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Crohn's Disease Forum » Parents of Kids with IBD » Diet/Cooking for Kids with IBD » Starting partial enteral therapy advice


07-20-2015, 10:30 PM   #1
jenni92475
 
Join Date: Aug 2014
Location: windlake, Wisconsin

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Starting partial enteral therapy advice

My daughter is just finishing up 8 weeks ENteral therapy. She is moving onto partial enteral therapy. The problem I'm having is with creating a meal plan for her. The dietician called me today and said my daughter is the only child that is doing this therapy and she has no experience with this. She's not sure about what exactly is allowed. Is Silk almond milk allowed? Rotisserie chicken? Meal examples? Any advice on what is allowed and meal ideas would be appreciated
07-20-2015, 11:10 PM   #2
Lady Organic
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Hi , check out this pediatric GI video about diet:
https://www.youtube.com/embed/6EbHUYy5ePg
so best to go for vegetarian style food.
and take a look at IBD-AID diet in my signature for further possible ideas. If you research further on IBD-AID on the web, you'll find the U of Mass nutrition dept. website along with IBD-AID recipees. let me know if you cant find it.
almond milk is good, unless there's a personal reaction or intolerance.. just make sure carrageenan is not in the ingredient list.

my favorite breakfast: ''Happy face banana'': In a plate, 1 banana, spread generously raw almond butter on it, garnish with plenty of blueberries and/or strawberry, create eyes and nose in the plate with 3 blueberries or other fruits! Positively vibrating breakfast and delicious too. call me freak, but it makes me smile everytime
__________________
''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).

Last edited by Lady Organic; 07-20-2015 at 11:39 PM.
07-20-2015, 11:52 PM   #3
jenni92475
 
Join Date: Aug 2014
Location: windlake, Wisconsin

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This helps a lot... My daughter will be over the moon with that breakfast after only formula for 8 weeks!!
07-20-2015, 11:54 PM   #4
jenni92475
 
Join Date: Aug 2014
Location: windlake, Wisconsin

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Would steel cut oats be ok do you think?
07-21-2015, 12:32 AM   #5
Lady Organic
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you can check this out too:

http://www.researchgate.net/publicat...hn%27s_Disease

if i remember correct IBD-AID accepts Oats. but double check on the chart, table 2 if you want to try IBD-AID.

nut butter can be heavy, i'd spread lightly in the first days :-)
07-21-2015, 03:35 AM   #6
crohnsinct
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Join Date: Mar 2012
Location: Connecticut

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Also, whatever diet you choose we have found it best to do a slow reintroduction of foods and not open the flood gates. With my first daughter we chose 1 or two items and added those each week. The rest of her calories she got from formula, My second daughter did a percentage add. First four weeks 20% food 80% formula and so on.

Just a quick comment on almond milk. That is the milk we use in our house. As Lady Organic said, try to stay away from carrageenan. Also best to try to avoid added sugars...usually in the vanilla varieties.

Also, almonds sold in the US are required to be pasteurized. Currently there are two main methods being used to pasteurize the almonds. One uses steam to sanitize, the other uses the chemical propylene oxide, aka PPO, which is considered a possible carcinogen.

Products are not required to list which process they use. You can either call the manufacturer, buy organic or make your own with organic nuts. Pacific is a huge marketer of almond milk. Do to market pressure they recently switched over to using organic nuts, however, they still use carrageenan. There are others who don't use carrageenan but the nuts are pasteurized with PPO. The only manufacturer I have found that offers organic and no carrageenan is Whole Foods store brand.

Good luck with the PEN...are you using it as mono therapy or are you also using a maintenance med? Was she able to achieve remission on the initial 8 weeks of EEN? Good for her for completing the EEN! She should be very proud of herself.
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
07-21-2015, 04:25 AM   #7
Mr chicken
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Ds is on pen cded so the diet is extremely restrictive
But it works
He is permitted
Weeks 1-6 total of 15 different foods
Found in the list on my old thread
http://www.crohnsforum.com/showthread.php?t=71686
Then
That list plus
All fruits/veggies/nuts plus 200g whole wheat bread ( one slice a day )
__________________
DS dx at age 7 Crohns
Humira 40 mg every 10 days
Mtx 12.5 mg -due to juvenile spondyloarthritis associated inflammatory bowel disease

Vsl#3ds iron Zantac folic acid


Aka MLP....
07-21-2015, 10:14 AM   #8
jenni92475
 
Join Date: Aug 2014
Location: windlake, Wisconsin

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My daughter has been on 6mp for a year now and really did not get better. She has not grown in a year, not developing and was becoming more anemic. Our Dr gave us the option of adding a biologic or starting EET. At first I thought there is no way that my daughter could give up food for 2 months! I went home and reserched it and found out that it had great results with no side effects. My daughter was anemic and had a ESR reading of 40 starting out. 6 weeks into the therapy she is not anemic and her ESR was at 29. She had grown and started developing! So the plan is to keep her in EET until week 8 and then start PET. The dieticians have not been helpful so far. No advice.. Just stating they are not sure what exactly to do for PArtial therapy! I was expecting a meal plan. Day by day ideas.. I figured I will just have to research myself. I just want to make sure that I'm doing it right and not screw up what my daughter has done for the past 2 months. Everyone's advice here has been greatly appreciated!!! Anyone else hear about the benefits to a mainly plant based diet! Limit the amount of animal fats?
07-21-2015, 12:08 PM   #9
crohnsinct
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Join Date: Mar 2012
Location: Connecticut

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I have not only heard about the success of the vegetarian diet but experienced it. My older daughter was in remission but still not gaining very much. Her labs looked great and asymptomatic so no reason to believe there was a problem with her Crohns. We decided to try a Vegan diet. Within two weeks she gained 4 pounds. She is a competitive swimmer and two weeks after starting the diet she crushed her times. Her coach and her GI were amazed at what it did for her. At the time our GI said he could not explain it medically but told us to keep doing what we were doing. She eventually went to vegetarian (missed eggs and cheese). She also slipped off from time to time (youth group trips and such). Her doc can tell when she is off the diet and he calls her out on it. At this point she eats mostly vegetarian, no processed food (unless she is out, a guest in someone's home etc). About once a month she will eat an animal meat or fish. It is what you do most of the time that matters.

By the time my second daughter was dx'd, the doc told her I was on to something all those years ago and he gave us numerous studies on diet and he asked her to follow her sister's plan after she completed her EEN. She hasn't been so compliant and her disease is also not controlled. Can't blame the diet totally but I do wonder.
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