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Crohn's Disease Forum » Parents of Kids with IBD » Washable Incontinence Underwear for 12 Year Old Girl


11-20-2017, 02:04 PM   #1
ladyphoenix1010
 
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Washable Incontinence Underwear for 12 Year Old Girl

My daughter occasionally has fecal incontinence, especially when on tube feeding with liquid nutrition. Our nutritionist had us try to add some fiber to her feeding but that hasn't helped. C. diff infections etc ruled out already. GI doctor says diarrhea while tube feeding is pretty common and normal.

I bought her some pull-ups training pants to use on tube feeding days. But it would be nice if I could find some softer, washable underwear that is intended for incontinence issues. There are lots of options for toddlers and even quite a few for adults (like period panties). But I am having trouble finding good ones for older children. She's small for a 12 year old, but the cloth training pants only go to a 4T and those are too small. She has about a 24" waist.

Let me know if anyone has any recommendations for some soft, absorbent washable underwear for big kids.
11-20-2017, 03:08 PM   #2
Maya142
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When are her tube feeds? Are they overnight? My kiddo had trouble with that too in the beginning - bad diarrhea when we started tube feeds. We eventually switched formulas and the diarrhea stopped and so she stopped having accidents regularly.

We did look at pull-ups. I got the biggest size for girls which fit but she hated them. Adult sized options were too big because she was so underweight (she was 17 or so at the time, but about 86 lbs). So we ended up using maxi pads and just placing them at the back of her underwear. It did help somewhat - it at least contained the diarrhea and made for less messy clean-up.

In her case, she would wake up and run to the bathroom most of the time, but didn't always make it.

We found that once we got the right formula and her Crohn's was under control, accidents stopped. Completely.

She switched from a semi-elemental formula - Peptamen Jr - to an elemental formula (Neocate) and that really helped.

For some kids, it is true that liquid in = liquid out. But that is generally with EEN and it sounds like your daughter is getting some food. So I'm wondering if the diarrhea is really a result of the formula and/or disease activity.

Has she had a FC test recently? When was her last set of scopes?
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11-20-2017, 03:40 PM   #3
ladyphoenix1010
 
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Right now she is on a tube feeding schedule intended to get her down to one week of tube feeding per month. She is currently on 13 days of tube feeding. At the end of this cycle, she'll have food for 7 days. Then tube for 12 days, etc.

I'm nearly certain the diarrhea is from the feeding, since she isn't having diarrhea during her 7 day cycles of regular food. She's always had loose stools while on the tube.

Right now she is on Pediasure Peptide, which I think is essentially the same thing as Peptamen Jr. I'll ask our GI about the possibility of trying a different formula. That's a great idea.
11-20-2017, 05:52 PM   #4
Maya142
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Interesting - I have never heard of that kind of schedule. Generally, it is 5 days per week at minimum.

Based on what I have read and heard from tubie parents, bedwetting is common with tube feeds, especially with younger kids, but diarrhea is not that common. So I would look into a change of formula and see if that helps. Pediasure Peptide is semi-elemental and it may just be that she needs an elemental formula.

If not, I'd see if her Crohn's could be acting up - there are plenty of kids here who have had flares with minimal symptoms - my kiddo included. It's worth checking, just to be sure though it does sound like it's tube feeding related.
11-20-2017, 08:24 PM   #5
my little penguin
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Definitely look at elemental
Ds drinks orally (no tube ) neocate jr chocolate
All elemental can cause constipation though
Very low residue next to no waste
Neocate jr has a prebiotic version but that gave Ds diarrhea
He drinks 50% of his calories from formula
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11-20-2017, 08:26 PM   #6
my little penguin
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Just found this website
https://www.nationalincontinence.com/c/justforkids.html

Not sure how good they are
Hope it helps
11-21-2017, 09:20 AM   #7
ladyphoenix1010
 
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I reached out to our doc and he is willing to try a different formula. But this is what he said:

"My typical experience is the more elemental the formula is the looser the stools. It goes in this progression from more formed to less formed: Cow Milk based > Hydrolized = Petamen J > Elemental (Amino-acid based) (Neocate, Elecare etc)."

He also mentioned the full elemental formula is more expensive and may not be covered by my insurance. So we'll run it through insurance and see what happens. If it's covered, we'll trial the elemental formula and see if her body handles it differently.

Either way, I'll be getting some of those absorbent undies for her to ease her stress and embarrassment as much as possible in those worst case scenarios.
11-21-2017, 09:44 AM   #8
my little penguin
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Neocate jr used to cause diarrhea
They changed it
Now prebiotic version tends to cause looser stool
And regular constipation
Be aware this is after two weeks
The first two weeks it can be mixed or one or the other until the body gets used to processing it
As far as insurance try the durable medical equipment clause as infusion therapy supplies through your Dme

Most states have changed billing coding
So the code for formula including semi elemental and elemental is the same
Cost was the same if you compare a case of peptamen to neocate
Both are pricey
11-21-2017, 12:32 PM   #9
Maya142
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We were told the opposite - Neocate/Elecare tend not to cause diarrhea - they can cause constipation.

My kiddo has had formed stools on Neocate - even when she was getting mostly formula and very little food. They are soft but not diarrhea.

She also has not had urgency to the point where she's having accidents - that only happens when her Crohn's is flaring.

Our insurance covered both Neocate and Peptamen Jr. We use Neocate Splash since it is premixed - Neocate Jr is a powder that you have to mix yourself.
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