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04-30-2012, 04:16 PM   #1
Lilmamma
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Join Date: Apr 2012
Location: Palm Coast, Florida
Considering Enteral feeding

We've been keeping a food diary and I've realized that "A" isn't eating nearly enough to maintain her weight let alone gain any.
At her last visit, she gained 0.2Kg in the past month... I feel like that's splitting hairs. Yes, it's a small amount of weight gain, but when you're already so far behind it doesn't seem like enough. Am I worrying for no reason?
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A(11)~ Chron's Disease (dx 4/24/12), migraines, environmental allergies.
Current Meds: Pred, Zantac, Periactin, Nasonex, Patanol, Multi Vitamin, Azathioprine, calcium

J(12)~ multiple severe food allergies, severe chronic eczema

M(5)~ multiple severe food allergies, mild eczema
04-30-2012, 05:52 PM   #2
happy
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Hi Lilmamma,
Is her weight appropriate for her height and is her height appropriate for her age? I noticed in your other thread that a nutritionist is on your child's team. Discuss your concerns with the nutritionist and your willingness to explore EN.

EN can be given as a sole treatment, as an additional treatment, or just for nutritional purposes. Knowing what your goals would be for the EN is a good place to start.

Also, what does your child think about trying EN? Often when we are losing weight quickly, when we associate food with pain and when we feel really sick, we are more willing to try EN.
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Diagnosed with IBD Sept. 2010
Enteral Nutrition induced remission in August 2011
Maintaining remission on Full Elimination Diet
04-30-2012, 07:35 PM   #3
imaboveitall
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Hey there.
My thoughts on it after close to four years of formula feeding for old V are, WHY NOT provide them max nutrition if it is so readily available? They will have malabsorption, that is certain, to what degree it shall vary of course but why not circumvent that with formula that is easily absorbed?

I like the peace of mind afforded by the feeds, and her weight, muscle tone, and height cannot be argued with. She looks NOTHING like the skinny, undersized and underdeveloped girls her age I saw at IBD camp. If you look at V, you would NEVER think there is a thing wrong with her.
The Saint says that is a direct result of good nutrition secondary to the feeds.
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VIOLET AGED 16

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


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
04-30-2012, 08:51 PM   #4
my little penguin
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Ds is on EN here as well. Just over 1 year for us and at least an 8 pound gain with over 2 years of no gain prior to dx.

He was only recently dx though in the end of sept. GI just knew he should be gaining so why not add an easy fix. We started on Boost kids and are now on pepatmen Jr with prebio.

makes my day easier when he doesn't feel good and doesn't want to eat. He will not argue about drinking his "shakes" since we treat them like meds. They are not negotiable.

I know some do a tube but so far ( knocking on a large pile of wood) Ds has been able to drink his all orally.
04-30-2012, 09:40 PM   #5
Lilmamma
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Join Date: Apr 2012
Location: Palm Coast, Florida
She is 10 yrs old and is 4ft 3.9 inches and weighs 62lbs 6oz.
She's worn the same clothes for 2 years now.
Yesterday, she hardly ate anything. I felt like I had to force her to eat so she could take her steroids. Today is a little bit better, but not by much.
04-30-2012, 10:09 PM   #6
Tesscorm
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Lilmamma, EN has also been my son's treatment. So far, the EN has been enough to 'maintain' him since his diagnosis last May (may not maintain 'remission??' forever but, for now... ). He had lost approx. 20 lbs before diagnosis and within 3 months (six weeks formula only and then just maintenance dosage of formula) he gained 30 lbs.

He does his overnight through NG tube. Worries are always plenty with Crohns, however, the formula truly alleviates all my concerns regarding his nutrition.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
05-01-2012, 05:42 PM   #7
Lilmamma
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Location: Palm Coast, Florida
She says she doesn't care either way about EN.
She does associate eating with pain. Sometimes I can get her to eat maybe 5-6 bites of something before she says she's full. And we can't figure out if there is a specific food that causes her pain because it seems like everything hurts to eat
05-01-2012, 07:16 PM   #8
imaboveitall
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Lilm, that was Violet at dx.
A few bites and a sense of fullness...the med term for it is "early satiety" and it's caused by impaired gastric motility secondary to inflammation.
The formula feeds corrected this straightaway for V. Her motility improved very quickly when feeds were introduced.
05-01-2012, 09:46 PM   #9
Mom2oneboy
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I would highly recommend EN. My son has done it for over a month. Before we started, I was hardly able to get him to eat and he started losing weight quick. The EN did not put him into remission like we had hoped but it stopped the weight loss which is VERY important when they are not feeling well. It has taken a load off of my mind knowing that he's getting nutrition. We have started to introduce food but will continue with the EN in hopes of getting his weight up.
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Shelley
11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
05-02-2012, 07:23 AM   #10
Lilmamma
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Join Date: Apr 2012
Location: Palm Coast, Florida
The Nutritionist is going to call me today about the food diary I sent over. I'm guessing she has a few things to say lol
Thanks for all the advice!
05-02-2012, 09:34 AM   #11
izzi'smom
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We did EN for a month...if she ate little else it helped her symptoms and it did a lot to allay my worries about her weight...she gained and mama didn't have to nag

I would recommend it...I would also do it again if needed (I almost did it again last month but her weight stabilized a bit while inpatient).
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
05-02-2012, 10:34 AM   #12
Twiggy930
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Hey Lilmamma,

My son has been on exclusive EN for 6 weeks now and we are just getting ready to re-introduce food. The EN has not induced remission as we had hoped but I am happy we did it and it certainly helped. Just prior to diagnosis he went from 83 lbs to 66 lbs and, with the help of EN, he is now back at 83 lbs!!! My son has done EN via an NG tube with overnight feeds. My son definitely favors EN over prednisone, and he is saying this as a person who hasn't eaten solid food for 6 weeks!!!

Oh and my son is also still wearing the same clothes from 2 years ago.

Good luck and hang in there!
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

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

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
05-03-2012, 03:49 AM   #13
DustyKat
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You aren't worrying for no reason hun. I have next to no experience with EN here but I do believe that you are well on track by going that way.

Goodluck!

Dusty. xxx
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Mum of 2 kids with Crohn's.
05-03-2012, 06:39 AM   #14
crohnsinct
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Lil - what did the nutritionist say?

We took the plunge and Olivia was oddly excited about it. I think eating was bothering her and she is sick and tired of being tired.

I will keep you posted.

Hey my parents live in Flagler Beach. We go down every August to visit...great area!
05-03-2012, 11:29 AM   #15
S mom
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My son was on exclusive EN via NG tube for 12 weeks this past fall. It made a world of difference for him and although kind of daunting to think of at first, it was worth it - lots of weight gain and generally feeling better. It's piece of mind to know that nutritional needs are being met.
05-03-2012, 08:32 PM   #16
Lilmamma
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The nutritionist says that she is eating enough calories to grow. However, I'm not sure how many of those calories she's keeping down.
05-03-2012, 09:01 PM   #17
DustyKat
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It's not so much the amount you are eating but what you are absorbing too. Your body has to be able process what is going in to get anything out of it.

I don't know the nutritionist can say she is eating enough calories when you have said she is barely eating/keeping things down at all.

Dusty. xxx
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