Nutritional drinks

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Ladybug12

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Good morning. I've tried both ensure and boost. These don't sit well with my daughter. Kate Farms is another product the doctor recommended. My issue with these are they are four dollars each. The cost adds up quickly. She is 4 feet 11 and weighs 90lbs. Can someone share what other products have helped your child gain weight?
 
You can go to Vitamin Shop and look at "gainers" they are protein powders that are high in calories. My son used them for a while. They can mixed with milk, almond milk, lactose free milk, etc. The good thing about Vitamin Shop is you can return an open product for a store credit if she doesn't like the taste or if it doesn't sit well with her.
 
I have been enjoying Mighty Shakes. On line case of 75 for $40.25 so not bad and it's creamy but that in a blender with ice and it's a chocolate shake for sure. 300 calories so pretty good. Put whipped cream on top and there is some more calories and it looks fun. I do get tired of sweet nutrition shakes. I found a carrot, ginger, cashew soup that was amazing add cheese and that's a good one. Sorry a little out of it I'll try to think of more later.
 
Over the counter is costly
Have the GI write a script and send it to your durable medical equipment company
With a letter of medical necessity
Then insurance will cover it

Most need semi elemental or elemental formulas
Peptamen jr
Peptide

Elevate jr
Neocate jr

Your GI office should give you fee samples to try
So you know what to ask the GI to order
In the script
 
It sounds like she needs a more broken down formula. I would definitely get a prescription because the cost can add up FAST. They're very expensive. It might be a fight to get insurance to cover it, but it is possible.

In terms of formula, I would try a semi-elemental formula first. They're broken down, but they're still palatable (they are less broken down and more palatable that elemental formulas like Neocate).

I will warn you though, they don't taste as good as Boost/Ensure. But they are much easier to tolerate.

My daughter tried both Peptamen Jr and Pediasure Peptide which are semi-elemental formulas. I would see if you can get samples from your GI so your daughter can try them before you buy. There are a few flavors of each - my daughter liked chocolate the best.

They do taste bad, but kids get used to them. My daughter hated them at first but after a while she got used to them and was able to drink 2 a day. Unfortunately, that wasn't enough for her to gain or even maintain her weight so we moved to an NG tube.

An NG tube is also a good option if she can't drink them. It's much less intimidating and scary than it sounds. My daughter inserted it every night and took it out in the morning. No one at school had to know - she just did the feeds overnight! I was shocked at how quickly she got good at inserting the tube - it just took a couple days. The first night was rough, but after that she was fine.

She finally started gaining weight and feeling better and now she thinks a tube is MUCH easier than drinking formula and says she'll never go back to that!

I'll tag pdx - her daughter has done EEN and has used a tube too.
 
Before you try any OTC shakes, please check with your GI or nutritionist. Kids are different from adults and have different nutritional needs, so you want to make sure what you're giving her is ok.

I have never heard of Mighty Shakes or Kate Farms but they are likely to be polymeric formulas (whole proteins) that are difficult to digest for an inflamed kiddo.

Some parents use Carnation Instant Breakfast, but that will also probably make her sick.

In terms of weight gain, my daughter had become severely underweight - 5'2 and 82 lbs. She was hospitalized many times for her weight and her doctors were afraid her organs were going to be impacted by the weight loss.

She has gained about 25 lbs with supplemental enteral nutrition through her tube! She looks and feels great!
 
My daughter needed a semi-elemental formula--she couldn't tolerate the polymeric formulas like Ensure and Boost. She couldn't make herself drink them, so she used an NG-tube. Our insurance covered everything, both the equipment and the formula, if she was being tube fed. And like Maya mentioned above, using the tube turned out to be way easier than we imagined it would be.

EEN worked very well for her; it took away all her abdominal symptoms, helped her gain weight, and helped her other medications start to work. She gained about 20 pounds while on EEN and supplemental EN, and gained another 30 pounds in the next year, once her maintenance meds started working well. (She went from 5'1" and 70 pounds to 5'6" and 120 pounds in 1.5 years!)
 
We started with Boost/Ensure to try and put on weight they were hard on him caused him stomach pain, we had to go to the semi-elemental where the protein is further broken down and more easily absorbed. They also didn't feel as thick to him if that makes sense.
GI wrote Rx for Pediasure Peptide, we were given several samples to try and that one had a strawberry and a vanilla flavor he was okay with, he can't stand chocolate. Since he drank them at least it gave him a couple of flavors to switch back and forth from.
We were able to get them paid through our insurance by ordering them through durable medical supply company and because they were 90% of his nutrition. GI also put on the script that he was prescribing for failure to thrive and so we were able to get the "right" insurance codes to have them covered. Took lots of phone calls though but it was worth it. I want to say we paid about $200 before I deductible was met at the time and then they were fully covered.
 
My son drinks the boost, but even with that he didn't put the weight on. What helped the the feeding tube, he has it each night and it's helped tremendously. He was 76lbs a year ago, now he's 100lbs! The tube is easy to get in and out. I avoided it for a long time but it wasn't as bad as I thought...
 
pdx said:
My daughter needed a semi-elemental formula--she couldn't tolerate the polymeric formulas like Ensure and Boost. She couldn't make herself drink them, so she used an NG-tube. Our insurance covered everything, both the equipment and the formula, if she was being tube fed. And like Maya mentioned above, using the tube turned out to be way easier than we imagined it would be.

EEN worked very well for her; it took away all her abdominal symptoms, helped her gain weight, and helped her other medications start to work. She gained about 20 pounds while on EEN and supplemental EN, and gained another 30 pounds in the next year, once her maintenance meds started working well. (She went from 5'1" and 70 pounds to 5'6" and 120 pounds in 1.5 years!)
Click to expand...

This is a wonderful read! You said she gained 20 lbs on EEN and that's for how many weeks? and 30 lbs in the next year so was she doing EEN for 1.5 year with no solid food?
 
asadmom said:
This is a wonderful read! You said she gained 20 lbs on EEN and that's for how many weeks? and 30 lbs in the next year so was she doing EEN for 1.5 year with no solid food?
Click to expand...

Gosh, no! She did 90% formula/10% solid food for 6 weeks, then 50% formula/50% solid food for another 2 weeks. Then she did 6 weeks of supplemental EN where she would eat normally all day, and then put in the NG-tube just for the night and get some additional calories from formula that way. During that 14 weeks, she gained 20 pounds. After that, her Crohn's was in remission and her intestines could absorb nutrients from food again, and so she gained another 30 pounds (and 5 inches of height!) over the next year eating normally.

Over this whole time, she was also being treated with Remicade and methotrexate.
 
pdx said:
Gosh, no! She did 90% formula/10% solid food for 6 weeks, then 50% formula/50% solid food for another 2 weeks. Then she did 6 weeks of supplemental EN where she would eat normally all day, and then put in the NG-tube just for the night and get some additional calories from formula that way. During that 14 weeks, she gained 20 pounds. After that, her Crohn's was in remission and her intestines could absorb nutrients from food again, and so she gained another 30 pounds (and 5 inches of height!) over the next year eating normally.

Over this whole time, she was also being treated with Remicade and methotrexate.
Click to expand...

YES! A win! So nice to see a success of growing sideways and vertically.

When you mentioned solid food (first 6 weeks, the next 2 and then 6 weeks and rest of the year), was it just like anything she wanted to eat? Which formula did you end up choosing and what was your strategy determining the solid food to introduce?
 
asadmom said:
YES! A win! So nice to see a success of growing sideways and vertically.

When you mentioned solid food (first 6 weeks, the next 2 and then 6 weeks and rest of the year), was it just like anything she wanted to eat? Which formula did you end up choosing and what was your strategy determining the solid food to introduce?
Click to expand...

I don't think my daughter's GI put any restrictions on the food my daughter could eat, but we decided to stick with foods from the IBD-AID diet at first. (This is the IBD anti-inflammatory diet--you can google it for more info.) This diet has phases, so we started with Phase I foods and then moved through the phases as her health improved. I think that after she was done with formula, she was back to eating mostly without restriction. (She has strictures, so she never eats whole nuts, seeds, or popcorn. She also avoids most unpeeled raw fruits and vegetables.)
 
asadmom - I posted an older thread relating to EEN. My son did EEN for six weeks to induce remission and was given a reintro diet from the nutritionist at his GI's clinic. It's all in the other thread... Hopefully, the info helps.
 
Tesscorm said:
asadmom - I posted an older thread relating to EEN. My son did EEN for six weeks to induce remission and was given a reintro diet from the nutritionist at his GI's clinic. It's all in the other thread... Hopefully, the info helps.
Click to expand...

Thanks! I went to dig up your old threads and it's not easy finding the exact thread you are referring to. Would you mind pointing me to it?
 
Do you guys think it's gonna mess up the treatment if I rotate 2 or 3 brands of drinks during EEN to help with the boredom of taste?
 
Why would you rotate brands ?
They all taste bad
And it’s far easier on the kid if it’s just one particular version/brand
Ds started on peptamen jr
Hated the taste at first but got used to it
Then went to supplemental after 9 weeks
Gi decided the NEW (at the time) peptamen jr with prebio would be better for ds
Ds again hated the New with prebio (same brand ) but got used to it
At some point he went inpatient and the Gi floor
Only had the original peptamen jr
Ds could not stand it

to this day he absolutely will not drink any vanilla flavored shake -even boost or ensure
Since all peptamen jr that was carried by the durable medical equipment place was vanilla
We added chocolate syrup for variation
But he stills hates vanilla

no matter what you do realize it’s not food
The brain will want to chew
(Crushed ice helps )
Any food smell at ball games /sporting events
Other peoples parties - all revolve around food
Ds was used to bring his own food due to food allergies
But having no food is pure and utter torture
On older kids
 
Hi asadmom, sorry, I should have been clearer, I reposted the thread on the forum. Anyway, to make it easier, here's the link:

https://crohnsforum.com/threads/enteral-nutrition-een-club.55090/
:)

As MLP said, it's very hard to be without food... I think what helped my son the most was being able to have broth. I alternated between beef, chicken, veg and a mix of the three. Now there's pho, seafood, etc. Everything else he was allowed was sweet, the broth had a savory flavour so tasted a bit more like a regular meal. But, we also avoided, as much as possible, cooking foods we knew he really liked (so he wasn't smelling them) and not eating in front of him...
 
Last edited:
Tesscorm said:
Hi asadmom, sorry, I should have been clearer, I reposted the thread on the forum. Anyway, to make it easier, here's the link:

https://crohnsforum.com/threads/enteral-nutrition-een-club.55090/
:)

As MLP said, it's very hard to be without food... I think what helped my son the most was being able to have broth. I alternated between beef, chicken, veg and a mix of the three. Now there's pho, seafood, etc. Everything else he was allowed was sweet, the broth had a savory flavour so tasted a bit more like a regular meal. But, we also avoided, as much as possible, cooking foods we knew he really liked (so he wasn't smelling them) and not eating in front of him...
Click to expand...

Got it. So maybe give him salted broth once at the end of day?
 
Different rules for een depending on the Gi
Some allow broth (clear only )
Others allow pure table sugar 1 tbsp only x times per week only
Some allow dum dum lollipops only
Some allow sugarless gum x times a week only
And that was 11 years ago
Your Gi will tell you what is currently allowed and when
It really does vary
From Gi to Gi and country to country
 
Yes to what MLP said. Always check w your GI.

There‘s lots of great, knowledgeable advice here BUT no one here knows your GI’s treatment plan. Certainly take heed of the advice you learn here but always run it by GI. 😊
 
Alternating brands does not change effectiveness. Just as long as you stick with the allowed brands that your GI states. My daughters used the chocolate from one brand and the vanilla from another. It makes ordering from the supplier a little more difficult for the RD but they can do it.
 
crohnsinct said:
Alternating brands does not change effectiveness. Just as long as you stick with the allowed brands that your GI states. My daughters used the chocolate from one brand and the vanilla from another. It makes ordering from the supplier a little more difficult for the RD but they can do it.
Click to expand...

Thanks!

Yeah I am sorta making a "kit" with good enough of texture/flavors to hopefully break the taste fatigue when we go on this venture soon. *anxiety*

I am totally gonna do it with him too 😂 and do a blood test afterwards. Lol. I hope I don't become diabetic. Lol
 
Usually the GI’s will do labs before and then ours did every 4 weeks. How are his numbers now? Calpro? Albumin? CRP?

the EEN shakes didn’t make my daughter diabetic but prednisone sure did.

Is this kit approved flavors by him? One thing I remember about Stanford’s EEN protocol was that they really didn’t like the fruit juices as much as the thicker shakes. One time one of my girls pushed it and they llet Her have just one a day so don’t let him get too excited about those.

Dint forget to work with the school with just 504 plan. He may not want to sit in cafeteria at lunch, may want to be excused for class parties involving food, he will be drinking his shakes more frequently so you will need approval for him to drink in class. That and water as they need a lot of water intake during EEN also. My daughter also got approval to chew gum once a day from her GI as it made her breath horrid. But in some schools no gum allowed so we had to get that into 504 also.
 
Right what are his numbers now for ESR ,CRP , WBC and CBC?
Fecal cal ? When was it done last
Fruity versions of shakes tend to not be complete nutrition
As an adult your nutritional needs are going to be vastly different than a 13 growing boy
You need clearance from your own gp to drink nothing but shakes
They can not be kid approved shakes
I strongly suggested you contact your own doc first
For whatever version you are going to drink
The prescribing Gi will order whatever bloodwork /imaging is required prior to starting een for monitoring
 
I remember thinking I would support my 4 year old (at the time) with her first round of 6 week EEN by drinking the shakes too. I didn't get through one.😂 They aren't delicious and my kids (2 with Crohn's) both had 1 or 2 preferred flavors from specific brands and didn't want flavor changes.

What was motivating this last round for her? She's now 11 years old. 1. Access to her own phone to be social with friends. 2. GI said we would move to an NG tube if she couldn't drink them. She really didn't want the tube (although I have heard for some kids it's easier that way).
 
My daughter found the tube WAY easier. Just about using different brands - it might be more complex if you have a more expensive formula. Boost and Ensure are inexpensive compared to semi-elemental formulas. I know some GIs are fine with Boost/Ensure but our GI wanted semi-elemental, so we started with Peptamen Jr. So they gave her samples to try and she chose a flavor. I did ask about multiple flavors but her RD said that was more complex to order. I'm sure it's possible though. In the beginning, I bought one case of a different flavor but M ended up liking one flavor and getting used to that, so we donated that to our GI clinic for other kids to use as samples. Our GI allowed adding chocolate or strawberry syrup but she wasn't doing EEN, just supplemental EN.

When she did EEN, she did that through the tube and the only thing she could have beside formula was broth. It was VERY hard on her.
What has your GI said about EEN? Does he/she want 100% formula or 80% formula? At our children's hospital, they only do 100% now if it's absolutely necessary - it's much more common to do 80% formula/20% food. I would ask because even 20% food can make all the difference.
Also, older kids have to be 100% on board because it's otherwise easy for them to sneak food. Being allowed to eat a small amount of food can make them much more likely to stick with the plan.
 
Ladybug12 said:
Good morning. I've tried both ensure and boost. These don't sit well with my daughter. Kate Farms is another product the doctor recommended. My issue with these are they are four dollars each. The cost adds up quickly. She is 4 feet 11 and weighs 90lbs. Can someone share what other products have helped your child gain weight?
Click to expand...
I couldn't tolerate ensure or boost either, they both made me vomit. I am currently trying to gain weight and am drinking katefarms. I can't afford it myself, so I'm fortunate to have a brother who is footing the bill until I find out if my insurance will cover it. Have you looked into insurance covering it? So far, its been since Dec and I haven't heard anything yet. I plan to call my insursnce co on Mon. So its not a quick process, and if they do cover it, it gets a bit complicated, but the people at Kate farms will do all the work for you, so maybe contact them and ask about it?
Other than that, I have no suggestions for another drink, sorry!!! And good luck!!
 
jodymendel said:
I couldn't tolerate ensure or boost either, they both made me vomit. I am currently trying to gain weight and am drinking katefarms. I can't afford it myself, so I'm fortunate to have a brother who is footing the bill until I find out if my insurance will cover it. Have you looked into insurance covering it? So far, its been since Dec and I haven't heard anything yet. I plan to call my insursnce co on Mon. So its not a quick process, and if they do cover it, it gets a bit complicated, but the people at Kate farms will do all the work for you, so maybe contact them and ask about it?
Other than that, I have no suggestions for another drink, sorry!!! And good luck!!
Click to expand...

Thank you for sharing your experience! Our dietitian said she prefers Pediasure however she will help me with Kate Farms if thats my final choice. I will send her my decision next week and let you know how it goes.

Yes KF is crazy expensive. Have you had any luck with KF, in terms of weight gain?
 
@asadmom
Your child won’t gain weight while on full een (100%) .
They only gain weight when inflammation is down and food plus formula is used
 
That’s weird the dietician prefers peciasure. We are at same center and they would let my girls do anything the wanted. Boost, Ensure, Kate farms, pediasure etc.

Like I said earlier, the ordering different brands is cumbersome but they can do it and will.
Second what MLP said, the weight gain is slow on EEN but will come later

Frim our experience, Stanford does 109% EN and no food but they will negotiate down to 90/10 if the child is miserable and will quit EEN if they aren’t allowed some food. But they insist on trying 100% EN.
 
asadmom said:
Thank you for sharing your experience! Our dietitian said she prefers Pediasure however she will help me with Kate Farms if thats my final choice. I will send her my decision next week and let you know how it goes.

Yes KF is crazy expensive. Have you had any luck with KF, in terms of weight gain?
Click to expand...
So far, I have gained a few pounds. I was 108, now I am a solid 111! But I can't say for sure if it was the KF alone. I have also been making smoothies, at least 2 per week. I haven't been doing anything else for weight gain, so something must be working😁
I think Pediasure may have more flavors? I'm not 100% sure, but I think KF only has vanilla and chocolate for the kiddos. Might be worth checking out?
 
jodymendel said:
So far, I have gained a few pounds. I was 108, now I am a solid 111! But I can't say for sure if it was the KF alone. I have also been making smoothies, at least 2 per week. I haven't been doing anything else for weight gain, so something must be working😁
I think Pediasure may have more flavors? I'm not 100% sure, but I think KF only has vanilla and chocolate for the kiddos. Might be worth checking out?
Click to expand...

Even KF plain is yummy. I actually can't quite tell the difference between plain and vanilla. They are both super creamy.

I am super happy to hear about your weight gain! Woot! I can feel your happiness on the other side of the internet. :) It's funny how the little things that make IBD-people happy. :)

I just tried out the peptide version of KF too. Same yumminess. Can't even tell it's elemental. o_O
 
@jodymendel
You stated smoothies …
Assume your using formula (Kf) to supplement normal solid food so you can gain weight correct ?
You not doing formula only as een ? right ??
 
@asadmom
Katie farms peptide is semi elemental
It is not elemental formula
They don’t make elemental formula
Just polymeric and peptide

Elemental is broken down into pure amino acid which is why elemental formula is so difficult to drink orally
Kids versions on the US of elemental are
Elecare Jr(powder only ), neocate jr(powder only), neocate splash (pre mixed carton ) , vionex jr (I think )

peptide based formulas like pediasure peptide , peptamen jr , and Kate farms peptide are semi elemental
Meaning the chains are more broken down than

polymeric formulas (pediasure,kids boost and Kate farms standard )
 
@Pangolin
The majority of kids on here have not gained weight on een even with tubes
Now if they were severely underweight then yes they did gain some
But the average ibd kiddo on here who was not experiencing malnutrition did not gain weight on een
They only gained weight once solid food was added and formula used as a supplement

Thus is something that surprises most new parents (including myself )
So if your child gains weight on een - that’s great
But do not expect weight gain
 
Yeah that ^^^
That is why een is used to reduce inflammation and maintenance meds are used to keep inflammation down once solid food is reintroduced.
 
asadmom said:
Even KF plain is yummy. I actually can't quite tell the difference between plain and vanilla. They are both super creamy.

I am super happy to hear about your weight gain! Woot! I can feel your happiness on the other side of the internet. :) It's funny how the little things that make IBD-people happy. :)

I just tried out the peptide version of KF too. Same yumminess. Can't even tell it's elemental. o_O
Click to expand...
My brother accidentally ordered the nutrition shake in vanilla, and I agree, yummy!
 
It’s not really that mind boggling that when you stop EEN, inflammation returns. EEN is a therapy just like the drugs, not a cure. When you stop drugs, inflammation returns so obviously when you stop EEN, inflammation will return.

Many centers are trying CD-Treat out now as mono therapy. I haven’t heard many success stories.
 
My daughter gained weight on 85% formula and 15% food, but not much at first. She did that for about 8 weeks (I can't remember) and then we switched to supplemental EN and she was allowed to eat as much as she wanted as long as she got a total of 2400 calories a day. That's when she really gained...including the first 8 weeks, she gained 20 lbs in 6 months. From roughly 80 lbs to over 100 lbs. But her main issue was severe malnutrition and weight loss - her gut inflammation was not the primary reason for the formula, it was more being severely malnourished and severe weight loss.
 

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