Would there be a reason NOT to go back to EEN?

[Pilgrim]

We recently came off of EEN to half EN half food. Really it's only a very small amount of low fibre food. She is starting to refuse it altogether.

We're waiting for Aza to kick in, and her stools have returned to mucousy since starting food again, even in small amounts.

When I called her GI I was told to pull back on the food a little but not go back to EEN. But I'm not sure why. Does anyone have any experience with this?

I'm really worried that our truce with Crohn's during EEN is over.

 

[Farmwife]

Most say that full EEN never works as good as the first time around.
With my dd I weigh her every day and adjust the amount of EN needed.
Now that grace is nearing remission (I hope) she is taking to foods a lot better.

The old GI said to pull back to full EEN anytime we saw her struggling but my dd had other issues too.:yfaint:

 

[kiny]

I don't feel there is. As long as it's "real" EN, you can do exclusive EN as long as you tolerate it. I did 2 years on 028 and modulen. I had discussed this after a while with my doctor since my friend was worried I didn't eat "real food", but there was no reason to go off it since it has all the macro and micronutrients you need, a nutritionist at the hospital looked over what was in it, and you can stay on it indefinitely.

I don't think there's a reason to go off EN if you feel good with it, unless you have lots of D on it or if you can't handle it psychologically.

 

[Pilgrim]

Thanks for that. She doesn't have a lot of symptoms of her Crohn's, it's always very subtle (at least compared to many here), but it was like this when she was scoped and the damage was obvious both by sight and biopsy. For her the symptoms are mostly fatigue and some joint pain, occasional D, but all of that improved on EEN. We could almost live with the symptoms even without EEN, if we didn't know that inside there is so much damage.

It is polymeric formula, but it seems to help quite a bit. We consult with the GI soon. Meanwhile, I think the question is being answered for me by my daughter. Now she is refusing food except for a small amount of formula. She says she doesn't hurt, but I can't imagine why else she would refuse.

 

[UnXmas]

I don't think there's a reason to go off EN if you feel good with it, unless you have lots of D on it or if you can't handle it psychologically.

How on earth did you manage psychologically for two years?

 

[Spooky1]

Can I ask what foods were reintroduced please. There are some that will give bad mucous which sometimes feels like battery acid. Mucous also means my colon (what is remaining of it) is having huge issues and gives me additional pain to small/upper digestive tract.

I agree she should be allowed to have whatever she feels healthier on and what causes her less pain.

 

[Pilgrim]

The foods have been very limited. White saltine crackers, cheddar cheese, canned peaches or pears. White bagel with a tsp of cream cheese. Diluted organic apple juice.

It was mentioned to me that she may have a psychological issue (food aversion) with the reintroduction of food. I really don't think so, but i was wondering if anyone had experience with that?

She almost never complains of pain. At most it's, "My tummy doesn't want any food." I also only saw the mucous in the stools in the time where her colon was a mess. So it does make me worried. But it looks like we're giving it a month to see what happens.

 

[Farmwife]

My dd was the SAME way. She never asked for food for 6 months.
If she ate a little she would say she's full.
It took a good year before the begging for food started....and has yet to stop.:yrolleyes:

Could it be mental,:smile: sure but in my mind the EEN supplied all her needs so I gave her space and time to want the food again.


:hug:

 

[Spooky1]

Pilgrim, thanks for letting me know the diet. I know every Crohnie is different, but gluten, dairy and fruits are no no's for me. I have lactose/fructose problems not to mention the gluten. These foods can be very filling too, perhaps that's why your lovely dd doesn't feel good. Could I suggest potatoes and salmon, or a bit of cod. Increase with perhaps a tad of chicken/turkey and potatoes. These are less heavy on the tum tum, they are also very easily digested too.

I sincerely hope this helps her. It must be awful for mums of Crohns/colitis sufferers.

 

[Pilgrim]

Spooky1 - thank you. I will try that. Before she was diagnosed the food she craved the most was roast potatoes with garlic - I think it just made her feel good. Can you live with the skins or remove?

Tonight salmon is on the menu. Hopefully she'll join us. Today she ate nothing but one bottle of Boost. Last night she was up vomiting. She was tested for celiac, and the test was fine, but maybe there is a sensitivity there. I don't know. I can do simple, though, so fish and potatoes I will try.

Thanks again.

 

[Spooky1]

If she can tolerate roast potatoes then good. At least it's fairly bland and calories. Garlic is good for people, not that I have too much myself, lol. I'm hoping she won't be vomiting
today and that she feels better. This Crohn's is bad and at least we know how your poor little dd feels. Good luck with a bland diet.

 

[my little penguin]

The thing with EEN in very small children is different than adults.
Only because of the oral skills they are developing at her age as well as taste /textures.
I know more than a few families where the kids had to stay EEN for a long time ( years) due to other Gi issues/allergies not crohn's. Then you need to provide oral support which can help with function of speech as well as psychological /behavioral issues.

That said vomiting daily due to disease progression and feeling bad I am sure doesn't help things mentally either. How long as she been on EEN and how long on Aza?
Aza can take up to 4-6 months to work .
Once we re introduced food from EEN while DS was on 6-mp he. Went back to vomiting.
This didn't stop when switch to pred/Mtx either.
Is wasn't until he finished the loading dose for remicade that is stopped.
His wasn't an intolerance since once the disease was under control regular food was not an issue at all( except raw veggies).

What is she getting for oral skills ? They have chew sticks , crushed ice etc...
Never an easy balance .

 

[Pilgrim]

She was vomiting in the night again last night (second night in a row). The GI office thought it was food re-introduction but she had eaten nothing. Only 2 bottles of Boost over the day.

The dose of Aza is given before bed, which for her is around 7:30pm. The vomiting both nights starts about 4 hours later. Last night the first thing to wake her up was stooling, which actually looked better even though it wasn't supposed to happen at night, but then she had stomach pain and vomiting within a half an hour.

It has been two weeks that she has taken Aza. We had been on 6 weeks EEN and then reintroduced some food the day we started Aza with the goal being to do 50% food and EN for awhile while Aza kicked in.

I asked about oral skills at the beginning of EEN. They told me it wasn't an issue and I didn't need to do anything, but that didn't really make sense to me at the time. I'll keep it in mind if we go forward with EN for a significant amount of time and press the issue.

Right now I need to figure out the night time vomiting.

 

[Catherine]

doses vomit look normal?

 

[Pilgrim]

Yes, pretty much normal looking. There's not much in it. I think we're progressing maybe. Last night stooling woke her up in the night, but it looked great again, and then she had stomach pain for an hour and fell asleep without vomiting. I bet it's her body adjusting to the Aza.
She ate a little yesterday too.

 

[Pilgrim]

I just wanted to mention to anyone who had read this that my daughter's symptoms from the start of this thread were related to her developing Pancreatitis from the Azathioprine. We since discontinued AZA and have, in fact, returned to 100% EN orally with polymeric formula.

She's feeling much better right now. We'd love to do maintenance cycles with EN after the EEN. If anyone has had success with this, I'd love to hear about it. Including what percentage of formula you needed to make it work. We're thinking 6 weeks on full EEN, 6 weeks on partial. There aren't a lot of studies on maintenance with this that I have found.

Thx!

 

[SupportiveMom]

Pilgrim I am glad you have some answers now. Glad to hear she is feeling better. Many here have done the EEN successfully and some not so much (including my kid) . I hope it works well for her. I think farmwife is still doing EEN and there are a few more I am sure will come by this thread soon. Good luck.

 

[Farmwife]

Right now my dd gets 500 calories from EN plus 800-1000 cals from food.
The formula is EO28 Splash that comes in ready made 8 ounce juice boxes.
She as two a day (morning and dinner).

If she doesn't pull out of this flare we will put her back on full EEN for 4 wks....I think.
her docs want to avoid Pred. as much as possible.

 

[Pilgrim]

So she is at about 25-30%EN for maintenance and no luck with it? Or did it work for awhile? I guess it's hard to tell when they are on other meds. We don't always know what is working, only what isn't!

Are you still using a G-tube?

I agree avoiding the Pred is probably ideal with these little ones. I hope Farmgirl does ok transitioning back. I know H has a harder time with it this round. She wants to eat what her siblings have. First 3 days were the toughest again, and now she'll say she wishes she could have XYZ...."But it's ok, I know I can't!" So, we'll probably make it through the 6 weeks again just fine.

 

[Farmwife]

It works/ed but not enough to keep her in remission.
It worked at keeping weight on but not stopping the pains by itself.


This is my dd history of meds....bare with me.

Was dx and given Pred and EEN as a treatment............scoped 3 months later....still inflammation.

When weaning off Pred we decided to try LDN and EEN....got a little better but.....
flared and her arthritis reared its awful ugly head and straight to MTX, EEN and her third round of Pred. We dropped the LDN.

MTX + EEN + Pred wasn't enough to stop the disease(s) so we added Humira.
Dropped the pred....again
At this time we added 50% food back.

Humira + MTX + Pred + EN wasn't enough so............................................. :yfaint:

Now on Remicade + MTX + EN.

And all this by the time your 6.:yrolleyes:

YES, we LOVE her g-tube. I hook it up 2 times a day and she colors/talk/argues with her brother while we eat.
She now can do the whole hook up herself.

 

[Pilgrim]

She sounds like a tough kid who has had some of the worst of it thrown at her.

Hopefully you have hit the right combination to put her into remission. How long ago was she diagnosed to have gone through so many treatments? How has school been going for her with this to deal with?

Yes, it is always good to see the sibling relationship remain normal! I think our older kids baby H a bit because of the Crohn's but not the sibs who are close in age! Same fights and love as always.

 

[Farmwife]

2 yrs. in December.
Crazy its been almost 2 years.
We were never given much time in between treatments as the arthritis was progressing so fast.
The arthritis is/was worse than her IBD.

Yes, the sibling fighting is entertaining.:ymad:
My mom laughs and says pay back is awful.:tongue: