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11-14-2016, 01:14 AM   #1
waitingforoct
 
Join Date: Nov 2016
Location: Arizona

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Flavoring Peptamen?

My son, age 12 was diagnosed last week with Crohn's. His GI wants him to start on EEN with Peptamen. I am very concerned about tolerability, especially since my son has never liked milk.
Does anyone have experience flavoring shakes with anything? I was thinking Crystal light powder or drops?
11-14-2016, 01:49 AM   #2
Maya142
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Hi and welcome!
I'll tag MLP - her son did EEN with Peptamen Jr.

My daughter was on supplemental EN (to gain weight) and found that she liked some of the flavors better than the others. I would see if you can get samples from your GI so he can try different flavors. My daughter was able to drink chocolate and strawberry but did not like vanilla. We also tried the unflavored kind and added chocolate syrup.

It does take some getting used to. My daughter was not able to drink enough to gain weight or even maintain her weight. We eventually went to an NG tube and that was MUCH easier for her. It sounds very intimidating but it really wasn't so bad at all. Something to keep in mind if he cannot drink the shakes.

Some parents have used rewards for getting through each week on EEN. That might help .
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
11-14-2016, 10:08 AM   #3
my little penguin
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Join Date: Apr 2012

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They have vanilla chocolate and strawberry
So ask for samples
Expect tears lots of them
Treat it like a med it's not food
No different than bad tasting abx

Make sure your kiddo knows it's no optional
They get to chose how it goes in mouth or ng tube but not if
This is very important no one likes the taste

Serve very cold
With a lid and a long straw
Have the kiddo pinch his nose it hides the taste
Do not add things to it
This makes the taste worse
Unless you can only get vanilla from your dme then add choc syrup if your kid likes choc
After 3 days they get used to the taste and no tears

Ds drank 8 a day every day for 9 weeks
Then went back to food with 2-3 a day for growth
He did this for five years
Switched to een on neocate jr choc in may of this year
Tastes worse than peptamen jr since it elemental
But he cried for three days again but pushed through
He didn't want a tube

Now he drinks 24-40 oz a day plus food
No issues
It just a taste they get used to like coke or Pepsi
Once you drink it a lot your taste buds get used to it or anything else

Bribes help
We payed by the week

Good luck
__________________
DS - -Crohn's -Stelara
11-14-2016, 10:10 AM   #4
my little penguin
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Join Date: Apr 2012

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Don't freeze or heat it
That kills the nutrition
11-14-2016, 01:58 PM   #5
pdx
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Join Date: Dec 2014
Location: Portland, Oregon

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My daughter first tried drinking Ensure and Boost, and then Peptamen, but couldn't drink any of them. She ended up using an NG tube, and like Maya's daughter, found it much preferable to trying to drink formula. The tube was very uncomfortable for a few days, but then she hardly noticed it. Some kids leave the tube in all the time, but many just insert each night and take it out in the morning.

It's worth the effort to figure out how to make EEN work for your child--it's a very effective treatment for many kids. It helped my daughter tremendously.

Has your doctor mentioned any longer term maintenance medicines? Good luck with everything.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
11-14-2016, 04:33 PM   #6
waitingforoct
 
Join Date: Nov 2016
Location: Arizona

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We have an appt this week, so no details yet, but we were going to give him the choice of EEN or prednisone and then he will need MTX for maintenance since he has severe disease, apparently. I'm imagining he would prefer going to a tube as he is not very keen on eating food on a good day, but GI doesn't want that.
Can you blend with ice for a more milkshake-like texture, or would that be worse?
Thank you so much for the responses!
11-14-2016, 05:17 PM   #7
my little penguin
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Join Date: Apr 2012

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EEN means no other food
So no ice cream or any other food
Anything you add to flavor it would need to be cleared most gi will not permit it
Een is formula only with just ice to chew nothing else
It helps Reduce inflammation and let's your child grow
Pred is easier just a pill
But only helps with inflammation and has side effects
Growth stops
Night sweats
Moon face (puffy face)
Mood swings
Acne
Osteoporosis with prolonged use
Cataracts
Glaucoma
Diabetes and Cushing syndrome

Pred would be used until inflammation has been reduced then weaned so 2-3 months on pred plus 1-2 month wean
Een is used about 6-9 weeks sometimes longer

Ds has had crohns since age 7 and soon will be 13
He has done 3-4 rounds of een and 4 rounds of long term pred 3-5 months

With mtx ask for folic acid
Ds takes it daily including mtx shot day to help lessen the side effects
Good luck
11-14-2016, 06:02 PM   #8
Maya142
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The tube is not bad at all. My daughter was dreading it but we were quite surprised by how easy it is.

She chose to insert it every night and take it out in the morning, so no one at school had to know. Many teens/pre-teens choose this route. Little kids tend to keep it in.

The first night her nose and throat were sore, but after that, she was ok. Within a week or so, she could insert the tube in 10 seconds or so. They learn to insert it while drinking something, so it slides right down. You want to use a really small tube - most kids use a 6Fr tube which is an infant size, but works for older kids too. It's just more comfortable, the smaller the tube is.

There are videos on Youtube of kids inserting their NG tubes, if he wants to watch.

My daughter now says having a tube is MUCH easier than drinking the shakes.

This is a great site with lots of info about tubes: http://www.feedingtubeawareness.org
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