# Kids on Enteral Nutrition



## Mom2oneboy

There's been discussion in other posts regarding EN so I thought I would start a new thread dedicated to that subject.  Maybe get an update as to who has or is currently doing enteral nutrition so that anyone considering it for their child could ask questions, get more info, etc.

I'll start.....My 10yr old son started EN on 4/2 and did 4 weeks of Peptamen Jr. (via NG tube) and water only.  We are slowly adding food back in as he continues with the nightly formula feeding.

EN did not put my son in remission but it allowed him to maintain his weight when he was really struggling and unable to eat.  It has allowed some much needed bowel rest and eased his symptoms a lot.  It has given me HUGE peace of mind knowing that he is getting the nutrition he needs.

Now that he is starting to eat food again, he is gaining some weight which is exciting to him and us.  It's also what keeps him wanting to do the nightly feeds.  In the beginning he chose to keep the NG tube in all the time but now he takes it out in the morning and my husband puts in a new one at night.  Truly not a big deal at all.

I'm a big EN fan!  Would love to continue doing this with our son until he's married :lol2:.  I would encourage anyone to give it a go.  At first, it seems really overwhelming.  What helped me were the wonderful ladies on this forum who had experience with EN and were so willing to share and answer questions about it and then reading the book, Beat Crohn's!  Getting to Remission with Enteral Nutrition by Margaret Oppenheimer.

Hope this will be a helpful thread to parents considering EN for their little crohnnie!


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## momoftwinboys

Great idea. Mentioned to our gi and did not get enthusiastic response. Does the book mention benefits if do like Violet did with food?


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## Tesscorm

Great idea, Shelley 

I'm pretty sure everyone already here knows of Stephen's treatment...  but, just to recap for newer members.

Diagnosed May 2011 with Crohns in TI, small intestine and some patches in large bowel and duodenum.  Had lost approx. 20 pounds prior to diagnosis (147ish down to 127 lbs).  Treatment was 1 week of IV Flagyl and then commenced on EN, six weeks of formula only (with clear fluids allowed).  He learned to insert the tube very quickly and was completely comfortable doing it on his own within one week.  He ingested 3000 calories, 2000 ml (200-250 ml/hr) overnight.  He gained 6-10 lbs. during the six weeks.

After the six weeks, we gradually added back all foods (exceptions being seeds, nuts, fruit/veg skins) over 3 weeks.  His maintenance has continued to be EN - 1500 calories (1000 ml), 5 nights per week.  Within three months of beginning EN, he had gained 30 lbs. and has stabilized there.  His only medication, thus far, is one Nexium tablet on nights of formula.

He started EN on a Saturday, kept him home from school that week, by the next week he was back at school, participating in two phys.ed. classes per day (2.5 hours) and playing on two hockey teams, twice/week.  Looking back, I would say he was at almost full energy level within three weeks (although his muscle strength took a bit more time to rebuild).  I believe his activity level is what kept him from gaining more weight during the exclusive EN (topped at 3000 cal/day) - once he was able to adjust his calorie intake by including regular food, he quickly gained more weight.

I am not sure if he is completely in remission???  But he has virtually no symptoms; periodically has a few days when he feels 'off' - sometimes a fever, sometimes looser stools or constipation, sometimes tired, etc. but these have, so far disappeared with only minor intervention (ie prune juice, the odd tylenol) after a few days.  Ultrasound and MRE in Fall 2011 still showed some smaller patches of inflammation and his CRP/SED Rate seems to bounce up and down.  We just ran bloodwork and had an ultrasound and MRE last week - will update with the results.

I found a great NG insertion demo by a young teen girl.  She is very exact in her instructions but, in being so 'detailed' in her instructions, it seems to be a long process.  In reality, it takes Stephen seconds to insert the tube.

http://www.youtube.com/watch?v=YJIFOCbPTjo


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## Mom2oneboy

Momoftwins,

What you're referring to is called supplemental enteral nutrition...using enteral nutrition as a dietary supplement alongside regular food, rather than as a child's only food or beverage.  The book talks about this approach for maintaining remission not inducing remission.  It's also a very effective way to catch children up on any growth delays or weight loss.

Long story short, supplemental EN along with conventional crohn's medications can have huge benefits, as well.  Especially for children about to go through puberty.


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## Mom2oneboy

Tess, been meaning to tell you that when S started taking his tube out every day he said, "Well, I guess I'm just like Stephen the 17yr old now."  LOL  Stephen was talked about a lot during our first couple of weeks of EN!


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## Tesscorm

Still annoyed I was never able to get the videoclip to you!! :ymad:  But, I'm so glad he's not finding it difficult (even if dad's doing it!)  Just let S know all the 'cool dudes' are doing it...  stops their moms from nagging about what they're eating! :lol:

" _Would love to continue doing this with our son until he's married _:lol2:. "   Me too!!


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## crohnsinct

Great idea momto1!  

I am pretty sure most have heard our story but so it is all in one place and for those new here goes: 

O is my 12 year old daughter.  Hospitalized in January/February for we didn't know what.  Turns out severe Crohns.  She was malnourished, bleeding  and severely anemic.  Transfusions, TPN, steroids etc.  Colonoscopy and endoscopy revealed severe Crohns mostly in her Colon.  She was immediately put on Remicade.  Continued with Remicade and Prednisone and did great but every time we tried to wean off Prednisone symptoms started appearing.  Got somewhat healthier and gained 11 pounds but doc said we needed to add something. 

At the suggestion of the wise and wonderful moms here we asked about and  added exclusive EN 12 days ago.  She is deathly afraid of the NG tube so has chosen to drink 8-9 Boost and Ensure shakes daily.  Our doc feels strongly about no other food or drink (other than water) for the entire exclusive period which for us will be 6 weeks. He also enthusiastically supports the use of EN and is holding out lots of hope that this will be exactly what O needed to support the Remicade and get her into remission. He says EN is just as successful as steroids in reducing inflammation and is superior in mucosal healing and nutrition. 

So far we have seen reduced numbers of BM's and recently the blood stopped!  She has maintained her weight.  

But now a question for you all:  I didn't look at the bottles until recently but YIKES!  The first three ingredients are water, high fructose corn syrup and sugar!  Really?!  I am trying to stay calm about this as at least I am not pumping more chemicals into her body but these ingredients are totally contrary to what we are told as parents (of healthy kids I guess).  Are there any other options out there without the dreaded HFCS and so much sugar...no wonder why O isn't complaining about them too much!


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## Farmwife

This is great to hear more about EN and how it helps.  US doctors don't always push EN for one reason or another. I was thrilled when I went to the web site for the children's hospital Grace will be going to in June
 and the first things you read for the  GI dept. is how they use EN for one of many treatments of Crohn's and UC. That's a BIG relief! One less thing to fight for.:applause:
:soledance:Farmwife


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## Tesscorm

Crohnsinct,

Looked up Stephen's formula and I don't recognize ANYTHING! :lol:

This is the link to Stephen's Tolerex

http://www.nestle-nutrition.com/products/Product.aspx?ProductId=bc535404-a19e-4c6f-8558-90eaf6a5556f


But, I think they may be discontinuing the Tolerex because we were given two cans of Modulen to try and hospital said they were moving all their patients to Modulen.

Here is another link re some Nestle products:

http://www.nestlenutrition.co.uk/healthcare/gb/products/Pages/FAQs.aspx


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## crohnsinct

Tesscorm said:


> But, I think they may be discontinuing the Tolerex because we were given two cans of Modulen to try and hospital said they were moving all their patients to Modulen.


Or the hospital just struck a better deal for Modulen:ytongue:

Thanks for the link.  Olivia wouldn't be able to take the Tolerex because it contains phenylalanine and her body doesn't process that well.  

I did poke around at the others and am even more confused now.  What I did find though is that to order from the manufacturer (Boost or Ensure) is way more expensive than in the stores:ywow:

I did see Carnation Instant Breakfast there and actually had read  on some of the adult posts about some people using that.  I don't think it is what O's doc had in mind but boy did I LOVE that stuff as a kid.  I would be all over that! 

I will ask the nutritionist the next time I talk to her.


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## imaboveitall

Yo homies.
V's story ad nauseam for you guys but for any newbies:

Dx 2008 after severe life threatening weight loss x 7weeks.
Put on formula feeds via NG tuibe/pump 3000cals/day.Dramatic results, total symptom resolution in four weeks. Was allowed any and all food but ate little for the first 30 days. 
NO DRUGS. For three years.

Now almost four years later is still on nighttime feeds, at 1500cals/night.

Stats:
Before getting sick:
55in 78lbs
After 7 weeks of illness:
55in 59lbs
After four mos on feeds:
57.5in 99lbs
Current:
63.5in 135lbs

Those results cannot be argued with.


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## my little penguin

Our experience.
DS was placed on EN ( Peptamen Jr + water+pure sugar limited) for 9 weeks just prior to Thanksgiving 2011 at age 7. No other food.
He drank 1750 calories orally a day. His SED rate dropped from a 34 to an 8.

He had slow weight loss prior to dx. GI had him on Boost/Resource Breeze 500 -750 calories per day for 6 months prior to diag(March 2011 - Oct 2011). 500 calories of Boost he would slowly lose a pound a week. 750 calories he would gain a pound a week.
This effect became less pronounced as time went out and his symptoms got worse prior to his first scope.

He was 48 - 50 lbs for over 2 years prior to dx and EN.

6 months of EN (9weeks) + maintenance level (750 calories/day) = 56 lbs.

His disease is located in:
Stomach
duodenum
Terminal Illeum
Cecum
Possibly rectum

He was also taking:
50 mg 6-mp
and 5 week course of Pred 
during that time.

He did not achieve remission (symptom wise) but clinically no inflammation on the CT or blood.

He is currently maintaining the weight gain at 56 lbs.
He drinks 750 calories of Peptamen Jr with prebio a day.
He takes
12.5 mg 6-mp
50 mg allopurinol
1600 mg ASACOL
30 mg prevacid
10g miralax.
plus other meds for other issues.

WE may be moving to Remicade/humira soon but will still stick with the Peptamen jr. for life.


Boost/breeze is cheaper to order direct if you watch for sales, use the 10% discount they have for auto re-order and definitely if you get a script from your doc- most insurance will cover it through the durable medical equipment clause even if they don't cover formula.


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## LilyRose

Hi there,

I don't have any experience of EN yet but am really interested for the future. 

My son is not currently on any major treatment. He has had perianal symptoms which have been treated surgically etc. He now has small fissures. 

But I imagine in the future we will need to move to more major treatment if he gets intestinal symptoms. I am keen to use EN if needed rather than steroids. Although I am not convinced my son would comply (he LOVES food!!) 

I understand there is a big variation between countries in whether EN is used/promoted. Does anyone know why? All the info I've read is that EN is as effective as steroids for getting remission (but obviously much harder to do) but has few side effects (unlike steroids).

My son's hospital doesn't seem to promote it. But I guess I'll just have to push for it, if the time comes. It would be much more comfortable if the docs were posiitve about it.

Anyway, sorry - that was just a ramble of my thoughts!!!

Lily Rose


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## crohnsinct

Lilyrose - the way our  doc described it he said it is a compliance issue and with many of the patients he sees he just doesn't have the time to wait and see if possibly a child might comply.  He also said that when he brings it up 90% of the parents are appalled by it and of the 10% that decide to give it a try half of them abandon it because it is too hard.  I guess so many factors go into the decision.  I can't say that when my daughter was deathly ill in the hospital if it were presented to me I would jump on  it.  I of course wanted her fixed and fast.  However, I am glad I have it in my pocket now.  Our doc told me he tries to access the situation before bringing it up...if parents are nervous about meds and he jumps on it if a parent brings it up because that means they have done their research and if they are interested enough to bring it up then compliance may not be a huge an issue.


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## my little penguin

LilyRose- one other things it also depends on disease location.
The colon does not seem to be helped as much as the small bowel from total EN.
Cost is another factor in the US. SOme insurance companies will not cover it so you have a few thousand a month versus 5- 10 for pred.


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## crohnsinct

Ah yes the cost factor forgot about that one...still waiting to see if ours will be covered.  Funny they cover $6k every 6 weeks for Remicade:mad2:

And I posted this elsewhere but I should repeat it here. I had read about the disease location thing and since our daughter's disease is mainly the colon wondered if it was worth a shot.  He said yes as there are many studies showing now that location doesn't matter as much as previously thought....especially in ped patients and that the mucosal healing in the colon is fab so we should go for it. 

I'll let you know how it works out.


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## Mom2oneboy

Crohnsinct,

Our doctor said the same thing about the compliance issue and was surprised when we brought up the subject of EN (he had never mentioned it to us).  He was all for us trying it but you could tell that he didn't think we would last long at it.  We thought our son would be able to handle it because he's not big into food and has never been motivated by food.  We've always struggled with getting him to sit down and eat.  

I think it's one of those things where you have to know your child and weigh the potential benefits versus making them miserable.  It's important to have their buy in for it to work.  We discussed it with our son before hand and he was willing to try it.  If he would have resisted or started getting depressed and crying all the time for food, we would have stopped the EN immediately.

Shelley


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## crohnsinct

Momtoone: Yeah well O just got a sudden attack of diarrhea and didn't make it to bathroom.  I thought it might be the liquid diet and mylittlepenguin says that is what their doc said.  The d may be the breaking point for O but I so hope not.  Crossing my fingers and toes.  It would just stink if that were the thing that makes her stop!


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## Mom2oneboy

Crohnsinct, I hate to hear that.  How many days has she been on all liquid?  We had loose stools but not the urgency issue.  Actually now that I think about it, the first formula he was on didn't sit well with him and we had to switch to another one.  Hope the D goes away!!  Seems like it's always something doesn't it?


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## crohnsinct

13 days today.  She has made it through Bat Mitzvahs with make your own sundae bars and candy bars, Birthday parties etc.  She is being such a trooper.  Maybe I should just fyi the IBD nurse in case there is a formula that might sit better?  She is petrified of that darn tube though so if the better formulas are foul tasting and better by tube she may nix it.


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## Mom2oneboy

Gosh, I wouldn't think it's the formula if she's gone that many days without any diarrhea. Hmmm, maybe it's just a one-off deal....hopefully!

Bless her heart for making it through all that temptation.  These kids of ours amaze me!


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## Tesscorm

Crohnsinct,

Stephen also had very loose stools for the six weeks of exclusive EN.  We were told that this would happen - liquid in, liquid out is what the dietitien said (although I've heard of many other here who did not experience this???) but he didn't have urgency issues.  I remember asking him about this at the time, he told me he "went to the bathroom when he felt he needed, without 'delaying' but never felt like he wouldn't make it on time".  Perhaps Olivia tried to 'hold it' while she finished up whatever she was doing and didn't 'expect' the urgency???

I would think Shelley is right in that 13 days seems a long time before having a problem, however, I do remember Julie saying that Violet had to change formulas...

I wonder if it makes a difference in that Stephen (and Shelley's son) have their formula overnight...  the bowel isn't digesting or working much during the day???


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## crohnsinct

Tesscorm said:


> Perhaps Olivia tried to 'hold it' while she finished up whatever she was doing and didn't 'expect' the urgency???
> /QUOTE]
> 
> That's what I was thinking and hoping that now she knows that might happen she will be more on top of things.
> 
> Just stinks because today is another track meet.  I was so looking forward to seeing if she had more energy but now I will just be casing the joint for a porta potty and watching her face.
> 
> I sent the nurse and update email.  She said doc said not to change anything but to watch it and call if it keeps up.


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## Tesscorm

Yeah, it's disappointing when you think all is well and then :voodoo:  I hope the meet goes well and that the problems quickly disappear! :ghug:


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## Twiggy930

Great thread idea. 

My son is 10 years old and did a 6 week course of exclusive EN after prednisone failed to induce remission.  We used Modulen and he had it via an NG tube overnight.  My son found inserting the NG tube very easy and was able to learn how to do it in one 1hour session with the GI nurses, I was AMAZED!  He was allowed to consume clear fluids (apple juice, pop, broth, etc), hard clear candies and gummy bears (limited amounts).  At times he also consumed Boost during the day when he was hungry (couldn't drink the Modulen because he did not like the taste).  

We were hoping that EN would improve his energy levels but it did not.  It did however allow him to gain back all the weight he lost prior to diagnosis (about 17 lbs) and solved his anemia.  At the beginning he was still experiencing diarrhea but after about 3 or 4 weeks in he started to have solid BM and they have been solid ever since. :dance:

We would definitely go with EN over pred in the future!


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## DustyKat

I feel soooooo left out!  :lol: 

Matt only lasted a week on EN before the rot set in...:voodoo:...BUT so fab to read all the success stories! :mario2:

Dusty. :hippy:


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## crohnsinct

A very cautious Yay lest I upset the Crohns gods!  

O had her meet yesterday and did well.  Dropped 10-15 seconds...I attribute that to the EN weaving its magic. :ylol:

Also, back to 3-4 bathroom trips, less urgency and blood so maybe those two days were just one or should I say two offs.  

She is still leaking stool when passing gas but she is fine with that so it is onward and upward. 

Best part is our EN was covered by insurance and we received our 30 day supply of Boost and Ensure today!  

Maybe I should wait a day or so before emailing IBD nurse:lol2:


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## Twiggy930

crohnsinct said:


> She is still leaking stool when passing gas but she is fine with that so it is onward and upward.


This happens to my son still.  Somewhere on this forum someone has the quote, "Never trust a fart." in their signature.  My son thinks this is the funniest thing he has ever heard!


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## izzi'smom

We did EN via an indwelling ng for weight loss concerns concurrently with Remicade. While her intake was not restricted, she had fewer symptoms when not eating any other foods. Our ng tube came out accidentally after a month and we decided not to reinsert; although if we were to have weight troubles again I would not hesitate.


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## Mom2oneboy

Just got back from a doctor's appointment and S has gained 7lbs since April 20th.  Woop!  Woop!  This is after losing 4lbs with the stomach virus a couple of weeks ago.  He's up to 84lbs now   We will continue EN along with his regular eating.  S is so excited and very willing to continue.  He loves that you can't see his ribs anymore (and so do I).


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## Farmwife

Great news Mom. I'm sure he's feeling wonderful too.
It's funny, I would love to see my ribs again.:lol:

Farmwife


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## Mom2oneboy

LOL Farmwife!  This whole concept of trying to put on weight is SO foreign to me!


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## DustyKat

Woohoo for S! What a fab update! 

Long may it continue...anda:anda:anda: 

:mademyday:
Dusty. xxx


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## crohnsinct

YAY!  We needed some good news around here! Keeps us all keeping on!


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## my little penguin

:dance: LOVE it when they gain weight.

Glad its working for you


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## Twiggy930

Fantastic news!  :banana:


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## Tesscorm

Just thought I'd bump this thread up as there are a few new parents who may not have been informed about Enteral Nutrition and it's safety, nutritional benefits, success at inducing remission, etc.


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## Jmrogers4

I've been reading through all the EN threads as we are trying to figure out how to put weight on J.  He has grown 1 1/2 inch in the last year but only put on a pound.  He is now 76 pounds and 49/5". Not what you want to hear for a kid that will be 13 next month.  He is currently on Imuran along with allipurinol to make it more potent as we had a hard time getting to theraputic levels with the Imuran and he was taking a higher dosage than his father who also has Crohn's.  Blood test came back looking great so we can't figure out why he is not gaining weight, nor growing much taller.  We are doing a calprotectin test this week to see if there is inflammation that the blood test is not picking up.  He has been feeling pretty good except for a little bout about 2 weeks ago which I think was caused by too much stress and not enough sleep.  He was playing baseball just about everynight, had several choir concerts and studying for end of year tests, he really stresses about his grades - he is a straight A student in accelerated classes.  Then again maybe he just had a virus, sometimes it is so hard to tell.
His GI wants to switch him to LDN next month as he doesn't like to keep teenage boys on Imuran.  I've been reading some good things about LDN and I hope it works for him.
GI gave us a huge bag of different ensure type drinks to see if we could find one or even a couple he will drink, he is such a picky eater.  We are hopeful that we can jump start his growth and weight with some increase in calories, but if that doesn't work I'm glad I'm able to read about NG tubes and other ideas.  I'm new to the forum and wish I would have found this earlier.

Jacqui
Mom to Crohnie dx 1/2010
currently: Imuran and Allipurinol
Wife to Crohnie dx 3/1993
currently: Imuran


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## Tesscorm

Hi Jacqui,

Glad to hear your son's feeling good!  And so great to hear that he's feeling well enough to participate in his activities and school!  Woohoo!

As you probably read in this thread, my son has done well on EN (not completely in remission but feeling well).  It certainly helped him gain back all the weight he'd lost plus some and has kept his weight stable.  And, as he is also a picky eater, it alleviates my worries that he isn't getting the necessary nutrition.  My son uses an NG tube at night and, due to both his pickiness and convenience, I don't think my son would switch from the tube to the shakes.  Weeks ago, we were given some Modulen for him to try and, as yet, he has had no interest - is fine with the tube and overnight formula.  Inserting the tube was truly not difficult for my son to learn but, he is older and I know some have a harder time with it...  But, worth a try!  

I also think it's fantastic that your GI is suggesting LDN!!  Wow, that's the first time I've heard of a GI making the suggestion!  It is what I would like to have my son try before he's moved onto medications.

Good luck!  If you have any questions re the tube, etc., just let us know...  There are a number of kids here using the tube.  And, please keep us posted on your son's experience with LDN!

:ghug:


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## Mom2oneboy

Welcome Jacqui,

I think EN is a wonderful way to put some good weight on him!  My son takes his via NG tube at night but I'm also looking into getting the Resource Breeze Fruit Beverage.  It's supposed to be more fruity tasting and less milk shakey and 8oz is 250 calories.  I can't find it in any local store here but nestlenutritionstore.com has it and you can try a six pack for $12.99 versus buying a case of 27.  If he likes the taste of it, I'll add that in addition to his nightly feeds.  Seems my new mission in life is to see how many calories I can pump into my son each day...LOL.  The other day he said, "Mom, you're not going to make me fat are you?"  I told him no I just want to make him healthy!

Good luck with whatever you decide.  There's no right or wrong thing to do.  You just have to do what will work for you and your son.


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## Jmrogers4

I will definitely update you on the LDN after reading about it on here I'm kinda excited to try it but at the same time worried about taking him off what seems to have been working for him so far.  I also love that his doctor is open and reading about new therapies.  We are really lucky since there is only one pediatric GI office in town with 3 doctors in it.
He did try the Boost Resource Breeze in both orange and wild berry so far.  Orange was not a winner as he said it had a nasty after taste which his brother agreed as he took a sip as well.  However the wild berry was pretty tasty we all tried a sip and it really tasted like a Capri sun juice box so I ordered a pack of it.  I'm hoping we can find another flavor that he likes so he doesn't get sick of it and not drink it.  He is trying the peach flavor today.
He is really worried about having an NG tube.  He goes to Camp Oasis and I know one of the boys in his cabin last summer had an NG tube so maybe he can talk to him first hand this year and get some first hand info.  I love the friends and support he has made a camp.
Thank you for the support and response.


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## Mom2oneboy

Oh, that's good to know about the Breeze drinks.  I had planned to order the wild berry as he's not a huge orange or peach lover.  Think I'll go do that now while I'm thinking about it.  Thanks!


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## crohnsinct

Posted on O's thread but just so we have it here in EN thread: 

Got O's blood results at the 5 week mark with EN and the nurse reports that all her basic bloods have improved!  Doc didn't call me right after results came in requesting to see us again and that is a first since diagnosis 4 months ago.  

She still hasn't gained any weight since starting and energy hasn't gotten to pre crohns level but we are avoiding adding another drug to Remicade and that was our goal. 

After 4 months of fighting I finally feel like I can rest. 

Oh and for those of you considering EN...O's Crohns is in her entire colon, some stomach and rectum and she has used Prednisone prior....so please don't let colonic involvement or prior prednisone use discourage you! 

We are waiting to hear from doc on how to proceed but I plan to have her continue 2 shakes a day even after transition.  

Thanks to everyone for your encouragement and advise!


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## Farmwife

See I'm even happy for you on this tread!


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## Clash

Yay so happy to hear about O's improved bloodwork!! Time for the happy dance in CT!!!


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## Mom2oneboy

bump


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## ChickensRule!!

Hi everyone!! I Currently am the ensure diet and have been for 4 weeks! I am petrified of the tube so I chug back 8 a day. It is REALLY hard  you get horrible food cravings and it is hard not to just quit somedays. Only one week left yay! It does work really well though and I think it put me in remission, still really new to this  I am also taking prednisone with the en, because my case was severe. Good luck!


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## Mom2oneboy

ChickensRule!! said:


> Hi everyone!! I Currently am the ensure diet and have been for 4 weeks! I am petrified of the tube so I chug back 8 a day. It is REALLY hard  you get horrible food cravings and it is hard not to just quit somedays. Only one week left yay! It does work really well though and I think it put me in remission, still really new to this  I am also taking prednisone with the en, because my case was severe. Good luck!


Congrats on making it this far!!!!  I admire all who do this...including my son.  It cannot be easy but hopefully you have gotten some good results from it that make it worth while.


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## ChickensRule!!

Thank you! Congrats to your son to!


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## crohnsinct

Holla chickensrule!  Just like my little girl!  She is petrified of the tube and agreed to choke down whatever and however much the doc wanted!  You go!  I can't imagine going 6 hours without food let alone 6 weeks.  I hope you are seeing the same success that O is seeing and that it is all worth it for you!


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## secondday

My son was diagnosed with CD in March.  He's 11yo, has stunted growth and was suffering from stomach pain, fatigue & constipation.  We live in Italy and his doctor put him right on Modulem with NEC as a suppliment to help the taste.  My son was on the liquid diet for 8 weeks and began adding solid food about a month ago.  He still has inflammation but it was reduced by half.  He no longer has any stomach pain or fatigue and his appetite is back.  I've started him on SCD in hopes of allowing him to heal without strong medication.  He now eats a solid diet of select foods, drinks a ltr of Modulem a day, and takes an anti-inflammatory with each meal.  But he's not gained any weight.  (I thought he had gained a couple pds but yesterday morning he weighted himself and his weight was back where he started.)  His doctor wants to put him on Remicade.  It seems like such a dramatic response.  We head back to the states in a couple months so I'm thinking perhaps we'll wait until we move to take the next step.  But still I worry.  My son's an identical twin and his brother is 3 inches taller and 15 pds heavier.


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## momoftwinboys

:welcome::welcome:
My 10 yr old son was dx last October and he is an identical twin too.  His brother is 20 lbs heavier and a little taller.  I do think he has closed the gap some on height.  It is difficult seeing the difference every day, a constant reminder.   We do not have experience with EN or remicade.  I think if you post your story in the parents of kids with ibd you will get a bunch of info of parents with more experience.


----------



## Tesscorm

Hi secondday,

As momoftwinboys mentioned, you will likely see many more responses if you post a separate thread in the Parents' forum 

I don't have experience with Remicade but my son has done EN (initially, formula only and now, as maintenance, with food).  However, he did gain a considerable amount of weight.  He had lost approx. 25 lbs prior to diagnosis and, within 3 months of starting EN, had gained back 30 lbs.!  While on the formula only, his weight gain was small, 10+ lbs., the bulk of the gain was when we reintroduced foods (no special diet).  His GI and dietitien believed that, while on the formula only, he had a limited number of calories (3000 per day) but he was very active (2+ hrs per day of phys.ed. plus two hockey teams) and this combination prohibited him from gaining more weight.  Once he added back food, he was able to instinctively adjust his caloric intake (and then gained much more).  Is your son very active, perhaps, his activity is keeping him from gaining more weight??  Not suggesting to limit the activity!   But, perhaps more calorie dense foods would help (I'm only barely familiar with the SCD diet).

I would also be a little concerned about beginning the Remicade now...  side effects are always a concern for all of us , however, my concern would be more re your upcoming move.  I know little re Remicade, so please look for more info :blush:, but my understanding is that very often, once you discontinue Remicade you build up antibodies and can't restart.  I would be worried that there might be a break in his treatment during your move and time to resettle and then you may have a problem restarting the remicade???  Just something to consider and discuss with your GI as delaying any treatment may not be a good idea either 

Good luck! :ghug:


----------



## crohnsinct

Hi secondday, my daughter (12) was diagnosed 2/1/12 and was put right away onto Remicade and prednisone.  She gained 10 pounds right away but I think that was due to prednisone.  When we discontinued prednisone symptoms and inflammation returned and she stopped gaining weight (actually lost 2 pounds).  Doc suspects now that we are introducing food weight will come on.  

Just a thought, if there is inflammation perhaps he isn't absorbing his nutrition to the best of his ability?

I would be interested in waiting to start Remi until in the states and settled with a new doc.  Perhaps a course of prednisone to get inflammation under control until you get here (but yes I know none of us likes steroids and maybe a couple of months is too long for steroids? I am not very well versed on steroid use).  

Tess corm is correct in what she says about starting and stopping Remi so you would probably have to time everything very well. 

Tough decisions...Good Luck and keep us posted!


----------



## crohns1996

has anyone found a way to supress food cravings whilst on enteral nutrition, if you have please help, im 15 and have at least a month left to go and i'm finding it really hard not being able to eat, thanks


----------



## Tesscorm

Hi there,

My son did the six weeks of formula only last year, he was 16.  Are you allowed clear fluids?  He was allowed broth, clear juice, etc...  he would have broth when he really wanted 'food', wasn't great but it was, at least, something. :blush:

He had the formula overnight through NG tube, so other than the broth, he had no shakes or anything during the day...  so, as well as the cravings, he often found he was 'hungry' by dinner so he tried to distract himself and make plans for the evening, even if it was just 'meeting' up with friends online.

If you're having shakes during the day, I'm pretty sure you can freeze them - I know the taste is the same but, at least, it'll 'feel' like you're eating.  

I wish I had better suggestions for you!  Maybe someone else can come along and suggest something!

There's also a teen forum here - I know lots of teens are on EN, you might be able to get suggestions from members on that subforum too!

Good luck!!!!!!!!!  Doesn't help much while in the middle of a craving but it really is a great treatment, helped my son tons and has no side effects! :ghug:


----------



## crohns1996

i'm only allowed water and no added sugar diluted juice, i don't have any shakes because the taste of them makes me feel really ill how do i access the teen subforum as im new here haha, thanks for your help anyway!


----------



## my little penguin

Do NOT freeze the shakes- unless they are "extras" for the day.
this will destroy any nutritional  value they have.

Chewing ice chips helps- We were allowed plain sugar so we would sprinkle some. BUt usually he just chewed the ice.


----------



## crohns1996

thanks for the advice, unfortunately i have quite sensitive teeth and even ice poles sometimes hurt them, but i'll try anyway, thankyou


----------



## Tesscorm

Thanks for jumping in MLP!!  I wasn't aware that freezing would damage the shakes! 

crohns1996 - I think if you try to access the teen forum (I believe it's under the Support forum), you'll be prompted with instructions to gain access.  Hopefully, David or Dusty can jump in with instructions.


----------



## crohns1996

i've had a look but i can't seem to find it, do you mind giving me a link please?, thanks


----------



## DustyKat

Hey crohns1996,

I'm pretty sure the forum is no longer password protected so you should be able to access it...

http://www.crohnsforum.com/forumdisplay.php?f=67

Dusty.


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## crohns1996

thankyou dusty!


----------



## Mom2oneboy

Just want to say again how much I *love *EN!  We weighed S today and he is now 90lbs!!  When we started on 4/2 he weighed 74lbs.  Most of the weight has come on in the last 8 weeks.  He looks and feels SO much better.


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## DustyKat

Need I say more! 

Dusty. xxx


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## Tesscorm

:medal1:Woohooooo!!!!!!!!!!!!:medal1:  Way to go S!!!:thumright:


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## crohnsinct

My 12 year old daughter was drinking shakes and water only.  The doc approved one piece of gum a day.  Helped with the need to chew and also gave her some taste. 

Hang in there!  You are incredibly brave to be doing this and I admire all you kids.  I hope you come back at the end and tell us you got great  results!


----------



## crohnsinct

Momtoone: WOOHOO!  Way to go S!  So happy for you guys!


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## Twiggy930

Bump


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## kiny

I am trying liquid food again just because I think it might help me. I had real EN when I got crohn 10 years ago as a little kid (parental nutrition English name I think), through my neck intravenous in the hospital (completely bypassing the intestine). For reference I was about 30kg, (that is 66 pounds) , as a young adult (16 years old). Their first priority was not crohn, but the fact I was so skinny (not anymore atm).

So some time ago I wasn't a fan of EN, even though it helped me, because I couldn't understand the mechanics behind it.

But since talking to people I have seen this used in Japan a lot, it's incredibly common and the first therpay is EN, for adults too.

So since then I have also been reading a lot of papers and changed my school to reflect my disease so I understand it better.

And now I can see why EN could work, there are a few reasons they believe it can work. One is bioavailability, which can help nutritional status. Another is antigen response, food is full of bacteria, EN tends to be low on bacteria. Another is the microparticles, food often has microparticles, they don't digest, and you get inflammation from the undigested particles, EN is low on microparticles. 

(I think should be distinction between normal EN and drinks though, mostly of the studies use EN from nutricia or nestlé or whatever brand they use in the US, not drinks like ensure or fortimel or something, which is something very different I feel, they are very different from normal EN, those drinks have never helped me much, only the preparations like 028 or special EN from baxter or other brand, EN differs greatly from brand to brand, some are just water and cheap casein and sugar)

Well, I slightly changed my mind on EN, I think it's helpful, if real EN is used but cheap drinks have never helped me, that is all really.


----------



## kiny

I looked up what peptamen junior is and it is hydrolysed whey, it is bioavailable protein, where they broke some of the peptide bonds between amino acids, protein are long bonds of amino acids, it is the most bioavailable protein you can eat.

There is a negative to hydrolysed whey too though, it often has milk fat (even though it is much lower than in whey concentrate or casein), it is really really expensive to get all the lactose out of hydrolised whey and to remove all the fat is even more expensive. Even though peptamen junior says "100% hydrolised whey", I do not believe it, because the best they can get to is something like 98%, and there will be 2% milk fat and some carbohydrates which is the lactose. They call things with less than 1% lactose, lactose free, but if you actually check the label you will see 1% carbohydrates, it's not added sugar, it's lactose.

Other option is albumin what I use now, it's egg protein, it has longer amino chains but it is 0% lactose, but it is lower bioavailable, it is still better than casein though. Albumin is somewhere between casein and whey in bioavailability (uptake in the body).

Casein protein and soy is the cheapest to make, that is what ensure uses, that is why if you look on the ingredient list of ensure you will find "soy" and "casein" and if you check the label you will find fat and carbs. It's cause they use cheap protein, like casein and soy, instead of whey isolate or albumin. Most of those drinks are cheaper than real EN because they are cheaper to make, the most expensive part of EN is not the sugar they put in them or the vitamins, it's the type of protein that is in it. The way the brand seperates the protein from a food source and the type of food source used determines the cost of EN.

I think if you use something like ensure you might as well make it yourself with better products, a whey isolate (ion exchanged) with low lactose will have better bioavailability than ensure can have, and it will be lower in lactose or use albumin, also both will be cheaper than the ensure or fortimel drink and healthier.


----------



## my little penguin

To be a complete nutrition source such as EN or What you used as a child TPN
There needs to be fat (oil) , carbs, and protein.
Even TPN has this without it your body would not survive.
E028 is amino acid based so it is a true elemental formula .
Peptamen is milk peptide based so it is considered semi elemental.
Ensure and boost are whole protein based so polymeric formula.
Each step amino, peptide and whole requires more of the intestine to be working.
There are many studies which found there was no clinical difference in remission rate between elemental and polymeric formulas in kids with crohns .
However with crohns everyone is different.
Some gain and tolerate ensure - not my kid.
Some can handle Peptamen - my kid .
Some need the elemental - your case.
As our Gi said whatever they are willing to drink and still works that is what you go with.
Ibd is not a one size fits all .

Thanks for the info .


----------



## Tesscorm

Kiny,

I am not very knowledgeable at all when it comes to the different types of formulas but, if I'm understanding MLP's descriptions correctly, I _think _my son's is amino acid based.  If it's of any interest to you, his formula is called Tolerex (Nestle).  I don't think I've ever read of anyone else on this particular formula here (don't know why??) but, perhaps, it's something that might work for you.  The description on the Nestle site says it can be used orally - NOT SO!  :lol:  It smells absolutely horrid and we were told it had to be ingested by NG tube (because of its taste).

From the nestle site (http://www.nestle-nutrition.com/pro...ductId=bc535404-a19e-4c6f-8558-90eaf6a5556f):

Tolerex Elemental Powder
100% Free Amino Acids, Very Low-Fat Formula

100% free amino acids with only 2% of calories from fat 

Requires minimal digestive functionality for assimilation while providing the benefits associated with continued use of the GI tract


Thanks both Kiny and MLP for your info!


----------



## kiny

yes, need some kind of fat for energy storage and few other functions

but casein fat from ensure is specific fat, it is milk fat, it is butterfat, saturated fat, milk fat is associated with crohn in a recent study from Nature because it causes dysbiosis in IL10 KO mice , specific dysbiosis that promotes immune response, do the same with polyunsaturated fat like safflower oil and it doesn't happenhttp://www.nature.com/nature/journal/vaop/ncurrent/full/nature11225.html
_
"Milk fats increase the amount of taurine-conjugated bile acids that promote growth and metabolic activity of sulphate-reducing, bile-acid-tolerant bacterial species, such as B. wadsworthia, which in turn stimulate pathogenic immune responses in genetically susceptible hosts."_

protein extracted from casein done on the cheap (like ensure does) will leave considerable amounts of milk fat, not present in high amounts in whey isolates, and not at all present in albumin

agree that you need some kind of fat, but type of fat does matter, ensure is not the same as many EN, it is cheap protein to lower costs, and that's why they use casein

extraction of amino-acids by breaking peptide bonds depends on the protein

only complete protein is animal protein (why I don't agree with vegetarians), extraction of protein from soy like ensure does does not lead a balanced amino-acid profile

another downside to soy and casein use is that the protein becomes denatured if cheap filter processes are used, if they use low cost protein, I wouldn't doubt the filtering process is on the cheap too (whey isolate ion exchange causes denaturing too, but it makes up for it with very high bioavailability, which casein doesn't have)


----------



## kiny

Tesscorm said:


> Kiny,
> 
> I am not very knowledgeable at all when it comes to the different types of formulas but, if I'm understanding MLP's descriptions correctly, I _think _my son's is amino acid based.  If it's of any interest to you, his formula is called Tolerex (Nestle).  I don't think I've ever read of anyone else on this particular formula here (don't know why??) but, perhaps, it's something that might work for you.  The description on the Nestle site says it can be used orally - NOT SO!  :lol:  It smells absolutely horrid and we were told it had to be ingested by NG tube (because of its taste).
> 
> From the nestle site (http://www.nestle-nutrition.com/pro...ductId=bc535404-a19e-4c6f-8558-90eaf6a5556f):
> 
> Tolerex Elemental Powder
> 100% Free Amino Acids, Very Low-Fat Formula
> 
> 100% free amino acids with only 2% of calories from fat
> 
> Requires minimal digestive functionality for assimilation while providing the benefits associated with continued use of the GI tract
> 
> 
> Thanks both Kiny and MLP for your info!


thank you, I like nestlé and nutricia a lot, did not know of that one

think the smell is from hydrolised whey, it smells horrible in all forms unless you add artificial sweeteners, the more it smells the better the bioavailability is

every protein is a bunch of amino acids on a chain, connected through peptide bonds

what hydrolised whey does is take whey from cheese, they filter it by breaking peptide bonds and you get whey that is very bioavailable since they broke the peptide bonds for you, which means the child has to use less enzymes. OP EN is hydrolised whey too from nestlé, I think this is the same whey formula.

(only thing I don't like is the fats, because it is milk fat, but it (hydrolised) makes up for it by being super bioavailable, casein does not make up for it at all, it has the milk fat and it has super low bioavailability compared to whey, that is why it's so cheap compared to expensive EN from nestlé and nutricia)


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## my little penguin

http://www.naspghan.org/user-assets...se_of_Enteral_Nutrition_for_the_Control_of.29[1].pdf

Study on different EN in children stating elemental vs polymeric did not make a significant difference in children.

This is the key children tend to do better overall on EN then adults in general terms.
The paper also gives guidelines etc....
A good read


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## crohnsinct

Thanks for the link MLP that is actually the study I read before speaking with our doc about EN. 

Now what I will say is this...our doc (Boston Childrens born and raised) put O on EN and said, "Boost and Ensure".  He never mentioned the other types of formula, and it worked for O who had severe colonic involvement and did 6 weeks exclusive Boost and Ensure.  

Now the way I figure it choices of EN formula are probably as individual as everything else with this disease.  

I imagine our doc goes Boost and Ensure first because in his experience it is probably the easiest for kids to comply with because of the taste.  If for some reason it isn't helping a child maybe he works he way down the chain to the most bioavailable.  Vice Versa,  I imagine some docs go straight to the most bioavailable forms and when the kids refuse to drink it or use a tube maybe work their way to the more tolerable formulas. 

Sound familiar (step up or step down with drugs).  

The way I see it whatever way you can do EN it is well worth it because although we used Boost and Ensure it helped us avoid adding other drugs (she was on Remicade), helped her reverse her weight loss, and got her well on the road to remission!  

I feel the same way about all treatments.  Whatever works to give you your child back go for it!!!!


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## David

Regarding trace minerals while on enteral nutrition, this is a good paper.

In short, in addition to all the usual vitamins, get your kids zinc and selenium levels tested while on enteral nutrition.  Especially since people with Crohn's disease are commonly deficient in them anyway.

*Do not* blindly supplement them as they can lead to toxicity.


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## Tesscorm

Haven't read the paper yet (so maybe the answer is there???) but do you mean EN when used exclusively only or even when it's just a supplement?

Is there an overall 'vitamin' panel blood test? :lol:  I sometimes feel like I have an neverending list of things I want the doctor to test :lol:


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## David

I'm not 100% sure if it was total or supplemental as I couldn't find the article specifically say which though the caloric intake makes me think supplemental.


> All patients had low disease activities [Crohn’s disease activity index (CDAI)<150 [13]], and these patients were regarded as inactive phase. All patients were placed on an enteral nutrition regimen with Elental® (Ajinomoto pharmaceutical. Ltd., Tokyo, Japan). The daily caloric intake from the enteral nutrition was 1,093 ± 239 (mean ± SD) kcal for over 1 year.


Obviously different formulations are going to provide different micronutrients.  So some may provide adequate zinc and selenium.  However, both are nutrients that people with Crohn's disease are commonly deficient in.  I think the big takeaway is that while enteral nutrition is a fantastic treatment option, it's not always going to provide every nutrient everyone needs in perfect amounts so nutrient status needs to be monitored.


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## Tesscorm

Thanks David.  You're absolutely right, using EN as a supplement does give a bit of a false sense of security that between diet and EN, ALL nutrients are covered.  After another post you made, I realized Stephen was only getting approx. 10% of his daily choline requirement from his EN formula so have made a more conscious effort to get more in his diet.


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## awmom

I am not sure if it has been previously brought up, but we have been using a supplement called Absorb Plus.  My son did a liquid diet using Boost a year ago, and now he WILL NOT drink it!!!  I am trying to boost his calories with something easy to digest and he is willing to drink this product.  We add coconut oil instead of the suggested flax because he says it tastes a bit better. It is not elemental, but I think it might compare to peptamen. I am not sure the formulation is good for little ones, and the amount of protein seems high to me, but for a supplemental drink it it seem to be the only one my son is willing to drink.  I like the fact that it has no carageenan (?) or other additives.


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## Robs a

My son started EN yesterday.  He finds both the taste and consistency vile but has decided to persevere!  We have added a vanilla pod to the powder to give it some flavor and he has reduced the amount of water to make it thicker which he prefers.  He complained yesterday of feeling starving!  Is this normal?  He is taking 250ml 6 times a day of Modulan exclusively.  I was so relieved when he got home from school with empty shake containers.  Seems like a number of his friends have various protein or health shakes at school so he felt absolutely fine to bring his out.  He has only just been diagnosed and besides his 2 best friends, he has not yet said anything to the rest.


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## Twiggy930

So glad to hear that he is managing to drink the shakes.  My son did 6 weeks of EN with Modulen but he used a NG tube.  If he is feeling hungry I would give him more shakes.  I was told that there is no upper limit on the number of shakes that can be consumed.  My son was consuming 3000 calories per day but that was to gain some weight back that had been lost.  If you are mixing the Modulen at regular strength then 250ml x 6 would be 1500 calories.  Depending on the nutritional needs of your child that might not be enough.  

Keep in mind that if he starts to have trouble drinking the shakes that the NG tube might not be as bad as you think it might be.  My son was able to insert the tube in about 12 seconds and he found it to be no big deal.  He would definitely prefer the tube over having to drink the shakes.

Good luck with it all and keep us posted on how it goes!


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## Sascot

Hi Robs a, my son did the 8 weeks on Modulen but also had to do the NG tube (he had to go to high school with the tube attached to his cheek).  It definately works really well - allowed him a few months with no symptoms.  Good luck with everything.


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## Robs a

I mentioned that my son prefers the shake to be quite thick so instead of 210ml of water he has reduced it to approx 125 ml.  This obviously reduced the amount he needs to drink at a time.  I am concerned that he may not be getting enough and am encouraging him to drink lots of water over and above the shake.  The vanilla pod that I added into the powder has certainly improved the taste for him.  I hope he can keep this up!


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## my little penguin

You really need to call the company on using less water(Nestlé I believe)
There is a reason for the water by making it higher conc. it could cause more issues you wouldn't want. There is a product called "thick it" which you may ask your Gi if you could use and add to it. You still use the same amount if water.
I agree the calorie count us way too low .
DS drank 1750 in calories at age 8.
Good luck


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## Tesscorm

My son also used the NG tube at night.  He was taking in 3000 calories per day (2000 ml).

Agree with my little penguin re concentrating the formula.  In my son's case, we were told to concentrate the formula, however, when we have discussed using modulen while on vacation, our dietitien specifically told us not to concentrate the modulen.

If you have any choices formula brand to use, Peptamen 1.5 (1.5 cal per ml) is a concentrated formula compared to Peptamin (1 cal per ml) - allowing the same amount of calories with less volume.  (However, please get your GI's approval before changing brands).


----------



## kiny

I've started to mix my EN with juice sometimes, fruit juice, because I got sick of the taste lately. I also mix it with glutamine sometimes if I get sick of the fruit juice, since glutamine has a particular taste and I dump some glutamine in it and drink it like that. Only time I used a tube was in the hospital but it was intravenous through an artery, I just drink my EN now.


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## kiny

Calorie count for EN isn't the same as regular food, if you take EN you tend to have less stool, because the stuff in EN is sugar + protein + micronutrients. The sugar gets take up for the most part, and the protein from good EN is usually hydrolised whey isolate, so if you give that to someone they will be able to digest almost all of it, because the protein has been preabsorbed (less enzymes needed to break peptide bonds) which results in more calories.

3000 calories in EN is higher than 3000 calories in normal food, often much higher depending on the amount of enzymes someone produces.

If you go on EN stool tends to be almost oderless at times, because everything is digested and you have to produce few enzymes to break it down because it's hydrolised whey protein. If you drink lots of milk and drink lots of casein protein (like those drinks that aren't EN), your stool will not smell nice, because the enzymes couldn't digest it all, and that's why stool smells.


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## imaboveitall

Kiny, what intelligent posts, thank you.

Formula was a lifesaver, literally, for Violet. She still uses it four years post-dx.
Her growth and development have not suffered despite constant unresolved disease and the formula is certainly why.
Malabsorption is really inevitable with this disease. The formula's nutritional availability cannot be matched via food.


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## kiny

my little penguin said:


> http://www.naspghan.org/user-assets...se_of_Enteral_Nutrition_for_the_Control_of.29[1].pdf
> 
> Study on different EN in children stating elemental vs polymeric did not make a significant difference in children.
> 
> This is the key children tend to do better overall on EN then adults in general terms.
> The paper also gives guidelines etc....
> A good read


it's a bunch of quack, unlike carbs where every carb is eventually glucose, those drinks with casein are not the same as hydrolised whey used in real EN. Nutricia and Nestlé go out of their way to create good products, I live a few miles from their factory in Europe, don't compare them to garbage like Ensure sponsored by big pharma. 

There is a reason real EN costs so much, it's because enzyme breakdown without denaturing the protein is a very very expensive procedure, a few years ago this wasn't even possible, just in labs. They took years to figure out how to properly break down peptide bonds that aren't denatured and it took many more years to learn how to combine it with microfiltration and ionisation.

The stuff in some EN is the best protein on Earth, breaking peptide bonds without denaturing and removing lactose and milk fat from the whey is super difficult to do, that's what some companies do with EN, what Ensure does is take a bunch of leftover casein without filtering, leaving in the milk fat (that's why it has saturate fat %), leaving in half of the lactose, throws a bunch of sugar on it, and you're saying it's the same thing as hydrolised whey protein that is filtered many times, not it's not.

Will be a cold day in hell before anyone in a hospital here gives Ensure to someone. It is garbage, I am not the first one who said it either.


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## Robs a

My son is on his 4th day of Modulan which he is thankfully managing to drink AND tolerate! He has a 6 week target which is tough but we are encouraging him to tackle it day by day.  We have added an extra shake as he feels quite hungry mid afternoon. A question though, does anyone know whether the shakes need to be taken with a consistent gap in between? Often when his day is busy, sport or friends, my son runs out of time to have enough shakes.  Can he double up on quantity in such a case?


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## my little penguin

Just like food you can drink as much as you like together or separate .
Just be aware all liquid tends to swish around in the stomach and sometimes cause nausea if too much is input at the same time.
Just so he is getting it in.
DS took it one day at a time as well and had to drink een for 9 weeks original plan was 7 weeks so be prepared if they length it.


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## imaboveitall

Robs A, do read my older posts on Violet's history with using enteral nutrition.
The formula does not have to be taken at any specific intervals unless the pt has motility issues and cannot tolerate over a certain amount at a time (this was the case with Violet; she had such extreme gastric dysmotility she needed a feeding pump to deliver small amts at a time).
Unlike most I've read of, she was allowed ANY and ALL foods from the jump.
Her doc(s) said that food itself WILL NOT impede the benefit of the formula at all "in most (key word) cases".
She got 3000+ calories per 24hrs for the first 30 days, and ate right along though her appetite was almost nil at that point.


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## Twiggy930

The long duration of EN is certainly daunting.  My son actually enjoyed crossing off the days he had done in bright red marker on a calendar.  We also promised a reward at the end of the EN.  My son's reward was a large fish tank for his room and he spent all sorts of time researching the fish he was going to put in it.  It worked quite well except that I now have a tank full of piranhas in my house.


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## CarolinAlaska

I'm wondering who is still doing EEN or PEN now, how all of you did with completion, who needed maintenance meds after, what was prescribed, etc.  My dd will start EEN next week.  She will be doing Ensure 16 hours/day at a rate of 160 ml/hr, but start at half that.  My GI still hasn't answered about maintenance meds for after.  I do like the idea of periodic EN for maintenance, but I'm not finding good protocols for that, or for maintenance meds following EEN, for that matter...


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## my little penguin

http://www.naspghan.org/user-assets...nteral_Nutrition_for_the_Control_of.29[1].pdf


----------



## my little penguin

http://www.practicalgastro.com/pdf/January06/FaubionArticle.pdf


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## my little penguin

http://onlinelibrary.wiley.com/doi/10.1002/ibd.20115/full


----------



## my little penguin

Whether you use pred or EEN maintence meds are the same .
Using EEN after the first course 6-8 weeks had a much lower success rate in kids than pred.
First course was the same rate as pred . Second not so much .
Kids tend to have severe disease . Their disease progresses over 10 years and spreads unlike adults. The younger the age of dx the worse the course.
These things are known.
I will get you the paper on remission rates and EEN
remission rates on pen with maintence meds is high though .


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## PixieGirl

Hi i'm pixiegirl i'm een next week.:highfive:


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## Robs a

My son did En for 6 weeks exclusively.  He was on Modulen.  at the end of the period although there was some improvement in his general wellbeing his inflammation markers were still quite high, iron levels low etc.  GI insisted he go on Budesonide to speed up the "remission"  I was resistant but agreed eventually.  He obviously thrived on the Budesonide and after a 5 week course his bloods were absolutely normal.  We are now awaiting Med Insurance decision on Revellex.  Had so hoped to avoid meds and was very hopeful that with a maintenance programme of a few shakes a day he would be fine.  Unfortunately this was not the case, and our GI kind of predicted that too.  From the reading I have done on the subject (quite enstensive actually)  it seems that maintenance meds is almost always required.


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## Tesscorm

Yes, EN does have comparable success rates at INDUCING remission as steroids but it is not as successful at maintaining remission on its own.

My son used EN to induce clinical remission successfully but it has not eliminated all inflammation so we are looking into meds now.  However, it has maintained the status quo since July 2011 when he began using EN only as maintenance (May-July 11 was exclusive period).

My understanding (and I could be wrong :redface is that EN is more successful in alleviating small bowel inflammation; ironically, that is where my son still has inflammation but MREs and scopes have confirmed the inflammation in his stomach, duodenum and colon seen at diagnosis, has disappeared.

Although Stephen's new adult GI doesn't agree with me re remission, I do believe EN, with regular diet plus medication, used as a supplement aids in maintaining remission (if nothing else, is an excellent source of nutrition for developing kids! which the GI does agree with ).


----------



## emillerstudio

Hi, struggling here with my 17 year old son who had been drinking Peptamen for 2 weeks and says he is so hungry and just wants food. He is still losing weight as he had 10-15 bouts of diarrhea a day. But the blood is lessening, but that could be due to 2 doses of Methotrexate. His inflammation is off the charts with a Sed rate of over 140 though. Can't do prednisone, it sent him into a deep depression which took a year to get over.
Just feel terrible for him and go to GI tomorrow who I think will tell him he need to do a tube. He  is of course totally against that. Can't imagine him doing this when he finally can go back to school.


----------



## CarolinAlaska

How much Peptamen is he drinking/day?  Is a nutritionist involved with helping decide how much/what kind of formula you use?  We just had to go with tube feedings for our daughter.  It isn't fun, but getting her healthy is our main priority.  Has your doctor or have you considered Entocort?  I hear it has much fewer side effects but works almost as well as prednisone if his inflammation is in the small bowel (doesn't help much above that, I understand).  Some kids do the tube feedings just at night while they sleep so they can go to school during the day.  You have options.  Maybe it will take a change in formula.  Also, is he on exclusive formula, or is he doing food too?


----------



## emillerstudio

He is on formula exclusively and he was on Entocort about 2 years ago. It caused him to be totally out of it, brain fog big time. That was when he quit going to school at all and had a home-bound tutor to finish his freshman year. I am only now finding out that could have been the cause of a deep depression he went into after he went off the steroids. Took a year to get over that! So that is why our current GI ia avoiding steroids and using EN and methotrexate.


----------



## Robs a

My 14 year old son would not consider using the tube. He put his mind to taking the shakes orally and was able to do so for 6 weeks exclusively.  His calorie intake was closely monitored by his nutritionist to ensure he got the right amount.  He was also very hungry at first and craved chewing on something.  We were able to give him sugar free chewing gum (not too often though) which kind of satisfied that need.  My other child was abroad at the time so my husband and I made mealtimes a non-event, to avoid by son from having to witness us eating. It was not an easy time but through it all my son remained determined.  Your son needs constant encouragement to see this through, it is well worth trying.  Good Luck


----------



## Tesscorm

emillerstudio,

So sorry you and your son are dealing with this!   Crohns is not easy nor are its treatments! :ymad:  I read your other post on My Story and hope you can find some advice, knowledge and support to help you here.  There are so many wonderful parents, always willing to share their experience!!  They have been invaluable to me!

My son did the exclusive EN for six weeks and responded very well (I won't give the whole story here, but it's on the first page of this thread).  It did induce clinical remission and alleviated all of his symptoms.  Unfortunately, it was not able to eliminate all his inflammation and, actually today, is having his first remicade infusion.  But, exclusive EN has comparable success rates at inducing remission as do steroids!  Unfortunately, it is not as successful at maintaining remission for the long term.  I do very much recommend it!!!!!  It will provide your son with bowel rest, it is anti-inflammatory and will provide him with all the necessary nutrition. 

I'm sure I mentioned it in my post on the first page but, just in case, my son uses an NG tube overnight.  He inserts it nightly and removes it in the morning - he did not find it difficult to learn, however, everyone is different...  

It does take time for the bowel to heal, which is why the exclusive period runs for 6 to 8 weeks (sometimes longer). 

Hopefully, he can make it through the exclusive period and the methotrexate will be working well enough that he will be feeling much better.

:ghug:


----------



## Zinnia

My 5 year old was on EN for 6 months primarily for growth problems.  He has Crohn's.  I highly recommend it...and it's not as scary as it seems!  I inserted the tube myself, once a month.  He gained 10 pounds and 3 inches in height.  We were careful to refer to it as a "medicine" or "treatment".  This was easier psychologically.  He had no diet restrictions.  He could eat whatever he wanted when he was hungry.  He received about 1100 calories while he slept.  Then he would have an afternoon snack and a normal dinner.  He barely noticed the tube.  Only the insertion bothered him.  But that was only for 30 seconds.  Much better than Humira injections which hurt.  The NG insertion just feels funny for a few seconds going in.  If there is anyone wondering whether to start EN with a young child, I'd be happy to answer any questions.  We were apprehensive at first, but now I wonder why we didn't do it sooner!  It's very safe...no side effects to worry about.


----------



## imaboveitall

Just a bump because:

after having lactoferrin around 5000 for four weeks and then sudden GI symptoms that made me fear obstruction, old V was put on exclusive enteral feeds, no food as she has always had, and three days later her lactoferrin dropped to 477.
The GI symptoms vanished and have not returned. Today is one week on no food, just formula. Plan is six weeks.

This treatment is so awesome, I wish all would try it.


----------



## my little penguin

WOOHOO!!

For numbers dropping
IS she still on Remicade?


----------



## Amy2

My 16 year old is on day 12.  So far, so good.


----------



## Jmrogers4

That is great imaboveitall.  Thank you for the update.


----------



## CarolinAlaska

Glad to hear Amy and IAIA.  Jaedyn is done with her 8 week period and is symptom free except bad smelling gas (which I suspect is formula related).  Fecal calprotectin test is pending (took 16 days last time!).  Now we're trying to figure out how to reintroduce foods.  How're your kids taking the formula?  Orally?  NG tubes?  24 hours?  Night only?  I hope they get the healing they need!  I know they can!


----------



## Amy2

My son had the most awful smelling gas when he was in the hospital and for a couple of weeks when he first got home, but as soon as he stopped eating food, it went away.

*By the way, I appreciate the support and information that I have gotten on this board more than I can ever express.  You guys made it possible for me to sleep at night!!! *


----------



## CarolinAlaska

It's really good to be able to sleep isn't it?!  I'm so glad you are getting the support you need.


----------



## Tesscorm

Great news Julie and Amy!!!  When it works, EN really is a great option!


----------



## izzi'smom

Glad to hear it!!!


----------



## DustyKat

Good to hear all is going well for your kids Julie and Amy! Long may it continue! :ghug: 

Dusty. :heart:


----------



## imaboveitall

Carol, foul smelling gas is sometimes bacterial overgrowth, look up SIBO.

MLP, yep, still on Remicade, infusion 4 is Apr 9. The Saint wants to add Imuran, I am balking thus far.


----------



## my little penguin

Personally I would add MTX before imuran if there was a choice given by the doc.

BUt that is just me-
WE no longer have a choice- moving on to humira pending the Brain MRI results ( to rule out demylination)

Glad the formula only is working again.


----------



## CarolinAlaska

my little penguin said:


> Glad the formula only is working again.


For your son or for someone on this thread?  I hope you mean for your son...I'd like to hear something is working...


----------



## imaboveitall

MLP, she's on MTX already, low dose oral weekly just for antibody prevention, not anti-inflammatory effect.
The studies he's sending me support Imuran over MTX. But I'm not going there.


----------



## my little penguin

what about injections weekly of MTX since she may not be absorbing it????

Carol- Her daughter is on forumla and just switched back to EEN . It lowered her inflammatory stool markers.
My son is on formula as PEN  clinically from a GI standpoint he is mostly good. BUt he get more autoimmune (EIM stuff) as a added bonus


----------



## LJS

My son is starting EN on Friday. He just turned 9, is 48" and 46 lbs.. very, very small. His inflammation is in the very center of his small intestine. Has been on imuran and allopurinol for 2 years but his SED rate has not decreased (it's actually increased) and his other markers show inflammation. So, in combo with his not growing, we are trying EN. My doctor doesn't believe in EEN, believes it's too hard to get kids compliant, so DS will be able to eat anything he wants. In truth, he's such a poor eater, that just having him get 1800 calories/night will be a huge relief. He will be trained on inserting the NG tube himself, and he'll remove it daily. Biggest hurdle has been insurance, whihc has denied everything. Finally got the supplies approved EXCEPT for the Peptamen Jr. I've been able to get enough for us to do it for 8 weeks.. then we'll see... fingers crossed!


----------



## Farmwife

That's the best part about Grace being on EN. I know she's getting ALL that she needs to grow and (hopefully) thrive. I hope all goes well for son.
HUGS


----------



## CarolinAlaska

Well, for our update, we've started Jaedyn back on foods.  She's had apple juice, beef broth, sweet potatoes and white potatoes.  The potatoes didn't go over very well.  I'd think she'd be glad to have something solid to swallow (even if it is soft), but she didn't like the texture or that it couldn't have butter .  Maybe tomorrow we'll try fish or eggs.


----------



## ben's rn

Is anyone using PEDIASURE EN or any other Abbot Lab product for EN or supplementing??  If you are giving this to your Crohnie, PLEASE STOP.  These products contain a known GI inflammatory ingredient: CARRAGEENAN which I believed has made my son VERY ill.  He just had a 2 foot jejunal resection.


----------



## Jmrogers4

Jack drinks the Peptide.  He has a GI appt on Thursday.  I'll put it on my lists of questions.


----------



## imaboveitall

Ben's Rn, V has used Pediasure Peptide for nearly five years.
Please expound, and cite studies to support your radical claim.
Many thanks.


----------



## my little penguin

> Carrageenan is a high molecular weight sulfated polygalactan used to improve the texture of commercial food products. Its use increased markedly during the last half century, although carrageenan is known to induce inflammation in rheumatological models and in intestinal models of colitis. We performed studies to determine its direct effects on human intestinal cells, including normal human intestinal epithelial cells from colonic surgeries, the normal intestinal epithelial cell line NCM460, and normal rat ileal epithelial cells. Cells were treated with high molecular weight λ-carrageenan at a concentration of 1 μg/ml for 1–96 h. IL-8, IL-8 promoter activity, total and nuclear NF-κB, IκBα, phospho-IκBα, and Bcl10 were assessed by immunohistochemistry, Western blot, ELISA, and cDNA microarray. Increased Bcl10, nuclear and cytoplasmic NF-κB, IL-8 promoter activation, and IL-8 secretion were detected following carrageenan exposure. Knockdown of Bcl10 by siRNA markedly reduced the increase in IL-8 that followed carrageenan exposure in the NCM460 cells. These results show, for the first time, that exposure of human intestinal epithelial cells to carrageenan triggers a distinct inflammatory pathway via activation of Bcl10 with NF-κB activation and upregulation of IL-8 secretion. Since Bcl10 contains a caspase-recruitment domain, similar to that found in NOD2/CARD15 and associated with genetic predisposition to Crohn's disease, the study findings may represent a link between genetic and environmental etiologies of inflammatory bowel disease. Because of the high use of carrageenan as a food additive in the diet, the findings may have clinical significance


From:
http://m.ajpgi.physiology.org/content/292/3/G829.full


----------



## my little penguin

http://www.cornucopia.org/CornucopiaAnalysisofCarrageenanHealthImpacts042612.pdf

I haven't checked out the studies cited here for validity yet .


----------



## my little penguin

http://articles.chicagotribune.com/...ageenan-fda-scientists-food-additive-safety/2

Just an article debating it.


----------



## my little penguin

http://meghantelpner.com/blog/ensure-and-the-carrageenan-conspiracy/
More debates


----------



## Farmwife

imaboveitall

Here's a link to the wiki page on this forum. Press HERE

David has a lot of knowledge on this subject.


:ghug:


----------



## LJS

Update: Son inserted his NG tube by himself, first try - woo hoo! Did great on his first feed. We didn't get to the 1000 ml, as we are stair-stepping him up... he did about 600 ml and about 900 calories. Did great, although he did throw up this morning, so tonight, I'll keep him at the same volume, just keep the pump going at 60 ml/hr for 10 hours and not starting at 20, then increasing every 2 hours by 20 ... 

Question: I don't see any lubricant packs in my supplies. I'm goig to ask the home health company on monday but can I get those little packs somewhere? I read that you cannot use vaseline as it destroys the integrity of the tube.

thanks!


----------



## my little penguin

> Abstract
> In this article I review the association between exposure to carrageenan and the occurrence of colonic ulcerations and gastrointestinal neoplasms in animal models. Although the International Agency for Research on Cancer in 1982 identified sufficient evidence for the carcinogenicity of degraded carrageenan in animals to regard it as posing a carcinogenic risk to humans, carrageenan is still used widely as a thickener, stabilizer, and texturizer in a variety of processed foods prevalent in the Western diet. I reviewed experimental data pertaining to carrageenan's effects with particular attention to the occurrence of ulcerations and neoplasms in association with exposure to carrageenan. In addition, I reviewed from established sources mechanisms for production of degraded carrageenan from undegraded or native carrageenan and data with regard to carrageenan intake. Review of these data demonstrated that exposure to undegraded as well as to degraded carrageenan was associated with the occurrence of intestinal ulcerations and neoplasms. This association may be attributed to contamination of undegraded carrageenan by components of low molecular weight, spontaneous metabolism of undegraded carrageenan by acid hydrolysis under conditions of normal digestion, or the interactions with intestinal bacteria. Although in 1972, the U.S. Food and Drug Administration considered restricting dietary carrageenan to an average molecular weight > 100,000, this resolution did not prevail, and no subsequent regulation has restricted use. Because of the acknowledged carcinogenic properties of degraded carrageenan in animal models and the cancer-promoting effects of undegraded carrageenan in experimental models, the widespread use of carrageenan in the Western diet should be reconsidered.


From:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1242073/


----------



## my little penguin

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1242073/pdf/ehp0109-000983.pdf

Full article


----------



## my little penguin

http://www.sciencedirect.com/science/article/pii/S0955286309001521


----------



## my little penguin

> Carageenans are a group of high molecular weight sulphated polygalactans which find extensive use in the food industry as thickening, gelling and protein‐suspending agents. Although there is no evidence to suggest that the persorption of small amounts of carageenans across the intestinal barrier poses an acute toxic hazard, they are known to be biologically active in a number of physiological systems and extended oral administration in laboratory animals has been shown to modify both in vivo and in vitro immune competence. Whereas this effect could be attributed to carrageenan having a selective toxic effect on antigen‐processing macrophages, additional studies suggest that macrophages can also influence immune responses by the timed release of immunoregulatory mediators. Evidence in support of this comes from in vitro studies which demonstrate that carrageenan‐treated macrophages can, depending on conditions and time of administration, release either stimulatory or inhibitory factors. The former is known to be the immunostimulatory agent interleukin 1 (IL‐1). The inhibitory factor, which is produced at an early stage following exposure to non‐toxic doses of carrageenans, has yet to be formally identified but it is believed to be a prostaglandin because of its specific mode of action and short biological half‐life.
> 
> At present it is impossible to relate these studies to the human situation. Although it is established that carrageenans can cross the intestinal barrier of experimental animals, there is no evidence to suggest that the limited uptake that may occur in man in any way interferes with normal immune competence. Nevertheless, increased exposure may occur in the neonate during weaning, and adults and children following allergic reactions and episodes of gastrointestinal disease. Further studies under such conditions now seem warranted in order to elucidate the possible immunological consequences which may be associated with enhanced uptake of carrageenans in vulnerable groups.



From:
http://www.tandfonline.com/doi/abs/10.1080/02652038909373801


----------



## my little penguin

> Rodent models are increasingly utilized to investigate management and treatment of inflammatory bowel disease and reduction in the heightened risk of colon cancer. Among various agents which induce inflammation in the colons of animals, is the degraded form of Carrageenan. Degraded Carrageenan is highly toxic and also carcinogenic. Recently, undegraded Carrageenan has been found to increase the risk of colon cancer and induce a number of cytokines and enzymes known to be involved in inflammation. Undegraded Carrageenan is non-carcinogenic and when administered in the diet of the animals induce sustained inflammation without bleeding and ulceration. Therefore, undegraded Carrageenan may serve to be a superior agent to use to induce inflammatory responses in a long term animal studies. Recent advances in MRS technology to assess cellular changes in a small tissue sample may provide a sensitive approach to investigate the presence or absence of inflammation. The main objective of the present study was to determine if 2 or 4% Carrageenan in the diet would elicit responses in the colon within a short time


From:
http://cds.ismrm.org/ismrm-2003/1324.pdf


----------



## my little penguin

> Multiple studies in animal models have shown that the commonly used food additive carrageenan (CGN) induces inflammation and intestinal neoplasia. We performed the first studies to determine the effects of CGN exposure on human intestinal epithelial cells (IEC) in tissue culture and tested the effect of very low concentrations (1–10 mg/L) of undegraded, high-molecular weight CGN. These concentrations of CGN are less than the anticipated exposure of the human colon to CGN from the average Western diet. In the human colonic epithelial cell line NCM460 and in primary human colonic epithelial cells that were exposed to CGN for 1–8 d, we found increased cell death, reduced cell proliferation, and cell cycle arrest compared with unexposed control cells. After 6–8 d of CGN exposure, the percentage of cells reentering G0-G1 significantly decreased and the percentages of cells in S and G2-M phases significantly increased. Increases in activated p53, p21, and p15 followed CGN exposure, consistent with CGN-induced cell cycle arrest. Additional data, including DNA ladder, poly ADP ribose polymerase Western blot, nuclear DNA staining, and activities of caspases 3 and 7, indicated no evidence of increased apoptosis following CGN exposure and were consistent with CGN-induced necrotic cell death. These data document for the first time, to our knowledge, marked adverse effects of low concentrations of CGN on survival of normal human IEC and suggest that CGN exposure may have a role in development of human intestinal pathology.



*Carrageenan Induces Cell Cycle Arrest in Human Intestinal Epithelial Cells in Vitro1–3

*

From:
http://m.jn.nutrition.org/content/138/3/469.short


----------



## my little penguin

http://libdoc.who.int/publications/2008/9789241660594_eng.pdf#page72

Page 65 from investigation by WHO


----------



## Twiggy930

LJS said:


> Update: Son inserted his NG tube by himself, first try - woo hoo! Did great on his first feed. We didn't get to the 1000 ml, as we are stair-stepping him up... he did about 600 ml and about 900 calories. Did great, although he did throw up this morning, so tonight, I'll keep him at the same volume, just keep the pump going at 60 ml/hr for 10 hours and not starting at 20, then increasing every 2 hours by 20 ...
> 
> Question: I don't see any lubricant packs in my supplies. I'm goig to ask the home health company on monday but can I get those little packs somewhere? I read that you cannot use vaseline as it destroys the integrity of the tube.
> 
> thanks!


So GREAT!!!!!!!!!!!  I am so glad to hear that it went well.  It is amazing what these kids can do!    

:dance::dance::dance::dance::dance::dance:

I'm trying to remember what rate we used.  And can't seem to remember.  I know we started slow and increased the rate slowly.  

After my son stopped using the numbing gel (only used it for about the first 5 days) he didn't use any gel when inserting the tube.  

Hope it continues to go well.


----------



## CarolinAlaska

LJS said:


> Update: Son inserted his NG tube by himself, first try - woo hoo! Did great on his first feed. We didn't get to the 1000 ml, as we are stair-stepping him up... he did about 600 ml and about 900 calories. Did great, although he did throw up this morning, so tonight, I'll keep him at the same volume, just keep the pump going at 60 ml/hr for 10 hours and not starting at 20, then increasing every 2 hours by 20 ...
> 
> Question: I don't see any lubricant packs in my supplies. I'm goig to ask the home health company on monday but can I get those little packs somewhere? I read that you cannot use vaseline as it destroys the integrity of the tube.
> 
> thanks!


I think you can use K-Y, but you'll want to confirm that.  You can get the lubricant also from the medical supply place that provides your pump.  We got lubricant, but then didn't end up removing her tube daily like we thought we would...


----------



## CarolinAlaska

Update on Jaedyn...she is done with EEN.  She started with a fecal calprotectin of 632 and ended with a level of 93.  I'm pretty happy with that, but would have loved to see it less than 50!  She started with 70 lbs and ended after 8 weeks at 75 lbs.  She had a couple of colds and the stomach flu during her course, which I think slowed down the weight gain she might have otherwise had - and was intolerant to the Ensure she drank for the first 3 weeks...


----------



## Twiggy930

CarolinAlaska said:


> Update on Jaedyn...she is done with EEN.  She started with a fecal calprotectin of 632 and ended with a level of 93.  I'm pretty happy with that, but would have loved to see it less than 50!  She started with 70 lbs and ended after 8 weeks at 75 lbs.  She had a couple of colds and the stomach flu during her course, which I think slowed down the weight gain she might have otherwise had - and was intolerant to the Ensure she drank for the first 3 weeks...


Fabulous!  Is she enjoying food like never before?


----------



## CarolinAlaska

Twiggy930 said:


> Fabulous!  Is she enjoying food like never before?


Not as much as I thought she would.  One of her biggest symptoms of her Crohn's is lack of appetite.  Although she is eating, and it isn't hurting her or making her sick, she isn't loving it...


----------



## Twiggy930

My son doesn't have a huge appetite either.  Coming off EEN he didn't eat huge amounts but he LOVED what he ate.


----------



## LJS

aahh, home by ourselves, doing it for the first time. DS threw up after the tube was inserted. Then, when I went to test the pH of the stomach contents, nothing came up through the syringe.. we may not end up doing this tonight. Waiting half hour and will test again, but if nothing comes up into the syringe, I'm removing the tube and starting again tomorrow night..not going to insert a new tube tonight


----------



## CarolinAlaska

Sorry it didn't go so well.  I hope that you get the good feedback when you recheck and that it goes better after this.


----------



## my little penguin

Good news on the fecal cal....

Ljs sorry to hear about the tube


----------



## Twiggy930

ben's rn said:


> Is anyone using PEDIASURE EN or any other Abbot Lab product for EN or supplementing??  If you are giving this to your Crohnie, PLEASE STOP.  These products contain a known GI inflammatory ingredient: CARRAGEENAN which I believed has made my son VERY ill.  He just had a 2 foot jejunal resection.


I totally agree that the effects of carrageenan should be studied further but everything I have read so far on the subject (thanks for the links MLP) is inconclusive in terms of the effects of undegraded carrageenan *in vivo*.  Additionally, the studies that show that EEN reduces inflammation would indicate that carrageenan does not have significant effects *in vivo*.  I am having trouble determining which of the studies on EEN have used formulas that contain carrageenan but given the ubiquity of carrageenan in the formulas (and yes I know it isn't in all of them) I would assume that at least some of the studies used formula that contained carrageenan.  

Now, as with everything with this disease, what is ok for someone might not be ok for someone else.  There could very well be people who are sensitive to carrageenan, that wouldn't surprise me in the least.  But to make sweeping statements about a treatment that, compared to many of the other treatments, is so safe and effective is troubling to me.  I would not want anyone considering EN as a treatment to be scared off because the formula they have access to, or the only one their child will drink, contains carrageenan.


----------



## Twiggy930

LJS said:


> when I went to test the pH of the stomach contents, nothing came up through the syringe.. we may not end up doing this tonight. Waiting half hour and will test again, but if nothing comes up into the syringe, I'm removing the tube and starting again tomorrow night..not going to insert a new tube tonight


This happened to us.  Try giving him a big glass of water and test again.  Maybe the end of the tube is not quite far enough down to get to the stomach acids.  We also had similar troubles when the tube was kinked.  Maybe try pulling it slightly out, but not so far that he has to swallow it down again, and then put it back to the spot it should be.  Doing this might get the kink out without having to reinsert the whole thing.


----------



## LJS

So, after waiting half hour and no fluid, I tried flushing the tube with a little bit of water.. however, doing so caused the water to come out the pink cap where the guide wire is!! I ended up pulling the guide wire first (not how we did it in the hospital), capping that side, and then trying to aspirate some stomach juices and it worked perfectly. Not sure what the story is, b/c we were told not to pull the guide wire until AFTER testing the pH, but for whatever reason, it was causing the problem.

This gets easier, right?? Thankfully he's now sound asleep, but I'm totally stressed!! LOL


----------



## my little penguin

Thanks Twiggy
The one I like is the study from the WHO with baboons on formula only--
No issues found at autopsy .


----------



## my little penguin

Ljs
Before long you will be a pro
It just takes a little practice.
Glad it worked out


----------



## Twiggy930

I'm not sure if we used the same type of tube as you are but we were instructed to pull the guide wire out before inserting the tube, in other words we never used the guide wire.  The tube my son inserted was a very thin extremely flexible/floppy tube.    

It does get easier.  We had a bunch of minor problems the first week or so and then we got into a groove and all was good.  :hang:


----------



## CarolinAlaska

Glad you were able to work it out and that son is not stressed over it.  Sorry you got stressed over it - I would have too.  <<<HUGS>>>


----------



## Farmwife

LJS
I'm so glad you firgered it out.
Someday you'll be the one helping others with advice about this.
Hang in there.


----------



## LJS

Thanks, all. He did great!! We were told that the guide wire helps push it through, that it's really floppy without it.. in any event, I'll pull the wire tonight before testing the pH. He did great, slept through the night and got up to 650 ml/cal. I lowered him from Peptamen jr 1.5 to 1.0, since he threw up yesterday.. will slowly add ml's nightly, then once he's doing 1000 ml's on 1.0 (1000 cal), will start the 1.5 up. Also, I told my son that if he has a sleepover or we have a late night out or something, and we miss a night, no biggie..want to take the stress out of it totally...he woke up this morning feeling great, and even ate breakfast! Since he really didn't have a huge number of calories overnight, he feels good without feeling over-stuffed..
For my 46 lb boy, he's supposed to get 1500 cal overnight..for those of you who did EN, does this sound about right? I think I read some of you did 3000 cal - that is double what my son will do.. is that b/c you were EEN and have older/bigger kids?
Thanks!


----------



## Farmwife

Grace is 4 and on 1200 to 1300 cals a day. She's 40lbs.
Typically IBD'ers need one and HALF more calories than their piers.


----------



## Twiggy930

My son had 3000 cal per day (or night actually) but he was 10 years old and weighed about 60 lbs.  Prior to getting sick he weighed about 80 lbs so the high calorie intake was to get him to gain some of the lost weight back.  We were also told that the amount of formula the doctor and nutritionist prescribed was a minimum and that there was no maximum, meaning that he was free to take in as much extra formula as he wanted.  Now I am sure this wouldn't be the case if he had been overweight, or there had been a worry that he would become overweight, but with Crohn's kids that is likely an uncommon scenario.  

So happy to hear he woke up feeling great!


----------



## Tesscorm

Carole, are you going to keep her on supplemental EN?  Stephen went from 3000 cal/day on EEN to 1500 cal/day (5 day/wk) (which he's still doing).  He gained most of the weight the first six weeks of supplemental EN plus regular food (10 pounds during 6 weeks EEN, another 20 pounds next six weeks on supplemental EN).


----------



## Jmrogers4

We did 1900 a day supplemental EN with the goal being to take in at least 3000 calories.  Gained 23 lbs in 6 weeks but my son is 13 and was 77 lbs.  We are now at 948 calories from supplemental EN and he is maintaining 100 lbs.

Glad you got the tube figured out I can imagine the frustration, soon you will be an expert


----------



## awmom

That is great that Jaedyn is starting on a regular diet.  As I think back to when Nico,did EEN, it took a while for him to get his appetite back and for his gut to adjust to solids.  Her labs look great and I hope all goes well,from here on!


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## ben's rn

Thanks my little penguin for sharing all the studies on the carrageenan topic.  In my own experience, my son had used pediasure EN for 3 years (3-8 cans per night) which also lists the ingredient.  Dr. Grovit, a NYC MD who specializes in Crohn's & nutrition, pointed out that if we do nothing else to change Ben's diet, then get the carrageenan out at least.  This is the stuff they give lab rats to give them GI inflammation and ulcer.

My son seemed to be in remission from Crohn's over the past few years but this past Jan. had nausea that kept him out of school for 2.5 months....he ended up having a 2 foot long resection of jejunum.  Lots of strange ulceration was in there   So, imaboveital, this is why I am warning other parents to not use especially if for EN and in large daily amounts.


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## my little penguin

Actually if you look at the studies -DEGRADED carrageenan is given to lab rats which has a different molecular weight (much lower) than UNGRADED carrageenan  which is food grade. The difference in molecular weight is very significant.
THe studies were all over the map in terms of how much effect "ungraded" carrageenan can have and whether it can cause an issue in more sensitive individuals such as those with IBD. 


Also one study found by the WHO organization that baboons fed nothing but formula with UNGRADED carrageenan for a prolonged period of time had NO damage to their GI tract.

MY point being that just because A happened to your child does not mean B was the cause.
B could have played a role for your child but may not for other children or even adults.

I "think" Imaboveital was trying to stress that we need to make sure there are proven scientifically accepted articles when blanket statements are made so that families who can not afford or kids can not tolerate other formulas do not avoid something they do not have to.
IBD is not that clear cut.

I think we need to stay on top of the literature /studies  until a clearer picture is presented.

Presenting your experiences is very helpful for others so they can "ask their GI" how this information could affect their child. The blanket statement was the reason I posted the links so that others could read the various studies and "see for themselves" that studies have not be proven at least yet.


I am glad your child is doing better.


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## ben's rn

Actually, the food carrageenan is also a problem..as it degrades in the gut.  Many agree that it is a risk to humans, especially if they already have IBD.  Why take chances?  There are plenty of alternative formulas and supplements.  There is a whole separate thread here on the carrageenan and IBD topic.  I was upset when I learned only recently that it was in Ben's EN formula, as we did everything we were supposed to do for 3 long years, choosing EN over Remicade in the beginning, and continuing to tube feed even after he needed meds too.  When he needed surgery (due to continual nausea) I thought it was odd, since his labs indicated he was doing so well for so long.  If I had known, I would have had him on a different EN formula.  I was only trying to share this realization and prevent possible damage in another kid.

Please listen to Dr. Grovit's radio interview on nutrition on the website NIBDINKIDS.com, the link is in the lower right corner of home page  http://www.nibdinkids.com/

http://www.cornucopia.org/CornucopiaAnalysisofCarrageenanHealthImpacts042612.pdf


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## ben's rn

Are you referring to the baboon study from 1977?  36 years ago?  The study went on for 112 days?  In normal, healthy non-IBD animals? My son did EN for over 1000 days  AND, he has Crohn's Disease, so, already having inflammation and lots of it could definitely be a factor.

I think you should look at more recent research, and lots of people are trying to petition the FDA to remove carrageenan from all food.


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## LJS

So, we've been doing EN for the last 6 days.. and we are doing great. Son gets his tube in first try every time, takes him like 5 seconds! The biggest issue has been aspirating the stomach contents, but I find if I flush a tiny bit of water through the tube, suck it out, and then aspirate, seems to work fine.

I'm slowly stair-stepping him up.. he should be on Peptamen jr 1.5, 1000 ml, for 1500 cal/night. but, since i have a fair amount of peptamen jr 1.0, i'm using that first, and we are up to 900 ml/night (tonight).. once we get to 1000 ml on 1.0, i'll go down a bit and start adding 1.5 (mixing the two together)..

he's a total rock star! and is feeling really good.. now, if I can get him to try the other nostril! I'm afraid of him just using the same one all the time.


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## Twiggy930

This is soooooo GREAT!  So glad to hear it is going so well.  Very impressive.  FWIW my son used the same nostril the whole time.  He told me the other one didn't work as well?!?!?


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## Tesscorm

Same here... Stephen's used the same nostril for almost two years.  Hasn't caused a problem.

So great to hear he's doing so well with it!!!


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## LJS

oh, good to hear that you can use the same nostril! is there some time you have to wait, after eating/drinking anything, to insert the tube? my son has been driving me nuts, having a snack just a few minutes before we have to put in the tube.. wnat to make sure that is ok.


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## Twiggy930

Eating just before inserting the tube shouldn't be a problem.  Some people have NG tubes in dwelling and eat regular meals with the tube in.  I suppose you might run the risk of some of the partially digested food blocking the tube when you aspirate the stomach acid.  If that happens you should be able to flush the tube with water and unplug it.


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## Tesscorm

Stephen often eats just before starting with the tube feeding.  My only concern has been that the food doesn't have time to be digested and moved along before the tube feeding starts.  But, he's 18, he's knows best, right?! :facepalms:

For the most part, however, it hasn't been a problem.  Once or twice, Stephen has gotten up with ab pains...  can't say for sure but I have suspected that a heavy meal just before starting the feeding played a part!


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## LJS

was filling up the bag last night with formula and it started overflwing.. aahh, the home health care company brought me 500 ml instead of 1000 ml bags to my house! They brought me a few 1000 ml to the hospital, so I was using those, but then they dropped off my supplies for the rest of the month at home, adn I didn't even notice, so they have to bring new supplies today. I just had to get up in middle of night to re-fill his bag. So much fun! but he got 850 ml in.. woo hoo! going for 1000ml tonight!


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## Farmwife

So glad to hear that. 1000ml would be great for him.

Ask IF your company will call before each order.
The reason I do this is because it MIGHT take a couple orders to get it right.
They kept sending HUGE syringes that didn't even fit Grace's tube. 
Well sure the first 10 made good water guns for my kids but after that it's just overkill.
It took 3 times of saying it was the wrong size.
I finally said call before you order to see what supplies I need. They do now.


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## LJS

great idea Farmwife.. I know, those syringes are enormous, aren't they?? I ended up ordering the lubricant online b/c although they use the individual packages in the hospital, the home health company doesn't provide them. Thankfully I had one in my purse so went online, googled it and ordered it from amazon.. sheesh!


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## Farmwife

I found getting a good relation ship with the DME people to be key.
I've stopped by there and they got to see Grace and me.
I've called before and said have you heard of this and they will check with insurance if it will be covered. 
Remember the insurance company will send the "sundered kit".
BUT you can ask for things like lubricant and give a good reason why and it can get covered.
We've tried 3 different skin protecting gels that was all covered because Grace was having sores from the adhesives. Again it was covered but not until I asked.

HUGS


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## LJS

I actually have a great releationship with the home health company. Unfortunately, they checked and insurance won't cover the lubricant so I had to order my own. They did, however, swap out the pump today (ours keeps getting flow errors) and brought me 1/2" tape instead of the 1" tape they initially provided..plus the right bags! LOL


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## Farmwife

1/2"tape? Well I'll be...I want that. I mean she's four and an inch piece of tape covers most her cheek. I so calling tomorrow THANKS

What kind of pump are you using?


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## LJS

Kangaroo Pump. You?


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## Farmwife

Enteralite Infinity
I love this pump because it's lite and small and Grace can carry it in her back pack along with her feeds and it's still not to heavy.


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## LJS

yes, this one is very small. Can go in a fanny pack or on an IV pole. Since son is doing feeds at night, though, I just mount it on the IV pole.


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## crohniekid

R has been on EEN for ALMOST three weeks.  He is drinking Kids Essentials 1.5 and Ensure Plus Calories (his dietician gave him the ok to have a couple adult ones to mix up the flavors).  He says he is feeling a lot better...BUT....I don't seem to notice a big improvement?!?!  His color is a little better and energy level are a little better (but we live in Canada and it's spring...can anyone say spring fever!!!!)  His mild symptoms (which were always mild) have remained...along with some new ones (like rectum pain and occasional constipation).  He also hasn't gained any weight at all...but hasn't lost either.  He has an MRI booked for next week and GI appointment for the week after (they were already booked to see how severe his disease its).  So my questions for you guys are 1)  how long before you saw results with EEN??  and 2) for those of you it didn't work for...how did you know it wasn't working???
R also just started 50mg of Imuran on Friday after his negative TB skin test.


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## Jmrogers4

We saw symptoms abate after about 3 weeks and my son did not gain weight on it.  The only time he has gained weight is when he was in remission and eating full diet along with a few shakes a day.  He did not gain weight for 3 years. (although we did not do supplemental nutrition during that time) It was only when we added shakes to regular diet that he has gained.


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## Clash

We are only 5 days in on EN. C gets 7 cans a day and is following the CHOP protocol of 80-90% of intake is by EN. We are using the Ng tube. In the hospital he was total EEN since it filled him up and he wasn't hungry, so in those 4 days he gained 2.1 or 2.3 can't really remember which.

The Remicade he had the week before hospitalization had helped the stomach pain to subside but the joint pain, fatigue and such have stuck around, I guess 5 days in is too soon to determine if the EN will help with that.


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## Farmwife

:confused2: my Grace didn't improve much over a month on full EEN so she had to do a round of prednisone. After the round of prednisone she was still full EEN and we were able to see big a improvement.


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## LJS

Our protocol was similar to Clash's. My son was supposed to get about 80-85% of his nutrition at night through EN and eat whatever he wanted during the day. He gained about 5 lbs in the first 4-6 weeks, which was more than he gained in the previous 4 years! However, once he stopped or slowed down, he lost it all.. we are now on remicade and go for our third loading dose on Friday. No weight gain as of yet but his labs have been markedly improved.


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## my little penguin

DS had EEN for 9 weeks . 
His inflammatory numbers went down within a month .
He started 6-mp the same time.
His symptoms stayed though .
He eventually had to go on pred x2 and switch meds twice .
Then he gained weight. While on en as a supplement plus food on the second round of pred .
So a year after dx.


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## imaboveitall

Violet's response to enteral feeds must be more unusual than I thought. I think (and her doc agrees) that her excellent response was due to the amount of formula she received and the type. He said she'd need 2800-3000cals and most won't go along with that regimen. Noncompliance is the issue he said. Not in my house, I replied.

At diagnosis age 10: 59lbs, (down from her normal of 78lbs) Height 55in
After 4 months on enteral: 99lbs, height 58.5in Yes, FOUR MONTHS. She hadn't grown in 9mos prior to that..
Now she is 64.5in and 156lbs

Her protocol was: 30 days 3000cals of PEPTIDE based formula plus whatever she wanted to eat. This meant being hooked to the pump 24h to get that much formula in.
Her motility was so horrible she ate almost nothing until about the sixth week or so.
Symptom resolution was fairly immediate, overall recovery maybe 90 days.

Feeds were gradually reduced and food increased until she got just 1000cals at night which she still does.


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## Tesscorm

S was older than your son when diagnosed (almost 17) but his EEN protocol was 3000 cal per day, no food for six weeks.  

Re weight - he had lost 20-25 lbs before diagnosis, once starting EEN, he gained 6 lbs fairly quickly and then another 4 lbs over the six weeks.  Once the six weeks 'exclusive' period ended, he continued with 1000 cal/day (5 days per week) plus a regular diet - over the next six weeks, he gained another *20 *lbs!!  I think the slow start to the weight gain might be caused by inflammation that has not healed yet and that activity levels begin to increase as they feel better but they are on a set number of calories per day.  My son also continued with the supplemental feeds for two years and, now that he's at university, still drinks 1-2 Boost shakes per day.  (FWIW, when I asked his dietitien about the slow immediate weight gain, she wasn't concerned, as long as he wasn't losing weight.)

re Symptoms - my son's outward symptoms disappeared almost immediately.  I'm not sure how much was due to the EEN and how much was due to a week of flagyl IV prior to commencing EEN.  During the first six weeks, he did have diarrhea (however, we were told this sometimes happens as his only 'food' was liquid) and some instances of mucous, however, all his other symptoms (fever, fatigue, mouth ulcers, etc.) all disappeared.


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## crohns suffer"s mum

hi my 17 year old newly diagnosed son has been on modulen feeds only for 5 weeks with one more week to go before he is to attempt small amounts of particular foods. He has been able to tolerate it orally so no nasogastric tube has been necessary. although not very happily as it doesnt taste so good. his weight before becoming ill was 6o kilos. when diagnosed he was 47 . he is now 51 kilos so we are pleased with his weight gain.
he is on azathioprine which is causing some grief but hopefully he will settle into it.
modulen has certainly been the way to better well being and we will continue a daily drink when he is eating to keep his weight up.


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## my little penguin

The plus side is they do get used to the taste .
DS has been on peptamen jr with prebio for almost three years.
He hated it at first. Now if he gets a regular peptamen jr he turns up his nose but willingly drinks the one with prebio.
We have added different flavors to it over time
Honey maple syrup chocolate syrup etc....
Good luck


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## Tesscorm

The elemental and semi-elemental formulas are better absorbed (ie modulen, peptamin, etc.) so, if you can keep him drinking these, all the better.  However, once he is in remission and having no malabsorption issues, if he begins to balk at the shakes because of their flavour, you can try to move to the polymeric formulas such as Boost, Ensure - he'll still get his nutrients but I believe these taste better.

My son used Tolerex (elemental) thru NG tubes for two years but, once he started on remicade, I knew drinking the semi-elemental would be a tough sell (especially as the GI didn't really think they were necessary anyway :ymad, so I compromised with Boost shakes daily.


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## crohns suffer"s mum

hi my little penguin. my son hasnt enjoyed his modulen one little bit but has just got used to the taste and has become accepting of the fact that it is a necessary evil. he doesnt whinge at all (not in his nature) but will certainly be happy when its just one shake for breakfast . we add nestle quick to his but i will try the icecream topping as he is getting sick of chocolate and the strawberry quick isnt really enough to help change the taste.
thanks for the info. it is much appreciated.


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## my little penguin

To keep DS movitated I show him all the growth charts of Ibd kids /pictures most are under 5% especially if supplements are not used .
Then I show him where he was at dx -25% and where he is now 70%.
This keeps him motivated
I also explain body builders and professional Athletes use protein drinks to improve things and his peptamen was just like that .


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## Pilgrim

I'm going to go back and read the entire thread. We are just one week into EEN. MLP mentioned to me in another thread that we'll need med's in addition to EEN. I am wondering where that will start. Which med? How is that decided? Thanks for that MLP, by the way, just getting used to the diagnosis and didn't want any more bad news. But it's best to be prepared.
She gained two lbs (from 38 to 40lbs) in the first 3 days, but now it seems to be going backwards. 
It seems like it takes 3 weeks or more to see results. So, maybe it's just a blip?
We are using polymeric formulas.


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## CrohnsKidMom

I suppose every GI does EEN and maintenance meds a little differently depending on the case.  When my son was dx'd we were given the choice of Prednisone or EEN.  We ended up going the Prednisone route, but had we chosen EEN, our GI would have put him on it for 3 mos with a NG tube, and no solid food.  The maintenance med would have been started right away as it can take weeks/months for it to kick in.  Imuran/aza takes about 3 months (I suppose 6mp is much the same), and those are often the first drugs of choice if your GI tends to use the "step-up" approach.   My son was not able to tolerate Imuran, so we switched to Methotrexate injections, which kicks in a little sooner-around 6-8 weeks.  Your GI may use a "top down" approach, starting with a biologic med, like Remicade or Humira.  I do not have any experience with the biologics, but I believe they reach therapuetic levels rather quickly.  Best of luck, and take care!


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## my little penguin

Typically you don't gain weight when it is just EEN no food .
The weight gain comes with supplemental en plus food .
As stated above you need to start maintence meds when pred or EEN is started
Imuran/Aza/6-mp take 3-6 months to start working .
Methotrexate 6-8 weeks 
Remicade 6-8 weeks 
Humira 3-4 months 

If you wait then you are coming off EEN and the inflammation starts to build up again before the maintenance med can keep the system calm 
Most maintence meds are not strong enough to reduce inflammation that is why pred or EEN is given .
So pred/EEN reduces inflammation you stop them a week or two after starting 6-mp 
Inflammation comes back and you end to start pred/EEN again.

EEN is most effective the first time it is used after that it is less effective at reducing inflammation .

The good news is you have a dx 
So you can ask your gi what the plan is , what is expected to happen and what you can expect plan b to be if that doesn't happen by day xyz .


Good luck


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## crohns suffer"s mum

well after a visit to the gastric surgeon on thursday, it has been decided that surgery is the best path to take for my son harry. i am not allowing him to take steroids and the doc agrees that when these can be avoided all the better especially because my son has quite bad acne and steroids will almost always exaserbate his symptoms. he spent 8 weeks on modulen only and then food introduction. he also is on azathioprine. unfortunately all this to no avail. his surgery is booked for the end of the month at the latest but more than likely in the next fortnight. we are all abit nervous but excited at the same time as this is likely to bring great relief for what we hope to be an extended period of time all being well. 
thanks all for listening. this site is invaluable for venting


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## Pilgrim

What will they remove/do during the surgery?


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## crohns suffer"s mum

hi pilgrim
They are removing a small part of his small  bowel.


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## crohns suffer"s mum

yay surgery booked for the 19th august. i may sound a little excited which is a bit surprising considering surgery is nothing to be excited about but finally seeing a light at the end of the tunnel and fingers crossed it may just give harry an extended period of relief from his crohns.
he is also relieved and is quite ready for whats to come


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