Long-term maintenance EEN?

[Pangolin]

I've been reading about the success of EEN in inducing remission, but I haven't heard much about people staying on it for months or years. Does anyone have experience with this? Why do people transition off EEN if it's working?

More detailed version:
My 10 year old son was diagnosed with Crohn's a few months ago, and he was treated with antibiotics, Remicade, and a feeding tube with nighttime feeds for about 10 weeks. The doctor's perspective on the feeding tube was that it was intended to improve nutrition and weight but not intended to replace eating or really treat the inflammation itself. We were told he could continue eating what he felt like, and since the tube itself was an annoyance it was nice for him to get it out.

I noticed a dramatic improvement in his condition almost immediately after he got the feeding tube. Since the tube has been out, he's been drinking a few bottle of Pediasure every day, and I've been starting to notice a connection between eating more other foods and him feeling worse. At this point I'm starting to wonder why we're bothering with feeding him other foods if it's just going to make him feel bad--he'd probably be just as happy on the all-Pediasure diet anyway. Even before diagnosis, we tried feeding him some Pediasure and noticed a sudden improvement in diarrhea.

The goal has been to get him eating normally through drugs, but I'm wondering if this is not a worthwhile tradeoff. Why hurry him onto a normal diet? Remicade is a very scary drug with many side-effects. If patients can just go on an all-formula diet and have similar or better long-term results, why subject people to these risks? I've also heard of people transitioning from EEN to the specific carbohydrate diet, usually involving a great deal of difficulty, but if EEN is working why try so hard to switch away from it? (I understand why people don't want to use a feeding tube, specifically, for the rest of their lives, but why not drink the same formula if it works?)

 

[my little penguin]

I thought exactly like you when Ds was dx at age 7
I couldn’t understand why anyone would medicate their child let alone woth biolgics

So before you go there
Please try this
There is a very big difference between having mostly formula woth some food
And NO solid food at all (true een )
Most kids need semi elemental or elemental formula to truly do een

My kiddo has had anywhere from 30-50% of his calories from formula over the past 7 years
Started woth semi elemental peptamen jr later moved on to neocate jr (elemental amino acid )
He just feels and does better on this level
It’s an adjunct to biolgics


When he does een (no solid food at all ) he will beg for food quickly within a few days to a week

The mouth has a need to chew
The brian is accustomed to signaling a want for solids
Socially it’s extremely isolating

As an adult
Try formula only woth polymeric formula for a week
No solid food
Go to parties /out to dinner woth others. Watch others eat at work
It’s extremely difficult
Depressing and isolating
Everything revolves around food

My kiddo has been on biolgics for years
No issues

My kiddo has had food allergies for years so going without is not something new
But having different vs having nothing
Is just beyond difficult for a child

Adults are different
They have better coping skills
Good luck

 

[my little penguin]

I will say bch and Chop both encourage the use of een as maintence
But they are not 100% EEN
So you could get a second opinion there and guidance

Odds are it won’t replace biolgics completely though

 

[Maya142]

We go to CHOP and they are big on enteral nutrition. But not EEN - they do use 80% EN, 20% food for induction of remission. If that isn't working, then they will do 100% EN for 6-8 weeks.

After that, food is slowly re-introduced. But the kiddo is kept on supplemental EN, to help with weight gain and growth. My daughter used an NG tube at first for night time feeds. She inserted it every night and pulled it out every morning before school. It sounded VERY intimidating at first, but she got very good at inserting it within a week and at our hospital, kids as young as 8 insert their own tubes.

When it became clear she was going to need formula for the long-term and was unable to drink enough formula to maintain her weight, we had a tube surgically placed in her stomach. She says it is is MUCH better than the NG tube. She got formula through that for several years and now does not need it because she can maintain her weight without it.

But plenty of kids do supplemental EN, like your son is doing, indefinitely. If he is feeling worse on Pediasure, it is also possible he needs a more broken down formula. What was he getting through his tube? A semi-elemental formula like Peptamen Jr or Pediasure Peptide might be a better choice.

We never did 100% EN - my daughter tried but found it too hard. She was 16 at the time. I understand wanting your child to stay away from these drugs, but even at our hospital, where they are VERY big on formula and tube feeding, very few kids are able to use formula as their only treatment.

Having no food at all can also be very hard on a child. In the short-term, it's doable (for some kids), but indefinitely is HARD. Can you imagine doing that as an adult? I can't. But I will say I totally understand where you are coming from, because my husband and I agonized and agonized over putting our daughters on biologics. I spent many sleepless nights worrying about side effects.

They have both been on biologics for 8-9 years now. NO side effects at all. No increase in infections. They are actually now considered to be pretty safe drugs.

My younger daughter had scopes 8 months after being put on Remicade and MTX after her Crohn's diagnosis - they showed that her entire colon looked perfect - all the ulcers had healed. There will still some mild inflammation in her small bowel but nothing like before.

Now I don't worry about the risks with biologics much because I know they are keeping my girls' diseases under control (both girls have arthritis, younger one also has Crohn's). They are preventing damage. You can live without your colon but not your small bowel, so it is very important to prevent damage to the intestines by controlling inflammation.

How long has your son been on Remicade? What dose is he on? It is possible he just needs a dose adjustment if he is still not feeling great.

 

[Pangolin]

Thank you so much everyone! I agree with the notion that being on 100% liquid diet wouldn't work for most people (I don't want to make the child hate life or something, after all.) But at least I don't need to be worrying about him drinking Pediasure if he likes it and does well on it.

Maya, he's been on Remicade since early November, 10 mg/kg. So far he's had a couple of days when he felt cruddy and threw up after Remicade and one very worrying time (last time) when he had chest pain on the drive home. (Unfortunately, despite these side effects, it looks like he might genuinely need the medicine.) You're probably correct that adjusting the dosage might help him feel better.

 

[Maya142]

Have you told the doctor about the chest pain after Remicade? It was probably nothing but they may want to monitor him more carefully for a reaction next time.

So he is already on the highest dose...hmmm. Some doctors will go above 10 mg/kg but others will not. My daughter went on to 20 mg/kg for her juvenile idiopathic arthritis. Her rheumatologist had used "high dose Remicade" on several patients and though it was experimental, wanted to try it. Our GI had never used a dose that high and would not do her infusions - rheumatologist had to handle them.

How frequent is his Remicade? If he is on every 8 weeks, you can up the frequency to every 4-6 weeks.

Another thought - when you switched from tube feeds to drinking the formula, did you switch the formula at ALL? For example did you go from Pediasure 1.0 to Pediasure 1.5? Or did you go from Pediasure Peptide to regular Pediasure? Or from something totally different to Pediasure?

I am wondering if what you are seeing is formula intolerance and not food intolerance per say. Some kids need semi-elemental formulas. Some need elemental formulas. Others are ok with more dense (1.5) formulas and others are not. It's all trial and error.

Additionally, I'm also wondering if he has had labs or a Fecal Calprotectin done since he stopped tube feeds. It's possible that Remicade is not completely controlling the inflammation yet, since he has only been on it three months or so. That may mean increasing the frequency or adding another medication like Methotrexate to give Remicade a "boost."

You could also go back to tube feeds, if your son is not opposed, for a while until Remicade really kicks in. Or if he doesn't mind drinking Pediasure, you could do EEN that way and avoid the tube altogether. There are several kids who have done EEN by drinking the shakes instead of using a tube.

I am going to tag crohnsinct and pdx since they may have good advice for you.

 

[crohnsinct]

When you say "feeling worse" what do you mean? Are his Crohn's symptoms returning? What are they?

If 100% formula made him feel better (which it has been shown to be VERY successful in inducing remission) and once he came off 100% he started having symptoms again....my immediate thought went to "maybe Remicade isn't exactly working". How are his labs? Has he had a fecal calprotectin test done? Have you taken a Remicade levels/antibody test?

If his levels are low, he may need more or more frequent Remicade. He could have antibodies making it not work. It could just need a little more time...it could take 3-4 months to get to therapeutic range. It might need a little help with something else (partial EN, methotrexate etc). It might just not be working.

In order to answer the above, you really need a levels test and testing to assess inflammation levels.

Maya has an interesting theory also about the type of formula.

If you really wanted to pursue EEN/diet as the only treatment, CHOP is your best best. Boston and Seattle also are using it. Seattle is doing a lot of research in the field. The only thing is, as good as these formulas work they also come with their own set of negatives. Not bad at all if you are using them for 6-8 weeks, then partial but when they become 100% of your diet forever, you could create other health issues. I am telling you, there is a lot of money to be made for the person who develops a formula that works and is 100% good for you for long tern use.

Formula/diet treatments requires very careful monitoring. Labs, scopes etc. A lot of people say they "feel" better and go into clinical remission but whether or not they are in endoscopic remission is another story. I have yet to read a study that SCD results in endoscopic remission and lowered surgery rates at the same rates as the biologics. Doesn't mean it can't happen. Tagging optimistic. Her son has been treating his disease with diet alone. She isn't on here a lot but they have had very good success. Perhaps she could share her experience and knowledge.

I really, really wanted to use EEN/diet for my daughter T. She had mild disease. It seemed like a no brainer. As soon as we got to 20% food, symptoms returned. It was a no go for us. We moved to Methotrexate. Nice mid line theory. Still didn't work. We then went to Remicade. I couldn't believe her mild disease needed such a big drug. She has been on it 2 years now and doing great. My older daughter has been on it 6 years and it looks like she is losing response. We are fighting tooth and nail to get it to work again. If you told me 6 years ago that I would be fighting so hard to keep the drug I was so scared of, I would have laughed my head off. We have had a really good 6 years!

 

[pdx]

I agree with Crohnsinct above that it could be that Remicade just hasn't fully kicked in yet; sometimes it takes a while.

It took about 6 months after my daughter started Remicade before she started feeling good again. During that time, she needed EEN (followed by partial EN), budesonide, and methotrexate to jumpstart the healing process. She also needed a few Remicade dose increases during that 6 months.

Good luck--hope your son starts feeling better soon.