Enteral Nutrition and Fiber

[MegWain]

Hello, my 9 year old son was diagnosed with Crohn's 3 weeks ago. We started him on enteral nutrition therapy last Friday and it's going okay. The dietitian at the clinic gave us some samples of the various shakes he could use so that he could figure out which he liked best. We ordered his favorite online because it wasn't available locally, but we ran out of samples before the order arrived. I called the hospital, spoke with a different dietitian, explained the situation, and she told me she would leave us some samples of Boost for adults. She explained it wasn't safe for him to drink an adult formula long-term, but for a few days until our order arrived it would be fine. I picked them up yesterday afternoon, brought them home to refrigerate, and he drank three of them today. Tonight, I looked at the bottle a little more carefully and noticed they each contain 3 grams of fiber. All the other shakes they gave us had 0 grams of fiber. My first reaction was to be furious with the dietitian for giving us the wrong thing, but then I started to wonder if it's a big deal. I feel like he is making a huge sacrifice doing a liquid only diet and I don't want to screw it up for him, but this is all so new and I'm still learning and just don't know the answer to most of this stuff yet. I ran out to Wal-mart and bought him some Boost for Kids for tomorrow just in case the fiber is a no-no. Can someone weigh in and tell me if the 9 grams of fiber he had today is bad? Also, I just want to add that I have found this forum to be so helpful the past few weeks as I begin to learn all about this disease. I knew absolutely nothing about Crohn's just a few weeks ago, but with the help of this forum and many of you, I feel like I am beginning to get a good education, so thank you all.

Megan

 

[Mehita]

Hi Megan... welcome to the Forum.

When DS was on a low fiber diet, we were told to stay below 15 grams of fiber a day. I think on a typical day he was getting between 9-12 grams.

Were you specifically told to avoid all fiber?

We've never done full enteral nutrition so I can't help with that, but I'm sure someone will be along soon.

Good luck!

 

[my little penguin]

The extra protein is the issue for kids drinking adult formula
It is too hard on the kidneys.
Your durable medical equipment company should be able to get formula within 24 hours.

 

[Farmwife]

Hi and welcome.
I'm glad you found your way here but sorry you had to at the same time.
My Grace is on full EEN also. My four year old can do next to no fiber but her health needs are different.
Is your son talking the drinks by mouth or n-g tube?
Which shakes will be be on?

 

[Tesscorm]

Hi Megan,

This is a great forum for info, advice and support - it was invaluable to me at the beginning, still is!! So, happy that you've found it!! But, I am sorry that it was your son's illness that brought you here.

My son was older, 16, but also did EEN for six weeks. We were told no fibre, HOWEVER, I really wouldn't worry about one day!! As you said, it's such a huge challenge for them, I was absolutely fanatical about not making any mistakes but, what I've found is that there seems to be some leeway over restrictions amoungst GIs so, to me, I think that shows a little 'give' here or there won't be serious. I'd do as you've done and get right back to the no fibre but I really believe the one day won't make a difference.

It sounds like you've looked around the forum already but do also have a look for the Kids on EN thread in the Diets for Kids subforum - you may find additional info/tips re EEN in there.

Good luck!!! EEN was very successful in eliminating symptoms from my son; I hope your son finds the same success!! :ghug:

 

[zilla7777]

I agree with Tesscorm,
He is only a few days into the treatment so it shouldn't impact it all too much. He should also gain a little weight back if he lost any at all, which is a big plus

I'm in my 6th week on Modulen IBD, and it seems to be going very well despite having sugarfree gum for the first week (The GI said sugarfree gum, but dietician said sugared only.) I can see how fiber would have a little more of an impact, but I guess it's still anecdotal evidence that it's nothing too major. Ahah.

I hope for the best with his treatment!

 

[Tesscorm]

zilla7777 - the reason your dietitien probably said 'sugared' only is that most sugar-free gums contain sorbitol which can cause gastrointestinal issues. It's been a while but, I think I remember that the only sugar-free gum without sorbital that I found was sugar-free juicy fruit.

My son was allowed clear fluids while on EEN which included clear pop, etc. Sorbitol may also be in diet pops.

Our instructions with EEN specifically stated to avoid sorbitol.

http://en.wikipedia.org/wiki/Sorbitol

 

[zilla7777]

Yeah, I realised it was the Aspartame which I probably wouldn't want to be ingesting anyway. Has he adapted to the liquid alright? I must admit it's really weird being the only person drinking when school friends are eating and whatnot.

 

[Tesscorm]

Not sure if you are asking me or Megan ...

In my son's case, as he was allowed clear fluids, jello, freezies, etc. I sent him broth to have at lunch and arranged with the school to keep freezies in their fridge. I think that helped during lunch so that, as you said, he wasn't the only one not eating.

 

[zilla7777]

Oh ahahahah! My apologies, I can't believe I overlooked who I'm writing to! I must be getting tired. That sounds quite good that he had that leniency though, as long as it was still successful. I've been allowed juicy-fruit (as you said) and plain lollies/ candy with no fruit juice component like the "allens" jubes here or barley sugars.

 

[Jmrogers4]

Welcome Megan,

I agree with everyone else, I wouldn't worry about it just go back to no fiber. It is hard and you want to do everything right but there will be days of missed medicine, eating something he shouldn't. You just get right back on track. My son was on supplemental EN so was allowed to eat but we were doing it mostly for weight gain.

 

[Tesscorm]

Yes, I think the broth really helped... he was also allowed clear candies but most of what he was allowed was 'sweet', ie freezies, candies, etc. (and he doesn't have much of a sweet tooth to begin with :lol... even though the broth was 'clear', ie no noodles or anything!, it helped as it tasted like 'real' food and was hot, so a bit more like a 'meal'.

Megan - you might want to ask your son's GI if he's okay with some other clear fluids??? My son began to have a tougher time sticking with the EEN by the 3rd and 4th week, being able to have some broth or a freezie did help a bit.

 

[zilla7777]

Ahahah, that is the real kicker; it basically rules out savoury food!

I definitely agree though, having at least gum or lollies or SOMETHING different to the shakes definitely makes it easier.

 

[my little penguin]

We did some pure sugar with DS.
Dum dum lollipops
We make cotton candy out of the pure sugar
As well as "sugar" cookies
But that was it other than water

 

[CarolinAlaska]

Sorry, I don't know the answer about the fiber. You are probably right to just buy some on your own to tide you over. Is Boost what you will end up having him take when it comes in?

 

[MegWain]

Thanks so much for all the replies. I spoke with the GI dietitian yesterday and she said the adult Boost we were given was okay because the fiber was some sort of probiotic fiber and not a whole grain type. We switched back to the Boost Kid Essentials 1.0 and just received our shipment of the Boost Kid 1.5 today, which is what he will be on long-term, so we're good now. It will be one week tomorrow since Matt started EN. He is already feeling so much better. Today he was pain free all day!! We are leaving for vacation tomorrow, so I'm anticipating a tougher second week but I'm hoping the huge improvement in his energy level and no stomach pains is enough to keep him motivated. Thanks again everyone!

Megan

 

[Sascot]

That's really good. My son did the 8 weeks EN and by the end his energy levels were alot better and his tummy pain had gone. Hope it works as well for your son.

 

[Tesscorm]

Glad he's feeling the benefits!!! My son responded well quite quickly as well.

Hope all goes well while you're away!