Kids on Enteral Nutrition

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

Dusty. :heart:
 
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.
 
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.
 
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.
 
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
 
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!
 
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
 
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.
 
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.
 
Ben's Rn, V has used Pediasure Peptide for nearly five years.
Please expound, and cite studies to support your radical claim.
Many thanks.
 
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
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From:
http://m.ajpgi.physiology.org/content/292/3/G829.full
 
imaboveitall

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

David has a lot of knowledge on this subject.


:ghug:
 
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!
 
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.
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From:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1242073/
 
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.
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From:
http://www.tandfonline.com/doi/abs/10.1080/02652038909373801
 
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
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From:
http://cds.ismrm.org/ismrm-2003/1324.pdf
 
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.
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Carrageenan Induces Cell Cycle Arrest in Human Intestinal Epithelial Cells in Vitro1–3



From:
http://m.jn.nutrition.org/content/138/3/469.short
 
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!
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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.
 
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!
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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...
 
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...
 
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...
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Fabulous! Is she enjoying food like never before?
 
Twiggy930 said:
Fabulous! Is she enjoying food like never before?
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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... :(
 
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
 
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.
 
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.
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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.
 
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
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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.
 
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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
 
Thanks Twiggy
The one I like is the study from the WHO with baboons on formula only--
No issues found at autopsy .
 
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:
 
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>>>
 
LJS
I'm so glad you firgered it out.
Someday you'll be the one helping others with advice about this.
Hang in there.
 
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!
 
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.
 
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!
 
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).
 
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
 
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!
 
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.
 
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.
 
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
 
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.
 
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.
 
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?!?!?
 
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!!! :D
 
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.
 
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.
 
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!
 
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!
 
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.
 
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!
 
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
 
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
 
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?
 
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.
 
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.
 
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.
 
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.
 
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.
 
: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.
 
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.
 
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.
 
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.
 
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.
 
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.
:)
 
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
 
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.
 
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. :)
 
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 .
 
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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