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Kids on Enteral Nutrition

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!
 

Tesscorm

Moderator
Staff member
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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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.
 
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!
 

Tesscorm

Moderator
Staff member
:D 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!!
 
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!
 
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
 

Tesscorm

Moderator
Staff member
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
 
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.
 
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.
 

my little penguin

Moderator
Staff member
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.
:D

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.
;)
 
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
 
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.
 

my little penguin

Moderator
Staff member
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.
 
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.
 
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
 
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!
 
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?
 
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.
 
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!
 

Tesscorm

Moderator
Staff member
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???
 
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.
 

Tesscorm

Moderator
Staff member
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:
 
Location
Canada
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!
 

DustyKat

Super Moderator
I feel soooooo left out! :cry: :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:
 
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:
 
Location
Canada
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!
 
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.
 
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).
 

Tesscorm

Moderator
Staff member
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. :)
 
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
 

Tesscorm

Moderator
Staff member
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:
 
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.
 
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.
 
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!
 
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!
 
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!
 
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.
 
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!
 
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.
 
: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

Moderator
Staff member
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:
 
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!
 
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

Moderator
Staff member
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:
 
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

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

Tesscorm

Moderator
Staff member
Thanks for jumping in MLP!! I wasn't aware that freezing would damage the shakes! :eek:

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. :)
 
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.
 
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!
 
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.
 
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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.
 
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my little penguin

Moderator
Staff member
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

Moderator
Staff member
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/products/Product.aspx?ProductId=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! :)
 
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,

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/products/Product.aspx?ProductId=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)
 
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!!!!
 

David

Co-Founder
Staff member
Location
Naples, Florida
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.
 

Tesscorm

Moderator
Staff member
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:
 

David

Co-Founder
Staff member
Location
Naples, Florida
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.
 

Tesscorm

Moderator
Staff member
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. :)
 
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.
 
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.
 
Location
Canada
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!
 
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.
 
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!
 

my little penguin

Moderator
Staff member
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
 

Tesscorm

Moderator
Staff member
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).
 
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.
 
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.
 
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.
 
http://www.naspghan.org/user-assets/Documents/pdf/PositionPapers/Use_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.
 
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?
 

my little penguin

Moderator
Staff member
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.
 
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.
 
Location
Canada
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. :eek:
 

CarolinAlaska

Holding It Together
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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