Question for parents who have dealt with EEN

[Pilgrim]

It's been about a week on EEN. The stools formed up really nicely and things were looking good, but tonight not so good. She has a runny nose, so could a cold push back the progress with getting formed stools? Tonight it was back to the awful smell, unformed, and gas propelled.

 

[Patricia56]

Yes. Colds and upper respiratory infections can trigger flares and worsening of flares.

You also need to be on guard for c. diff infections where the stool gets loose/D, frequent and smells bad. Usually a child will seem sick if they have c. diff and it's common to run a fever but not necessary.

They should have done stool testing to check for c. diff when she was diagnosed. If you have any concern that she might have c. diff it is better to ask for testing than wait and see. The longer it goes the worse it is to get a handle on.

Hope she's fine tomorrow.

 

[Pilgrim]

Thanks!

She was tested for C. Diff before her scopes in June.

I'll keep that in mind, in case things worsen further, for when we see her team in a week or so. But it is good to know that an upper respiratory infection can make it worse - so things should get better again as she feels better if that is the problem.

Thank you so much for responding. It is all new to us, and the help is appreciated.

 

[SupportiveMom]

My daughter never had solid stool on EEN. She was on it for 2 weeks before we had to stop the NG tube. Is she doing EEN orally or by NG tube?

I know some have had some success achieving solid stools but I don't think it was many. Colds always send my daughter into a mini flare. Just because she was tested negative for c diff in June does not mean she didn't get it. I would suggest getting tested again if you are noticing a strange smell.

In April when my daughter went into the hospital to get the NG tube inserted (on a Tuesday) she did not have c diff. She had received a negative result 5 days before. 3 days after NG she got c diff. It can come unexpectedly and not always from visiting a hospital. If she does have c diff it will complicate the benefits of EEN.

 

[Pilgrim]

She is taking the formula orally. I will ask to have her tested again for C. Diff.

Why did your daughter have to stop the NG tube after 2 weeks?

 

[kiny]

There was a long thread about this a year ago, about who had D on EN. A lot of people had D on EN. Some EN are only hydrolised whey, dried glucose and medium chain tri., it is highly bioavailable, and there is very little to form stool with to begin with. Especially 028 is very bioavailable, modulen and peptamen a bit less. D isn't normal, but D is very common on them because EN is 100% bioavailable unless they add fibers or other types of fats to them, but many EN don't.

The effectiveness of EN also doesn't seem to be lessened if you add regular food to EN, it doesn't appear to have to be exclusive to get the benefits from EN. I posted something about that a while ago. EN stimulates the release of cell adhesion molecules that bind to bacteria, it's going to do that regardless if it's exclusive or not, that's good for people who get too much D on exclusive EN. It's not been shown in vivo yet, but I don't think you need to be on exclusive EN to get all the benefits from EN.

 

[Pilgrim]

That's good to know. What she's drinking is probably the bottom of the barrel for EN, it's the product that is available in the grocery store; ie Boost, Ensure or the off brand equivalent.

She had D (well every other day D, if that counts) and then when she started EN the stools formed up, and then the D returned as described with also a runny nose.

I hope she could be adjusted to a partial EN/partial food diet soon. For now they want her to have 100% of her caloric intake to be EN. Nothing else but water. It's exciting to hear she could get the benefits without all the psychological frustration of smelling food she can't eat.

 

[my little penguin]

Most pediatric programs in the US only allow 10%-20%( some) of the calories from food the rest EEN .
This seems to work the best for kids - adults are different.
DS drank his all orally and had only one to two BM a day - pure liquid .
He drank EEN for 9 weeks .

Polymeric EEN ( boost pediasure etc) are just as effective in the studies but some kids do better on polymeric type while others need - semi elemental or elemental .
Prior to dx DS was getting half his calories from kids boost (3 shakes a day -750 calories)
That helped keep his weight up for a little bit but even that wasn't enough when he was still on a large portion of food .

Sed rate /crp etc went down when he changed to EEN after dx .

Good luck

 

[AZMOM]

We are in week 9 of EN via ng tube. We've been using Vital 1.5. Claire's stools are very soft but formed. First 8 weeks were 90% EN/10% food. We just moved to 50%/50% this week.

The dietician told us some kids get formed stools at 90/10 but some stay loose/liquid. As long is the frequency didn't dramaticaly increase or any other symptoms, she said not to worry.

J.

 

[Farmwife]

Grace always tends towards constipation. Full EEN for her means formed stools needing miralax top keep it soft.

Grace is 70% EN and 30% food. She however goes back and forth between full formula and adding some safe foods.

 

[SupportiveMom]

We had to stop EEN as she kept vomiting the tube up. We suspect it was because of the formula but are basing it on a hunch. After the 4th reinsert, 2 in the ER tmy daughter gave up on the treatment and we had to go back to adding prednisone to her meds. My Daughter didn't want to drink it orally and knew she couldn't stick with it unless she had the NG tube in 24/7. She was on peptamin jr. 1.5

 

[my little penguin]

Supportive mom sorry the peptamen jr 1.5 didn't work.

You make a good point most kids have issues with the higher calorie condensed formulas since they are very hard on the gut .