Enteral nutrition- another question for exclusive and/or supplemental

[Momtotwo]

If your child used exclusive enteral nutrition without a tube, what brand worked best? I guess I could rephrase that and ask what brand tasted best?

If your child used drinks as supplements, what brand and flavors did your child enjoy?

I am going to try to add some calories with nutrition drinks this weekend to see if my son will drink them. Maybe he will agree to try EEN if I start out with something easy to get down?

All advice welcome! I read the EEN threads and I know a few elemental formulas that likely won't work by mouth!

 

[my little penguin]

Ds drinks peptamen jr with prebio vanilla flavored .
Prior to dx he was placed on kids boost since he was having slow weight loss.
But that stopped working .
At dx we switched to peptamen jr.
He drank 7-8 shakes a day for 9 weeks no food.
Then switch to 2-3 a day .
He has been on them since Nov 2011.

There is also peptide both are semi elemental and drinkable.

E028 splash has juice box style -call nutricia and they will send samples
Also ask your Gi office they have lots of different samples to try.
You need to try them with your child .
Treat the formula as a med otherwise you will be fighting it even the polymeric stuff .

Ensure by the can ( Walgreens ) is a powder without carragean.

Don't freeze the formula or cook it .
Nutrition is lost then

Nestle nutrition store has a lot of different ones to look at
Abbott nutrition as well
Nutricia aslo does

If its doc ordered your insurance Dme clause might cover it.

Good luck

 

[my little penguin]

Fwiw my kiddo would not even touch kids boost at first when he thought it was optional.
He was 7 at the time .
Now he downs a peptamen jr in under 5 minutes.

 

[Maya142]

My daughter has only done supplemental EN - she drinks 2 Peptamen Jr a day. She's tried Boost and Ensure but she got very nauseous after drinking them. She didn't like the taste of Peptamen Jr at first (can't blame her!) but got used to drinking them after a while.
She drinks her shakes cold and with a straw to help with the taste.

Lately she's been difficult about drinking Peptamen jr(teenagers...) but her GI is good at convincing her that they're absolutely necessary.

She's tried Peptamen Jr 1.5 (which has more calories) but hated it because it was too thick. She also tried Pediasure Peptide which she didn't mind (she tried vanilla I think).

 

[Momtotwo]

Maya142-If she liked Pediasure Peptide, why did you switch to Peptamen?

 

[Maya142]

At that point M had already been drinking Peptamen Jr for a month or so and we got a sample of Pediasure from her GI. She didn't mind the Pediasure but decided she would prefer to stay with Peptamen (personally I think she just got used to Peptamen and it wasn't like she loved the Pediasure, it was just ok).

 

[Farmwife]

Hi, my Grace uses EO28 SPLASH.
She drank it all by mouth for five months
but then one day she decided to stop.
I've been told it's the most palpable by mouth and that's not saying much.

 

[my little penguin]

The Dme company sent regular peptamen by mistake once instead if the peptamen with prebio
DS turned his nose up and said it was horrid ( btw he drank it for three months before the Gi switched him).
Its all in what your used to sorta like Coke vs Pepsi .

 

[Jmrogers4]

My son drank the strawberry Pediasure Peptide both supplementally and then as exclusive. I think with any of them it is a matter of getting used to it. As many can tell you from my past threads on here it was quite the struggle. Jack is extremely picky and it was several days of him over the sink gagging, taking a drink of water and rinsing his mouth out after each drink, then it took him 2 hours to finish one (in a cup with a lid and a straw) but after about a week he was able to drink them in just minutes and said he didn't mind the taste. It was a mental block he had to get over. We were given samples of about every brand and flavor out there (except chocolate because he doesn't like chocolate any way) and I told him to find one we could/would drink because it wasn't a choice. He was dangerously underweight (1% for BMI).

 

[Momtotwo]

My child would not drinking the Pediasure Peptide. We bribed with money (a favorite reward), encourage, tried different ways (straw, cup), added sorbet to flavor. Fail. Now what?

 

[Maya142]

Did you try different flavors? We got a bunch of samples for M's GI's office and told her she had to pick one or two to drink (it was not something she could negotiate -- her GI made it very clear). In the beginning we bribed her but now she's used to it.

That said, I know how hard it is to make them drink -- it takes a lot of reminding (ok nagging). M recently decided she was going to only drink 1 a day instead of 2-3 and only when I bother her constantly does she drink the 2nd (mostly to make me stop lol). I really wish she would use an NG tube, I think it would be a lot easier than the constant nagging.

Can you get your GI to talk to your kid? That's what really helped with us.

 

[Mehita]

Orgain is another to consider.

www.orgain.com

 

[Momtotwo]

No, I only have vanilla, which is his favorite flavor for most things. I tasted it , and it's pretty good. I'm picky. I'll ask the GI about samples. He wasn't particularly helpful when I brought up enteral nutrition- or nutrition in general. He has been great about other aspects of care, but our hospital doesn't seen to have much expertise re. nutrition. I think we might have to return to our second opinion hospital for that support in the future.

His weight has been stable. If it drops, I will consider NG tube at night to supplement. He reacted strongly to that when I brought it up, but I think we can revisit it in the future.


He had about 3 ounces this morning. I will call that success for now since he is willing to drink more later. He was very proud of himself.

Mehita- I will pick up some Orgain today. I also have Boost - the clear juice-flavored one and the shakes style. But I prefer the Pediasure and want to stick with that if it works out. I'm going to order the Splash samples tomorrow- I forgot to do it during their business hours last week.

 

[my little penguin]

DS did not want to drink any of it period.
Boost peptamen etc....
We had to treat it like meds since that is what it is not food .
He can chose to what to eat but not formula.
He could chose to drink it or tube it but it was going in just like his other meds (6-mp at the time.)
Would you give him a choice not to take the 6-mp or other meds he is on?

I sat with DS for over two hours to get one full on in.
He asked that I pinch his nose and he cried.
The next one took less time . After three days he could drink it on his own under protest.
Now he can drink two in under 10 minutes.

We also did samples giving DS a choice of what he drank from the acceptable group
We also chose the semi elemental since it's easier to absorb .

Jmrogers son would not drink it either .
Until she also treated it like a meds .
She can fill in the story - I just remember her son had to sit by the sink .

Good luck

 

[Momtotwo]

Yes, I remember jmrogers' story. I am torn about how much to push it right now. We are using it as a supplement at this point, and it was our call rather than his GI's suggestion. Part of me thinks we should take your approach, MLP, or we might fail. But part of me thinks he is cooperative with his blood draws, IVs, learning to swallow pills without a struggle and I assume he will be cooperative for his first Remicade infusion. So, I don't know if I want to treat this like a med at this point. Not sure if I am explaining that well. But, if I don't, it might be difficult when it is absolutely necessary. You're right, he wasn't given a choice with his oral meds.

 

[AZMOM]

Momoftwo - We are just a few days past 4 weeks of EN with ng tube. It was drama and tears to start with. Now, things are going well. We have the tube in and her hooked up in minutes. Literally. And we can tell a BIG difference!!!!!!!!!!!! If he won't drink it, think about it and maybe get him to agree to 14 days' worth of nightly feedings. I used to wrinkle my nose up thinking about it and now I wish we'd done this a long time ago.

J.

PS We are using Vital 1.5, vanilla. It is NOT palatable. I tried it. :rof: