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Crohn's Disease Forum » Parents of Kids with IBD » Diet/Cooking for Kids with IBD » Can Nutritional Therapy be Used on a Practical Basis for Maintenance?


07-14-2015, 04:02 PM   #1
crohnsinct
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Can Nutritional Therapy be Used on a Practical Basis for Maintenance?

Clearly I can't give up the dream. After watching this, I am thinking we moved T too quickly.

https://www.youtube.com/embed/6EbHUYy5ePg
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
07-14-2015, 05:27 PM   #2
Mr chicken
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Obviously you have had way too much to
You can have your dream as long as she stays on meds
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DS dx at age 7 Crohns
Humira 40 mg every 10 days
Mtx 12.5 mg -due to juvenile spondyloarthritis associated inflammatory bowel disease

Vsl#3ds iron Zantac folic acid


Aka MLP....
07-14-2015, 10:11 PM   #3
pdx
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Thanks CIC. That's interesting that the CHOP induction regimen is 80-100% EN. I wonder if 100% is best, but compliance is better allowing some food, or if it doesn't matter (as long as you are above 80%). I still have never seen reference to a specific study about that.

E did supplemental EN for several months, but isn't doing it now, and was on a special diet for a few months, but isn't now. She hated doing both of them, but was able to get through them because they made her feel better, and she knew it wouldn't last forever (and because we bribed her). Now that she seems to be close to remission, it would be hard for me to try to convince her to continue doing either 50% EN or a special restrictive diet. *She* won't feel like she's in remission if she has to do either one, and it's hard to reason with a 12 year old about it. I feel like if she flares, she'll understand the need for it, but not now.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
07-14-2015, 10:27 PM   #4
Optimistic
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Clearly I can't give up the dream. After watching this, I am thinking we moved T too quickly.

https://www.youtube.com/embed/6EbHUYy5ePg

I'm eager to watch when I get alone. What does he conclude?

Our child's GI practice is seeing early success with diet and EEN. I don't know all the detail but we see him next week. He will also have feedback from CHOP and children's Cincinnati's latest cases as well as what a dr in Israel is doing

One challenge of course is compliance. Lifestyle takes such a hit.
07-14-2015, 10:51 PM   #5
Clash
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pdx, some from C's GI group, including their nutritionist went to a seminar about the studies on EEN at CHOP.

The way I remember the nutritionist stating it to us was that there was a statistical difference under the 100 mark, say if you chose 90 or 80% but it wasn't much. I think she actually gave the numbers but I can't remember them.

Our GI, or at least the nutritionist was comfortable with the 80/20 as she said the results they showed with that we're great. This was all just an info talk since at the time C was choosing EN for weight gain. So he was doing 2700+ calories by tube then eating throughout the day.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
07-15-2015, 06:45 AM   #6
Charleigh
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E has had great success with EN and no meds.

He was 12-14 weeks completely liquid. We very slowly increased solid food to about 30-40% and only allowed easier to digest foods at first. We slowly added in more difficult to digest foods, keeping his liquid calories at 60-70%. He now eats almost anything he wants as long as it is gluten and lactose free. The only food he doesn't seem to digest well is popcorn. Other than that, his diet is more open than ever. He says he would do it all again in a heart beat.
He has been doing this for almost a year. His growth is crazy, his color is finally truly normal, etc, etc.

It is expensive. We use Ensure plus and now that he is only at 60=70 percent calories liquid it is about 200-250 a month. He is med free and it is worth it.

We have noticed that if he isn't careful and eats too much solid food for a few days he gets a little symptomatic and he will go all liquid for a day and then be more careful.
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Mom to 4 incredible kids ~ 17, 15, 13, & 7
Including Incredible "E" ~ 15 year old Crohn's kid
Diagnosed at 11.
Enteral Nutrition
07-15-2015, 06:54 AM   #7
crohnsinct
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That's great Charleigh! Love to hear these success stories. When was his last scope and did it confirm the elusive mucosal healing?
07-15-2015, 06:56 AM   #8
Charleigh
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That's great Charleigh! Love to hear these success stories. When was his last scope and did it confirm the elusive mucosal healing?
Honestly, we haven't scoped. His inflammatory numbers have gone down a great deal, almost normal. We keep dismissing a scope because of finances but I know we need to have that done soon. I am only looking at growth, bathroom habits, lab numbers, color, energy, etc. I wish I could say that his scope looks great but I can't. Sorry.
07-15-2015, 07:06 AM   #9
crohnsinct
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I think most docs agree that 100% is best but that 90% or even 80% could work. Our doc is pretty adamant about 100% to induce remission. That could take only few weeks. Then a taper to 80%.

T did exclusive for 6 weeks. Then moved to 80% with the restrictive diet for two weeks. Then moved to 50/50 for 3 1/2 weeks and that is when inflammation crept back. By 20 weeks we were facing steroids or another course of EEN to get inflammation back under control.

I do feel we moved too quickly and also there were slip ups with the diet (not as clean as I or doc would have liked). So maybe that is what did it. But she was also on Methotrexate and I would think Methotrexate would have covered for the little slips so maybe T is just one of those kids it wouldn't work for.

Can you tell I can't stop beating myself up or give up the dream?

Our doc seems to be in close contact with the docs at CHOP and in Israel also so maybe we will revisit it sometime soon.

I do think it is difficult though. The counting calories and restrictive diet. Tough for an eleven year old. It was the counting and analyzing etc that got T in the end.

For years we have known that you can control many cases of type 2 diabetes with diet and exercise alone...look how many people still go on meds...and they are adults! Tough to ask a kid to alter their life like this...but you know I am going to keep trying....right after this course of steroids!
07-15-2015, 08:05 AM   #10
Tesscorm
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Unfortunately, for many (most?) people, permanent diet restrictions are very tough. If you start with a certain diet from a very young age (toddler), might be easier to maintain but, once older, very hard to start lifelong restrictions.

I knew in our case, it would have been impossible to put S on a clean diet, let alone a restrictive one. But, he was willing to do EEN and then supplemental EN...

Just remember, S was on supplemental EN for two years - virtually no symptoms, gaining lots of weight, lots of energy, anemia slowly improving, etc. but, throughout, MREs showed inflammation. We were lucky that there was no permanent damage.

If compliance is possible, I do think diet/EN is worth trying BUT I also think monitoring by MRE or scopes (or both) is necessary. And, unfortunately, it's usually not possible to be monitored as often as we would like.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
07-15-2015, 11:58 AM   #11
crohnsinct
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Charleigh: I totally understand. We are in quite the hole with two girls scoped this year, an mre, meds and lab tests not covered. It is a difficult position to be in but I think your GI will push the issue if it comes to a very necessary point.

I am always looking for that endoscopic evidence though because that is what our doc says is the desired endpoint and unfortunately my oldest on Remicade feels great, is growing, gaining like gang busters has normal labs yet inflammation found in biopsies at scope. Grrr. She is still good though and doc hasn't made any adjustments yet so you could be on to something.
07-15-2015, 06:47 PM   #12
Optimistic
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Charleigh: I totally understand. We are in quite the hole with two girls scoped this year, an mre, meds and lab tests not covered. It is a difficult position to be in but I think your GI will push the issue if it comes to a very necessary point.

I am always looking for that endoscopic evidence though because that is what our doc says is the desired endpoint and unfortunately my oldest on Remicade feels great, is growing, gaining like gang busters has normal labs yet inflammation found in biopsies at scope. Grrr. She is still good though and doc hasn't made any adjustments yet so you could be on to something.
I'm still trying to understand so much about this disease. How many people with crohns overall get to endoscopic healing and stay there? How many people who use the best drugs (remicade? Humira?) get there and how does that compare to say diets, EEN and no treatment - and how many patients are actually tested often enough to know? Do some patients know about microscopic inflammation bc they get lots of scopes and mres beyond labs etc, but others don't know they have it bc they don't get all the big tests often? How often does inflammation without symptoms lead to bigger issues? Heck how many people walking around who've never thought about an IBD bc they feel great, never had issues, actually would find something if they did a biopsy or Mre?

I hate crohns.
07-15-2015, 07:04 PM   #13
Maya142
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My daughter had scopes that showed mucosal healing after 8 months on Remicade and MTX. She still had mild inflammation in her terminal ileum so we can't say it was complete mucosal healing, but her colon which had previously had (small) ulcers all through it, looked "beautiful" according to her GI.

We have never done EEN but M has been on supplemental EN for two years, mostly for weight gain. She ended up doing 80% EN for 6 weeks and now 50% EN mostly for her gastroparesis but I'm guessing it helped her Crohn's. We will be doing a FC soon, so I guess we'll see!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
07-15-2015, 07:50 PM   #14
Mr chicken
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Mucosal healing here after remicade
Not after 9 weeks of een /6-mp ( 8 months )/2 months pred or 3 months of Mtx
75% of those with crohns end up needing surgery within 5 years of dx .
07-15-2015, 08:27 PM   #15
crohnsinct
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optimistic: Very good questions. I am actually watching a bunch of the videos from the Advancements in IBD conference and am hearing rumblings that some docs are actually feeling like maybe it is o.k. to settle for endoscopic remission as opposed to histologic remission. I don't imagine the pediatric GI's would buy into that though. Mostly because the disease is so aggressive with the kids and they have the added concern of growth etc.

I agree that there are probably a lot of people walking around with the disease who probably don't know they have it. My younger daughter could have been one of them but we were lucky to find it.

Overall though I would argue that many more people on some treatment plan will achieve endoscopic remission than those on no treatment at all. Also, it seems from what I have read and what our doc is telling us that also many more on meds achieve this remission than on diet and EEN alone. Not saying it isn't possible though. The disease is so individual. For some, biologics work great but others do fine with immunomodulators. Heck, my nephew failed biologics miserably but then used Methotrexate as monotherapy for a while and did great. Go figure!

As for staying there....I really don't think that happens often and again individual. Some get there and stay for a year or a few and then there are others who stay there for over ten years. It all depends. On what, who knows...we are all just doing the best we can eh?

Yeah, my daughter was assumed in a great remission and for all intents and purposes she really is doing great. I was surprised her doc waited three years to do the first follow up scope after dx. The scope did show that bit of inflammation, so not as great as we had hoped but still pretty darn good. Doc obviously isn't freaking so I think we are good for now. But I think you will find follow up scopes and imaging schedules to be all over the board as far as frequency.

Yeah...gotta love this disease!
07-17-2015, 09:58 PM   #16
Pilgrim
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THANK YOU for posting this video, CIC.

I too, had given up. Now I am not giving up.

H is in a flare right now. We were told to up her EN to 70%. I totally don't get that number because I've never heard less than 80%. So, I'm calling about that. Also we we're putting ourselves on IBD-AID for the rest of the calories. Totally failed there. Gave up. But I'm back on the wagon! Maybe we could do CDED for food and 80%.

Found it funny Dr. Baldassano's comment on the low-fibre diet! I understand it for strictures but it never made sense to me otherwise.

Back to my wine....
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
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