Infliximab trout concentration very high, no antibodies but has diarrhea

[Magnet]

My daughter was recently diagnosed with IBD after a sudden onset of severe diarrhea which turned very quickly to very bloody ones. Because she had no prior history of diarrhea, initially her GI were very skeptical of IBD. But all infection tests came up negative, and the imaging testing showed the inflammation of her entire bowel with some areas being severely inflamed. The colonoscopy confirmed IBD. The upper scope showed inactive chronic gastritis so they did not rule out Crohn's but there were no cells found that are specific for Crohn's. So, there is just IBD in her diagnosis.

She spend a month and a half in the hospital because it took a long time to diagnose her, give her treatments and there were some complications along the way. Her calprotectin during bloody diarrheas was 1200-800.

For IBD, she got treated with Infliximab infusions (the initial one and then 2 weeks after). But after the 1st infusion, they also gave her a brief course of steroids to get down her inflammation. After that her 2nd infusion her calprotectin came down >2000, and everyone hoped that it would go lower and not up. I was concerned that Infliximab was not working. But her diarrhea got away and the doctors were dismissive of my concerns that it could be that she doesn't benefit from Infliximab but got better from Steroids that they stopped by then.

Well, she just went for her 1st monthly maintenance with Infliximab (the 3rd infusion if you count from the beginning), and Infliximab activity before that 3rd infusion resulted as 38 and no antibodies were found. 38 is a very high number for trout. But I would take it if she would be asymptomatic. But two days before that 3rd infusion she started to have diarrheas daily. Yesterday we reached 7, today 5 so far. There are some bloody inclusions in some of stool. I'm contacting GI again with my concern that Infliximab was probably never a match for her. But once again, they want to rule out infections, or they blame a medication that she is getting for a month for a delayed gastro emptying but that medication gave her no problem. BTW, can IBD flare slow down gastro emptying? Would it be temporary?

Anyone's thoughts on any of that?

 

[my little penguin]

It’s way tooo early to tell if remicade is working since she only had three infusions
Some take months to see remission on remicade and need a second med as a bridge until remicade kicks in fully
That can be steriods /formula only (exclusive enteral nutrition-een)/methotrexate
Or all of the above

the three infusions are the induction phase of the meds
Meaning one at week zero
One two weeks after that
And a third four weeks later
Maintenance dose /frequency can vary
From 5 mg/kg every 8 weeks to
10 mg/kg every 4 weeks

Gi land does not stop overnight
It takes a very long time to fix the gut

remicade can take months -average is 6 weeks
Humira takes12 weeks
Methotrexate by itself 12 weeks
6-mp/imuran -12 weeks
Stelara-my kiddo took 8 months with methotrexate

talk to the Gi
Ask for a bridge therapy
But realize any med will take months to work
And you may need more than one if things are bad

 

[Magnet]

It’s way tooo early to tell if remicade is working since she only had three infusions
Some take months to see remission on remicade and need a second med as a bridge until remicade kicks in fully
That can be steriods /formula only (exclusive enteral nutrition-een)/methotrexate
Or all of the above

the three infusions are the induction phase of the meds
Meaning one at week zero
One two weeks after that
And a third four weeks later
Maintenance dose /frequency can vary
From 5 mg/kg every 8 weeks to
10 mg/kg every 4 weeks

Gi land does not stop overnight
It takes a very long time to fix the gut

remicade can take months -average is 6 weeks
Humira takes12 weeks
Methotrexate by itself 12 weeks
6-mp/imuran -12 weeks
Stelara-my kiddo took 8 months with methotrexate

talk to the Gi
Ask for a bridge therapy
But realize any med will take months to work
And you may need more than one if things are bad

Well, my daughter also has developmental delays and is likely to be on the spectrum. She has AFRID (avoidance food intake restrictive disorder) which is severe. So, her baseline diet has been Pediasure and water ORALLY. And that's it. At the hospital she was getting TPN, and developed complete oral aversion (not allowing even to brush her teeth). She failed 3 ng-tube placements due to vomiting (which was due to messed up stomach emptying). She got a g-tube placed but once she got discharged and got home, she is eating her Pediasure and drinks orally, and she lets to brush her teeth. And I can even mix up some meds with her bottle.

So basically her diet is liquid even though it's not EEN. If we chose to have EEN and keep that tube (which has given us a lot of issues and it's hard to maintain with her sensory issues and limited compliance), she might regress to complete oral aversion again. I don't want to be dependent on her tube. I don't want her to develop life-long dependency to her tube if she has a complete oral aversion.

With regard to steroids, they gave her only one week of it after the 1st infusion. And then only Infliximab for IBD.

 

[Maya142]

Is she on the standard dose of Infliximab (5 mg/kg) or higher? I wonder if they put her on a high dose to get things under control quickly.

Regardless, I think you probably need to wait before considering Infliximab a failure. It is possible that the steroids had brought down her Fecal Calprotectin - do you know what her Fecal Calprotectin was before and after the steroids? Also, Fecal Calprotectin can vary quite a lot from day to day, though generally you would hope to see a downward trend. But Infliximab can take 3 months to work.

My daughter has been on Infliximab several times (she has very hard to control inflammatory arthritis in addition to Crohn's, so has run out of drug options and is re-trying Infliximab) and this last time, the first two infusions did nothing. The dose was simply too low for my daughter (5 mg/kg). It took 2 more infusions at 7.5 mg/kg before either her Crohn's or her arthritis responded. We did her maintenance infusions every 4 weeks. Even then, Infliximab would wear off about 10 days before it was due, so we then upped it to 10 mg/kg every 4 weeks and that has worked pretty well for arthritis and very well for her Crohn's.

My daughter also has Gastroparesis or delayed gastric emptying. It is a delicate balance when she is flaring (she recently flared because insurance denied her Infliximab arbitrarily in December, and it took many appeals to get it re-approved) and has severe diarrhea - we have to reduce her motility medications significantly. It's difficult because you can still have delayed gastric emptying and food leaving the stomach too slowly but still have diarrhea because of inflammation in the colon. But generally motility medications increase motility everywhere so sometimes you do need to reduce them if your child is having a lot of diarrhea. It's been trial and error for us.

As for EEN, it can be done orally! If she only drinks Pediasure, she is on EEN already. EEN means formula only - it can be done by mouth or by tube. I fully agree that you want her to drink as much as possible and not to be dependent on the tube. For most kids, any formula works - polymeric (made of whole proteins) like Pediasure or Ensure. But others need more broken down formulas because their guts are so inflamed that they're not absorbing nutrients properly. Semi-elemental formulas are more broken down than polymeric and elemental formulas are the most broken down, into amino acids. The issue is that they taste much worse than polymeric formulas, so not all kids are able to drink them. My daughter had diarrhea with Ensure, so we then tried semi elemental formulas (Peptamen Jr and Pediasure Peptide) and while she tolerated those better, she still had diarrhea.
So we went to elemental (Neocate) and her diarrhea stopped.

The issue is that if she refuses to drink those kinds of formulas, then you'll have to use her tube and that could increase the oral aversion. But younger kids tend to do better with drinking even semi-elemental or elemental formula, so it's worth a try.

Alternatively, you could ask about a longer course of steroids. And you certainly could ask what the GI thinks about the bloody diarrhea that is increasing right after the infusion. While the motility medication could speed up her gut and cause diarrhea, it would not cause bleeding. So I would voice your concerns about Remicade and ask about what to do in the interim while you're waiting for Remicade to work.

Normally I would say that you can increase the dose of Remicade or the frequency of infusions, but with such a high trough level, I don't know if that would help. I think probably she needs steroids. When my daughter flared in December, she was having roughly 15-20 BMs a day. Once she finally got Remicade, she got better but she still had a lot of diarrhea. So now she is on steroids for 4 weeks to control that flare, and within a few days of steroids, she was down to having 3 BMs a day. The idea is that the steroids will induce remission and Remicade will maintain it.

 

[Maya142]

I'm going to tag some other parents - @crohnsinct, @Pilgrim, @pdx

I will say that not all kids respond to Remicade and sometimes you need a different kind of drug that works by a different mechanism, such as Entyvio or Stelara. But I think adding steroids would be the next step before you do that.

Feel feel to message me if you have other questions. Also, inflammation in the stomach can cause delayed gastric emptying and it's possible when that inflammation is gone, her gastric emptying will be closer to normal. Or it may be that the gastric emptying is unrelated to the Crohn's - my daughter still has delayed gastric emptying even when she is in remission so her Gastroparesis is considered unrelated to the Crohn's.

 

[Magnet]

Is she on the standard dose of Infliximab (5 mg/kg) or higher? I wonder if they put her on a high dose to get things under control quickly.

Regardless, I think you probably need to wait before considering Infliximab a failure. It is possible that the steroids had brought down her Fecal Calprotectin - do you know what her Fecal Calprotectin was before and after the steroids? Also, Fecal Calprotectin can vary quite a lot from day to day, though generally you would hope to see a downward trend. But Infliximab can take 3 months to work.

My daughter has been on Infliximab several times (she has very hard to control inflammatory arthritis in addition to Crohn's, so has run out of drug options and is re-trying Infliximab) and this last time, the first two infusions did nothing. The dose was simply too low for my daughter (5 mg/kg). It took 2 more infusions at 7.5 mg/kg before either her Crohn's or her arthritis responded. We did her maintenance infusions every 4 weeks. Even then, Infliximab would wear off about 10 days before it was due, so we then upped it to 10 mg/kg every 4 weeks and that has worked pretty well for arthritis and very well for her Crohn's.

My daughter also has Gastroparesis or delayed gastric emptying. It is a delicate balance when she is flaring (she recently flared because insurance denied her Infliximab arbitrarily in December, and it took many appeals to get it re-approved) and has severe diarrhea - we have to reduce her motility medications significantly. It's difficult because you can still have delayed gastric emptying and food leaving the stomach too slowly but still have diarrhea because of inflammation in the colon. But generally motility medications increase motility everywhere so sometimes you do need to reduce them if your child is having a lot of diarrhea. It's been trial and error for us.

As for EEN, it can be done orally! If she only drinks Pediasure, she is on EEN already. EEN means formula only - it can be done by mouth or by tube. I fully agree that you want her to drink as much as possible and not to be dependent on the tube. For most kids, any formula works - polymeric (made of whole proteins) like Pediasure or Ensure. But others need more broken down formulas because their guts are so inflamed that they're not absorbing nutrients properly. Semi-elemental formulas are more broken down than polymeric and elemental formulas are the most broken down, into amino acids. The issue is that they taste much worse than polymeric formulas, so not all kids are able to drink them. My daughter had diarrhea with Ensure, so we then tried semi elemental formulas (Peptamen Jr and Pediasure Peptide) and while she tolerated those better, she still had diarrhea.
So we went to elemental (Neocate) and her diarrhea stopped.

The issue is that if she refuses to drink those kinds of formulas, then you'll have to use her tube and that could increase the oral aversion. But younger kids tend to do better with drinking even semi-elemental or elemental formula, so it's worth a try.

Alternatively, you could ask about a longer course of steroids. And you certainly could ask what the GI thinks about the bloody diarrhea that is increasing right after the infusion. While the motility medication could speed up her gut and cause diarrhea, it would not cause bleeding. So I would voice your concerns about Remicade and ask about what to do in the interim while you're waiting for Remicade to work.

Normally I would say that you can increase the dose of Remicade or the frequency of infusions, but with such a high trough level, I don't know if that would help. I think probably she needs steroids. When my daughter flared in December, she was having roughly 15-20 BMs a day. Once she finally got Remicade, she got better but she still had a lot of diarrhea. So now she is on steroids for 4 weeks to control that flare, and within a few days of steroids, she was down to having 3 BMs a day. The idea is that the steroids will induce remission and Remicade will maintain it.

Calprotectin before 1st dose of Infliximab and steroids was 800-1200. After one week of steroids and two starting doses of Infliximab calprotectin jumped almost 2-ce as much to like 2300. But she had no diarrhea at 2300 whereas she had 15-20 BM that consisted of mostly pure blood with calprotectin being lower at 800-1200.

We tried Neocate when she was an infant. She was vomiting it. The reason why tried different formulas when she was young is that she was a failure to thrive. Her problem was not drinking enough of formulas. When she turned 5, she started to eat better, and was not a failure to thrive anymore. The doctors were satisfied with her weight. Of course, with that recent hospitalization for IBD, she lost a lot of weight. She did gain some of it back already. But now that her pooping came up back, there is a danger she she would develop oral aversion or that she would get a chemical imbalance, get anemic, etc. She did have some iron infusion in the hospital because her hemoglobin was around 8. She has been exclusively on Pediasure from age 2. Only because she was tolerating it better than anything else we tried and because she did not want to switch to solid foods due to ARFID.

But she would be OK to accept Pediasure Peptide. She tried it and tolerated it well in the past. With the present formula shortage, the doctors are skeptical to prescribe a different formula because 1) new pre-authorization is required from insurance, 2) a new formula might be in a shorter supply whereas I accumulate some stockpile of Pediasure.

I don't know what dosage of Infliximab they gave her for induction. If drug concentration was at 38 before the 3rd induction dose, then it means that the original dosage was more than adequate to be effective. When you get concentration such as her, there is no point of increasing the dosage. I did ask to recheck her calprotectin now that she flared up again but they don't want to do it. They say that she might be just having an infection (btw, they didn't order the infection tests to rule out those) and therefore her high calprotectin number would not be of any use to them.

 

[Magnet]

I'm going to tag some other parents - @crohnsinct, @Pilgrim, @pdx

I will say that not all kids respond to Remicade and sometimes you need a different kind of drug that works by a different mechanism, such as Entyvio or Stelara. But I think adding steroids would be the next step before you do that.

Feel feel to message me if you have other questions. Also, inflammation in the stomach can cause delayed gastric emptying and it's possible when that inflammation is gone, her gastric emptying will be closer to normal. Or it may be that the gastric emptying is unrelated to the Crohn's - my daughter still has delayed gastric emptying even when she is in remission so her Gastroparesis is considered unrelated to the Crohn's.

My daughter's gastro emptying at 6 months of age when it was first checked was borderline normal. Which means that it was on a slow side but bottom of normal. The upper endoscopy showed a chronic but inactive gastritis with a chemic sensitivity. When I probed doctors to explain more about chemical sensitivity they told me that her stomach would have low tolerance to NSAID's like ibuprofen and it's not like I was getting it more than a few times in her lifetime. And btw, her intake of Tylenol has to be limited as well because several years ago she had a prolonged period when her liver enzymes were up (at one point up to 500) and her liver biopsy was showing mild liver inflammation but nothing specific for a liver disease). So, we cannot say for sure if she has Crohn's or UC. But it was unusual, that her first flare came out of nowhere and quickly became acute for a child who never had a prior history of diarrheas and basically was on EEN for years already. Even though she had extensive medical workouts in the past for her health issues that affected her eating and GI, this was the first time she got a colonoscopy. She did an upper endoscopy at 6 months, and it was OK. It's interesting that her recent inflammation episode got her gastro emptying to slower down to the point that she could not tolerate feeds - she was vomiting them.

 

[Magnet]

It’s way tooo early to tell if remicade is working since she only had three infusions
Some take months to see remission on remicade and need a second med as a bridge until remicade kicks in fully
That can be steriods /formula only (exclusive enteral nutrition-een)/methotrexate
Or all of the above

the three infusions are the induction phase of the meds
Meaning one at week zero
One two weeks after that
And a third four weeks later
Maintenance dose /frequency can vary
From 5 mg/kg every 8 weeks to
10 mg/kg every 4 weeks

Gi land does not stop overnight
It takes a very long time to fix the gut

remicade can take months -average is 6 weeks
Humira takes12 weeks
Methotrexate by itself 12 weeks
6-mp/imuran -12 weeks
Stelara-my kiddo took 8 months with methotrexate

talk to the Gi
Ask for a bridge therapy
But realize any med will take months to work
And you may need more than one if things are bad

OK, I searched through electronic notes in her medical chart, and I found that her induction to Infleximab was at 10 mg/kg.

 

[my little penguin]

Actually gastroparesis makes sense
My kiddo had borderline slow emptying due to inflammation in the duodenum.
Once that inflammation was calmer for a while a year or two
His gastric emptying got better
Not normal but better
Gi stated they see that in crohns a lot

as far as out of the blue first flare
That is also common in kids
Mine had constipation since he was little
Then suddenly diarrhea with small amounts of blood at dx (colonoscopy at 7)

it happens
Hope the remicade calms things soon
Is she still on een ?
Or solids and formula ?
Een acts as steriods for some kids so it can stop inflammation
If that was stopped then she flared she may have had this for a while

 

[Magnet]

Actually gastroparesis makes sense
My kiddo had borderline slow emptying due to inflammation in the duodenum.
Once that inflammation was calmer for a while a year or two
His gastric emptying got better
Not normal but better
Gi stated they see that in crohns a lot

as far as out of the blue first flare
That is also common in kids
Mine had constipation since he was little
Then suddenly diarrhea with small amounts of blood at dx (colonoscopy at 7)

it happens
Hope the remicade calms things soon
Is she still on een ?
Or solids and formula ?
Een acts as steriods for some kids so it can stop inflammation
If that was stopped then she flared she may have had this for a while

Yeap, she still has her EEN Pediasure 1.5 with fiber. She has not been accepting any solids or purees ever. And yes, she has a long history of constipation. When I pumped up my breastmilk, she once set up a record of 14 days without a BM. At that time GI was saying that it does happen sometimes, and they were not alarmed. So, her extremely self-restrictive diet might have kept her IBD under radar for years. I wish her EEN diet to expand though. She always gets admitted if she catches a stomach virus because she needs some IV fluids before her stomach is able to process Pediasure. When they Rx-ed her with IBD I asked if fiber in pediasure is bad for her, and the doctors said that it doesn't make a whole lot of difference. What is supposed to make a difference is to find a medication that works for her and some luck.

 

[my little penguin]

Correct the type of formula
Polymeric (pediasure )
Semi elemental (peptamen jr)
Elemental (neocate jr or elecare jr)
Does not make a difference for een to work

that said it may be different during different times for the same kid
My kiddo drank kids boost pre dx to help with weight gain
At dx switched to peptamen jr
Then peptamen jr with prebio

later needed neocate jr -could not tolerate the neocate jr with fiber
had to have a low fiber diet
A lot of crohns kids have issue with fiber when flaring

he currently drinks carnation instant breakfast packets with organic milk x2 plus food to keep weight in at 19

There are alot of things that mimic crohns
So always good to check with a clinic that specializes in very early onset ibd
Chop has a clinic so they can rule out other stuff

 

[Magnet]

Correct the type of formula
Polymeric (pediasure )
Semi elemental (peptamen jr)
Elemental (neocate jr or elecare jr)
Does not make a difference for een to work

that said it may be different during different times for the same kid
My kiddo drank kids boost pre dx to help with weight gain
At dx switched to peptamen jr
Then peptamen jr with prebio

later needed neocate jr -could not tolerate the neocate jr with fiber
had to have a low fiber diet
A lot of crohns kids have issue with fiber when flaring

he currently drinks carnation instant breakfast packets with organic milk x2 plus food to keep weight in at 19

There are alot of things that mimic crohns
So always good to check with a clinic that specializes in very early onset ibd
Chop has a clinic so they can rule out other stuff

I've already looked up if we can go for a 2nd opinion somewhere else. And basically with our medicaid based plan in NYS we can be covered only in the city where we reside. And it means one children's hospital only with one pediatric GI group in the entire vicinity. Same would hold true if I change it to a different Medicaid based plan. It's the same for all Medicaid based plans. I'm not sure about straight Medicaid. For what I know about straight Medicaid in NYS it is a pain in a butt for adults who have it. I don't know if it works better for the kids. Our local GI SUCKS. They give me PTSD each time I interact with them. They are always dismissive, hard to reach, slow to make any decision, and ... Let me just say that I wish I had an alternative. She is not my only special need kiddo. I cannot afford to pay out of packet and it's almost impossible to travel at a distant with one kiddo when you're a caregiver for more than one. So, I have to make the best with what I got. Which means that I bump my head against doctors' heads a LOT.

What pissed me the most last time we dealt with GI is that they did not want to treat her intestinal inflammation until they would do the final confirmation with a colonoscopy (MRE, ultrasound and calprotectin were all suggestive of IBD) but they wanted to postpone a colonoscopy because in their wording she had too much inflammation for a safe colonoscopy. They hoped that her inflammation would go away on its own and that she would get colonoscopy as an outpatient in several months but instead her bleeding and pain were getting worse and worse. I was so frustrated! Finally they got the scopes completed. Still, they did not start her on a treatment right away. They waited for pathology results to confirm even what they saw with their own eyes!

 

[my little penguin]

I know chop and Boston children’s complete second opinions online without travel
Just record review
Chop at least has social workers so might be worth a call -they really try to work with everyone to help figure it out

https://www.chop.edu/centers-programs/very-early-onset-inflammatory-bowel-disease-veo-ibd-program

 

[my little penguin]

https://www.mountsinai.org/care/pediatrics/services/gastroenterology/conditions-treatmentsMight be an option

 

[Magnet]

https://www.mountsinai.org/care/pediatrics/services/gastroenterology/conditions-treatmentsMight be an option

Not covered and 8 hours away. Only our children's hospital is covered. In the nearest city with their children's hospital, the coverage is for emergencies only. IBD is not an emergency service like a heart attack or stroke. We do have other hospitals where we live, but they don't have pediatrics GI. Once I brought one of my kiddos with dehydration to an adult ER, and it was awful. He got sedated with morphine. A quick IV bolus and got discharged and then he got sick again same way in 11 days.

 

[Magnet]

Update: My daughter is doing better with steroids. they were Rx-ed today.

 

[Maya142]

So that explains the high trough level - the high dose of Infliximab. I agree that increasing the dose would not help with a trough level that is that high. But adding a bridge like steroids will hopefully induce remission and then Infliximab can maintain it. There have been cases on here before where the child didn't respond to just Infliximab and needed a combination of Infliximab plus steroids or Infliximab plus MTX or Infliximab + EEN + MTX etc. My daughter needed Infliximab + steroids + MTX at diagnosis and it took 4 infusions before we saw a significant difference and her Crohn's was not severe.

A lot of kids restrict their diets even before they're diagnosed with IBD (though not usually to the point where they're only on formula, not eating at all). My daughter was an incredibly picky eater and was also diagnosed with failure to thrive. She put herself on a "low residue diet," that is commonly suggested for Crohn's patients, long before she was diagnosed. She also tended to have constipation before she was diagnosed and her main symptoms were really abdominal pain and weight loss. The diarrhea came later.

What pissed me the most last time we dealt with GI is that they did not want to treat her intestinal inflammation until they would do the final confirmation with a colonoscopy (MRE, ultrasound and calprotectin were all suggestive of IBD) but they wanted to postpone a colonoscopy because in their wording she had too much inflammation for a safe colonoscopy. They hoped that her inflammation would go away on its own and that she would get colonoscopy as an outpatient in several months but instead her bleeding and pain were getting worse and worse. I was so frustrated! Finally they got the scopes completed. Still, they did not start her on a treatment right away. They waited for pathology results to confirm even what they saw with their own eyes!

Some pathologists will not say "Crohn's" unless the biopsies show non-caseating granulomas but only a certain percentage of patients have them. But they should not have delayed treatment or scopes. I wish you could get a second opinion but I understand that it is currently not possible. Do you think a record review, as @my little penguin suggested by CHOP or BCH (which is an online second opinion) would be covered? CHOP in particular has an excellent Very Early Onset (VEO) IBD Clinic and kids with VEO IBD tend to present differently from older kids/teens. And they tend to have inflammation that is hard to control.

As said above, inflammation in the stomach can certainly delay gastric emptying further - even to the point where the kiddo is throwing up G tube feeds. My daughter's Gastroparesis is severe enough that she had a period when she was throwing up NG tube feeds too, and eventually had an NJ tube put in. She now has two separate tubes - a G and a J. Inflammation can slow motility and cause malnutrition, malnutrition can increase nausea, so the child eats less, loses more weight and you get stuck in the vicious cycle. My daughter became severely underweight for a time and needed the NJ tube to gain weight. And she needed an elemental formula - for whatever reason, she had diarrhea with Pediasure, Ensure, Boost, and even Peptamen Jr. but was able to gain weight on Neocate and later Vivonex. Once she gained weight and was no longer malnourished and her IBD was under control, she stopped needing daily tube feeds to maintain her weight. She does need them during a flare or she'll lose weight, but no longer daily and her Gastroparesis is definitely better than it was at her worst.

Glad they have put your daughter on steroids now. Hopefully she will improve quickly!

 

[Magnet]

So that explains the high trough level - the high dose of Infliximab. I agree that increasing the dose would not help with a trough level that is that high. But adding a bridge like steroids will hopefully induce remission and then Infliximab can maintain it. There have been cases on here before where the child didn't respond to just Infliximab and needed a combination of Infliximab plus steroids or Infliximab plus MTX or Infliximab + EEN + MTX etc. My daughter needed Infliximab + steroids + MTX at diagnosis and it took 4 infusions before we saw a significant difference and her Crohn's was not severe.

A lot of kids restrict their diets even before they're diagnosed with IBD (though not usually to the point where they're only on formula, not eating at all). My daughter was an incredibly picky eater and was also diagnosed with failure to thrive. She put herself on a "low residue diet," that is commonly suggested for Crohn's patients, long before she was diagnosed. She also tended to have constipation before she was diagnosed and her main symptoms were really abdominal pain and weight loss. The diarrhea came later.


Some pathologists will not say "Crohn's" unless the biopsies show non-caseating granulomas but only a certain percentage of patients have them. But they should not have delayed treatment or scopes. I wish you could get a second opinion but I understand that it is currently not possible. Do you think a record review, as @my little penguin suggested by CHOP or BCH (which is an online second opinion) would be covered? CHOP in particular has an excellent Very Early Onset (VEO) IBD Clinic and kids with VEO IBD tend to present differently from older kids/teens. And they tend to have inflammation that is hard to control.

As said above, inflammation in the stomach can certainly delay gastric emptying further - even to the point where the kiddo is throwing up G tube feeds. My daughter's Gastroparesis is severe enough that she had a period when she was throwing up NG tube feeds too, and eventually had an NJ tube put in. She now has two separate tubes - a G and a J. Inflammation can slow motility and cause malnutrition, malnutrition can increase nausea, so the child eats less, loses more weight and you get stuck in the vicious cycle. My daughter became severely underweight for a time and needed the NJ tube to gain weight. And she needed an elemental formula - for whatever reason, she had diarrhea with Pediasure, Ensure, Boost, and even Peptamen Jr. but was able to gain weight on Neocate and later Vivonex. Once she gained weight and was no longer malnourished and her IBD was under control, she stopped needing daily tube feeds to maintain her weight. She does need them during a flare or she'll lose weight, but no longer daily and her Gastroparesis is definitely better than it was at her worst.

Glad they have put your daughter on steroids now. Hopefully she will improve quickly!

There is one option near us for 2nd opinion that is covered. The hospitals that this doctor is affiliated with might not. We will try it when I get a chance and probably weather - when it will not overwhelm me. I don't want to byte into more than than I can chew. I haven't recovered yet from her month and a half in the hospital yet and since the discharge there were numerous problems to handle: e.g., two ER visits on the same weekend for two different tube problems, paperwork, correspondence with the school, doctors, etc. Just before my daughter came down with IBD, I was going around with my health problems and those didn't go away. I juggle 3 children: two elementary and one middle school. Two youngest are special needs. There is no family support or community resources that I can rely on especially when we deal with health emergencies. I am above my head as is. GI hooked me up with a local health nurse agency, and they came and said that they can only educate me how to do all care by myself. They don't even do a tube care or anything hands on. I got lectured that as a parent I'm responsible to do all care day-today and have a coverage for any emergencies. And she added that if it's too much for me, then my kids are better off somewhere else. I'm shocked and speechless. They will be fired.

 

[Maya142]

GI hooked me up with a local health nurse agency, and they came and said that they can only educate me how to do all care by myself. They don't even do a tube care or anything hands on. I got lectured that as a parent I'm responsible to do all care day-today and have a coverage for any emergencies. And she added that if it's too much for me, then my kids are better off somewhere else. I'm shocked and speechless. They will be fired.

She should not have said that. But yes, you do have to care for your child's tube by yourself. Feeding Tube Awareness (the website) has a Parent's Guide that helped me and my daughter a LOT when she got her tube: https://www.feedingtubeawareness.org/education-materials/
They also have a Facebook page and used to be very responsive if you messaged them with a question. Also, please feel free to message me if you have any tube related questions! My daughter has had an NG tube, then an NJ tube, a GJ tube, and now has separate G and J tubes. She's had her G tube for 8 years now. They seem very overwhelming in the beginning, but you figure it out and honestly, using a feeding tube is really is very easy. I will say I was not juggling multiple young kids by myself and my daughter was a teenager so, it will certainly be harder for you in the beginning, but I bet you will get used to it pretty quickly.

I agree, I would try to recover from the month and a half long hospitalization, so you can keep your head above water. If she doesn't respond to steroids plus Infliximab, then pursue the second opinion.

 

[Magnet]

She should not have said that. But yes, you do have to care for your child's tube by yourself. Feeding Tube Awareness (the website) has a Parent's Guide that helped me and my daughter a LOT when she got her tube: https://www.feedingtubeawareness.org/education-materials/
They also have a Facebook page and used to be very responsive if you messaged them with a question. Also, please feel free to message me if you have any tube related questions! My daughter has had an NG tube, then an NJ tube, a GJ tube, and now has separate G and J tubes. She's had her G tube for 8 years now. They seem very overwhelming in the beginning, but you figure it out and honestly, using a feeding tube is really is very easy. I will say I was not juggling multiple young kids by myself and my daughter was a teenager so, it will certainly be harder for you in the beginning, but I bet you will get used to it pretty quickly.

I agree, I would try to recover from the month and a half long hospitalization, so you can keep your head above water. If she doesn't respond to steroids plus Infliximab, then pursue the second opinion.

It's not like I want someone to relieve me of my duties. I had a recent ER visit for myself when they gave me a med for my ache that made me to sleepy and dizzy. I could not do anything until it wore out. But I was in so much pain before I went there, that I could not be of any use anyway. I can push myself through most things. But something else is coming that will take me out for a couple of days. When you have a child who has issues with cooperating with you and a lot of sensory issues, even basic tube care can be a power struggle, especially at the very beginning or when they start to form granulation tissue or when they just don't feel well. I get things done with her for tube care but it is time consuming and stressful. We already had a y-connector leak and break on us and I only used it for 1 medication and it had to be replaced at ER. She has a long gtube because she would not tolerate to have extensions in and out because Mickey is so close to skin. But she is too active physically for a longer tube. If it gets out, I won't be able to put it in (too much for my sensory system) nor she would be cooperative for that with anyone unless they will sedate her. I don't think she will be able to switch to Mickey tube ever due to her sensory issues. For as long as she has a gtube, it will be a burden to both my daughter and me. I don't want to keep it for a rainy day. Yes, we will likely to have a rainy day, and she could end up with an ng tube for a short while. I feel bad that her sensory system struggles with a g-tube. She bends over with it, it's painful for her to rotate it, she doesn't want anyone to touch or look at it because she is scared that it might hurt.

Why did your daughter get a separate jtube? I thought that they have g-j tubes, which like two in one.

 

[Magnet]

It's not like I want someone to relieve me of my duties. I had a recent ER visit for myself when they gave me a med for my ache that made me to sleepy and dizzy. I could not do anything until it wore out. But I was in so much pain before I went there, that I could not be of any use anyway. I can push myself through most things. But something else is coming that will take me out for a couple of days. When you have a child who has issues with cooperating with you and a lot of sensory issues, even basic tube care can be a power struggle, especially at the very beginning or when they start to form granulation tissue or when they just don't feel well. I get things done with her for tube care but it is time consuming and stressful. We already had a y-connector leak and break on us and I only used it for 1 medication and it had to be replaced at ER. She has a long gtube because she would not tolerate to have extensions in and out because Mickey is so close to skin. But she is too active physically for a longer tube. If it gets out, I won't be able to put it in (too much for my sensory system) nor she would be cooperative for that with anyone unless they will sedate her. I don't think she will be able to switch to Mickey tube ever due to her sensory issues. For as long as she has a gtube, it will be a burden to both my daughter and me. I don't want to keep it for a rainy day. Yes, we will likely to have a rainy day, and she could end up with an ng tube for a short while. I feel bad that her sensory system struggles with a g-tube. She bends over with it, it's painful for her to rotate it, she doesn't want anyone to touch or look at it because she is scared that it might hurt.

Why did your daughter get a separate jtube? I thought that they have g-j tubes, which like two in one.

I think G-d has a sense of humor with me. After the 1st day on prednisolone her bm were down in number but last evening and night, she was popping every hour and so we got to the original number of BM. I think she had 6-7. This morning she got her 3rd day dose, and I don't know what to expect. I sent her to school because I thought that she was getting better, but now I'm not sure what to think, what to expect.

I think I've never mentioned that my two special needs ones are not potty trained. If they poop crazy number of times day and night, it means that I am changing that many diapers day and night. She has been holding up peeing at school, if she will trying to hold up pooping or won't let them change her diaper at school, it's not going to be good. She wanted to be at school today and she missed so much school this year, so I sent her today. But I asked to call me if they want me to pick her up if things are rough at school.

 

[Maya142]

I'm sorry things have been so hard. I think talking to your doctors is probably best - if she's drinking her Pediasure, then perhaps they can remove the tube soon. Generally I have heard from parents of kids with tubes that they prefer that you have not needed the tube for at least 6 months to a year. But if it's such a fight to take care of it, they may do it sooner IF you are not needing to use it.

My daughter did have a GJ tube but the portion that was threaded down through her stomach into her small bowel, into the jejunum, kept flipping back up into her stomach, so she had to have to changed 20+ times in a year, since she could not tolerate feeds into her stomach. So it was finally switched to a G tube and she was losing weight so quickly that she was hospitalized and a J tube was put in. A J tube surgery is an open abdominal surgery so I definitely do not recommend it unless you absolutely need one.

We had some infection and granulation tissue problems early on with the G tube, but after 3-4 months or so, things settled down. My daughter absolutely hated the long tube - the Mickey button was so much easier for her. You can keep an extension connected to the Mickey button if you want. It's better than a long tube because if something goes wrong with the extension, you only have to replace that and not the whole tube (and you can get very short extensions that are just a few inches long, so it's less likely to get caught on something). My daughter uses her J tube for meds enough that she often keeps an extension connected if she's home. Plus, if you do have to replace the G tube, with a Mickey button you can do it at home (well, if your child cooperates - it doesn't hurt at all according to my daughter, but it might scare your daughter, and she would have to be still but it takes only a minute or two with a Mickey button).

The other thing you can do is keep a short extension connected to the long tube (my daughter had a relatively short long J tube, so we did this to protect it), then if something breaks, it's the extension and not the whole tube. But yes, long tubes are a pain for active kids/teens.

In terms of tube maintenance, all my daughter does is clean it once daily, apply a barrier cream and put a G-tube pad on. We use fabric pads because they're more absorbent, but you can use gauze. You could also clean around it when you're giving her a bath.

 

[Maya142]

Also, you can get tube belts on Etsy that wrap around the child and the tube is threaded through, so it doesn't get caught on something and pulled. But I'm not sure your daughter would wear them if she has sensory issues...

 

[crohnsinct]

Hi there and welcome. I am glad you found this forum. It is a very caring and generous group who provide all the support and info you might need.

I am just responding quickly as I just got home and am falling asleep but wanted to deal with two technical issues.

First comment is on the scopes and their delay. I half want to say that it was good that they were being careful. It is not common but if the bowel is in terrible condition a physician not well versed in endoscopy skills could potentially perforate the bowel. That said, I would be very concerned if my child's GI was not well versed in endoscopy or if the hospital does not have a dedicated endoscopy staff. MY daughter has had a colon that they said looked like chop meat and they found ways to still scope her (they called in a dedicated expert endoscopist who used water rather than air to inflate the bowel etc).

Second, if your daughter had inflammation that severe, I am surprised they only gave her a week of steroids. A week won't do much of anything. Most kids need 3-4 weeks and then a very slow taper. You mention she is on day three dose. Are they just trying a week burst again? Now I am banging my head on the wall.

Third, how many weeks were there between the second and third dose (loading doses), when you got the 38 level? The reason I ask is because if it wasn't the full interval (8 weeks or 6 or whatever your schedule is) it isn't going to be a true indicator of how high her level will be at the true dosing schedule.

As has been said, I wouldn't abandon Remicade just yet. It can take a bit to work and sometimes needs help. My daughter was on it for 4 months along with steroids. Every time we tried to taper steroids she would be a bleeding mess. We eventually did an 8 week course of EEN and that kicked back inflammation to a point where Remicade was able to hold her. Sometimes the inflammation is just too severe for Remicade to wrestle with and it needs a little help….enter steroids or EEN.

I haven't read everything about the formula but if she is only getting formula and water then it is possible you are actually already doing EEN. Last question, for now, how is her weight? Are you sure you are getting enough calories into her? The reason I ask is because what we learned through the years is that being underweight will kick in the inflammatory process so it is super important to try to get that BMI up as much as possible. I know it is like emptying a boat with a hole in the bottom….inflammation leads to weight loss but weight loss adds to inflammation. Does your GI have a registered dietician. Most offices have them now. They are worth their weight in gold. They may even be able to loop in speech pathology or occupational therapy to help with the feeding issues and child life for everything in general.

Does your IBD center have a parent's group? That could be a good resource for you for some face to face support…assuming you could find the time.

Hugs to you! You are doing a great job. You are well versed at being an advocate for your kids. Your daughter is very lucky to have you.

I am going to catch some sleep and will read more thoroughly in the morning.

 

[Magnet]

Hi there and welcome. I am glad you found this forum. It is a very caring and generous group who provide all the support and info you might need.

I am just responding quickly as I just got home and am falling asleep but wanted to deal with two technical issues.

First comment is on the scopes and their delay. I half want to say that it was good that they were being careful. It is not common but if the bowel is in terrible condition a physician not well versed in endoscopy skills could potentially perforate the bowel. That said, I would be very concerned if my child's GI was not well versed in endoscopy or if the hospital does not have a dedicated endoscopy staff. I would prefer to think that each pediatric GI MD who has been practicing for quite some time and is part of the teaching hospital (it's true for both pediatric and adults in that hospital), that they have done a faire share of endoscopies on children of various ages and various colon conditions. MY daughter has had a colon that they said looked like chop meat and they found ways to still scope her (they called in a dedicated expert endoscopist who used water rather than air to inflate the bowel etc).

Second, if your daughter had inflammation that severe, I am surprised they only gave her a week of steroids. A week won't do much of anything. Most kids need 3-4 weeks and then a very slow taper. You mention she is on day three dose. Are they just trying a week burst again? We are about a week into steroids and the doctor will continue them. The dosage of daily steroids increased (even a little higher than they did a burst in the hospital) and the dosage is now split equally into morning one and evening one. Once a day did not work for her. She was doing good half of the day and having tons of the diareses another half (which were at night). That seems to work for now. As per doctor, they might keep her up on steroids for up to several months if they need to. Now I am banging my head on the wall.

Third, how many weeks were there between the second and third dose (loading doses), when you got the 38 level? 4 weeks The reason I ask is because if it wasn't the full interval (8 weeks or 6 or whatever your schedule is) it isn't going to be a true indicator of how high her level will be at the true dosing schedule. And they plan on doing the 4th dose four weeks from the 3rd dose - if the insurance approves it.

As has been said, I wouldn't abandon Remicade just yet. It can take a bit to work and sometimes needs help. My daughter was on it for 4 months along with steroids. Every time we tried to taper steroids she would be a bleeding mess. We eventually did an 8 week course of EEN and that kicked back inflammation to a point where Remicade was able to hold her. Sometimes the inflammation is just too severe for Remicade to wrestle with and it needs a little help….enter steroids or EEN.

I haven't read everything about the formula but if she is only getting formula and water then it is possible you are actually already doing EEN Yes she's technically on EEN for years; it's just a polymeric EEN. Last question, for now, how is her weight? It dropped significantly in the hospital because she had a full oral aversion and they were doing a TPN and failed tube placements. When we got home, she resumed to eat orally her EEN at her full amounts, and sometimes even some extra amounts - even before we started steroids, and her weight is quickly going up. Last week, she was close to her baseline and at the baseline and her baseline was normal weight- closer to 30th percentile range. I want her to get all the cushion back and maybe some. Steroids should keep her appetite going. Are you sure you are getting enough calories into her? She is gaining weight despite the recent inflammation, it means that calories are OK and that I got her doctors to treat her at the beginning of her recent flare. And her hemoglobin level improved after the hospital. (She needed iron infusions in the hospital.) She might still be losing some elements or having some malabsorption so they will be rechecking her bloodwork again before the next infusion. The reason I ask is because what we learned through the years is that being underweight will kick in the inflammatory process so it is super important to try to get that BMI up as much as possible. I know it is like emptying a boat with a hole in the bottom….inflammation leads to weight loss but weight loss adds to inflammation. Does your GI have a registered dietician. We saw the dietician last week. She was OK with her weight gain and that she's eating orally. Nothing the dietician can change for her because my daughter is already on EEN. If her oral intake drops below expected, I would be directed to tube feed her, and if she would not tolerate it, then it would be a hospital-level problem. Most offices have them now. They are worth their weight in gold. They may even be able to loop in speech pathology or occupational therapy to help with the feeding issues and child life for everything in general. My daughter technically receives those at her special-needs school, plus a nutrition clinic. But my daughter is likely on the spectrum, and those kids if they have ARFID - they are most resistant for change in their eating preferences. Her brother has been diagnosed with autism and is not verbal whereas she is verbal but delayed in speech, and his eating improves with a speed of a snake. Actually, he did the most progress during the pandemic when I kept them remote and we could explore foods each and every day without dealing with daily rushing. Her brother had lots of ER visits of hospitalizations, and it might be still that he is underdiagnosed. It's not necessarily IBD.

Does your IBD center have a parent's group? That could be a good resource for you for some face to face support…assuming you could find the time. There is no IBD center where I live. And this is why I'm here.

Hugs to you! You are doing a great job. You are well versed at being an advocate for your kids. Your daughter is very lucky to have you. Thank you and I wish you best of luck and for your daughter to be in remission and enjoy your lives.

I am going to catch some sleep and will read more thoroughly in the morning.

My answers are in purple.

 

[crohnsinct]

Great! It sounds like you have it covered and things are back on track. We all have a love hate relationship with steroids but when they work man do we love them.

Just wanted to send hugs again. One of my daughters is an Occupational Therapist who works with kids with special needs and the other is a Speech Pathologist who works with kids and teens with autism who are non verbal. Both of my daughters are trained in feeding and I hear the stories of what they are doing and totally appreciate your "speed of a snake" comment.

Keep us posted, we are pulling for you guys!

 

[Magnet]

Great! It sounds like you have it covered and things are back on track. We all have a love hate relationship with steroids but when they work man do we love them.

Just wanted to send hugs again. One of my daughters is an Occupational Therapist who works with kids with special needs and the other is a Speech Pathologist who works with kids and teens with autism who are non verbal. Both of my daughters are trained in feeding and I hear the stories of what they are doing and totally appreciate your "speed of a snake" comment.

Keep us posted, we are pulling for you guys!

What I had in my mind was "speed of a snail" LOL With regard to steroids, my daughter doesn't fall asleep, wakes up, doesn't sleep much, irritable etc. That's the price I'm ok to pay.

 

[Maya142]

So glad the steroids seem to be helping!! And that she’s gaining weight! I hope she continues to improve!