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Crohn's Disease Forum » Parents of Kids with IBD » Tips on coercing teen to try ENT


 
08-06-2017, 05:44 PM   #31
coolbeans
 
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I thought that the Humira needed more time--I guess I was used to the Remicade which started working from the first dose--unfortunately we developed antibodies. 😟

The formula is actually supposed to be 80/20 so I don't if they are using as treatment also?? I will find out Tuesday. She has been on the Pred since June so I would rather get her off it if possible. She has rested and felt better today so hopefully a bland diet will help her gut rest so the formula can work.

On the 504 do I need to get that to her teachers or does the administration normally do that? I missed back to school bash so it wouldn't hurt if I had to take it around the school so I could meet teachers & get them up to speed. Love my hubby but he is not going to talk to them like I would.

Thanks for your replies.
08-06-2017, 05:52 PM   #32
Maya142
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Admin - talk to her guidance counselor, he/she will help you. CCFA has some good info on 504 plans: http://www.crohnscolitisfoundation.o...tsheet0816.pdf

They also have a template somewhere on the CCFA website.

Remicade does tend to work faster unfortunately. But even that can take a while - my kiddo took 3-4 infusions. Some kids on here have taken 6 full months!

Humira is slower. You do have to wait . For my daughter, who tends to respond slowly, it took 6 months. In that time, we had to up the dose from biweekly to weekly and add MTX.
But once it worked, it worked really well for her!!

I think you probably need to talk to your GI and figure out how they want the formula to be used. If it's 80/20 and meant to induce remission, then you need to be careful about calories and how much she is eating. Your nutritionist or dietician should be working with you - I think probably you just need better instructions.

They should also tell you what she can eat - some doctors make kids stick to certain foods while doing EN - generally a bland diet is a pretty safe bet. For kids who do 100% formula, there is usually a schedule of adding back food, starting with 1 or 2 foods at a time.

Hang in there!!
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08-06-2017, 06:16 PM   #33
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Yes hopefully Tuesday will be full of answers. 🙂
08-29-2017, 06:28 PM   #34
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My daughter had malnutrition at 13 when diagnosed with Crohn's, spent a couple weeks in hospital and started Remicade. They were considering placing the feeding tube but the Dr. had her drink 3 Ensures a day along with eating and she gained all her wait back within a few months and started gaining in hospital. At home she still drank 3 Ensures a day. I wish when she was so sick before they figured out what the problem was they had told her to drink Ensure since she was able to absorb that.
08-29-2017, 07:12 PM   #35
coolbeans
 
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I am so glad the Ensure worked for your girl. I wish mine could drink it but she just can't get past the texture. If she could've tolerated the peptamin, it would've been wonderful but it didn't work so we are going to try an amino acid based formula next. Hopefully she will be able to tolerate that.
08-29-2017, 07:14 PM   #36
amw2003
 
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My daughter loved the taste of cold chocolate Ensure.
08-29-2017, 07:21 PM   #37
Maya142
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coolbeans, if your daughter could not tolerate Peptamen Jr (which is semi-elemental) it is very unlikely she would've been able to tolerate the Ensure because it's even less broken down (even if she was able to make herself drink it despite the texture).

Since she needs an elemental formula, a tube is a good idea. They really taste pretty awful - my daughter made me try Neocate Jr, Neocate Splash and Elecare. She says they taste like feet and I have to agree !

The tube was much easier for her. Some kids are able to drink Neocate/Elecare, but it is tough. It's easier with younger kids - with teenagers it's much tougher.
08-29-2017, 07:26 PM   #38
my little penguin
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Completely agree when Ds started he could tell tolerate kids boost
Later only peptamen jr
Right now he only tolerates neocate jr chocolate
It's tastes like rotten frozen French fries per Ds
But he has been able to drink it orally
Extremely rare
Docs were ready with a tube behind the scenes
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08-29-2017, 07:37 PM   #39
Optimistic
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Completely agree when Ds started he could tell tolerate kids boost
Later only peptamen jr
Right now he only tolerates neocate jr chocolate
It's tastes like rotten frozen French fries per Ds
But he has been able to drink it orally
Extremely rare
Docs were ready with a tube behind the scenes
I'm smiling at this. My son says Neocate Jr all tastes fried!
08-29-2017, 08:13 PM   #40
coolbeans
 
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We r thankful for the tube--R has a hair trigger gag that is super sensitive.
08-30-2017, 05:09 PM   #41
Farmwife
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When Grace was 5 and 6 she said her EO28 Splash tasted like sweat carrots left out to long in the barn.

WHAT

Where do kids get this from.
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dx Erthema Nodosum
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08-30-2017, 07:53 PM   #42
Optimistic
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Coolbeans, did you find a formula?

And I'll take any tips for coercing bc we have hit a wall here. Even though my son knows his EN driven group of treatments are keeping him in remission, he is refusing to drink, tube, anything.

Teens.

I think I am going to try to bribe slash incent dr, therapist, teachers, coaches and anyone else to help.
08-30-2017, 08:11 PM   #43
Maya142
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My daughter had a very hard time too. She eventually relented when she got so underweight that one of her doctors told her that her organs would begin to fail. That's when she realized how serious things were and agreed to the NJ tube.

She was 18 at that time, so it had to be her decision.

For a younger teen, I'd have his doctors/therapist talk to him. I would explain that the choice is tube or drinking. He has to get it in because it is being used as medication. It really helped that our GI did not give my daughter a choice - she absolutely insisted my daughter needed formula. In our case weight was a big issue and of course my daughter was so malnourished that she felt terrible.

I can see how it would be even harder if you have a kid who feels good and is a normal weight.

You could have his doc explain to him what will happen if he stops - since this is his only treatment besides the SCD, it's likely he will flare. That would probably mean medications and either EEN or steroids. Plus, he is likely to feel pretty awful.

Maybe if you remind him what he felt like when he was first diagnosed, he will be more likely to drink his shakes.

Sending hugs - teens are TOUGH!!
08-30-2017, 09:42 PM   #44
my little penguin
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Second the doc explaining formula is a medicine in his case
Not food
So he gets to chose how it goes in but not whether he takes his meds or not
We had to have that conversation last year. When Ds had to switch from peptamen jr
To neocate jr
It wasn't pretty but he decided to drink all of it orally
(Yuck) because he was determined not to have a tube

Good luck teen years are tough
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