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For those who have done EEN, what is your selection of the formula?

Hi there, just wondering for those who tried EEN in the past (however long or short it might be...), what is your choice of the formula and how you came to decide on a provider (doc rec, google search and reviews, etc.)?

I was given Kate Farms by our doc to try. It is not bad at all but too sweet in my opinion (can dilute). Wanted to reach out to the community to see what others' experiences have been.

Thank you!
 

my little penguin

Moderator
Staff member
You can NOT dilute formula
It’s nutritional complete
It’s designed to give your CHILD the daily amount of nutrition needed to grow and gain weight
Een means exclusive enteral nutrition- no solid foods or other forms of nutrition.
Children have much different nutritional requirements than adults .
You can only use pediatric formula that is nutritional complete
You need to follow the advice of your child’s gi
They will tell you how much formula is needed per day and how long your child needs to stay on een
They also will determine which type of formula
Polymeric
Semi elemental
Or elemental is required for your child’s current situation
Children with inflammation need proper nutrition
In formula this is made from sugar (carbohydrates) fats and lipids
In the case of elemental formula this is broken down further into plain amino acids which what the body turns all food and formula into anyways .

please discus this with your child Gi
Formula should never be watered down or frozen
Doing so can cause more harm than good

standard course of een for children is 6-8 weeks
With no other solid food
This is when it used instead of steriods to reduce inflammation
 

my little penguin

Moderator
Staff member
Also at age 11 puberty is starting soon
Which means massive weight gain first then Growth
So getting into remission faster is key as well as getting good solid nutrition
In the form of een to get inflammation down
And later supplemental formula plus food once humira has taken over
Puberty is extremely diffcult time for crohns kids
Since meds have to work harder (all the chemical changes of puberty promote inflammation) sp staying in remission is very diffcult
Proper nutrition helps a lot through formula
Even though the ingredients in formula are NOT. what you would normally feed your kiddo
When formula is combined with good food and the right meds
-kids can grow and heal
Ds is on the other side and it was a battle but he definitely grew and gained weight
Compared to some other we knew with crohns who refused to add formula (much smaller folks at the end of puberty )
My kiddo used peptamen jr and later neocate jr
If you saw him on the street you would never know he ever had crohns
He reached his predicted his eight and weight from age 2
Which is amazing conserved most crohns kid dx very young do not
 
Thank you @my little penguin!

Yes, Kate Farms is what was given to us to try from our GI doctor. She said it's very good since it doesn't use dairy. She didn't prescribe EEN but I was just wondering how others have to come to use EEN and how they narrowed it down to a brand.

I will certainly speak to our dietitian about it but right now I am just learning about the process and what others experience has been. :)
 

my little penguin

Moderator
Staff member
Others used een when prescribed by their Gi for their child
It is not recommended to pull all food and place your child on een unless under the order of a physician since this is extremely difficult for the child .
Brand is dependent on the Gi and what your durable medical equipment company (through your insurance) covers and carries in stock .
Specialty formula at 8-9 cartons a day for 8 weeks can be expensive
Insurance does cover it as a infusion therapy supplies .


Milk protein is NOT an issue unless your child is lactose intolerant
My ibd kiddo has no issue with milk
We do not avoid proteins unless ordered to do so by a doctor
Ds has food allergies - avoiding foods can cause food allergies in those who already test positive for food sensitivity’s but have not developed a true IgE allergy (life threatening version) to the food yet
My other non ibd child is Lactose intolerant and must avoid all forms of milk

there are plenty of papers on een succes rate in children
All state the same thing
Success is not dependent on the type of formula used
Polymeric formula is just as effective as semi elemental or elemental formula
 

my little penguin

Moderator
Staff member

Start here
Tons of papers and resources
 
There are a ton of research backing up the effectiveness of the big names in inducing remission and none for Kate Farms. From the forum discussions, it doesn't look like there is a success story with Kate Farms unless its used as a supplement.

Yeah, my son is lactose intolerant... Modulen is milk based so I guess that is out of the question then.
 
Let me point out, though, that just because a formula contains milk protein, it doesn't mean it contains lactose. I'm quite lactose intolerant. Lactose and peanuts are the only two things that give me diarrhea, but I drank two different milk-protein shakes because they don't have lactose (I used Orgain and Modulen).
 
Well, part of the trick was drinking a load of water, but I found it tough when I was already drinking so much liquid every day. my GI said I could use Miralax, which isn't my favorite, but I used it a few times. I think I also drank prune juice a few times, but tbh, I can't quite remember now.

I also found I needed to switch to a liquid iron supplement (Floradix) instead of the pill I was taking.
 
Well, part of the trick was drinking a load of water, but I found it tough when I was already drinking so much liquid every day. my GI said I could use Miralax, which isn't my favorite, but I used it a few times. I think I also drank prune juice a few times, but tbh, I can't quite remember now.

I also found I needed to switch to a liquid iron supplement (Floradix) instead of the pill I was taking.
I got Floravital because of your recommendation! Havent tried it yet but I am looking forward to it.

Also, what do you think about taking magnesium for constipation (instead of miralax)?
 

my little penguin

Moderator
Staff member
@asadmom since your are talking about a child
With crohns and NOT an adult
You really need you Gi to weigh in on what extra supplements are used to treat constipation
Magnesium can cause other elements to be an issue
If you are just using supplemental formula WITH SOLID food to gain weight for your kiddo as was recommended by your child’s dietician/nutritionist
Then constipation/diarrhea are no longer an issue

if your child is flaring bad enough to need full EEN without food it’s not something you wait to do and you need your child’s Gi input on all of it

not what adults use or do
 
@asadmom since your are talking about a child
With crohns and NOT an adult
You really need you Gi to weigh in on what extra supplements are used to treat constipation
Magnesium can cause other elements to be an issue
If you are just using supplemental formula WITH SOLID food to gain weight for your kiddo as was recommended by your child’s dietician/nutritionist
Then constipation/diarrhea are no longer an issue

if your child is flaring bad enough to need full EEN without food it’s not something you wait to do and you need your child’s Gi input on all of it

not what adults use or do
Our GI said take some vitamins. Don't need to get the expensive ones.

What do you make of that?
 

my little penguin

Moderator
Staff member
Taking vitamins is NOT the same as taking a supplement such as magnesium to treat constipation .

Did your child actually start full EEN?
Does your child have bad constipation from full EEN?
Are you only seeing /having one Gi direct your child’s care for Crohn’s disease or are you still seeing 4 or 5 different Gi’s with different instructions from each ??

Your child needs to have only one Gi
Pick only one
Otherwise it will be very confusing for you and your child.

And you can’t treat or plan treat symptoms your child doesn’t have yet for a medical treatment your child has started yet or been directed to start by your child’s Gi .
 

Maya142

Moderator
Staff member
I would go with your GI’s recommendation on constipation. We used Miralax or Milk of Magnesia if Miralax did not work. I also agree that you will need a primary GI who takes care of everything. Second opinions tend to be good for one time visits or to get another opinion but if you have multiple GIs directing care at once, then you may get conflicting instructions which could be dangerous.
As for vitamins, I would guess your GI meant that your child should take a multivitamin, if you’re unsure, you should check with him/her. And ask about a magnesium supplement if you want to but most pediatric GIs, in my experience, are going to suggest Miralax.
If your son is having constipation, make sure he’s drinking plenty of water as well as formula.
My daughter has been on Peptamen jr., Neocate and Vivonex. It can take some trial and error to find the right formula.
 
I would go with your GI’s recommendation on constipation. We used Miralax or Milk of Magnesia if Miralax did not work. I also agree that you will need a primary GI who takes care of everything. Second opinions tend to be good for one time visits or to get another opinion but if you have multiple GIs directing care at once, then you may get conflicting instructions which could be dangerous.
As for vitamins, I would guess your GI meant that your child should take a multivitamin, if you’re unsure, you should check with him/her. And ask about a magnesium supplement if you want to but most pediatric GIs, in my experience, are going to suggest Miralax.
If your son is having constipation, make sure he’s drinking plenty of water as well as formula.
My daughter has been on Peptamen jr., Neocate and Vivonex. It can take some trial and error to find the right formula.
We ended up using Miralax and it helped.

Our second opinion doctor (he no longer takes on new patients after getting a full-time job at a biotech) reached out to another doctor (same hospital) to take us on so we are officially under the care of his referral. Our treatment hasn't changed tho we have learned a lot from the docs.

Yeah I ended up buying every brand that could be used for nutrition and my son has a few brands he likes and he is more motivated to drink when there are other brands/flavors available as a rotation.
 
Does it work if you are doing a rotation of brands? I did do a rotation of flavors within the same brand, but I didn't rotate between brands. I tried Modulen later down the line, after I had finished EEN, when I was doing 25% EN.
 
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