork showed very high inflammatory markers when he was at his worst. At one point, he couldn't walk, and his arthritis actually was visible on xrays on both hips. MRI showed slight erosion of the Si joint, but Remicade has helped on both conditions and you wouldn't know that he had anything. Physiotherapy was an amazing help btw and he was going 3 x a week for a long time and then that was reduced. I wouldn't go to a chriropractor at this point. Ibuprofin helped but it's not good for Crohn's part. As suggested earlier, hot water bottles and epsom salt baths were helpful for some relief.

As you know, we live in Ontario (GTA) and we went to the emergency and was given a Rheumatologist app't within weeks, so that was the fastest way to get a specialist otherwise it takes months.

Hugs.
I don't know if it would be smart to have her in ER in Manitoba right now. Covid cases are already affecting patient backlogs and I know she wouldn't be prioritized - it's a mess there. It's 4 hours away.

Would love to go to SickKids but I'd be looking at driving 4 hours and then a flight to Toronto. I think I have to wait. Also I read that this has to be several weeks for a conclusive diagnosis so maybe the wait will help get her a quicker diagnosis.
 

my little penguin

Moderator
Staff member
There is no pediatric hospital at all near you ???
Yikes 😳
Adult ER would be useless right
How do they take care of emergency flares for her crohns ???
We were told his Gi had to be less than 3 hours away in case of emergency

Even now his old Gi is 4.5 -5 hours away which we prefer but new Gi is only 1.5 hours so

Ds was always sent to the pediatric hospital ER for eval and admitted to GI floor
 
Unfortunately, we go to the adult ER. If I can, for GI emergencies I will arrange it so that they can contact her team by phone while she's in there. It's useful if she needs IV fluids or an xray. The have a CAT scan if it was really bad. Not ideal.
Usually, I just call the peds IBD nurse for advice.
 

Maya142

Moderator
Staff member
Unfortunately axial arthritis almost always flares independently of the bowel disease. That doesn't mean that they can't flare at the same time, but it does mean that fixing the Crohn's with EEN will likely not help her back.

The symptoms @Tesscorm is describing sound less like axial arthritis to me...pain typically starts in the SI joints or lumbar spine, not usually the thoracic spine. His certainly could have been referred abdominal pain he was feeling in his back.

So what MLP said is absolutely true - damage takes YEARS to show up on an x-ray. Sometimes as long as 8-10 years after the onset of symptoms. It can happen faster. My younger daughter started complaining of back pain around age 10-11. By 16, she had enough damage to her sacroiliac joints for the disease to be reclassified as Juvenile AS vs. ERA. That is unusual though - particularly in a girl. Typically men show more radiographic damage (damage visible on x-ray) than women. Most kids are diagnosed with ERA, not JAS.

So you definitely need an MRI (does not need to be with contrast). And honestly, she really should be seen by a rheumatologist soon.

In some instances it seemed worse after getting up. She had me pick her up from school because her pain became intolerable after standing up and holding a ukelele. Lying on her stomach seems to be most able to help mitigate the pain. It is 6-7 when she isn't medicated and 3-4 with Tylenol.

It seems like she's less stiff after she gets up but her range of motion is not really different if that makes sense.
All these behaviors could be arthritis related. M used to call me from school in tears because her back hurt so much that she couldn't sit through class. She slept on her stomach for years. Actually S did both too. Standing for a long time is actually a much bigger challenge than walking for both my daughters.

For morning stiffness, I used to turn on M's heated mattress pad 20 minutes before she had to actually get out of bed. And then after that, she'd force herself to have a hot shower. That really helped with mobility. It may mean waking up early but it made a BIG difference for her and when she stopped doing it in college and showered at night instead. She missed a lot of morning classes in college!

In terms of options, I really don't know the health system in Canada well enough to say. Normally I'd say go to the ER. And actually, since she's only on Stelara and no MTX, that may still be an option, since Stelara is not very immunosuppressive (so I'd worry less about the COVID risk - I'd double mask). Though an adult ER is no help - can't you go to the ER at the children's hospital her GI is at?

I would also say that at least in the US, it is VERY common for families to have to travel to see pediatric rheumatologists. They are hard to find!! There are only like 350 in the US and there's roughly 350,000-400,000 kids with JIA, so there are vert few docs. And most families do often have to drive - some for 6 hours or more (one way!). We drove 2.5 hours each way.

I would honestly call her GI, tell him how bad the pain is and how it is affecting her sleep and school attendance. Tell him you are worried about Enthesitis Related Arthritis. Her GI should be referring her to rheumatology and can push to get her in sooner. Also ask about an NSAID like Celebrex or an NSAID with a PPI like Omeprazole.

For pain management, heating pad and ice packs work best for my girls. They both prefer ice sometimes and heat sometimes. I can PM you which heating pads they like, if you'd like. Having a heating pad at the nurse's office might help - that way instead of having to come, she could lie on it for a bit then go back to class. That is what my kids did. We also stored ice packs with the nurse and Tylenol.

Definitely document how long morning stiffness lasts. Also, look for swollen, warm or red joints. Usually lower limb joints are affected first - knees, ankles, hips. But really it could be any joint from the fingers to the jaw. Take pictures of joints that look puffy or swollen. Watch to see if she is limping in the morning or after sitting for a while (like after watching a movie, for example).

And I would push to either get an earlier appt. with the GP or ask your GI to get you in with rheumatology. I'm honestly kind of surprised he isn't more concerned since ERA is common with IBD. They are strongly associated and share genes. You could also ask your GP to talk to the GI and ask about Celebrex temporarily.

ERA is hard to treat and can be absolutely debilitating. Early, aggressive treatment is your best bet to avoid permanent joint damage. Small erosions probably wouldn't show up on an x-ray but would certainly cause pain. My girls do not even remember what it's like to be pain free...and there is nothing, absolutely nothing, I regret more than not getting them diagnosed and treated earlier. At the time, we were told that AS is a man's disease. I wish I had pushed harder and gotten them on biologics sooner.
 
She was able to take a cancelation spot for mri this weekend for GI referral. Does anyone know if a GI mri is useful for Rheumatologist or will it be a whole separate deal after referral.
 

Maya142

Moderator
Staff member
Hmm...I don't know if an MRE would show the pelvis...my daughters' rheumatologists have always ordered a pelvic MRI and a lumbar spine MRI if they have similar symptoms to H.
 

my little penguin

Moderator
Staff member
Gi is different mri than one for axial arthritis
they lay different and take different images of I remember correctly
Ds had scopes then had to have three separate mri ordered
One of abdominal series
One of pelvis and one of the spine
 

Maya142

Moderator
Staff member
Yes and the pelvic MRI is much shorter than an MRE I think. M says 30-45 minutes, no contrast needed. But I do also remember reading research which showed that a large proportion of IBD patients had SI joint arthritis show up on their MREs (I think...it was some kind of abdominal MRI) even though many didn't have any symptoms of inflammatory back pain.
 
I asked someone who did research in MRI physics and this person said that they use different "pulse sequences" to look at fat or nerves or bone and thought that an MRI of the spine would be quite different from an MRI of the gut.

I found a 2020 article (attached) which says "In conclusion, this pilot study demonstrates that MRE may be a good tool to detect early signs of SI inflammation, even in asymptomatic patients, but for a better evaluation of SI joints dedicated sequences may be necessary...."
 

Attachments

I had that thought too but would think she would likely have a fever and some abdominal tenderness in addition to the back pain.
 
Come to think of it, if I'm reading the thread correctly, she just started on EEN, right?

I have a little EEN experience for comparison. Before my son was diagnosed, he was having abdominal pain, diarrhea, and very low appetite. We were desperate to get him to eat more, so we got him to drink Pediasure. This seemed to result in less pain, so we had him drink increasing quantities of it. We had stumbled upon EEN unintentionally, and things were improving. The poop was solid again.

What happened days later? He starts to get severe pain when sitting down, near his tailbone. We take him to a doctor, and it gets chalked up as tailbone pain--just rest it off. He also did have some fever, although it seemed to last for only a couple of hours at a time.

Well the situation gets worse and a day or two later we go to the ER at the children's hospital. It turns out there's an abscess and Crohn's.

Why did the abscess happen right then, of all times, just as the diarrhea was stopping and the abdominal pain was basically gone? My theory is that the EEN induced some mucosal healing, and what happens when a fistula starts healing? That's right, the opening of the fistula closes off and an abscess forms because it's now closed off from the outside and can no longer drain.
 
Last edited:

Maya142

Moderator
Staff member
They use STIR imaging for the SI joints - don't ask me what that is though! But it does not require contrast - there are studies on that both for kids and adults. MRIs of the SI joints are very sensitive and will pick up inflammation (bone marrow edema for example) if it is there.

How is she feeling now?
 
Well at this moment she's drinking barium so that's not fun.

I did end up taking her to the chiropractor and he really did help her pain and mobility. It's a stop gap so she can manage without Acetaminophen.
 

Maya142

Moderator
Staff member
Just make sure he does not do manipulations. That can cause damage to an inflamed spine. Inflammation can make the spine brittle and manipulations could actually cause spinal fractures, which is why seeing a chiropractor is not recommended by every pediatric rheumatologist we've seen and by the Spondylitis Association of America. Physical therapy is much safer.
If he can help her with stretches or gentle massage, that would be great. Just stay away from manipulations.
 

Maya142

Moderator
Staff member
Also wanted to say, with respect to school, having a hot shower in the morning REALLY helped my daughters. It did mean they had to get up earlier than they wanted to, but it made such a difference. So did having a heating pad in the nurse's office - they missed much less school if they were able to take a break from sitting and could lie on a heating pad (or an ice pack - whatever feels better). You can also talk to her school and see if they can accommodate her by changing her schedule - it would probably be for next year and not this year, but my daughter had a study hall in the morning so that if she had to go in late, she wasn't missing anything.

Does her middle school have lockers? If so, she should make sure to keep her backpack as light as possible. At the beginning of the school year, my daughters' guidance counselors made sure they had lockers close to their classes. We also made sure they had two sets of textbooks so they didn't have to carry around really heavy textbooks (though now since times have changed, many schools just give kids tablets instead!). Their textbooks were always kept in their classes, not their lockers, so they didn't have to carry them. But they were able to put notebooks and folders into their lockers so that their backpacks were always light. They never took binders to school - they kept them at home and just put the relevant papers in folders (as a bonus, they learned to be very organized when they were quite young).

Even small things like comfy clothes help - leggings, for example, instead of stiffer jeans. Supportive sneakers also help - one physical therapist told us that if the shoe is so stretchy and flexible that you can bend it in half, then it is NOT supportive. A good backpack that has chest straps also helps. Some kids use rolling backpacks but my daughters struggled with elbow/shoulder arthritis so that did not work for them. If the school has a lot of stairs, you can get permission to use the elevator by putting it in her 504 plan (or whatever the equivalent is in Canada).

If you can take her swimming, that also really helps. If she can't swim because of pain, simply being in the water helps my girls. We found a gym that had a therapy pool and allowed older kids (I think it was 12 and up, but they would probably make an exception for a medical condition).

Just wanted to say that even really small things can make a big difference to pain levels. And that if she needs Tylenol till she sees a rheumatologist, I would not stop it completely. Being in chronic pain can cause a pain syndrome, so it's better to use the Tylenol as long as your doctors are ok with it.
 
Thank you so much for all the advice. We got the MRI results which showed no signs of active Crohn's, which is interesting because her fcal is over 2000.
What it did show was an abnormal enhancement on vertebrae t12. So we are instructed to follow up with our family doctor.
Her back pain is gone right now and was also absent during the MRI.
 

Maya142

Moderator
Staff member
Enhancement could mean inflammation. T12 is the last thoracic vertebra (if I'm remembering correctly!!). I know she has more lower back pain and I wonder if the MRI did not look at the lumbar vertebrae or her pelvis. Regardless, I think it's enough to suggest axial arthritis and to really push for a referral to a pediatric rheumatologist.

I have to say, thoracic spinal involvement in a child so young is unusual. If it is truly axial arthritis, it does suggest aggressive arthritis. I know that is the last thing you want to hear. Typically, with axial arthritis, the SI joints are affected first and then the lumbar spine and then the thoracic spine and finally the cervical spine - it ascends. In women (and girls), sometimes the cervical spine is involved first - before the SI joints. So it can vary.

But I really think you need an MRI of her pelvis and lumbar spine.

If she does have axial disease, then you definitely want to treat aggressively. That could be adding Humira back, since she did not have these symptoms on Humira or trying Remicade (which I know is complex, to say the least, for you).

Considering her MRI did show something in her spine, I would definitely avoid having a chiropractor do any sort of manipulations and even massage should be extremely gentle. Has she ever had a DEXA scan? Because inflammation in the spine can lead to low bone density and that can lead to very painful stress fractures, from normal movements.

Did the MRI look at just her small bowel or her colon too? I also think scopes would make a lot of sense right now.
 

Maya142

Moderator
Staff member
Wait, seriously?! With a history of severe Crohn's and an FCP of over 2000? And they won't scope her?

My guess, with that very high FCP, is that there is colonic inflammation. And perhaps Stelara is not controlling that enough for her. But you do need a scope to figure it out. Is it possible for your GI to arrange a scope elsewhere?

Really sorry to hear that you did not get clear answers. The uncertainty is the hardest part of me.

Will they do an MRI of her back or is that not allowed either? I mean, assuming you get to your GP or a rheumatologist who can order one?
 
Enhancement could mean inflammation. T12 is the last thoracic vertebra (if I'm remembering correctly!!). I know she has more lower back pain and I wonder if the MRI did not look at the lumbar vertebrae or her pelvis. Regardless, I think it's enough to suggest axial arthritis and to really push for a referral to a pediatric rheumatologist.

I have to say, thoracic spinal involvement in a child so young is unusual. If it is truly axial arthritis, it does suggest aggressive arthritis. I know that is the last thing you want to hear. Typically, with axial arthritis, the SI joints are affected first and then the lumbar spine and then the thoracic spine and finally the cervical spine - it ascends. In women (and girls), sometimes the cervical spine is involved first - before the SI joints. So it can vary.

But I really think you need an MRI of her pelvis and lumbar spine.

If she does have axial disease, then you definitely want to treat aggressively. That could be adding Humira back, since she did not have these symptoms on Humira or trying Remicade (which I know is complex, to say the least, for you).

Considering her MRI did show something in her spine, I would definitely avoid having a chiropractor do any sort of manipulations and even massage should be extremely gentle. Has she ever had a DEXA scan? Because inflammation in the spine can lead to low bone density and that can lead to very painful stress fractures, from normal movements.

Did the MRI look at just her small bowel or her colon too? I also think scopes would make a lot of sense right now.
I assume that the mri looked at colon too because it's our main option for imaging but I am only assuming. It wasn't meant to look at her spine at all but it was visible and noted so they called me to urge a follow up.
I am just hoping it's not arthritis. Maybe an injury that we never noticed?
I won't take her back to the chiropractor. I feel terrible now for doing it once. It gained her 4 pain free nights but I can see the discomfort creeping back in tonight.
I have an appointment with GP for her in a few weeks then it's his job to push a referral. He's very cautious, so I think he'll do that for her.
The pain is mid-lower back.
She had some problems walking as a small child before Humira, and has had heel and wrist complaints over the years but nothing really serious. So maybe it doesn't follow the pattern of axial arthritis and it's nothing but a blip.
Never had a DEXA scan.
 
Wait, seriously?! With a history of severe Crohn's and an FCP of over 2000? And they won't scope her?

My guess, with that very high FCP, is that there is colonic inflammation. And perhaps Stelara is not controlling that enough for her. But you do need a scope to figure it out. Is it possible for your GI to arrange a scope elsewhere?

Really sorry to hear that you did not get clear answers. The uncertainty is the hardest part of me.

Will they do an MRI of her back or is that not allowed either? I mean, assuming you get to your GP or a rheumatologist who can order one?
We did travel to get the MRI this weekend(it only took a few weeks to get in due to a cancelation opening) they are running it 7 days per week and able to staff it. I think it's overnight stay procedures and anything that uses the O.R. that we can't access. I just will need to get through my GP to a referral to peds Rheumatologist, wait for that appointment, get her to order a specific MRI for the back stuff, then wait some more for the next MRI appointment. At least 2 months I would guess.

If her fcal is still high after 6 weeks of EEN the GI will have to do something.
 
The GI office suggested maybe a herniation or an infection in her spine. They did not have the images but only the radiologist's report.
 

Maya142

Moderator
Staff member
She had some problems walking as a small child before Humira, and has had heel and wrist complaints over the years but nothing really serious. So maybe it doesn't follow the pattern of axial arthritis and it's nothing but a blip.
Unfortunately, that is also consistent with ERA - heel pain (enthesitis) and wrist pain (could be enthesitis or arthritis). Heel pain is a classic sign of ERA.

It could still be that she injured herself when she was younger, but there are a lot of red flags here, which is why I'd want to follow up as soon as you can get an appt. I know that is a LOT easier said than done. Can they put you on a cancellation list for the GP? Then you can get a referral to rheumatology.
She definitely needs to see a pediatric rheumatologist to rule this out - not a family doctor or GP or even a pediatrician.

An infection in the spine should cause systemic symptoms - like fever. That's what we were told anyway. Not sure about a herniation - she is young for that. And I would expect to see it on the MRI as an incidental finding. She doesn't play a lot of sports, does she?
 

my little penguin

Moderator
Staff member
Wow that is a very long wait and to be in pain
Ds saw Rheumo the last full week in November and had mri of joints there following week (1st week in Dec ) completed and done
Un dx kids can wait for scopes from Gi up to 2 months unless they are bad (minor issues wait )
But crohns kids when flaring get admitted and scopes the next day
I feel so bad she has to wait /flare and be in pain
Can they admit and scope through pediatric hospital / ER ? I understand the adult hospital being overwhelmed but not kiddie hospital s

akso they use the Gi procedure room and not OR for all scopes ?
Is that and option ?
 
Unfortunately, that is also consistent with ERA - heel pain (enthesitis) and wrist pain (could be enthesitis or arthritis). Heel pain is a classic sign of ERA.

It could still be that she injured herself when she was younger, but there are a lot of red flags here, which is why I'd want to follow up as soon as you can get an appt. I know that is a LOT easier said than done. Can they put you on a cancellation list for the GP? Then you can get a referral to rheumatology.
She definitely needs to see a pediatric rheumatologist to rule this out - not a family doctor or GP or even a pediatrician.

An infection in the spine should cause systemic symptoms - like fever. That's what we were told anyway. Not sure about a herniation - she is young for that. And I would expect to see it on the MRI as an incidental finding. She doesn't play a lot of sports, does she?
No to sports, she babies her body. Only swimming and short walks work for her. She has never been an athlete.
The only reason we start at GP is that he HAS to refer her. I can't go around that hoop. Health care works differently in Canada.

I asked the nurse who called about the MRI if H should have a fever with a spinal infection and he explained to me how it can happen in a pocket, so to speak, and not cause a fever but the whole thing sounded pretty implausible. It was a GI office so they don't specialize in this.

A few years ago she visited peds rheumatologist and she checked out OK (just hypermobile joints) but I was told it's possible she has arthritis but it would be masked anyway by the Humira. Unfortunately it was longer than a year ago, so we have to get a referral and start over.

It's OK, we'll get there. If something becomes unbearable before we do, I will take her to the emergency room.
 
Wow that is a very long wait and to be in pain
Ds saw Rheumo the last full week in November and had mri of joints there following week (1st week in Dec ) completed and done
Un dx kids can wait for scopes from Gi up to 2 months unless they are bad (minor issues wait )
But crohns kids when flaring get admitted and scopes the next day
I feel so bad she has to wait /flare and be in pain
Can they admit and scope through pediatric hospital / ER ? I understand the adult hospital being overwhelmed but not kiddie hospital s

akso they use the Gi procedure room and not OR for all scopes ?
Is that and option ?
There isn't another option for scopes at this time. The children's hospital is affiliated with the adult hospital and to some degree shares resources. If there was an obvious emergency I would go there with her, but she is under care and next steps are only after 4 more weeks of EEN and an fcal result.

It's just a very different system in this country.
 
The MRI raised the possibility of an infection of the T12 vertebral bone ( osteomyelitis). This is what the Merck Manual says:

Vertebral osteomyelitis usually develops gradually, causing persistent back pain and tenderness when touched. Pain worsens with movement and is not relieved by resting, applying heat, or taking pain relievers (analgesics). People often do not have fever, which is usually the most obvious sign of an infection.

Does her pediatrician/GP know about this MRI abnormality? I’d think that would get her in to the office quickly.
 

Maya142

Moderator
Staff member
A few years ago she visited peds rheumatologist and she checked out OK (just hypermobile joints) but I was told it's possible she has arthritis but it would be masked anyway by the Humira. Unfortunately it was longer than a year ago, so we have to get a referral and start over.

It's OK, we'll get there. If something becomes unbearable before we do, I will take her to the emergency room.
M's Crohn's was actually not diagnosed for the same reason - she was on Humira and that kept her FCP relatively low for a Crohn's patient, so the ped. GI we were seeing did not see any reason to scope - even though she had obvious symptoms starting at age 11-12 (anemia, 15 lb weight loss, abdominal pain) and more subtle symptoms starting when she was 4 or 5. But once she was on Humira, those symptoms went away and so then she just wasn't scoped till years later when she switched to a biologic that doesn't work for IBD (Enbrel) and the symptoms came back, when she was 15.

So it absolutely possibly that H had arthritis that was controlled by Humira when she saw the rheumatologist. Also, if the rheumatologist did not do a pelvic/spinal MRI back then, it would have been impossible to truly rule it out.

If she has not been playing sports, then it's unlikely that the heel and wrist issues were injuries, though I suppose anything is possible. But heel pain is really a major symptom of ERA/spondyloarthritis, especially in kids.

Sometimes kids with arthritis refuse sports and only do what feels good...i.e. low impact activities like swimming and walking. My girls didn't do this but we know plenty of kids who just would not play sports or dance because they were in pain or stiff and didn't know how to articulate it.

Enhancement could be an infection based on what @xmdmom said, so perhaps that would be one way to get her in to see the GP soon. And maybe that will speed things up. I'd ask to be placed on the cancelation list for appts. and later MRIs, because as @my little penguin said, two or three months is a long time for a kiddo to be in so much pain.

I always worry about kids in chronic pain because chronic pain can cause pain amplification (also known as "central sensitization") - that is how M developed her pain syndrome. And pain syndromes can be VERY hard to treat.

That said, even in the US it is not uncommon to have to wait months to see a pediatric rheumatologist...often parents are forced to take their kids to the ER. But I think a "wait and watch" approach is reasonable since COVID cases have gone up recently (at least, they have here with the new variant). But I would still ask her GI to push once you've seen the GP. And of course, track pain - when is it worst (morning? Evening? Same all the time?), what helps, what makes it worse, is she limping or does she walk more stiffly in the morning (or is she slow to get ready for school - for M that was a sign of significant stiffness), does she have any swollen peripheral joints, is she waking up at night in pain etc.

Also definitely tell the doc about issues walking when she was younger. That is also concerning.

Sending big hugs to you and H!!! She is really a trooper.
 
Milder back pain since the chiropractor, 2-3 regularly, higher if she tries to do fun stuff. Very tired all the time, on week 4 of EEN tomorrow and maintaining her weight, no bowel symptoms. We retest calpro again midway through January and make med decisions based on those results.
 

Maya142

Moderator
Staff member
I have not heard for Schmorl nodes but I would still say you need to see a pediatric rheumatologist to rule ERA. Axial arthritis can become incredibly hard to control, so if she has it, it should be identified early and treated.
PLEASE be very careful with chiropractors - they can really cause harm. Has she had a DEXA scan recently? Do you know if she has osteopenia or low bone density?
 
It really seems like a no brainer to check bone density - but no. Schmorl's node is when the soft part inside the vertebrae somehow gets pushed up or down in the adjacent vertebrae but my question is how on earth does that even happen with no injury? That was just something the GP threw out there.
I'll be curious which specialist she ends up with. He didn't mention a rheumatologist but he did also say maybe orthopedic surgeon which might be better.
The chiropractor was before the MRI and I won't take her back unless advised.
 

Maya142

Moderator
Staff member
A GP is really not going to know anything about enthesitis related arthritis. That’s actually what delayed both my daughters’ diagnoses - the pediatrician felt it was related to sports, so we were sent to orthopedics and sports medicine which just wasted a lot of time. That said, a good orthopedist did then refer us to a pediatric rheumatologist and once we finally got there, they were both diagnosed relatively quickly (my older one immediately, the younger one took longer).
My younger daughter had only one joint that was involved in the beginning (well, she appeared to only have one joint involved but we later discovered she’d had inflamed hips and SI joints for quite a while because there was already erosion and cartilage wear and tendon issues when she had MRIs). Her swollen knee showed bone marrow edema on an MRI and she was diagnosed with a bone contusion - except she could not remember having injured it in any way. That was when she was 10.5 years old. The pediatrician assured us that it was uncommon to have two kids with JIA and unfortunately we believed her.
She wasn’t diagnosed till a couple days after her 12th birthday when she’d had a swollen knee for months and when another MRI was done which showed no cause for the amount of fluid and inflammation in her knee (no injury) so then we were finally sent to pediatric rheumatology by the orthopedist. When we met the pediatric rheumatologist we learned then that bone marrow edema is very common in ERA.
M’s unusually aggressive arthritis is thought to be a combination of genetics and not being treated early or aggressively enough. I would hate to see H go down that same path.
 

Maya142

Moderator
Staff member
Honestly, I would just ask for a referral to a pediatric rheumatologist. The MRI she had was not one specifically focused on her spine and SI joints and could easily have missed inflammation there. Different types of MRIs are used for different issues - for example, for the SI joints, they use STIR imaging so it doesn’t have to be with contrast. That’s likely different from an abdominal MRI.
Fatigue could be from arthritis or Crohn’s - it’s hard to say without a proper evaluation.
 
I second that. My son's GP referred him to a neurologist and we lost almost a year. The only reason we found out about his arthritis was because he had a pulled groin muscle and we went to ER and that was the path that referred us to rheumatolgist and then GI. Although MRI's were ordered on the spine by the neurologist, it was only for the neural aspect, not the bone aspect, so arthritis was missed. So definitely going to a rheumatolgist would be best.
 
Top