Harmless additions to enteral therapy.

[Rebeccaadavison]

Day 2 and he is asking for food. Not sure how well this drinking is going to go, but even if he tube feeds, this is going to keep coming up. Can he have flavored water drops, or popsicles? Sugar or substitute?

I just need some advice for this weekend. We got the information Thursday of a long weekend and I don't even have my password yet to send emails to our team. I'm sure they will answer once this long weekend is over. But I could use the advice today.
Thanks.

 

[Clash]

Some GIs alolow a couple hard candy or gum, Tesscorm can answer about that.

Crushed ice is allowed for chewing function by some. Mr chicken can answer to that and homemade cotton candy ons special occasions.

My son did ngtube but was only on EN and not EEN so he didn't have to abstain from food. It was for weight gain. Sorry I can't be of more help.

 

[Tesscorm]

We were allowed clear fluids - clear pop, jello, popsicles (no chocolate) and clear broth. However, many GIs don't allow this...

Going to tag Mr chicken - she made sugar candies/cookies that were allowed.

Crushed ice, gum (try to avoid gum with sorbitol)...

While my son was allowed broth, even that got boring and doesn't really fill you up... but, to alleviate the boredom a bit, I tried giving him broth in different containers - bowls, mugs, etc. Maybe try with the shakes. I know it's not much though...

Unfortunately, distraction is what works best because there isn't much to try.

I'm sure some of the other mom's will be along... :ghug:

 

[Mr chicken]

Ds has done een twice
First time only allowed formula gum plain cane sugar( table sugar ) sprinkled over crushed ice
We made homemade cotton candy
Plaintable sugar in a cheap cotton candy maker at target
This makes cotton candy you can put into silicon cupcake holders with feet
Sugar cookies -sugar plus water boiled and sent into silicon molds for cookies

Make non food treats
Boxes decorated with foam -think birthday cake style
Fill with tiny trinkets to unwrap while others eat
Special themed coffee cups with lids for formula plus fancy straws
Calendar with stickers to mark off days with a reward for each week
Cash toy etc

The first week is hard
Sometimes a smell plate helps
Other kids hate it
More later

 

[crohnsinct]

It is hard therapy for sure. Both of my girls were formula and water only. They were allowed one piece of gum a day. Chewing ice was also allowed.

I bribed my girls with non food treats for each week they completed. Mani/Pedi's, new outfits etc.

 

[Pilgrim]

My daughter was allowed formula and water, and one sugar free popsicle each day.

She had to supplement Vitamin D, so we were allowed to get these in gummy form and use those as a reward for drinking the formula.

It got easier after the third day.

It helps to read up on the side effects of the steroids, which are your alternative for treatment at the beginning.

 

[Rebeccaadavison]

Thank you all for your creative answers. He definitely feels better already, although its pretty discouraging to read how many children relapse as soon as solids are introduced. For now, we will continue to let him have popsicles and he asked for an italian ice treat today. We have been also allowed clear juices and broths. I am assuming no sugar substitutes. We have sugar free popsicles. I might just throw them out to make sure he doesn't get one by mistake. His brother will make many of his favorite snacks disappear in short order.

 

[Pilgrim]

Strangely, we were told to avoid sugar and to have sugar free popsicles.

We are just starting another round of EN (not 100% this time it's 70/30) and we were told to avoid sugar (again) and animal fats.

 

[Mr chicken]

Things to remember
Sugar substitutes tend to cause abdominal contractions ( sucralose etc)
Sugar also causes issues but a different type so while you are told to avoid sugar typically that means subs are not permitted either

Ds is currently on pen ( partial en plus crohns exlcusive diet )
It's new
More than 50% of calories from formula and food from a list of 13 foods permitted

 

[Mr chicken]

http://www.crohnsforum.com/showthread.php?t=71686

My thread on the diet Ds is on
Changed name from my little penguin

 

[24601]

Also might be worth talking to your doc about the study showing that 90% of calories from EN and 10% from unrestricted diet gives as good results as EEN since the food that would allow each day might make it bearable for everyone.

I'm sure the parents here can give you more info about that study.

If he's feeling better though, hopefully that will provide motivation. Even doing EEN as a teen and young adult was hard for me and it was only the reduction in pain and a lot of distraction that kept me going.

 

[crohnsinct]

Yes our doc mentions the 90/10 quite a bit. Plus if you are on the "ibd" diet which is usually whole foods that 10% could actually end up being quite a nice plate. I remember when t was at 20% she couldn't believe how when you eat super healthy how much food was in 500 calories. She actually said ,"I can do this forever".

 

[pdx]

My daughter did the 90/10 thing--for 8 weeks she got 2000 calories a day from formula, and then was allowed to have 200 calories a day from food. Our doctor mentioned a study that showed that this was just as effective as EEN, but I've never seen the actual study, and I don't know where the research was done (maybe it hasn't been published yet?). Our GI didn't put any restrictions on what kinds of food for the 200 calories, but we decided to use foods from the first 2 phases of the IBD-AID diet.

My daughter was really sick when she started EN, and it wasn't enough by itself to put her into remission. Would it have worked better for her if she hadn't eaten any food at all? I just don't know. But compliance was certainly easier with some food allowed. And the 2000 calories of formula kept her full enough that she didn't ever want to eat more than the 200 allowed calories.

 

[jenni92475]

Things to remember
Sugar substitutes tend to cause abdominal contractions ( sucralose etc)
Sugar also causes issues but a different type so while you are told to avoid sugar typically that means subs are not permitted either

Ds is currently on pen ( partial en plus crohns exlcusive diet )
It's new
More than 50% of calories from formula and food from a list of 13 foods permitted

My daughter will be starting the 50% formula 50% food in 3 weeks. How is it going with following the list of allowed foods? I think my daughter will just be happy to actually eat real food at that point is it hard to eat out?

 

[Mr chicken]

Ds has had some sort of food allergies since age 4 so he is used to food restrictions and like your daughter will eat anything since its food

Ds has not eaten out since we started the diet.
The number of foods that he tolerates is increasing daily
He is past the first 6 weeks of limited food list and moved on to adding all nuts fruits veggies plus once slice of homemade bread on to his list
He feels great Gi wise and is getting lots of soft cooked veggies
Example
Dinner was scrambled eggs cooked with potato /tomato /zucchini( no skins)
With homemade coconut ice cream( no sugar just egg coconut honey and vanilla ) for dessert

You can make it work it just takes time