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Crohn's Disease Forum » Parents of Kids with IBD » Enteral Nutrition/EEN Club


08-24-2013, 06:53 AM   #1
DustyKat
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Join Date: May 2010
Location: New South Wales, Australia
Enteral Nutrition/EEN Club

This is a place to provide information for other parents about you and your child's experiences with EN/EEN (Enteral Nutrition/Exclusive Enteral Nutrition).

It is also an area to ask questions and please bear in mind that there is no such thing as a dumb question. If you haven't found an answer to what you are seeking then there is every likelihood that it has never been asked and therefore you won't be alone in wanting to know, so ask away!

This is a list of questions for those parent's that have travelled the EN/EEN path and hopefully by answering them newbies to the treatment will have many, if not all, of their questions answered.

1. Why was your child commenced on EN/EEN?

2. Did the GI initiate the treatment or did you have to ask?

3. Does your child have Crohn's disease or Ulcerative Colitis?

4. Was the initial treatment done orally, by NG tube (Naso Gastric) or Gastrostomy tube/button?

5. What was the reason for the method chosen?

6. How long did the initial treatment period last?

7. What formula was used?

8. How much was required to be consumed in a 24 hour period and how did you achieve this?

9. If treatment was done orally was there anything you did that made the formula more palatable?

10. If done via NG tube did you or your child change the tube? Was the tube in permanently or reinserted on a daily basis and what size was used?

11. Did your child have any adverse/allergic reactions? If so what were they and how was it dealt with?

12. After completion of the initial treatment period was the nutrition continued in any way?

13. If yes, was the same formula used or did it change?

14. If treatment was done as EEN was your child allowed anything orally during the day aside from water and how was food reintroduced at the end of the initial treatment?

15. Did your child take any prescribed medications in conjunction with EN/EEN. If so what were they?

16. Did EN/EEN work for your child?

17. If it didn't work why is that?

18. How was the treatment monitored for success (i.e. what tests/observations and how often)?

19. How was the cost of the formula covered?

20. How was the cost of the required equipment covered?

21. How do you feel your child coped with EN/EEN? Was compliancy ever an issue?

22. Any other tips or information?

Thank you to those that are able to contribute to gathering of this information and if you think of any other questions that would be useful please let me know and I will add them.

For those wishing additional information please have a look at the Enteral Nutrition forum located here, the Enteral Nutrition article located here in the wiki and this very informative thread about Kids on Enteral Nutrition located here.

Thanks.
Dusty
__________________
Mum of 2 kids with Crohn's.

Last edited by DustyKat; 08-25-2013 at 01:31 AM.
08-24-2013, 09:14 AM   #2
Tesscorm
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Join Date: Jun 2011
Location: Ontario

My Support Groups:
1. Why was your child commenced on EN/EEN?

At diagnosis, we were told EEN was the treatment to induce remission.

2. Did the GI initiate the treatment or did you have to ask?

Initiated by the GI. Although steroids were also mentioned, they were only vaguely mentioned and EEN was strongly encouraged.

3. Does your child have Crohn's disease or Ulcerative Colitis?

Crohn's

4. Was the initial treatment done orally, by NG tube (Naso Gastric) or Gastrostomy tube/button?

NG tube

5. What was the reason for the method chosen?

We weren't given a choice.

6. How long did the initial treatment period last?

6 weeks

7. What formula was used?

Tolerex by Nestle

8. How much was required to be consumed in a 24 hour period and how did you achieve this?

2000 ml, 3000 calories.

Stephen ingested the formula overnight, would run the pump at 200-250 ml/hr. At 200 ml/hr, it would take 10 hours to run. This was a bit of an issue - while the pump stand was mobile, he found it annoying to have to move it from room to room. Also, late nights (ie hockey games, etc.) meant that it was tough to fit in 10 hours of formula - in these situations, I either let him skip first period at school, or he ran the pump for an hour or so after school reducing the amount needed overnight, or he sped up the pump to 250-275 ml/hr.

9. If treatment was done orally was there anything you did that made the formula more palatable?

na

10. If done via NG tube did you or your child change the tube? Was the tube in permanently or reinserted on a daily basis and what size was used?

Stephen was taught how to insert/remove the tube while still inpatient. The nurse explained and did it for him once or twice, then talked him through it while he inserted the tube himself a few more times. He didn't have much difficulty in learning the insertion and was very comfortable doing it within a few days. Within a week, it literally took him seconds to insert the tube (and even less to remove).

He inserted tube each evening and removed it in the morning.

Tube size was 6-Fr.

11. Did your child have any adverse/allergic reactions? If so what were they and how was it dealt with?

None

12. After completion of the initial treatment period was the nutrition continued in any way?

Yes, after the six week exclusive period, food was reintroduced but he continued with EN on a supplemental basis - 1/2 the dosage (1000 ml/1500 cal), 5 nights per week. In total, EEN and EN was used for 2 years.

13. If yes, was the same formula used or did it change?

Same formula.

14. If treatment was done as EEN was your child allowed anything orally during the day aside from water and how was food reintroduced at the end of the initial treatment?

He was allowed clear fluids throughout the exclusive period - broth, clear juice/fruit drinks (no fibre), clear pop (no coke/pepsi), freezies or popsicles (no chocolate), gummies, jello, gatorade.

Food was reintroduced in stages, with each stage lasting 4-5 days (or longer, if necessary).

Stage 1 - 'white' foods - bread (any type), rice, potatoes, pasta, plain cereal like rice krispies (no milk). He was allowed to use just a small amount of toppings like butter, cream cheese, tomato sauce (no pieces of anything... almost like tomato juice).

Stage 2 - proteins - any type but I stuck with chicken, eggs, fish

Stage 3 - fruits/veggies - soft or cooked, no skins, seeds or membranes (skin around orange segments)

Stage 4 - dairy - low fat

Stage 5 - all else as tolerated

15. Did your child take any prescribed medications in conjunction with EN/EEN. If so what were they?

Nexium (antacid). When the tube is inserted, it leaves the 'flap' between stomach and esophagus slightly open, this allows acid to escape. He sometimes felt heartburn when using the tube. Also, as he ingested his formula overnight, this was probably more likely to happen as he was laying flat while ingesting the formula.

16. Did EN/EEN work for your child?

It worked very well and quickly for Stephen. When being diagnosed, he was in the hospital for a week receiving flagyl through IV so this may have played a part as well. But, prior to diagnosis he was having on/off again symptoms every few days (fevers, diarrhea, loss of appetite, back aches, fatigue, night sweats), literally, within days all the symptoms were gone. He started EEN on a Sunday, discharged Tuesday and back at school the following Monday. When he returned to school, he returned to two phys.ed. classes (2+ hours per day) plus playing on his two hockey teams. He certainly started at a slower pace but was back at 90% within a month or so. It took a few months, though, for him to regain all his stamina, endurance and muscle.

His CRP went from 136 to 7 over the six week exclusive period and his ESR went from 26 to 9.

He remained in clinical remission and had only minor symptoms that passed quickly, without additional meds for two years.

He had lost approx. 25 lbs prior to diagnosis, he regained 10 lbs during the six week period and, once food was added back, gained another 20 lbs over the next 6 weeks. In the 2 years since he began EEN/EN, he has gained almost 50 lbs. and approx. 1 inch in height.

HOWEVER, his CRP and ESR did begin to slowly creep up after food was introduced and, after 18 months, MREs continued to show some inflammation.

17. If it didn't work why is that?

The supplemental EN was able to keep his crohns under control but not enough to eliminate all inflammation. When he transferred to an adult GI, his new GI was concerned about the inflammation and added remicade.

18. How was the treatment monitored for success (i.e. what tests/observations and how often)?

Appointments and labwork every three months and MREs every six months.

19. How was the cost of the formula covered?

Local medical agency - insurance did not cover it.

20. How was the cost of the required equipment covered?

Local medical agency - insurance did not cover it.

21. How do you feel your child coped with EN/EEN? Was compliancy ever an issue?

Some minor issues at the beginning - sensation of the tube was bothersome (not painful), noise of the pump annoying. The time required during EEN (10 hours) was restrictive and interfered with his schedule. Other than that, he coped fairly well. Stephen was 16 and understood the need to comply and, as it was done overnight, most was done while sleeping. As for sleepovers, he just invited his friends to sleep here so he could still run the formula overnight.

22. Any other tips or information?

Stephen's age was a factor in his acceptance, compliance and dosage of EEN treatment; he was 16, almost 17, when diagnosed. At the time of diagnosis, he was 120-125 lbs, after having lost 20-25 lbs. and was approx. 5'10".

The broth was a huge help during the exclusive period! It allowed him to have something warm and savoury (compared to all else that was 'sweet'). I tried to add 'variety' by heating up the broth with various spices and then strained it. I purchased organic broth - did try to make homemade but was always worried because it was never as 'clear' as the store bought. I arranged with the school to keep freezies available for him and sent him broth to have at lunch with friends.

Some people find that using one nostril is easier than the other - Stephen used the same side for all of the two years and using the same side didn't cause an issue.

Getting the tube past the gag reflex is the toughest part - at the beginning, I would hold a glass of water for him and he would drink the water through a straw while inserting the tube - when drinking the water, he would, in essence, swallow the tube. There are also numbing gels that can be used to help insert the tube (S never used it so not sure how well they work).

Also, while this doesn't happen to everyone, Stephen had diarrhea throughout the six week exclusive period. He had no urgency issues or pain, just the d. Dietitien had warned us this sometimes happens... liquid in, liquid out (her words ).
__________________
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; 08-26-2013 at 08:29 PM.
08-24-2013, 11:59 AM   #3
Amy2
Senior Member
 
Join Date: Mar 2013
Location: Lafayette, Colorado

My Support Groups:
[B]Why was your child commenced on EN/EEN?

We were given 2 choices: Steroids or EN. We chose EN until I found this board and my son began EEN against doctor's advice.

2. Did the GI initiate the treatment or did you have to ask?

Doc wanted my son to eat food, too. Up to 20% of his calories in food.

3. Does your child have Crohn's disease or Ulcerative Colitis?

Crohn's.

4. Was the initial treatment done orally, by NG tube (Naso Gastric) or Gastrostomy tube/button?

They tried the tube, but the nurses were really bad at it and literally tortured my son.

5. What was the reason for the method chosen?

They told us 99% of kids failed drinking it, so we thought the tube was the only way.
In hind sight, drinking it had advantages.

6. How long did the initial treatment period last?

6 weeks exactly. Then he tapered off Peptamen over 3 - 5 days, I think.

7. What formula was used?
Peptamen 1.5 with pre bio, vanilla flavor.

8. How much was required to be consumed in a 24 hour period and how did you achieve this? 8 per day. Son drank them over ice and said they tasted like a bad iced coffee, but he grew to like them, actually.

9. If treatment was done orally was there anything you did that made the formula more palatable? Pouring the room temp Peptamen over ice, watered it down enough that he could drink them. He added water and ice to cold ones.

10. If done via NG tube did you or your child change the tube? Was the tube in permanently or reinserted on a daily basis and what size was used? N/A

11. Did your child have any adverse/allergic reactions? If so what were they and how was it dealt with?
No.

12. After completion of the initial treatment period was the nutrition continued in any way? No, because they were not SCD legal.

13. If yes, was the same formula used or did it change?
N/A

14. If treatment was done as EEN was your child allowed anything orally during the day aside from water and how was food reintroduced at the end of the initial treatment?
No food during EEN. When the six weeks was up, my son ate 25% food, dropped 25% Peptamen, did that again a couple days later, so it was 50/50, 75/25 etc.

15. Did your child take any prescribed medications in conjunction with EN/EEN. If so what were they? Pentasa 3 xs a day.

16. Did EN/EEN work for your child?
Yes.

17. If it didn't work why is that? N/A

18. How was the treatment monitored for success (i.e. what tests/observations and how often)? Saw doc at 3 weeks, 2 mo, 3 mo. and was told we can now wait 6 mo, as my son is mostly symptom free and his blood work and FCP test was normal.

19. How was the cost of the formula covered?
First, we paid for 100% of it. $64 per day X 45 days + additional Peptamen he drank before doing the exclusive 6 weeks. But, our insurance agreed to pay 80% AND 100% later (depending on who we talked to). We still aren't sure which it will be 5 months later!

20. How was the cost of the required equipment covered? N/A

21. How do you feel your child coped with EN/EEN? Was compliancy ever an issue?
He handled it like a champ. Never wavered, but enjoyed food so much, when he finally got to eat!!!

22. Any other tips or information?

Son had 3 day coarse of steroids in the hospital before starting EN, then EEN, which didn't give him any negative side effects, and may have saved his life.
I have to give some credit for his remission to those steroids.
__________________
Three passions, simple but overwhelmingly strong, have governed my life: the longing for love, the search for knowledge, and unbearable pity for the suffering of mankind. Bertrand Russell
08-24-2013, 09:12 PM   #4
CarolinAlaska
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Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
1. Why was your child commenced on EN/EEN?

She was first diagnosed with Crohn's and our doctor wanted to start her on prednisone and it scared us... I read that EEN is especially good for children who had failed to reach puberty and were severely underweight.2. Did the GI initiate the treatment or did you have to ask?

We had to ask

3. Does your child have Crohn's disease or Ulcerative Colitis?

Crohn's

4. Was the initial treatment done orally, by NG tube (Naso Gastric) or Gastrostomy tube/button?

We started with an inpatient visit to get trained on the NG tube - it was a nightmare with nurses trying to painfully shove the NG tube down her nose and traumatized her to the point that she eventually refused it. She tried for 3 weeks to drink it orally, and did well until she became intolerant to the Ensure, then she allowed herself to be put under general anesthesia to get the NG tube placed.

5. What was the reason for the method chosen?

See #4. After 5 weeks the initial induction time was over. The GI wanted her to go with a G-tube after that instead of having to put in an NG every 4-5 weeks under general anesthesia. She eventually found a mixture of formulas she could tolerate the taste and her body could tolerate for most of the summer. She needed the continued nutritional therapy.

6. How long did the initial treatment period last?

8 weeks

7. What formula was used?

Initially Ensure orally, then Peptamen Junior by NG tube, then Ensure Plus and Peptamen Junior mixed 1:1 orally

8. How much was required to be consumed in a 24 hour period and how did you achieve this?

I think we did about 8 cans/day initially, then ended up in the end with 6 cans/day - it might have more specifics on my blog

9. If treatment was done orally was there anything you did that made the formula more palatable?

Room temperature, dark chocolate or vanilla flavor only - believe me we tried a lot of flavors and ways to make it, and this was the only way - now she likes it with chocolate syrup or orange juice since she can have those things again

10. If done via NG tube did you or your child change the tube? Was the tube in permanently or reinserted on a daily basis and what size was used?

Six French, one insertion

11. Did your child have any adverse/allergic reactions? If so what were they and how was it dealt with?

Abdominal pains, horrible gas smells, loose stools on Ensure alone, these got much better going with the predigested formula

12. After completion of the initial treatment period was the nutrition continued in any way?

Yes, she continues on it now. It was very slow adding in foods but got to where she could eat most everything and was continuing the oral supplementation until she got sick about 3-4 weeks ago. She's trying to get back on them now as she's lost 6 lbs since going off

13. If yes, was the same formula used or did it change?

We had to change because she couldn't drink the plain Peptamen Junior nor the Ensure. We tried several, but ended up on a mixture

14. If treatment was done as EEN was your child allowed anything orally during the day aside from water and how was food reintroduced at the end of the initial treatment?

She could have one hard candy and one piece of gum. The reintroduction of food was adding one new food every 3 days or so, but was accumulative (once a food was tolerated, it could stay in the options). She started with vegetable broths, then rice, then meat broths, then cooked veggies and so forth, then went to solid meats and lastly fresh fruits and veggies. She didn't have corn or peelings until later.

15. Did your child take any prescribed medications in conjunction with EN/EEN. If so what were they?

Only vitamin D at first. After the induction, she started 6MP.

16. Did EN/EEN work for your child?

Absolutely. She gained 20 lbs, overcame her abdominal pains, fatigue, joint pains, etc. By the middle of the summer she was playing a full soccer game without having to stop due to pain or fatigue


17. If it didn't work why is that? N/A

18. How was the treatment monitored for success (i.e. what tests/observations and how often)? Blood work - CBC, CMP, CRP every 2 weeks, Fecal Calprotectin at start, after the 8 weeks induction, and again once about a month or two later

19. How was the cost of the formula covered?

We have both full coverage insurance and medicaid (secondary). We've also done a fair share on our own from the store

20. How was the cost of the required equipment covered?

Our primary insurance covered this quite well

21. How do you feel your child coped with EN/EEN? Was compliancy ever an issue?

Definitely an issue. We had to take some time and wait for her to come around a couple of times, and tried to keep her in the decision making loop as much as possible. She won't do the NG tube or G-tube, and this makes the choices of how much she can get in and how to give it limited. She doesn't always drink as much as she is supposed to

22. Any other tips or information?

We ended up paying a dollar a day for finishing all her drinks and her giving up not only the dollar but the next day's use of electronics if she didn't drink it all, and this was effective for a time.
__________________
Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
08-26-2013, 04:10 PM   #5
EthanClark
Senior Member
 
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Join Date: Oct 2012
Location: Provo, Utah

My Support Groups:
1. Why was your child commenced on EN/EEN?
To treat Crohn's disease

2. Did the GI initiate the treatment or did you have to ask?
Had to ask

3. Does your child have Crohn's disease or Ulcerative Colitis?
Crohn's

4. Was the initial treatment done orally, by NG tube (Naso Gastric) or Gastrostomy tube/button?
NG tube for 12 weeks, then G tube for 8 weeks then mickey button

5. What was the reason for the method chosen?
NG tube because he wouldn't drink them, G tube because we were continuing treatment after the initial 3 months and mickey button because of the low profile.

6. How long did the initial treatment period last?
12 weeks then 8 weeks, tried to reintroduce foods without success. He is still on EEN no foods a this time. It has been almost 9 months.

7. What formula was used?
Peptamen JR.

8. How much was required to be consumed in a 24 hour period and how did you achieve this?
1200ml. We run his pump at night for 10 hours at 120ml an hour.

9. If treatment was done orally was there anything you did that made the formula more palatable?
If it tasted better

10. If done via NG tube did you or your child change the tube? Was the tube in permanently or reinserted on a daily basis and what size was used?
Permanently inserted. We change the tube every 4 weeks for the first 3 months. Size 6french

11. Did your child have any adverse/allergic reactions? If so what were they and how was it dealt with?
First night the formula was flowing too fast. He ended up throwing up all the formula and the tube. we had to reinsert the tune the next day. We found warming up the formula in warm water and starting off a lot slower helped the problem.

12. After completion of the initial treatment period was the nutrition continued in any way?
He is still on EEN

13. If yes, was the same formula used or did it change?
Same formula

14. If treatment was done as EEN was your child allowed anything orally during the day aside from water and how was food reintroduced at the end of the initial treatment?
otter pops, chicken broth and clear liquids, jello, hard candies and suckers

15. Did your child take any prescribed medications in conjunction with EN/EEN. If so what were they?
No

16. Did EN/EEN work for your child?
Yes. Wonderfully. He gained 10 lbs total, all symptoms went away and his ESR went from 68 to 3 in the first 3 months.

17. If it didn't work why is that?
NA

18. How was the treatment monitored for success (i.e. what tests/observations and how often)?
Blood work and regression of all symptoms

19. How was the cost of the formula covered?
insurance

20. How was the cost of the required equipment covered?
insurance

21. How do you feel your child coped with EN/EEN? Was compliancy ever an issue?
It is definitely hard at times, Clark still struggles with not getting to eat. it was and still is hard on our family too. We don't enjoy eating anymore as Clark asks to smell our food because he can't have any. He does understand that food makes him feel sick and that his special milk makes him better though.

22. Any other tips or information?
EEN has been a lifesaver for our son and we have been able to avoid any other drugs up until this time however once food is re introduced most symptoms and inflammation will return.
08-26-2013, 08:04 PM   #6
Farmwife
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Join Date: Apr 2012
Location: Michigan

My Support Groups:
1. Why was your child commenced on EN/EEN?
To bring her diseases into hopeful remission and supply her with the proper nutrients.

2. Did the GI initiate the treatment or did you have to ask?
Had to ask the GI.

3. Does your child have Crohn's disease or Ulcerative Colitis?
Colitis

4. Was the initial treatment done orally, by NG tube (Naso Gastric) or Gastrostomy tube/button?
NG tube

5. What was the reason for the method chosen?
Safer then Steroids (which we still had to do) and she would get her calories from this and hopeful grow.

6. How long did the initial treatment period last?
5 months(?)

7. What formula was used?
Splash EO28

8. How much was required to be consumed in a 24 hour period and how did you achieve this?
1200-1300 cals a day. This was done by drinking it orally and using the tube.

9. If treatment was done orally was there anything you did that made the formula more palatable? NO

10. If done via NG tube did you or your child change the tube? Was the tube in permanently or reinserted on a daily basis and what size was used?
My child was only 4. She helped a lot but I did work of the changing her bags and cleaning. Hers was permanent. Size????I forget but it was a SMALL size.

11. Did your child have any adverse/allergic reactions? If so what were they and how was it dealt with? NO

12. After completion of the initial treatment period was the nutrition continued in any way?
Yes, she had a g-tube inserted.

13. If yes, was the same formula used or did it change?
Same

14. If treatment was done as EEN was your child allowed anything orally during the day aside from water and how was food reintroduced at the end of the initial treatment? NO!

15. Did your child take any prescribed medications in conjunction with EN/EEN. If so what were they? Prednisone for 3 months. Asthma meds.

16. Did EN/EEN work for your child?
YES and it still does.

17. If it didn't work why is that?

18. How was the treatment monitored for success (i.e. what tests/observations and how often)?Regular visits with doctors to check her health. Labs taken every 3 months.

19. How was the cost of the formula covered?
Insurance

20. How was the cost of the required equipment covered?
D.E.M.

21. How do you feel your child coped with EN/EEN? Was compliancy ever an issue?
She did great.

22. Any other tips or information?

My girl still had to do a round of steroids to help bring her into remission.
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
08-27-2013, 09:49 AM   #7
Jmrogers4
Moderator
 
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Why was your child commenced on EN/EEN? Lack of growth and weight gain

2. Did the GI initiate the treatment or did you have to ask? GI

3. Does your child have Crohn's disease or Ulcerative Colitis? Crohn's

4. Was the initial treatment done orally, by NG tube (Naso Gastric) or Gastrostomy tube/button? Orally, but it took about a week or two to get him to full compliance and not gagging over the sink and 2 hours to drink one.

5. What was the reason for the method chosen? He absolutely did not want NG tube, was worried about it being in all the time and not able to play baseball and didn't think he could take it in and out each day

6. How long did the initial treatment period last? 8 weeks

7. What formula was used? Peptide

8. How much was required to be consumed in a 24 hour period and how did you achieve this? 64 ounces, he drank 8 - 8oz bottles a day spread out throughout the day

9. If treatment was done orally was there anything you did that made the formula more palatable? Started in a cup w/lid and straw, made sure it was cold, he got used to the taste after a week or so and was able to drink them quickly out of the bottle after that

10. If done via NG tube did you or your child change the tube? Was the tube in permanently or reinserted on a daily basis and what size was used?

11. Did your child have any adverse/allergic reactions? If so what were they and how was it dealt with? Started with Ensure and always had a tummyache after but once switched to Peptide

12. After completion of the initial treatment period was the nutrition continued in any way? Still drinks 1-2 a day, will increase based on appetite, if he is not eating a lot will increase number of shakes a day so that he is always getting roughly 2500 calories

13. If yes, was the same formula used or did it change? We were able to change to a non semi-elemental formula for maintenance, have tried several brands - Kids Boost Essential, Pediasure, Boost

14. If treatment was done as EEN was your child allowed anything orally during the day aside from water and how was food reintroduced at the end of the initial treatment? Was not done as EEN, he was allowed about 10-20% of calories from food

15. Did your child take any prescribed medications in conjunction with EN/EEN. If so what were they? He was on LDN and Pericatin (to increase appetite)

16. Did EN/EEN work for your child? Yes, he gained 23 pounds in 8 weeks

17. If it didn't work why is that?

18. How was the treatment monitored for success (i.e. what tests/observations and how often)? Nightly and then weekly weight checks, with GI visit at start and end of 8 weeks

19. How was the cost of the formula covered? Insurance covered 80% until I reached my deductible then it was 100%

20. How was the cost of the required equipment covered?

21. How do you feel your child coped with EN/EEN? Was compliancy ever an issue? Was a plan and accountability in place he complied but was never truly happy about it, the first 2 weeks were a battle and he was not drinking them at school like he was supposed to but once he had to account for drinking them all was well

22. Any other tips or information?
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-19-2014, 09:02 AM   #8
Lady Organic
Forum Monitor
 
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Thank you for sharing.

One tip for orally intake of EN if the taste is bad : Use a ''swimming nose-pinch''. Drink with a straw and take 2 sips of water with a straw in another glass before removing the nose-pinch. This helps TREMEDOUSLY for orally intake in reducing the bad taste. Im trying Vivonex, same family as Tolerex. Its unflavoured and taste is dreadful.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
06-17-2015, 11:07 PM   #9
Lizknits99
 
Join Date: Jun 2015
Location: Sydney, New South Wales, Australia

My Support Groups:
1. Why was your child commenced on EN/EEN?
It was the option that was recommended to us. Steriods mentioned but very much downplayed.

2. Did the GI initiate the treatment or did you have to ask?
It was presented to us

3. Does your child have Crohn's disease or Ulcerative Colitis?
Crohns

4. Was the initial treatment done orally, by NG tube (Naso Gastric) or Gastrostomy tube/button?
He is taking orally, a bit scared of NG

5. What was the reason for the method chosen?
Easiest

6. How long did the initial treatment period last?
We are only on Day 8 of 8 week treatment

7. What formula was used?
Nestle Fortisip

8. How much was required to be consumed in a 24 hour period and how did you achieve this?
He is supposed to have 1800ml but is not yet managing this amount. We are taking each day as it comes

9. If treatment was done orally was there anything you did that made the formula more palatable?
Very cold, keep the foil seal on the top and just punch the straw through to reduce the smell and taste. Only Chocolate palatable (barely) at the moment.

10. If done via NG tube did you or your child change the tube? Was the tube in permanently or reinserted on a daily basis and what size was used?
N/A

11. Did your child have any adverse/allergic reactions? If so what were they and how was it dealt with?
Only no poop for 5 days.

12. After completion of the initial treatment period was the nutrition continued in any way?
We don't know this yet.

13. If yes, was the same formula used or did it change?
N/a

14. If treatment was done as EEN was your child allowed anything orally during the day aside from water and how was food reintroduced at the end of the initial treatment?
Water only and sugar free gum (4 pieces).

15. Did your child take any prescribed medications in conjunction with EN/EEN. If so what were they?
Nexium but this was before treatment started. Dupholac

16. Did EN/EEN work for your child?
We are waiting to see

17. If it didn't work why is that?
N/A

18. How was the treatment monitored for success (i.e. what tests/observations and how often)?
We have our first clinic visit next week. Bloods will be taken prior to this.

19. How was the cost of the formula covered?
Out of Pocket expenses

20. How was the cost of the required equipment covered?
N/A

21. How do you feel your child coped with EN/EEN? Was compliancy ever an issue?
My son is really struggling with the treatment. He is really trying, we all understand how difficult it would be so he is getting lots of support but this doesn't help much when you still have to do the hard yards.

22. Any other tips or information?
I'm looking to any tips or information on how to keep him compliant especially over the school holidays and a family holiday away.
06-18-2015, 11:01 AM   #10
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
1. Why was your child commenced on EN/EEN?

We were trying to induce remission without steroids, while waiting for Remicade to start working. Also, E was very underweight, and her doctor was concerned that no medicine would work as long as her she was so malnourished.

2. Did the GI initiate the treatment or did you have to ask?

Her GI initiated the treatment. I was initially resistant, because I thought E wouldn't be able to tolerate an NG tube.

3. Does your child have Crohn's disease or Ulcerative Colitis?

Crohn's

4. Was the initial treatment done orally, by NG tube (Naso Gastric) or Gastrostomy tube/button?

We tried orally first, but E couldn't drink more than a few sips, so she had an NG tube placed at the hospital. We had to stay for 3 days so she could be monitored for refeeding syndrome, since she was very malnourished.

5. What was the reason for the method chosen?

see previous question

6. How long did the initial treatment period last?

8 weeks of 90% EN followed by 2 weeks of 50% EN

7. What formula was used?

Peptamen 1.5

8. How much was required to be consumed in a 24 hour period and how did you achieve this?

The goal was 2000 calories a day of formula. E could only tolerate a flow rate of 60 ml/hr, so we had to run the pump 22 hours a day. She also was allowed to eat 200 calories a day of regular food. We tried to choose the foods from the first stages of the IBD-AID diet.

9. If treatment was done orally was there anything you did that made the formula more palatable?

n/a

10. If done via NG tube did you or your child change the tube? Was the tube in permanently or reinserted on a daily basis and what size was used?

The tube was not changed during the initial 10 week period (except for once when it clogged during a hospital stay), and it was an 8-fr tube. Now she does supplemental EN at night, and she puts the tube in herself each night. She uses a 6-fr tube now.

11. Did your child have any adverse/allergic reactions? If so what were they and how was it dealt with?

She started with Peptamen Jr. 1.5, but had cramping and nausea due to the prebiotic ingredient. She had to switch to adult Peptamen 1.5. Also, she had nausea any time we tried a flow rate over 60 ml/hr. Finally, they tried using Nutren 2.0 during a hospital stay, and it led to a tube clog that couldn't be cleared, so she had to get a new tube inserted.

12. After completion of the initial treatment period was the nutrition continued in any way?

Yes, she's doing supplemental EN of 1200 calories per night.

13. If yes, was the same formula used or did it change?

Still Peptamen 1.5

14. If treatment was done as EEN was your child allowed anything orally during the day aside from water and how was food reintroduced at the end of the initial treatment?

Yes, she could eat 200 calories a day of regular food. Her doctor said it could be anything, but we tried to keep it to foods from the first stages of the IBD-AID diet, to avoid causing inflammation. During the last two weeks of EN, we added 50% food, still using the IBD-AID diet guidelines. When we stopped EN completely, she started having more cramping and diarrhea, so we added back supplemental EN.

15. Did your child take any prescribed medications in conjunction with EN/EEN. If so what were they?

She had already had the first 2 loading doses of Remicade. Two weeks in, budesonide and methotrexate were added.

16. Did EN/EEN work for your child?

It wasn't enough to induce remission on its own, but I do think it helped to reduce her inflammation and absorb nutrition so that the other medicines could work. She also gained 20 pounds in 4 months while on EN.

17. If it didn't work why is that?

I think she was just really sick, so she needed a combo of EEN and medication.

18. How was the treatment monitored for success (i.e. what tests/observations and how often)?

Blood inflammation markers, symptoms, and weight. Her sed rate went from 71 to 15 while on EEN, and CRP went down to normal levels too. Her abdominal pain, nausea and diarrhea went away, and she gained weight steadily.

19. How was the cost of the formula covered?

100% covered by insurance.

20. How was the cost of the required equipment covered?

100% covered by insurance

21. How do you feel your child coped with EN/EEN? Was compliancy ever an issue?

She was very upset about it beforehand, but after a few days of discomfort with the tube, she hardly noticed it being in. She still complained about it, but it wasn't as bad as we expected it to be. It helped that she was homeschooled this spring, so she didn't have to see other kids (except her best friends) while the tube was in.

E is a very sensitive and anxious kid, so if she could handle an NG tube, I feel like most kids probably could.

22. Any other tips or information?

Try not to use the NG tube as a threat while trying oral EN. If you end up having to use a tube, you don't want it to seem like a punishment. Treat the tube as just another option that's out there.

There's a good youtube video in which a teen shows how she inserts her NG tube. That gave my daughter confidence to try doing her own insertions. She can insert it very easily and quickly now.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

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

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
12-07-2016, 12:28 AM   #11
Mummy1974
 
Join Date: Jun 2016

My Support Groups:
1. Why was your child commenced on EN/EEN? They couldn't get his Crohn's in to remission (diagnosed age 3) and medications weren't working. We ended up in hospital for a week of IV's then started EEN.
2. Did the GI initiate the treatment or did you have to ask? GI
3. Does your child have Crohn's disease or Ulcerative Colitis? Crohn's
4. Was the initial treatment done orally, by NG tube (Naso Gastric) or Gastrostomy tube/button? Orally
5. What was the reason for the method chosen? He tolerated the full required volume
6. How long did the initial treatment period last? 8 weeks
7. What formula was used? Fortini
8. How much was required to be consumed in a 24 hour period and how did you achieve this? 1000mls
9. If treatment was done orally was there anything you did that made the formula more palatable? KEEP IT COLD, gently heat the chocolate one to make hot chocolate, freeze in to lots of different ice lolly shapes, ice cubes etc.
10. If done via NG tube did you or your child change the tube? Was the tube in permanently or reinserted on a daily basis and what size was used? n/a
11. Did your child have any adverse/allergic reactions? If so what were they and how was it dealt with? No
12. After completion of the initial treatment period was the nutrition continued in any way? He's just finished and will continue on maintenance EN for the near future
13. If yes, was the same formula used or did it change? Same
14. If treatment was done as EEN was your child allowed anything orally during the day aside from water and how was food reintroduced at the end of the initial treatment? NO! Water and occasional sugar free gum if he needed to chew
15. Did your child take any prescribed medications in conjunction with EN/EEN. If so what were they? They tried Azathioprine but it made him extremely extremely ill. Didn't start anything else in case he reacted... they wanted to make sure he could fully benefit from the EEN.
16. Did EN/EEN work for your child? Partially. We're just finishing and his perianal disease has calmed down, he's put on a small amount of weight (0.5kg), his orofacial problems have improved and he's certainly had more energy. But, he's only had a few really good days in the 8 weeks and over the last 4 weeks has been getting more and more exhausted. His facial stomatitis is coming back, he's getting joint pain again, and is having trouble sleeping.
17. If it didn't work why is that? No idea.
18. How was the treatment monitored for success (i.e. what tests/observations and how often)? Frequent review, weigh ins.
19. How was the cost of the formula covered? Fully government subsidised
20. How was the cost of the required equipment covered? n/a
21. How do you feel your child coped with EN/EEN? Was compliancy ever an issue? He started it when he was 3, had it over his birthday (frozen Fortini train cake!) and was a total legend throughout. Never complained, never refused, never questioned.
22. Any other tips or information? Rewards for doing well, not eating around them, having meals in shifts if you can so that someone stays with them, don't forget to take them EVERYWHERE.

12-07-2016, 02:21 PM   #12
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
Mummy1974: Now that your son has completely his 8 weeks of EEN, is there a plan to try a different maintenance medicine, such as Remicade or Humira? It sounds like while the EEN helped a little, your son is still struggling.
12-07-2016, 11:16 PM   #13
Mummy1974
 
Join Date: Jun 2016

My Support Groups:
Mummy1974: Now that your son has completely his 8 weeks of EEN, is there a plan to try a different maintenance medicine, such as Remicade or Humira? It sounds like while the EEN helped a little, your son is still struggling.
Hi pdx, he had bloods done yesterday and his liver enzymes are extremely elevated - 4 times the upper limit of normal. This probably explains his fatigue!!
They have put him back on Flagyl, and were thinking of starting 6MP next. In light of his liver issues I'm not sure they'll risk it as Aza had a terrible impact on his liver and kidneys after 5 doses.
I'm wondering if there is anything in the EEN that he has reacted to. He ate his first meal today and had subsequently had his best, most energetic day in weeks.
I'm waiting to hear back from the his GI as to what they're going to do next. We're feeling very disheartened!

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