Latest lab results, what questions should I be asking?

[Crohns dad]

10 years old, on Infliximab since Nov ‘21. Started at 10mg/kg, then 7.5mg, then 5mg. Calpro started going up (never been lower than 275) so went back to 10mg for last 3 infusions (last one was Wednesday).

calpro >3000, was 2880 last month.
ESR 45, was 33 last month
albumin low
Iron is low

They tested him for cdiff a couple of months ago and one test came back negative but the antibody test came back positive. We think he had cdiff in early ‘21, prior to IBD diagnosis, but he was tested and negative. They wanted to treat him for cdiff a couple of months ago after that test but since he wasn’t having any symptoms decided not to. He had some diarrhea prior to that test but it only lasted for two days/once per day.

He had scopes in August ‘23 and they looked really good, as well as CT scan.

We’ve been asking if Infliximab is working for close to a year as we’ve seen his sedrate and calpro rising since he went to 5mg/kg.

We meet with his GI doc this Wed and have a referral to a different GI doc in August.

He has lost some weight (5lb or less) since April when his cheek swelled up (had to take him to ER and took amoxicillin), has a slightly decreased appetite, no diarrhea or belly pain.

What questions would you ask?

 

[Scipio]

I would ask why they are lowering the infliximab dose when the inflammation markers, especially calpro, are rising? Docs usually increase the drug dose in response to worsening disease, not decrease it.

I would also ask what his blood concentration of infliximab is and whether anti-infliximab antibodies are present.

 

[Crohns dad]

I confused you. They raised the dosage to get his calpro down but it isn’t working. His last trough level was around 7 but he was on the 5mg dose then. The last time they tested it on 10mg dose(over a year ago) it was around 30.

 

[Scipio]

In that case, ask whether he has anti-infliximab antibodies in his blood and whether those levels are rising.

 

[Guerrero]

I’d also ask if they plan to do other scopes soon to check what is really going on inside

 

[Crohns dad]

OK. Thank you both.

 

[Pangolin]

I'd be very concerned about the ESR and calprotectin. Ask about getting an MRI.

 

[my little penguin]

Agree
Scope s and imaging are needed to know if it’s working
Increasing fecal cal and other markers plus weight loss are big red flags for increased inflammation/damage
Kids are growing gaining machine especially 10 year olds
If weight gain is stalled or there is weight loss
The body is using too many resources elsewhere
Big time issues
Definitely time for a second opinion
Check the wait list weekly for the second opinion place
People cancel all the time

 

[Andersen007]

Agree with essentially everything that was said. This high calpro, serum markers, along with weight loss as well as low iron + albumin levels in a kid, are big red flags for inflammation and potential bowel damage. If his calpro was never lower than 275 I dont really understand why dosage was decreased in the first place, as that still indicates (although arguably low level) of inflammation. For context my calpro is usually around this 275 level on a strict diet and I still constantly get recommended to go on a med to lower it to be on the safe side. And I am already an adult so my growth is not really hindered by this.

Is it an option for him to go on Exclusive Enteral Nutrition while they sort out the meds? Even after the put him on one that works, it can take weeks, if not months, for it to start its work.

 

[Crohns dad]

He’s also ASD with sensory issues, especially food. He’s currently on a 90% formula diet (pediasure and Kate farms) by not by tube.

The only other food he eats is goldfish crackers.

I guess they thought things were going in the right direction when they started lowering his dosage but his 1st labs after the change to 5mg/kg showed signs of it not working as well and we have been asking them about it ever since. Before they changed him back to 10mg/kg they did scopes and CT and they all came back great so it’s very confusing to me.

 

[Pangolin]

Anti-TNFs can have some paradoxical effects, especially after a dose increase. Sometimes I think the body fights even harder against the Anti-TNFs to increase inflammation. I would strongly recommend ending the Anti-TNF and switching to a different treatment.

I would check for any area that could need surgery (MRI/MRE) and switch to Stelara or Skyrizi.

 

[my little penguin]

So if he is already een (except goldfish crackers ) and on remicade higher dose
What is the dose frequency?
Every 4 weeks or every 6 weeks or every 8 ?
If it’s every 8 that might be the issue
Kids burn through biologics very very quickly
Mine never went more than 6 weeks on remicade (this was before fecal cal was a test to do )
Stelara he has to take with methotrexate and every 4 weeks instead of standard 8 week dosing .
If meds are working fecal cal is below 50
My kiddos has sat at below 15 for years
When he is on the right med and right dose
Above 50 is inflammation that is being left to fester and cause damage

 

[Crohns dad]

Every 8 weeks



How quickly does calpro change? Can it show improvement but then go up again in 8 weeks if he’s burning through the Inflixima? I know sedrate can be kinda slow to change but we sure hoped to see it go down some since last time, not up.

Also, his Crohn’s is in his small intestine.

 

[my little penguin]

Get a second opinion
With increasing fecal cal and blood markers
They should have bumped to every 4-6 weeks not 8 weeks
Months ago
Fecal cal can take months to go down
Sed rate is the past two weeks
Crp past 48 hours

 

[Maya142]

Fecal Cal can take a while to go down. SED rate or ESR does take a while to go down while CRP goes up and down more rapidly.
Honestly, I agree with a second opinion. It can't hurt to get a second pair of eyes to look at his case. I am also very surprised they didn't move him to infusions every 4 weeks earlier or at least every 6. Many kids, especially if they are really inflamed, metabolize the drug very fast and so it's quite normal for kids to need Remicade every 4 to 6 weeks.

So when they did scopes, did they also do an MRE? The CT scan - was it a regular CT scan or a CTE (with contrast you have to drink, and if he can't drink it they can place an NG tube to get it in) as well as IV contrast? Because a regular CT is not as accurate as a CTE. I'm wondering if the scopes didn't reach the area that is inflamed. 3000 is really high, especially for small bowel disease.

My daughter did well when we increased the dose and decreased the frequency on Remicade. Hopefully that's one thing they can do in the interim while you figure out whether a drug change is needed. The other options are steroids or EEN (since you're almost doing it, anyway) to induce remission, while you start him on a new treatment plan and wait for it to kick in.

 

[Crohns dad]

His CT was with contrast. They suggested an MRI but when we told them the only way he could do an MRI is under sedation they refused. He’s ASD with sensory to many things including sound. He basically has a panic attack when it thunders, during smoke alarms, etc. He watches the sky every day out of fear it may storm and thunder. It’s sad, honestly. My heart breaks daily.

 

[my little penguin]

Ct with contrast is not the same as CTE (ct with entography )
Might be worth asking if they have movie goggles
I know for my kiddo at age 6 at the Time (really couldn’t sit still much but movie googles look like a pilot helmet with the ears covered and movie on the glasses . You can bring the dvd movie for the kiddo to watch listen to …

 

[Crohns dad]

Maybe it was a CTE? He had contrast that he drank as well as intravenous. Is that CTE? Anyway, it came back with no signs of inflammation. I believe his Calpro was around 1500 then. It’s very confusing.

 

[Andersen007]

It could have been CTE, when I had a normal abdominal CT they only did IV contrast (borderline useless to assess Crohns status but they didnt suspect it back then). The only time I had to drink it was when doing MRE (which is like CTE but with MRI). Probably the results paper should have some sort of clear indication somewhere. Here in Europe its uncommon to do normal CT once they know its Crohns, except perhaps in emergency settings.

 

[Crohns dad]

In July 2023 Calpro was 2212 mcg/g

Sept. 2023
Impression
-- Interval resolution of previously demonstrated bowel wall thickening. No recurrent or residual bowel wall thickening, wall hyperenhancement, or luminal narrowing is seen to suggest active inflammation of the bowel.
Narrative
EXAM: CT ENTEROGRAPHY ABDOMEN/PELVIS W CONTRAST DATE: 9/16/2023 11:10 AM ACCESSION: 20231892984UN DICTATED: 9/18/2023 8:36 AM INTERPRETATION LOCATION: Main Campus CLINICAL INDICATION: 9 years old with elevated calprotectin, prior thicken TI on CT (2021) - K50.00 - Crohn's disease of small intestine without complication (CMS - HCC) IMAGING TECHNIQUE: A helical CT scan was obtained with IV contrast from the lung bases to the pubic symphysis after administration of neutral oral contrast. Images were reconstructed in the axial plane. Coronal reformatted images were also provided for further evaluation. COMPARISON: CT abdomen pelvis November 6, 2021. FINDINGS: Tubes/lines: No radiopaque tube or line identified. Lung Bases: Normal. No pulmonary nodules within the lung bases. Liver: Normal. Biliary: Normal. No intra or extrahepatic biliary ductal dilation. Fluid filled gallbladder, without calcified stones. Spleen: Normal. Pancreas: Normal. Adrenals: Normal. Kidneys : Normal. No urinary tract dilatation Ureters: Normal caliber. Bladder: Normal. Moderately distended with urine. Reproductive Organs: No mass. Lymph Nodes: No lymphadenopathy. Bowel: The lower esophagus and stomach are unremarkable. No dilated loops of small bowel or colon. No focal luminal narrowing. No bowel wall thickening. No bowel wall hyperattenuation. Appendix: Normal caliber appendix visualized without appendicolith or surrounding inflammatory changes (series 2 image 95). Peritoneum and mesentery: There is trace volume free fluid, in the right lower quadrant adjacent to the appendix. No free air, abscess or lymphadenopathy. Retroperitoneum: Normal. Vessels: The portal venous system is patent. The IVC is unremarkable. Normal caliber of the aorta. Bones: Normal.

 

[my little penguin]

That was a CTE (ct with entography)
Which was normal
I know given his issue he may not be able to swallow a pill cam (capsule endoscopy )
But the GI can place the capsule in the duodenum during the next scope
All your child would have to do would be wear a belt with a recorder (size of a Walkman ) on his waist after the scope
After a few hours they take off the belt and you watch for the “pill cam “ in a collection hat
Gets a better visual of small intestine
Only to be done after an mri /ct
To make sure no strictures are present

 

[asadmom]

Maybe it was a CTE? He had contrast that he drank as well as intravenous. Is that CTE? Anyway, it came back with no signs of inflammation. I believe his Calpro was around 1500 then. It’s very confusing.

My son had elevated calpro and a normal CT as well. These tests definitely can present a contradicting picture. As long as other biomarkers and the symptom (weight loss) support the elevated calpro, I tend to ignore and not bother with the innocent test results.

I hope your second opinion in August can help bring clarity and maybe she would even switch you over to Stelara/Skyrizi. Fewer at-home injections just sounds like a much more peaceful option for a young ASD kiddo. Make sure you are on the waitlist as well so you can get notified via MyChart when there is a last minute cancellation.

 

[Crohns dad]

So we met with GI today but a different doctor who looked over all of our sons stuff over past days. He suggested a few things to consider and we decided that before we change meds we’ll try a different infusion rate (6weeks instead of 8) and another level check to see where things stand at 6 weeks on 10mg/kg, possible addition of methotextrate (sp?), possible short course of steroids, etc but a medication change is possible depending on how things go from here. We feel good about things right now and hope to see improvement soon.

 

[my little penguin]

Given your child’s age trying to stick with the med makes sense
Skyrizi /Stelara are only approved for PsA in teens (12 and up )
So at 10 it’s harder to get approval for those
Mtx can make them feel flu like nausea etc…
Some do better with pills others with shots in terms of nausea /side effects

folic acid daily helps

 

[Maya142]

That sounds like a good plan! I like the second opinion doc - increasing the frequency of Remicade makes a lot of sense. I also agree on not abandoning Remicade too early - especially if scopes and his CTE were normal. And MTX can increase levels of Remicade in the body so that he's not burning through it too fast.
MTX can be hard on some kids and other kids take it without any symptoms. My daughters both do better on the injections and often GIs prefer to prescribe those, since then the entire dose is absorbed vs. with pills where absorption varies. My younger daughter was just a couple years older than your son when she started MTX and she found the shot pretty much painless and actually did it herself from when she was 13. It's a teeny tiny needle - usually an insulin syringe.
Our tricks to avoid nausea with MTX included daily folic acid and doing the shot before bedtime and before a weekend so my daughters could rest the next day if they felt like it. You can also give Zofran before the shot if necessary.
My younger daughter struggled with side effects as a teen, but now, as a young adult, she has none! She doesn't bother with taking it on a weekend or taking Zofran before it.
Steroids are also a good option to induce remission. Sometimes that's all you need - a course of steroids and then Remicade will take over.
If that all fails, then I would consider another med. I know there are a few kids on the forum younger than your son on Stelara but I can't think of anyone his age on Skyrizi.