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05-15-2012, 10:03 AM   #1
Mom2oneboy
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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 . 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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Shelley
11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
05-15-2012, 10:57 AM   #2
momoftwinboys
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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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Son (age 13) dx Crohn's October 2011 (age 10)
Azathioprine 10/2011-11/2012
Remicade October 2012
krill oil, multivitamin, liquid Vitamin D/Calcium/Magnesium, zinc, pro-thera complete probiotic.

"The decision to have a child is to accept that your heart will forever walk about outside of your body" Katherine Hadley
05-15-2012, 11:03 AM   #3
Tesscorm
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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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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil

Last edited by Tesscorm; 05-16-2012 at 08:27 AM.
05-15-2012, 11:12 AM   #4
Mom2oneboy
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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.
05-15-2012, 11:22 AM   #5
Mom2oneboy
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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!
05-15-2012, 11:31 AM   #6
Tesscorm
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Still annoyed I was never able to get the videoclip to you!! 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!

" Would love to continue doing this with our son until he's married . " Me too!!
05-15-2012, 12:30 PM   #7
crohnsinct
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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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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
05-15-2012, 12:41 PM   #8
Farmwife
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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.
Farmwife
05-15-2012, 01:40 PM   #9
Tesscorm
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Crohnsinct,

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

This is the link to Stephen's Tolerex

http://www.nestle-nutrition.com/prod...8-90eaf6a5556f


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/hea...ages/FAQs.aspx
05-15-2012, 03:48 PM   #10
crohnsinct
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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

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

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.
05-15-2012, 03:58 PM   #11
imaboveitall
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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.
__________________
VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
05-15-2012, 05:10 PM   #12
my little penguin
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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.
05-15-2012, 08:13 PM   #13
LilyRose
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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
05-15-2012, 08:39 PM   #14
crohnsinct
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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.
05-15-2012, 09:10 PM   #15
my little penguin
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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.
05-15-2012, 09:27 PM   #16
crohnsinct
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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

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.
05-15-2012, 09:35 PM   #17
Mom2oneboy
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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
05-15-2012, 09:44 PM   #18
crohnsinct
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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!
05-15-2012, 09:53 PM   #19
Mom2oneboy
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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?
05-15-2012, 09:58 PM   #20
crohnsinct
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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.
05-15-2012, 10:09 PM   #21
Mom2oneboy
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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!
05-16-2012, 08:06 AM   #22
Tesscorm
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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???
05-16-2012, 08:36 AM   #23
crohnsinct
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[QUOTE=Tesscorm;447215]
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.
05-16-2012, 08:39 AM   #24
Tesscorm
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Yeah, it's disappointing when you think all is well and then I hope the meet goes well and that the problems quickly disappear!
05-16-2012, 10:27 AM   #25
Twiggy930
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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.

We would definitely go with EN over pred in the future!
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
05-17-2012, 04:01 PM   #26
DustyKat
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I feel soooooo left out!

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

Dusty.
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Mum of 2 kids with Crohn's.
05-17-2012, 08:25 PM   #27
crohnsinct
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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.

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
05-17-2012, 10:09 PM   #28
Twiggy930
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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!
05-18-2012, 02:43 AM   #29
izzi'smom
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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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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
05-25-2012, 06:06 PM   #30
Mom2oneboy
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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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