Update on long-term EEN, switching from Remicade

[Pangolin]

My son was diagnosed 2 years ago at age 10. Perianal abscess, colonic inflammation, too much inflammation at the small/large intestine junction to see into the opening during colonoscopy.

I'll skip most of the intervening details for now, but due to substantial perianal inflammation we ended up using EEN (at about 85% formula) in addition to Remicade for about 8 months. Then we tested a little more food, but after some bad results we had to bump up the formula percentage to essentially 100%. He's been on essentially 100% formula since April of this year.

Meanwhile, Remicade dose/frequency was bumped up twice, and side effects became more noticeable. Eventually we decided additional dose increases weren't the correct answer and stopped Remicade as of May.

Going off Remicade resulted in some unusual effects--he got what looked like a substantial infection right after stopping, with fever, sore throat, esophageal pain when swallowing, and diarrhea. It looked to me like there were infections that he wasn't fighting off properly due to the Remicade that all were suddenly being fought off. It could also have been a sort of low level immune reconstitution inflammatory syndrome. Fortunately he felt much better after a week or so (possibly due partly to some amoxicillin).

Current symptoms: stool has been very soft recently, and some transient (less than 30 seconds) abdominal pain happens a few times a week

Now we have results from his first colonoscopy since diagnosis:

Large intestine looks pristine (Which is a big deal considering all the perianal problems last year. Don't let anyone tell you EEN doesn't work for colonic/perianal inflammation.)

Stricture at the ileocecal valve, but this seems to be better than it was 2 years ago when they couldn't look into it at all. This time they could peer in and see at least one small ulcer on the other side (in the terminal ileum).

Exciting new development: mild duodenal ulceration

So, some good and some not as good. It's interesting to me how the large intestine can be totally healed while other problems remain.

Entyvio looks like it's on the agenda. We'll also see if oral vancomycin does any good.

 

[crohnsinct]

Congrats on the improved scope results! EEN "can" work in the colon but does not have as good results for the colon and perianal issues as it does for small bowel. Also, just like drugs, it works for some and not for others. Remicade works very well for perianal issues.

Sorry the EEN hasn't held all small bowel disease. That's a shame as EEN is supposed to work better in the small bowel than colon.

Did they say why they are choosing Entyvio? I am curious because it doesn't work that well in the small bowel. Actually has pretty poor results in small bowel. Stelara does much better but doesn't treat the colon as well.

You may have read my daughter's update. O has disease in both small and large bowel. For her large was the real problem area so after she failed Remicade, we chose Entyvio. However, now her ileum is causing issues. They say the only drugs successful at both small and large are Humira and Remicade. Did the doc have a reason for not suggesting Humira next. It wasn't the best option for O since she stopped responding to Remicade. I am curious what side effects your son was experiencing.

Fwiw in addition to continuing Entyvio for the colon, we are probably going to treat O's small bowel disease cycling on and off EEN until a new drug comes out. We are doing it for her ileum and it has worked for her colon in the past but it doesn't work for everyone. Some kids with severe refractory disease don't respond. Her GI also warned us that just like drugs the effects of EEN can wane over time. So we may not see a response this time or she may lose response. We'll see.

Good luck with your decision and new treatment path!

 

[Pangolin]

Congrats on the improved scope results! EEN "can" work in the colon but does not have as good results for the colon and perianal issues as it does for small bowel. Also, just like drugs, it works for some and not for others. Remicade works very well for perianal issues.

Sorry the EEN hasn't held all small bowel disease. That's a shame as EEN is supposed to work better in the small bowel than colon.

Thanks. Definitely there's a lot of individual variation. Remicade just wasn't doing a lot for the perianal region in our case, yet EEN worked like magic for that region (seriously, it was amazing to see). My guess is that EEN is also helping at the small intestine currently, but it just isn't doing enough.

Did they say why they are choosing Entyvio? I am curious because it doesn't work that well in the small bowel. Actually has pretty poor results in small bowel. Stelara does much better but doesn't treat the colon as well.

I had actually kind of forgotten about Stelara as a possibility. I think the doc mentioned that in his experience he's had somewhat better results with Entyvio than Stelara overall, but I guess Stelara is also on the list if Entyvio doesn't work. Humira also did come up, but given our experience with Remicade we're more interested in trying a different mechanism first. But if needed Humira is also a possibility.

I'm hoping soon the Entyvio or other drugs allow my son to eat some more foods, too. Long-term EEN wasn't something we really *wanted*, but it's just been necessary.

You may have read my daughter's update. O has disease in both small and large bowel. For her large was the real problem area so after she failed Remicade, we chose Entyvio. However, now her ileum is causing issues. They say the only drugs successful at both small and large are Humira and Remicade. Did the doc have a reason for not suggesting Humira next. It wasn't the best option for O since she stopped responding to Remicade. I am curious what side effects your son was experiencing.

Remicade was resulting in a lot of eye irritation, at least one small petechia under his eye, some chest/esophageal pain when swallowing, lots of sniffles, possibly some subtle yellowness of skin tone, some transient mildly elevated liver numbers, and general immune system weirdness. I think it really increased allergic reactions to everything and made it harder to fight off infections properly. Mostly stuff a doctor would tend to downplay, but as a parent it all made me concerned. Things seem more normal now in general.

Fwiw in addition to continuing Entyvio for the colon, we are probably going to treat O's small bowel disease cycling on and off EEN until a new drug comes out. We are doing it for her ileum and it has worked for her colon in the past but it doesn't work for everyone. Some kids with severe refractory disease don't respond. Her GI also warned us that just like drugs the effects of EEN can wane over time. So we may not see a response this time or she may lose response. We'll see.

Good luck with your decision and new treatment path!

Good luck to your daughter, too. I really hope the g-tube and EEN works for her.

 

[pdx]

Thanks for the update, and I hope that whatever you end up trying next works well for him.

 

[Pangolin]

Further update:

Hemoglobin down to 9.6
White blood cells: normal (was slightly elevated)
ESR down from 50 and 46 to 18 (just slightly elevated now, lowest reading in a year)
CRP up slightly to 15 (mildly elevated)

Definitely need to work on this (oral vancomycin started today, should start Entyvio soon), but I think the big picture is one of improvement despite (because of? I think the Remicade actually had a paradoxical inflammation increasing effect) going off Remicade and while sticking with EEN.

 

[crohnsinct]

IDK. That hgb sounds pretty low. Especially for a boy. What are the normal ranges and how is it being measured? Same with that CRP. is that mg/l or mg/dl? If mg/l that is 1.5 mg/dl and that is three times normal. True, not a freak out moment but still high and needing to be treating.

Why are they starting him on vancomycin? Does he have colonic inflammation? Entyvio is a good treatment for colon but not necessarily small bowel. His trouble area is the small bowel right?

Remicade paradoxical inflammation? Was his inflammation even higher on Remicade? I seem to remember you saying he was in a good place after Remicade and EEN. If inflammation increased, I wouldn't necessarily say that Remicade caused inflammation as much as maybe it wasn't treating the Crohn's and inflammation was increasing because of an incorrect treatment. Also, if Remicade (anti tnf) wasn't a correct treatment for him then I am a little confused as to why they chose another tnf based drug. Granted it is a different mechanism but Entyvio still addresses tnf.

If inflammation got worse after Remicade was dc'd then I understand staying with a tnf drug as it was obviously doing something because inflammation increased after the drug was dc'd.

I hate that any kid has to suffer at all and truly hope you are able to get him back to a good place. It's a shame that the EEN wasn't able to hold him. I was truly hoping that he would be the exception to the rule.

 

[Pilgrim]

We recently had a scope that showed a clear colon (had been very bad in the past), clear TI, but found new duodenal activity.
So just wondering if your doc is adressing the duodenum in a specific way or what the comments were there?
We were told that EEN or partial ( in our case 3 shakes per day) adresses this section very well.

Are you keeping EEN as well as Entyvio? What amount of EEN?

 

[my little penguin]

@Pilgrim
I thought the colon looked clean but biopsied showed chronic inflammatory changes (which would means disease still present in colon)

Duodenum is hard to treat
Good luck with that

 

[crohnsinct]

This seems like a good time to also mention that you have your best shot at remission with your first biologic. Once you fail a biologic, your chances at success with subsequent biologics are less. This is why when O got paradoxical psoriasis we didn't abandon Remicade and also why even though she was losing response to Remicade we hobbled along for 3 years trying to keep it going. Her docs knew that once we left it, it would be an uphill climb. Now currently they don't think this necessarily applies to if you had an allergic reaction or chose to dc.

Horse out of the barn but I wonder if de escalating might have helped the issues he was experiencing. We are trying that with T right now because her psoriasis is insane.

 

[Pangolin]

IDK. That hgb sounds pretty low. Especially for a boy. What are the normal ranges and how is it being measured? Same with that CRP. is that mg/l or mg/dl? If mg/l that is 1.5 mg/dl and that is three times normal. True, not a freak out moment but still high and needing to be treating.

I know, 9.6 is low. It should be at least 12 I believe. The CRP is 1.5 mg/dl, which is definitely higher than it should be but not super high. We're not satisfied, but we do see some improvements (healing of the large intestine, ESR down to 18, actually being able to see the ileum with the scope).

Why are they starting him on vancomycin? Does he have colonic inflammation? Entyvio is a good treatment for colon but not necessarily small bowel. His trouble area is the small bowel right?

No colonic inflammation. Vancomycin is due to this study: https://www.crohnsforum.com/threads/oral-vancomycin-study.85312/

Notice the positive results there, including with anemia. Some antibiotics have helped before, so this seems worth a try.

Entyvio has positive results in the small intestine, too.

Remicade paradoxical inflammation? Was his inflammation even higher on Remicade? I seem to remember you saying he was in a good place after Remicade and EEN.

Yes, overall the inflammation was higher while on Remicade. Remicade made his disease worse and caused it to spread, and we've been fighting against Remicade by using EEN for the last year and a half. Fortunately he's finally off Remicade and moving in a positive direction after Remicade withdrawal effects.

Also, if Remicade (anti tnf) wasn't a correct treatment for him then I am a little confused as to why they chose another tnf based drug. Granted it is a different mechanism but Entyvio still addresses tnf.

You must be thinking of Humira. Entyvio blocks the movement of white blood cells into the gut rather than blocking tnf.

I hate that any kid has to suffer at all and truly hope you are able to get him back to a good place. It's a shame that the EEN wasn't able to hold him. I was truly hoping that he would be the exception to the rule.

Thanks. I wouldn't say EEN wasn't able to hold him--I'd say that healing from this is a long process and overall we're seeing slow improvement that we just want to speed up.

 

[Pangolin]

We recently had a scope that showed a clear colon (had been very bad in the past), clear TI, but found new duodenal activity.
So just wondering if your doc is adressing the duodenum in a specific way or what the comments were there?
We were told that EEN or partial ( in our case 3 shakes per day) adresses this section very well.

Are you keeping EEN as well as Entyvio? What amount of EEN?

Nothing specific we're doing for the duodenum. EEN continues for now at pretty much 100%. I do hope we can reduce that if entyvio and/or vancomycin works well.

 

[crohnsinct]

Entyvio is a TNF drug. It is an anti adherence molecule but targets tnf as the driving force behind inflammation. It does not suppress tnf production like Remicade and Humira but still targets tnf. Unlike Stelara and others that target the interleukins.

I didn't say it Entyvio doesn't work in the small bowel. It can. It just isn't known to be the go to for small bowel and has a reputation of being not as effective as other agents. Lots of social media posts coming out of NASPGHAN19 on this very topic. Perhaps if you don't have severe disease or haven't failed other biologics it could work.

Good Luck.

 

[crohnsinct]

Just want to caution here...I wouldn't necessarily say Remicade "caused" his disease to get worse and caused it to spread. It may not have been the right agent to stop his disease and therefore disease got worse or spread but it didn't "cause it". If it wasn't the right agent, then he would be labeled a primary non responder so he would fall into that category of people who find it harder to get another biologic to work. Hopefully he falls in the success camp! I am surprised that as a primary non responder they are still targeting tnf. But as I always say, they have the fancy degrees, years of experience and hundreds of patients so they must know something!

For some reason, I seem to remember during summer he was doing really well. Probably remembering it wrong as I am old and we were in the hospital...maybe getting you confused with someone else who.

 

[Pangolin]

No, Entyvio doesn't really have any direct effect on TNF. TNF will go down as inflammation goes down, but Entyvio blocks the migration of T-cells into the gut.

 

[Pangolin]

Just want to caution here...I wouldn't necessarily say Remicade "caused" his disease to get worse and caused it to spread. It may not have been the right agent to stop his disease and therefore disease got worse or spread but it didn't "cause it". If it wasn't the right agent, then he would be labeled a primary non responder so he would fall into that category of people who find it harder to get another biologic to work. Hopefully he falls in the success camp! I am surprised that as a primary non responder they are still targeting tnf. But as I always say, they have the fancy degrees, years of experience and hundreds of patients so they must know something!

For some reason, I seem to remember during summer he was doing really well. Probably remembering it wrong as I am old and we were in the hospital...maybe getting you confused with someone else who.

The doctor believed that there was an initial response to Remicade, but that belief failed to take into account concurrent treatments--which is why we've had to fight against the Remicade for so long with EEN and only recently finally got him off it. The bottom line currently is that he's doing better now off the Remicade than he was on the Remicade, but improvement is slow.

 

[my little penguin]

Let me understand you fought against what your child’s Gi recommendations to keep your child on remicade and een opting for een only early this year (May right ?)
Your child inflammatory markers are still high despite 100% EEN 5 months later (een only takes 6-8 weeks by itself to be as effective as steriods btw)
The recent scope in October showed inflammation and couldn’t get a good look into the terminal ileum due to inflammation plus additional inflammation in the upper scope present
entivyio is very slow acting (8-12 months ) are you adding steriods since your child is so inflamed since complications will be much higher until the entivyio is effective - een is as effective as it will get

Control is possible
Goals should be complete healing of the upper And lower intestine
No ulcers
No inflammation on biopsy found
No fistula or abcess
Just pretty pink intestine with normal bloodwork and normal fecal cal
Which is achievable
Even without Een
Ds has had pristine pink scopes -easy ti access
For years while on biologics and normal blood -fecal cal less than 15 (not detectable )

FWIW we have been told entyvio is only used in pediatric UC patients since it doesn’t have the best track record in pediatric crohns patients
Stelara is what they use for pediatric crohns

I forgot -has your child been seen at a veo ibd clinic
Little kids with crohns are more difficult to figure out and harder to treat

 

[crohnsinct]

Entyvio is not an anti tnf drug in the sense that it does not block tnf production. However, it does work on the cells. It is an anti integrin. The way it was explained to us by three pediatric GI's is that it neutralizes the "sticky stuff" on these cells and makes it so it can't stick and infiltrate the mucosal lining. So it does still work within the tnf realm. Which if you responded to anti tnf drugs in the past it might make sense that tnf is the driving force in your disease. However, if you never responded to an anti tnf or lost response to an anti tnf then maybe another mechanism is driving inflammation.

It takes a LONG time to kick in because it neutralizes the "sticky stuff" on the cells as they are produced so you have to wait for all the old cells to turn over to new. So it takes a long time (O is at 28 weeks now and it has only worked 80% on her colon/rectum and it hasn't touched her ileum, as a matter of fact her ileum is worse).

In the end, I think choices are guided by physician experience. You have to pick something. If you and your GI are confident and comfortable with your choice go for it. Stelara would also take a long time to kick in and doesn't have the success rate in the colon that Entyvio has. It looks like you may be finding yourself in the same boat we are in (except Humira treats both disease locations and has a much higher success rate), you have to pick the worse disease location and treat that and just hope it treats the others or treat them with something else. In O's case we are treating the small bowel with Entocort and if that fails EEN. My concern for your son is that the EEN isn't holding his small bowel.

 

[Maya142]

I'm writing this to provide a different perspective - one from the mother of a child who has a severe chronic illness. She has unusually aggressive juvenile spoindyloarthritis, which has now progressed to Ankylosing Spondylitis. She has had 8 surgeries in the last 6 years (including bilateral joint replacements this summer, at 22), she takes 18 or so medications, has been hospitalized about 11 times now and has failed 9 biologics.

So she is truly out of options. She has literally tried almost everything approved for both Ankylosing Spondylitis and Psoriatic Arthritis - about 12 NSAIDs, 9 biologics, often with one or more immunomodulator (and she's tried 6 of those). She has also tried gluten free diet. She tried EEN and found it very hard, but did 85% EN for over a year. Then did 60% EN for several years. She's tried homeopathy, acupuncture and massage and we even saw a functional medicine doctor.

Being out of options is a terrible, scary place to be. We went NIH this year and they were shocked at how treatment resistant/refractory her disease was. It didn't start out that way - yes, it was bad, but it wasn't terrible. But she was under-treated and it went from bad to unusually aggressive and severe - in about 8 months. She's currently on two biologics and two immunomodulators and still has an elevated CRP and swollen joints. The inflammation has led to a lot of joint damage - both hips, both sacroiliac joints, one elbow, one shoulder, one knee, both jaw joints and so on. Permanent damage from inflammation often causes permanent pain.

I'm telling you her story because your son seems to have fairly severe disease, which has been hard to control. And he has fewer options that she does - there are pretty much just 4 biologics for Crohn's. Remicade, Humira, Stelara and Entyvio. And by taking him off Remicade, you're essentially using up one of your best options. It's possible he may be able to go back to it, should Entyvio fail, but going back on it comes with a risk of allergic reactions. I would say, in the 7 years I've been on this forum, very few kids have been able to go back to it. Most that tried had an allergic reaction. My daughter was able to go back to it - but it did not work as well the second and third time (we ran out of options, so she re-tried it twice).

Based on what you have said, it seems like he had extremely mild side effects to Remicade - sniffles, liver enzymes that went up but normalized. But you also said it wasn't working and you had to increase the dose - what symptoms did he have that led you to do that? Did they test his Fecal Calprotectin? Because of kids develop functional GI disorders in addition to IBD, so you do need to check and make sure it's inflammation causing symptoms, BEFORE stopping the drug or upping the dose.

Yes, overall the inflammation was higher while on Remicade. Remicade made his disease worse and caused it to spread, and we've been fighting against Remicade by using EEN for the last year and a half. Fortunately he's finally off Remicade and moving in a positive direction after Remicade withdrawal effects.

When disease spreads, it's more likely the drug wasn't working, not that it is actually causing additional inflammation. It can have "paradoxical effects" - for example, Remicade induced psoriasis. But the current thinking is that the individual was predisposed to that condition anyway, and adding the drug doesn't cause it per se. If it's truly induced by the drug, it goes away when the drug is stopped. If it isn't the inflammation persists when the drug is stopped. Using crohnsinct's daughter as an example - her psoriasis was originally thought to be Remicade induced, but stopping Remicade did not make her psoriasis go away.

Based upon reading your story, my initial impression was that the combination of EEN AND Remicade contributed to the improvement of the disease. Since he's been off Remicade for several months, the inflammation came back in his terminal ileum and duodenum. So the spread of disease could be attributed to stopping Remicade - you really have no way to know, since he was not scoped before you stopped Remicade. If he'd been scoped on Remicade and you found massive inflammation in his small bowel, I still wouldn't say it was CAUSED by Remicade - rather, his body probably upregulated a different inflammatory pathway and it was time to change mechanisms.

I'm bringing all this up because your kiddo has very few options and you don't want to eliminate options without a good reason. I am surprised his GI is trying Entyvio - everything I have read has shown that it works better in the colon and not well in the small bowel. Both my daughter's GIs (pediatric GI was at CHOP - one of the top pediatric IBD centers) have said the same - that it was unlikely to work well enough in the small bowel and with small bowel disease Stelara was a better option.

I don't mean to criticize at all - I simply wanted you to provide the perspective of a parent whose child has run out of options. It is a horrible scary place to be - knowing that your best options are at least 2-3 years away. And also to provide the perspective of a parent whose child's disease got so much worse when she was not treated aggressively enough. Your child already has permanent damage to his bowel - if his stricture gets worse, you could be dealing with hospital stays, obstructions, perforation or sepsis. Given his case, I would try to maximize the life of each biologic.

 

[Pangolin]

You're missing the point. We have multiple pieces of data confirming that his inflammation is currently lower now than on Remicade. Personally, I'm very happy about the colonic healing. If Remicade had been helping, we'd be seeing higher inflammation now rather than lower inflammation.

Most significant piece of numerical data: ESR (sed rate) has been used for two years as our most convenient monitoring target. ESR was measured in the 20s and 30s throughout 2018 except for one measurement at 18 a year ago. ESR rose despite increasing Remicade dose, measured at 38 most recently while on Remicade. While off Remicade, ESR did initially rise (which I believe was due to immune reactivation and the fighting off of infections after high level immune suppression) but has now plummeted to 18.

 

[Maya142]

Were his ESR/CRP and Fecal Calprotectin all higher on Remicade? You didn't do a scope on Remicade, so it's hard to know without some objective evidence. But it is possible that he is what they called a "primary non-responder" - did not respond to anti-TNFs at all. If that's the case, then a switch makes sense.

Remicade was resulting in a lot of eye irritation, at least one small petechia under his eye, some chest/esophageal pain when swallowing, lots of sniffles, possibly some subtle yellowness of skin tone, some transient mildly elevated liver numbers, and general immune system weirdness.

But nothing on that list points to more inflammation on Remicade, just very mild side effects that could have many causes.

 

[Pangolin]

See edit above. I believe he was a partial responder initially (although it's hard to say whether there was in fact any response at all) but most of what was believed to be a response was actually due to concurrent EEN and antibiotics. As soon as those stopped he got substantially worse until we started EEN again.

The problem is the doctor attributed the initial improvement to Remicade even though it was really the EEN, which we proved later on and now we've proven again off Remicade.

Note also that Remicade dose increases in fact corresponded to worse inflammation numbers.

What's really going on here is that the doctor was far too reluctant to move on from Remicade even though it wasn't working--which would have become very clear to the doctor if we had stopped EEN, but we certainly didn't want to harm our son in order to cause a move away from Remicade. We were stuck between a rock and a hard spot but kept things stable with EEN.

 

[Maya142]

But you have no objective evidence of inflammation that got worse on Remicade - just that Remicade wasn't working well enough for his inflammation without EEN and antibiotics. That is certainly possible - severe cases often need a combination of therapies to control inflammation. The normal course of action would be to check inflammatory markers and Fecal Calprotectin to see if his symptoms were truly inflammatory. Was that ever done? Was his CRP or ESR higher on Remicade?

 

[Pangolin]

No, we have ESR substantially higher on remicade and higher at higher doses.

(Symptoms are actually pretty minimal right now, but in general he's been low on the usual Crohn's symptoms. No abdominal pain in the last few days, poops are just a bit soft)

 

[Maya142]

And CRP and FCP? Did those go up? The one reason I hesitate with ESR is because we have been told by multiple GIs it's least specific (since it can be elevated for quite a long time after a cold for example) and FCP is most specific.

If his inflammation levels truly went up due to the Remicade, then I would be concerned about Entyvio - perhaps worth asking your GI about or even getting a second opinion before starting. If it indirectly blocks TNF and blocking TNF makes things worse for your son, then perhaps Stelara is a better choice.

Additionally, if his GI has records that can back up inflammation levels going up Remicade (such as high ESR, CRP and FCP, since you don't have scopes showing worsening disease), that should be reported to the drug company.

My daughter got drug induced Lupus from Entyvio which is very, very rare (so don't want you to worry about that!!) but her GI reported it (both to the drug company and I believe the FDA too), since she had never seen it before with Entyvio.

 

[my little penguin]

So no I am really confused
Great you have ESR numbers but ....
If his numbers were high for so long why no scope or imaging
Reason being ESR is not gut specific and unless you have scopes to correlate the %danage /inflammation that corresponds to certain number is much harder to figure out what is what

Kids can have severe external symptoms and no actual inflammation instead
They can have perfect scopes but very high esr
They can have slightly above (20-30 when max normal is 20 ) and be very inflamed

Esr and other bloodwork is used to understand when to take a bigger look with scopes and imaging until you understand your child’s bloodwork patter /fecal cal

 

[Optimistic]

Hi Pangolin. I haven't been on the forum in a bit so pardon me for jumping in late and possibly making you repeat yourself! I see there is a lot to catch up on!

When were scopes? MRE? FCP? Did he have of those any while on Remicade?

Our GI LOVES to try EEN but even he says that after 6-8 weeks if you don't have dramatic improvement it has failed and you need to move on. You said that when he went from 80-100% there were some bad results. What happened?

 

[Pangolin]

Regarding EEN--here's how it went:

EEN upon diagnosis (originally not intended as a treatment, but effectively at about 85% of calories) -> led to very fast symptom improvement at the same time as antibiotics

End EEN after about 8 weeks -> quick increase in symptoms

3 months later, back to EEN, this time more intentionally, at about 85% of calories -> dramatic reduction in symptoms and other signs of inflammation in days to weeks.

Stayed on 85% EEN for 8 months or so: mostly not much change after initial dramatic improvement. Low symptoms but some signs of continuing inflammation in the labs.

Reduction in EEN (to about 65%) concurrent with Remicade dose increase -> dramatic increase in symptoms and some increase in labs

After some weeks at 65%, back to 100% EEN -> dramatic improvement in symptoms and decrease in labs

So, yeah, we know EEN was very effective and really the only thing holding inflammation in check.

Edit: I should add that the kid is very picky and simply won't eat things that we would like him to eat, eg bananas, soup, etc. (he prefers Pediasure over ordinary healthy foods), so when he's not having the formula he ends up having things like pizza and fried foods.

 

[Jo-mom]

Hi Pangolin - what dose of Remicade was your son on and how often? My son needed to have frequency decreased and dose increased. Before doing this, his symptoms were worse than before starting medication, but once we got the dosing right, the improvement was slow and steady and the new dose made all the difference. It took awhile to get it right.

I appreciate all these posts - learning from others experiences.

It seems that kids with crohn's become picky eaters. My son is older but as a teen, was a picky eater. Only now, as he is enjoying eating, he is actually wanting to try foods that he would think disgusting before, ie avocados. It's really interesting and fantastic to see how improvement in digestion lessens pickiness.

I hope the best for your son.

 

[Pangolin]

10mg/kg/8 weeks, then 10mg/kg/6 weeks, then 12.5mg/kg/6 weeks. He was a picky & difficult eater from birth.

 

[Maya142]

So no I am really confused
Great you have ESR numbers but ....
If his numbers were high for so long why no scope or imaging
Reason being ESR is not gut specific and unless you have scopes to correlate the %danage /inflammation that corresponds to certain number is much harder to figure out what is what

Kids can have severe external symptoms and no actual inflammation instead
They can have perfect scopes but very high esr
They can have slightly above (20-30 when max normal is 20 ) and be very inflamed

I agree - honestly I'm thoroughly confused about why other tests were not done to check whether Remicade was working.

3 months later, back to EEN, this time more intentionally, at about 85% of calories -> dramatic reduction in symptoms and other signs of inflammation in days to weeks.

Stayed on 85% EEN for 8 months or so: mostly not much change after initial dramatic improvement. Low symptoms but some signs of continuing inflammation in the labs.

Reduction in EEN (to about 65%) concurrent with Remicade dose increase -> dramatic increase in symptoms and some increase in labs

After some weeks at 65%, back to 100% EEN -> dramatic improvement in symptoms and decrease in labs

EEN was clearly helping but I guess what we're all trying to figure out is that when his symptoms increased and ESR went up, why wasn't Fecal Calprotectin/CRP checked and why weren't scopes done or some sort of imaging done? It still seems to me that you haven't established that his symptoms were inflammatory. They possibly were, in fact, they probably were but we can't know for sure, since the normal testing was not done. Many kids with IBD will have issues eating things like fried foods or pizza. My daughter definitely does, even when her Crohn's is in remission, and she has mild to moderate disease.

Based on your timeline, it seems you changed two things at once. You upped his Remicade and dropped EN to 65% from 85%. His symptoms increased and his ESR increased. You are attributing that increase in his ESR to the Remicade dose increase. But it could just as easily be from dropping the amount of formula he had been consuming.

In fact, my guess is that it's MUCH more likely that it was the reduction in EEN that caused the rise of his ESR. 85% EN has been shown to be almost equal to 100% EEN - true EEN. Studies have shown that for many kids, 80% or more is enough to give the same effect at Exclusive EN (100%). But 65% is definitely what would be called supplemental EN. Doesn't work as well as 100%.

So far, to me it seems that probably 65% EN + 12.5 mg/kg of Remicade every 6 weeks weren't enough to keep symptoms and inflammation at bay. We can't know for sure, because Fecal Cal wasn't done and neither was imaging, scopes etc. But you had room to go up - you can go up to 20 mg/kg every 4 weeks. But the typical thing to do at that point would be to look at his Remicade levels, whether he had antibodies and also look at his FCP or scopes to see how much Remicade was truly helping.

But I don't think there's enough evidence to conclusively say Remicade increased inflammation, at least based on what you've told us.

EEN is clearly effective for him - he does seem to need it. But my worry is one that other parents have brought up. He has severe disease and it's clear 100% EEN isn't enough to keep small bowel inflammation controlled. And since Entyvio is going to take months to work at the very least, you're probably going to need a bridge therapy - and since he's already doing EEN, your choices really are steroids or a stronger immunosuppressant like Tacrolimus.

 

[Pangolin]

It still seems to me that you haven't established that his symptoms were inflammatory.

I assure you that these were inflammatory changes. We could literally see the inflammation.

They possibly were, in fact, they probably were but we can't know for sure, since the normal testing was not done.

There was other testing done, for example MREs. These each showed similar thickening at the terminal ileum a year apart. We haven't been able to draw a lot of conclusions based on that.

Based on your timeline, it seems you changed two things at once. You upped his Remicade and dropped EN to 65% from 85%. His symptoms increased and his ESR increased. You are attributing that increase in his ESR to the Remicade dose increase. But it could just as easily be from dropping the amount of formula he had been consuming.

At that specific time I do agree that the increased ESR was due to the dietary change (clearly we can also say the increased dose was insufficient to counteract that), but the longer-term picture shows a positice correlation with Remicade dose independent of EEN percent. I've done the regressions.

But you had room to go up - you can go up to 20 mg/kg every 4 weeks.

You have to understand that we'd already done two dose increases with no positive effect and a clear increase in side effects. Overall health status (and ESR) seems better now off Remicade. I'm not sure why you guys hate this so much.

But the typical thing to do at that point would be to look at his Remicade levels, whether he had antibodies and also look at his FCP or scopes to see how much Remicade was truly helping.

The difficulty is isolating the effect of Remicade. You need comparisons before and after a dose change/starting/stopping without significant confounding factors.

But I don't think there's enough evidence to conclusively say Remicade increased inflammation, at least based on what you've told us.

I can't conclusively say that, but the overall before and after picture as well as the information we have from the dose changes is not looking very positive for the Remicade. The only truly conclusive data I have is on the effectiveness of EEN in his case. If it hadn't been for the EEN, he would have "failed" Remicade long ago. Most people would have dropped EEN as the guidelines suggest and promptly lost their colons. I'm not sure why we would do that to him as parents who are trying to help him. Thus, the year and a half stasis. Fortunately now we can try some other options.

 

[Optimistic]

I have no experience with Remicade. Sounds like you've had a long road and hopefully next plan will work quickly.

My son used EEN for a number of months and then stayed on partial EEN even when scope confirmed remission. I believe he will be on it forever as one of his treatments. It is hard but then again he was one of the "picky" eaters that I now realize is common to Crohn's and should have been an early warning sign years ago.

How has his FCP trended?

 

[crohnsinct]

Pangolin - I know too well this is an emotional time. I just wanted to say that there is a very, very, very small chance that Remicade failing and dropping EEN would have resulted in him losing his colon. Colectomy in kids is really very rare. Look at O. Even septic with a colon that was chop meat they treated with IV antibiotics and steroids and were able to save her colon. Add to this that with Crohn's in general they are much slower to colectomy than with UC.

 

[Pangolin]

re FCP: hasn't been tested regularly. We'll find out more about that in a few weeks