EEN seems to be working

[Pangolin]

First, a little background:

10 y/o son developed an abscess last October
Diagnosed with Crohn's after scope
Abscess drained in hospital
IV antibiotics including flagyl given
Feeding tube started to improve iron and protein levels, told diet could be unrestricted otherwise
Remicade started @ 10 mg/kg

Noticed improvement immediately with the tube and antibiotics even before Remicade started. By December, sed rate down to 9, crp at 3.5, abdominal pain trending down, gained 12 lbs. Feeding tube came out, and his diet returned mostly to normal. Next Remicade infusion in Feb, sed rate up to 28, crp up to 6.5, a little diarrhea had returned along with a little more pain.

His symptoms improved after the infusion, but around then we started to notice that certain foods triggered more symptoms, with the worst offenders being potato chips and chicken nuggets. We read up more on diet and Crohn's and inquired about EEN but were advised it probably wasn't necessary at that point.

In April when the next Remicade infusion came around, some symptoms had again increased and the sed rate was up to 33. At that point we decided it was time for full EEN (in this case, just drinking the Pediasure shakes), and Remicade was switched to every 6 weeks rather than 8.

He's had about 8 weeks of EEN at this point, and he's doing better than ever. Sed rate down to 20 and crp below 1 at the last infusion. Vitamin and iron levels look good. No diarrhea. If things continue like this, I think we'll see a normal sed rate next time.

The Pediasure doesn't have a lot of salt in it, so he wants some additional salt sometimes.

I don't know when or if he'll be able to have much regular food again, but right now I think this diet in conjunction with the Remicade is really working. I wish we'd been advised to try EEN earlier--rather than being duplicative or too much trouble, I think it's really been the key to getting this under control.

 

[Tesscorm]

When my son did EEN for six weeks to induce remission, he was allowed clear fluids. This included clear pop or gaterade, freezies/popsicles (no chocolate), gummies, clear candies (again, no chocolate flavour, caramel, etc.... only 'clear'), jello and broth. The broth made a big difference! Being able to have a bowl of broth as 'dinner' gave him something savoury. As well, he was able to take broth to school in a thermos and eat lunch with his friends (I know school is ending but this could be done when going to a friend's for the day??). And, while limited, there is some variety in broth - beef, chicken, veg, seafood. (I bought organic broth - the one I made at home never seemed to be as clear as the store bought.)

Perhaps ask your son's GI if he will allow clear liquids along with the EEN??

 

[Pangolin]

Perhaps ask your son's GI if he will allow clear liquids along with the EEN??

I'm sure some of those clear liquids would be ok. We've been giving him soluble fiber in water once a day. Sometimes he has a peppermint. We do let him have salt if he wants it. Occasionally he has some other clear drinks. Unfortunately he has always been steadfastly opposed to broth or soup of any sort (weird, I know).

I don't think he'll be going back to chips and pizza any time soon, but maybe he'll work his way up to something like plain rice eventually. We're going to be very careful about any return to more normal food.

 

[Pangolin]

Our experience with diet has led us to some speculation about the causes of Crohn's.

Here's a related presentation from CHOP: http://media.chop.edu/data/files/pdfs/special-diet-ibd2016.pdf

Obviously diet has some effect on Crohn's, with EEN being an effective treatment. Other diets like SCD work for some people, but the theory behind SCD seems to be wrong given its incompatibility with EEN (eg the SCD is very anti-sugar, while EEN formulas often contain a lot of sugar).

Why does EEN work? Four possibilities:

Regular diet contains something harmful that leads to inflammation
Regular diet is missing necessary nutrients
EEN alters the microbiome, causing a better mix of bacteria
Physical reduction in damage to intestines due to liquid food (no hard bits scraping the insides)

My guess is that the problem is mostly that regular diet contains something harmful that leads to inflammation. This is why it's important to eliminate nearly all other foods--if the problem were mainly a lack of important nutrients, EEN would be more effective at a lower % of the diet.

So what is that harmful component, at least for my son? Is it sugars or starches as the SCD would imply? Is it specific protiens like gluten? Is it other food additives like carageean? Is it potato glycoalkaloids increasing gut permeability? Very hard to figure out!

Our best guess right now given the relationship we've observed between fried foods and symptoms is that oils used in frying may be particularly aggravating. When heated to frying temperatures, oils are oxidized and otherwise chemically changed in a number of ways: http://lipidlibrary.aocs.org/OilsFats/content.cfm?ItemNumber=39209

Here's a new study comparing the degradation of various oils. Some of the polar and oxidized compounds formed are likely to promote inflammation: https://actascientific.com/ASNH/pdf/ASNH-02-0083.pdf

 

[Tesscorm]

It's been a long time since I did any research on foods/diet and, really, I didn't ever find much of a connection between the food my son ate and any symptoms. I did post the food reintro guidelines that his hospital gave us once he was finishing up his exclusive period. There is a subforum in the Parents' section on diet and I believe there is a thread dealing with EEN?? There is also another thread called Kids on EN?? In one of these threads, I posted my son's re-intro diet. If you can't find it, let me know and I'll try to find it.

It didn't specify foods but reintroduced food groups. For example, and this is only if I'm remembering correctly, after the exclusive period, he added back low residue foods like white bread, pasta, etc for one week. Then, I think it was proteins like chicken, fish, etc. for the second week, and then dairy...

But, I'll tag a few who I know have quite a bit of knowledge and experience with diets, elimination/reintro of foods, een...

MLP
Crohnsinct
happy

 

[Pangolin]

Why EEN Works for Us: The Pros and Cons

The best thing about EEN is it is very easy. No needles, no IVs, no doctor's appointments--you can just pick up a case of Pediasure while doing your regular grocery shopping. Unlike the SCD, you don't have to cook anything special or read every ingredient list in the house to figure out if this or that food is allowed, and if you want to know how many calories your kid (or you) is getting, just count up the bottles.

EEN has minimal side-effects (mostly: it's boring, but you can always use a feeding tube if flavor is an issue,) and if you don't like it, you can stop immediately. No withdrawal.

In our particular case: Eating has always been a struggle for my son. Day one home from the hospital, eating was a struggle. As a toddler, his eating was very restricted and he flat out refused to eat most things. In fact, the one thing he regularly ate in those days was Pediasure. Even in those days, I think he knew what we adults did not--that other foods hurt and Pediasure didn't.

As he grew he finally began eating a more varied diet--but what he added wasn't good. Hot dogs, pizza, chicken nuggets--all things I'm not letting him have these days, anyway, because I think they make his condition worse.

I see a lot of people concerned about normal eating rituals. "What about lunch at school? What about parties?" These things were basically already off the table for us. He's never eaten a sandwich in his life, and we don't attend that many parties.

We looked at the SCD (we even took him to Seattle to see Dr. Suskind himself,) but that was an obvious no-go. I'm sure it's great for some people, but it is way too restrictive for a kid who simply won't eat most of the things it allows.

But he'll drink Pediasure!

Eating is now much easier for us than it was before. We no longer have to pester a kid who simply does not like eating about finishing a meal he has no interest in. I think our relationship has improved without the constant pestering, he finally has something he can carry in his lunchbox (he never would eat sandwiches or hot lunch,) and he's feeling better.

Some people say that EEN (especially long-term EEN) is too hard. I'm sure it is for some people. Medical decisions are highly personal. But there are pros and cons to everything. Medications can have some pretty serious side effects (and don't work for everyone.) Inflammation, left unchecked, can cause major intestinal damage that requires surgery, even colostomy, to treat. Drinking Pediasure for a couple of months might be boring, but it sounds a lot better to me than losing part of your intestines at 15.

At the very least, it's something to consider.

 

[my little penguin]

I will say this woth all respect
Your child is 10
And just started to feel better due to een and remicade for a few months
I stress months

Ds has life threatening food allergies in addition to Crohns
So he has never had a normal diet
Ds has dealt with this disease for almost 8 years
And the first and second time of EEN
When he was younger like your son were ok
Not the best
But ok
Just like you I posted over and over about een
And the teenager parents tried to
“Enlighten” me
But I too thought formula seemed easier
And why could “they” just get their kids to drink /tube in een
Since it wasn’t “hard”

Teens are a whole other kettle of fish
On sooo many levels
Which is why they separate them in school elementary school kids are different than teenagers

So please enjoy een while it lasts

My views of what would happen woth my kiddo the first year after dx has drastically changed after 8 years

And yes when Ds was sick getting him to eat and gain weight was difficult
Een was great


Others tried to warn me
And I thought they weren’t pushy enough etc
Good luck
Enough age 10
It’s a good age

 

[my little penguin]

Wanted to add
For een
The good tasting pediasure DOES not work for everyone
Some kids like mine unfortunately only absorb the foul tasting semi elemental
Which make een more difficult
With time
Mine kiddo no longer tolerated that and had to be switched to amino acid based (elemental formula ) which next to no kids can tolerate orally

Ds powered through despite gagging multiple times and drinks his orally as a supplement
To maintain growth /weight and increase the chance of biologic working longer

FWIW semi elemental (peptamen jr ) and elemental (neocate jr / elecare jr)
Can not be bought at the grocery store and are very expensive
Most insurances do not cover them
At all

https://www.neocate.com/shop/category/neocate-junior

Neocate jr is $40 a can
Older kids drink more than a can a day
Or more than $1200 a month

 

[Maya142]

Yes - my kiddo would have happily had Pediasure. She could not tolerate it or Ensure/Boost.

She ended up having a semi-elemental formula. She was diagnosed at 16, so trying EEN was hard. She did try, but she could not drink enough formula and was constantly starving and she got very depressed. She couldn't eat with her friends at school and since going out with her friends often involved food, she felt left out. She found it very hard to go and not eat.

So we switched from EEN to supplemental EN to help her gain weight.

She drank 2-3 Peptamen Jr. (which is semi-elemental and not the best tasting) and kept losing weight. We finally gave in and she got a feeding tube (NG tube). When she started getting a LOT of Peptamen through the tube (we were aiming for 60% formula or so), she started having a LOT of diarrhea.

After a whole month of diarrhea 8x per day, everyone agreed she could not tolerate it. She then moved on to Neocate which is elemental and truly tastes terrible. She did well for a little while and gained some weight. But then she had developed Gastroparesis, was becoming dangerously underweight and had started throwing up NG tube feeds because her stomach didn't empty.

Anyway, the only option was an NJ tube which would have to stay in all the time. She was a senior in high school and absolutely refused to have a tube in all the time (she had been inserting her NG tube at night and removing it in the morning, but that's not an option with an NJ tube since it goes deep into the small bowel).

She tried to drink Neocate instead. She tried very hard and we tried everything we could to make it easier - made it ice cold, got straws etc., but she just could not do it. Said it tasted like "feet" .

She ended up hospitalized 3 times because of being underweight, developed Refeeding syndrome but stubbornly refused the NJ tube. She was 18, so there was nothing we could do. Finally, at a very dangerous 82 lbs, agreed to the NJ tube.

She only agreed because she had developed an arrhythmia from being so underweight, had electrolyte imbalances that lasted for months and because doctors began to tell her that her organs would shut down because she was so underweight.

So she agreed to an NJ tube and finally began gaining weight with the Neocate. She got MUCH better as she gained weight, had more energy, her electrolytes normalized and after 3 months of the NJ tube, we had a GJ tube surgically placed in her stomach.

My point of the story is this. Your child is 10 now. You can "make" him drink his formula. He may not be very hungry now, but eventually that is going to change, as Remicade and EEN heal his gut. And by 14-15, he is not going to want to only be on formula. He's going to want to go out with his friends, eat at friends' houses etc.

By 18, he will be making his own decisions and all you can do is watch and hope you taught your child well enough that they won't make bad decisions. But sometimes, you will have to watch them learn the hard way.

Teenagers can be incredibly stubborn as I learned with my daughter!

You can push a 10 year old to drink. You cannot push a 15 year old to drink. And you most definitely cannot push an 18 year old to stay on EEN if he does not want to.

All I am saying is that EEN is going to get harder as he gets older. Also, since kids tends to have more severe IBD, it is VERY likely he will need a medication or a combination of medications. I have been on the forum 5 years, and I can only think of one child who managed with the SCD and has stayed in remission on it.

It is very rare for kids' IBD to be controlled by formula only.

It sounds like he is still on Remicade and the EEN was only in addition to Remicade to help him get into remission. It sounds like he is definitely in clinical remission, but you can't be sure if mucosal healing has occurred unless he has scopes. Though a low FCP and ESR does support it.

FWIW, my daughter was like your son when she was younger. Refused to eat, very picky, every meal was a battle. Once she got the tube and the pressure to eat was off, she started to love food. She had never loved food before and it was SO nice to see.

So I do understand where you are coming from - you have a child who doesn't want to eat, so why not just keep him on EEN? But we all just want to warn you not to drop the medications (Remicade) because eventually he is going to want to stop EEN.

And like you said, then he will need something to control his disease, to prevent losing parts of his bowel. So definitely stick with Remicade, because it is hard to restart once you stop it. And it sounds like he has pretty severe disease, so he definitely needs it.

 

[Maya142]

Here is another presentation by CHOP: https://media.chop.edu/data/files/pdfs/food-healthy-gut-ibd.pdf

 

[Pangolin]

Maya142 & my little penguin:

I understand that this doesn't work for everyone. I'm not suggesting that it does.

Here's what I am suggesting:

1. Contrary to what many gastroenterologists continue to believe, diet *does* affect Crohn's and could be part of the causation of Crohn's.

2. EEN has excellent results at least in the 8 week trials in pediatric patients. There is *no reason* not to try EEN in the majority of newly diagnosed pediatric Crohn's patients (whether in combination with other treatments or not), however as we've seen on this forum most new patients are not even aware of it.

3. Whether or not it will work long-term, I can't say. I can, however, tell you that we've personally witnessed dramatic positive results since starting it.

 

[Pangolin]

One other thing people should consider:

If the medication(s) you're currently on aren't doing enough, try EEN in addition to see if it helps. I know EEN is most frequently tried immediately after diagnosis, but in our case we added it later on top of Remicade and still noticed substantial positive effects.

 

[my little penguin]

Pangolin most larger pediatric ibd centers in the US
Now use een to induce remission in pediatric Crohns
They also use it in the UK ,Australia and Canada as first line
And yes those folks have been on here at the start
The majority use it at the start
Some parents CHOSE not to use EEN and that is their right as a parent
Only a handful of folks in the past 2-3 years on here were not presented with een as an option
A very small handful
In 2011 the majority were not presented with een as an option
But that has radically changed

Your child was given een as an option since you did ng tube feeding at the beginning of dx

 

[my little penguin]

Other thing again
The top ped ibd GI centers do focus on diet
They all present scd /paleo /Crohns exclusive diet /ibd aid diet
Use of probiotics etc...
At least from the sampling on here all areas of the US /UK Canada Australia have been educated on the various diet options as adjunct therapies

Parents of kids with ibd doesn’t have a many “new” parents as it used to
Which is probably a good sign
Only a few”old timers” who try to help

But poor diet DOES NOT cause Crohns
If that was the case a lot more kids would have Crohns
Diet can help heal woth meds
But doesn’t cause it
A lot on here had signs as infants prior to any food introductions

 

[Pangolin]

Penguin,
We were not "presented with een as an option". The intent was clearly nutritional support, not treatment.

It's very easy to have a mindset of "it's not healthy to not eat a variety of 'normal' food", and it can be hard to break out of that. In the case of Crohn's, that may be holding a lot of people back from trying this even if it's actually healthier for them.

As for causation, the causes of Crohn's are nowhere near established. Food is not necessarily the only cause, but maybe it's something like food + pathogen + genetic predisposition (with the caveat that Crohn's itself may be a heterogenous condition). If changing diet results in remission in some people, that is a solid piece of evidence in favor of diet having a causative effect in the first place. Maybe some dietary component would not cause Crohn's in 99% of people, but it may in fact be part of the cause in the remaining 1%. To say that diet "does not cause Crohn's" is presumptuous and wrong.

 

[Pangolin]

Furthermore, regarding usage in the US:

"While EEN therapy is fairly common in Europe, it’s used less frequently in the United States.

According to a study published in the Journal of Pediatric Gastroenterology and Nutrition, only 4 percent of pediatric gastroenterologists use this therapy in North America, compared with 62 percent of Western European pediatric gastroenterologists. A later study published in the Journal of Pediatric Gastroenterology and Nutrition found EEN was used regularly by 12 percent of North American pediatric gastroenterologists, with Canada reporting significantly more use than the United States."

 

[Maya142]

1. Contrary to what many gastroenterologists continue to believe, diet *does* affect Crohn's and could be part of the causation of Crohn's.

2. EEN has excellent results at least in the 8 week trials in pediatric patients. There is *no reason* not to try EEN in the majority of newly diagnosed pediatric Crohn's patients (whether in combination with other treatments or not), however as we've seen on this forum most new patients are not even aware of it.

3. Whether or not it will work long-term, I can't say. I can, however, tell you that we've personally witnessed dramatic positive results since starting it.

This is absolutely true! We all agree with that. In the short term, EEN works better than steroids for mucosal healing.

When I joined in 2013, EEN was not as popular like you say. Most kids were not offered EEN. The parents that came on here learned about it and went back to ask their GIs if their kids could do it. Most GIs said yes but said they didn't offer it because of compliance issues.

What we mean is that it was not being presented as an option in the major academic pediatric IBD centers. Now it is. It is very big in CHOP, BCH and Cincinnati Children. If you go to one of the best pediatric IBD centers (BCH is currently ranked number 1), they will bring up EEN now.

At CHOP, they almost never use 100% EEN anymore. They use 80% formula, 20% food. They've found it works nearly as well as 100% EEN and it is a lot easier on kids.

If 80% formula does not work for a child, then they'll go to 100% to 6-8 weeks. And I know at least at CHOP, they are doing a lot of research on EEN and diet and microbiome. We have seen many studies focusing on diet spring up in the time my daughter has been treated there.

I agree that at smaller hospitals and private GI practices, EEN is probably not presented as an option. Hopefully that will change.

But since I joined in 2013, the major pediatric IBD centers have really started using EEN as a first like treatment to induce remission.

It is definitely true that it is used more in other countries though. It's always the first line treatment in England I think. And Canada.

 

[Maya142]

I actually think many of the new parents we have had join this year have had their kids on EEN. I'm thinking of coolbeans and bethhall3434.

But many do join and have never even heard of EEN. But I really do believe that will change within the next 5 years or so. We may even know what kind of diet is best for kids with IBD by then!

As for causation, the causes of Crohn's are nowhere near established. Food is not necessarily the only cause, but maybe it's something like food + pathogen + genetic predisposition (with the caveat that Crohn's itself may be a heterogenous condition). If changing diet results in remission in some people, that is a solid piece of evidence in favor of diet having a causative effect in the first place. Maybe some dietary component would not cause Crohn's in 99% of people, but it may in fact be part of the cause in the remaining 1%. To say that diet "does not cause Crohn's" is presumptuous and wrong.

As for causation, I think it's got to be diet + genetics + environmental triggers, like you said. They are now finding that certain emulsifiers can induce IBD-like symptoms in mice.

I do agree that our Western diet is exacerbating it. When we lived in India (more than 10 years ago), Crohn's was not a disease I ever heard of there. I literally did not know it existed till we moved back to the US.

Allergies were also not a big problem there - food allergies were unheard of and so were seasonal allergies. Living there, none of us had seasonal allergies. After coming back to the US, in the last 3-4 years, both my girls, my husband and I have developed seasonal allergies.

Now Crohn's is becoming common in India. At the same time, processed food is becoming more available and cheaper and all the fast food places that exist here are now in India too (even Wendy's!).

So I do think it has to do with food/diet. But it can't be only food because then there'd be a lot more cases.

 

[crohnsinct]

When was that paper you quote published? I am surprised at those statistics because I have had my two girls at 3 of the non major IBD centers and all three use EEN extensively. Also, you have to be careful quoting the study because just because 12% use it does not mean that only 12% are aware and support it. It could mean that only 12% use it because patients are denying it as a treatment option. I have actually read this fact in papers etc. I think it is a cultural thing in the U.S.. Perhaps food is a bigger focus here? I think in Europe the payers are the motivating factor in using EEN i.e.: they won't pay for steroids unless someone has tried and failed EEN first. Also, they do use it widely but only to induce remission and then move to a maintenance med. Their use of EEN as a maintenance long term therapy is not as widespread.

We also have to be careful at saying food causes Crohn's. The cause of Crohn's is a combination of having the gene and then being exposed to whatever is going to turn the gene on. G.E.M.. Genetics, environment and microbiome. There is a lot of research going on with the micro biome and the effects of the food we eat and our environmental exposures on the micro biome and how the genes get turned on. There is also a widely held theory that there are more than two types of IBD and a push to identify the different phenotypes and the best therapy for each. It is thought that once the phenotypes are identified we may find that there are many different diets to treat IBD patients.

Another thing to consider is that EEN works better for small bowel disease than it does for colonic disease. If a patient is acutely ill with severe colonic disease (my daughter was in PICU) they may not have the time to wait to see if EEN will work with those patients and may chose to jump straight to steroids. Many kids are diagnosed in a very ill state as IBD tends to be more severe in children. My daughter was put on IV steroids and had a TPN through PICC line.

One last thing...physicians do try to transition their patients to at least a 50% diet but not just for psycho/social reasons. There are a lot of things in the formula that used long term could be bad for IBD or actually cause other health conditions. I think you pointed this out. They do not know why it works. But because of the potential risks both psycho/social and other health concerns, they do like to transition to a diet at some point. Our old GI used to tell my girls to go to college and learn to develop a really good formula.

It appears your son is in a similar situation as my daughter (if I am remembering correctly your son is on a maintenance med). She was on Remicade for 4 months and could not transition off of steroids without symptoms returning. Our doc wanted to add Mtx but we asked about EEN (this was 2012). He didn't offer it. We asked for it. He said it was a very good therapy but he has never had a patient agree to it. My daughter completed 8 weeks and went into solid remission. It was just the boost Remicade needed. We transitioned her to food with no problems and she remained in remission for 3 years.

Fast forward to 2015 and her sister was diagnosed and EEN was the first treatment presented with the plan of adding a very specific IBD diet at the end. It didn't work. She did another round of EEN with the plan of alternating EEN and food every 4 weeks (a therapy CHOP was using at the time). That didn't work. We needed to add Mtx for my daughter and later Remicade. We do still consider EEN an option instead of steroids to treat acute flares and to support med transitions.