How do you Keep a Child on EEN Compliant During Holidays?

[Lizknits99]

I'm looking to any tips or information on how to keep him compliant especially over the school holidays and a family holiday away.

 

[pdx]

Hi Lizknits,

Sorry that your son is struggling with EEN. It's hard, and your son has done well to make it this far!

My daughter just could not drink the formula; we tried a lot of different brands and flavors, but all of them made her gag and feel sick. She was scared by the idea of the NG tube, but for her, it ended up being a good thing. Once it was in, she didn't have to taste the formula, and it made our relationship with her so much better because we weren't always begging her to try to drink it. The tube was very uncomfortable for her for 2 days, and then she hardly noticed it. During her EEN period, she chose to leave the tube in all the time, but now that she's doing supplemental EN at night, she's putting the tube in herself at night and removing it in the morning. Many kids are able to do that; there's a great video on youtube where a girl explains how to put in the tube.

Compliance was also easier for her because her doctor allowed her to get 10% of her calories from food. I know not all doctors allow that (and there's debate over whether that compromises the effectiveness of EEN), but most do allow a few foods, such as clear broth, clear popsicles, or hard candy. You might check with your doctor to see if you could add a few things.

We also tried not to eat in front of my daughter while she was doing EEN, and we avoided events with food.

Finally, E really did not want to do supplemental EN once the EEN period was done. I think because she was feeling so much better, she just didn't understand why it was still important. We didn't give her a choice about it--we treat it like a medicine. However, we did incentivize it--we give her $25 a week for doing it. That's a *lot* of money for her, and it completely changed her attitude about it.

Good luck--hope it gets easier for your son. I noticed from your other post that your son isn't on any other medicines yet. Are there any plans for a maintenance medicine? Usually EEN is just used to induce remission until another medicine can take over.

 

[Lizknits99]

Thanks pdx, we haven't even had our first clinic visit yet but I'm sure we'll talk drugs then. It is awful when he asks for food, but I'm reluctant to add in anything if Drs say ok because I think it might be harder to get the drinks down him! Just one day at a time for now.

 

[pdx]

Yes, one day at a time is the way to go with this. I hope that your clinic visit next week goes well, and that you get some more guidance and answers. Hang in there!

 

[Mr chicken]

DS has done EEN without food over thanksgiving and Christmas the first time.
We bought decorative coffee cups with lids( throw away kind) plus fancy straws.
Gave him crushed ice to keep the chewing urge down
Let him have money from us/grandparents for each week finished
Had a calander to mark off the days of the week ( he was 7 at the time)
Fancy water bottles ( solid so you couldn't see the formula) for at school
School nurse gave him important jobs during lunch if he wanted to avoid food
Smell plate- made a plate just to smell if he wanted.
Lick plates - he could lick the potato chips if he wanted
He was allowed table sugar in small amounts - so we made
Sugar "cookies"- crystallized sugar and water poured into silicon molds shaped like trees .
We made "snow" - cotton candy out of pure sugar in a cheap cotton candy machine - placed in silicon cupcake holders with feet

If there are birthdays
You can make a no food cake
Decorate fancy boxes with foam sheets - similar to a cake - stack and place lots of tiny presents or trinkets inside to open .
Onky had DS sit the first 10 minutes of dinner with us for the conversation part .
Made of games for the holiday table so DS was in charge of running those

Currently ds is on pen so extremely limited type of food and amount
We are avoiding family cook outs since it really bothers him.
Plus he has been on this diet for over two months ( it's working ) just frustrated with it at this point

 

[Lizknits99]

Thanks for the reply. Seems like no food is allowed with treatment here in Australia. Only water and sugar free gum.
Some good ideas there. Good luck!

 

[Mr chicken]

Watch on the sugar free gum
Sorbitol can cause gut contractions and give diarrhea
But the gum in general is a good thing

 

[Lizknits99]

Thanks but he doesn't have any trouble with diarrhoea, just the opposite in fact.

 

[Farmwife]

Hi, Grace had constipation instead of diarrhea. Her EEN only made it worse. We used a mild stool softer to keep things soft and moving.
My 6 has done EEN /EN for awhile.
We did the no cake, cake.
She loved it. I bought a whit gift box and glued her candles on top. I put some gifts inside the box also. She 3 years later still remembers that cake!
Atmeal times she was allowed her art case but she did have to sit with us.
She is still young so she liked the idea.

 

[Optimistic]

Hi my son was a teen when he did EEN so we couldn't use some of techniques that may work for getting younger kids through it. My attempts at games and surrogates hit a brick wall and we didn't need more complications. We needed to make it through the period.

I'll second what PDX said:
"We also tried not to eat in front of my daughter while she was doing EEN, and we avoided events with food."

We also adjusted our thinking and made family time and talk happen outside the table. Essentially his world was turned upside down so we learned (hard way) that we could change some too for a short time and not make things harder for him.

Today is one more day closer to your finish line. Good luck.

 

[Optimistic]

Not sure why I can't edit on mobile version.

We even went on a previously planned trip to Disney while he was on EEN. We didn't do everything we would have done otherwise because we avoided things with strong food cues. We still had fun though. Yes it was weird to sneak a few kids off to eat while one parent went with him for a walk and formula. But we really had one priority of staying the course and we let that trump most everything else.

 

[Lizknits99]

We've now reached the half way point of the EEN (4 weeks) and it has definitely gotten easier. The holidays are nearly over and, apart from a few temper tantrums (his and mine) we have managed quite well. I'm so proud of how he has managed this treatment.

The constant tests are currently wearing us down but it will be good to know more about what is actually going on.

 

[crohnsinct]

Great news!

The first few days were the hardest for my daughters but then when they started feeling better they hit their stride. However, just a fair warning, as they reach the end, the last week was really tough for my girls. I thought it was weird but when the same thing happened with my second I realized it is the, "I just want this to be over" moment and the anticipation of food.

 

[pdx]

Congratulations! That's great. Does the EEN seem to be helping? Hope the testing helps you and your doctors figure out the best next steps.

 

[Lizknits99]

Really don't know if EEN is helping. Symptoms were not a big issue. He does more colour in his face and I'm sure more energy. So must be doing some good.

The real issues are the constipation and fistula. Hasn't helped these two problems.

 

[Farmwife]

My Grace had WORSE constipation on EEN.
We added more Miralax and it took care of the issue.

 

[Lizknits99]

Got called back to the hospital a week early to review tests and start meds. Starting imuran today. Three weeks of EEN left to go and then re-introduction of food. Tests were not pretty but as serious as they seemed, Drs didn't seem too phased by what they are dealing with so we are just going with the flow for now. He is looking so much better and more energy.

 

[Tesscorm]

Glad you're starting to see some improvement. Hope all goes smoothly for the remainder of the exclusive period and with imuran.

 

[Lizknits99]

Week one of Imuran done and no problems so far. Only two more weeks of EEN to go and he's upped his drinks by one in order to put on some weight. So proud of such a little boy taking responsibility for his treatment.
My newest question is, how to I ensure that I am supportive as a mum, but also balance that with helping him to live as normally as possible? I don't want to give him the excuses to live a life blaming and feeling sorry for himself. How do I build in resilience?
Such a hard thing to be diagnosed with an illness at so young, but I've seen many people become miserable and entitled after having been sick as a child.