Can you tell me more about this. I know it's a liquid diet, but is it a special formula? Do you need a tube? If so, how does tube work? Is it 24 hrs? Just curious. Is it supposed to be as good as meds? How many youngsters are actually doing this? Can you also eat solid food with it or no? Still ignorant about so much....
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Enteral nutrition Q
- Thread starter Worried mama
- Start date
EEN is exclusive enteral nutrition meaning using the formula exclusively.
The formula can be otc boost or ensure or can be px'ed formula like peptimen.
The patient can drink it or use an ng tube. The otc are drinkable but some of the px'ed aren't real palatable(depends on what the patient wants to do.
The ng tube can be aced and left in or the patient can take it in and out.
My son was on EN(enteral nutrition)but not exclusive so he was allowed food too. His was for weight gain/nutrional boost.
When used as treatment usually instead of steroids the patient does EEN for 6-8 weeks.
Some kids are trying EEN to EN cycles as treatment for their CD. Meaning they do exclusive for a number of weeks then back down to 60% formula and 40% food.
The formula can be otc boost or ensure or can be px'ed formula like peptimen.
The patient can drink it or use an ng tube. The otc are drinkable but some of the px'ed aren't real palatable(depends on what the patient wants to do.
The ng tube can be aced and left in or the patient can take it in and out.
My son was on EN(enteral nutrition)but not exclusive so he was allowed food too. His was for weight gain/nutrional boost.
When used as treatment usually instead of steroids the patient does EEN for 6-8 weeks.
Some kids are trying EEN to EN cycles as treatment for their CD. Meaning they do exclusive for a number of weeks then back down to 60% formula and 40% food.
As Clash said above, it's basically drinking things like these http://www.walterlloydhealthcare.co.uk/files/sxdetail/8712400684187_IMAGE2.jpg instead of a normal diet.
I have to say it is quite hard to do that exclusively in the long term, but it can even help if done partially as Clash said.
I have to say it is quite hard to do that exclusively in the long term, but it can even help if done partially as Clash said.
In a bit of a rush now but here are some links with additional info.
http://www.crohnsforum.com/showthread.php?t=36345
http://www.crohnsforum.com/showthread.php?t=39758
http://www.crohnsforum.com/showthread.php?t=22753
http://www.crohnsforum.com/showthread.php?t=36345
http://www.crohnsforum.com/showthread.php?t=39758
http://www.crohnsforum.com/showthread.php?t=22753
In theory you are supposed to drink it, but a lot of them taste awful. My son couldn't manage so he had the NG tube in for 8 weeks. I just "fed" him through the tube at mealtimes and snack time. It was difficult at birthdays and Halloween, but in general the coped well and it certainly got rid of his tummy pain.
My son is consdering trying something to help him put on some weight. I say considering because I don't have much faith that he'll actually stick with it. He refuses to consider an NG tube right now. For those that have had kids that drank their supplements what, if any, are the better tasting ones? Should I get unflavored and add juice or some type of flavoring?
I can't speak for kids but for me personally, the flavored supplements were not just massively too sweet, they were also horribly tasting. The neutral ones don't taste well either, but at least they are bearable from a sweetness factor. It's better to drink them chilled. I never tried to add anything.
We have tried many. M found Peptamen Jr very sweet but could drink it. She didn't like the taste at all but got used to it over time (we did have to bribe her in the beginning!). She had the Peptamen 1.5 Jr (1.5 times the calories) because it much thicker. She will only drink chocolate Peptamen Jr but there is also vanilla and strawberry. We've tried the unflavored one and she puts chocolate syrup in that sometimes - at least with that you can control how sweet you want to make it (you do have to put in quite a lot of chocolate syrup though, to hide the nasty taste).
We've also tried Ensure and Boost (OTC less broken down formulas) but she couldn't tolerate them and didn't like them.
Pediasure Peptide is another we have tried (but she didn't like). Often GI's offices have samples (our GI did at least) and let us try a couple before we went ahead and got a whole box of 24.
We've also tried Ensure and Boost (OTC less broken down formulas) but she couldn't tolerate them and didn't like them.
Pediasure Peptide is another we have tried (but she didn't like). Often GI's offices have samples (our GI did at least) and let us try a couple before we went ahead and got a whole box of 24.
Our daughter is on her second round of exclusive enteral nutrition. She drinks Boost or Ensure that you can buy from the grocery or drug store. She drinks the kind that say "plus calories" so that she doesn't have to drink as many bottles. We've tried different flavours but she will only drink chocolate.
She drank nothing else for 6 weeks. We then moved to less and added meds but that was a problem for her. So, now we are doing another round of 6 weeks exclusive (nothing else but water).
There is a good book called "Beat Crohn's - Getting to remission with Enteral Nutrition" which you could order off of Amazon.
It has good success rates in the pediatric population. There are different ways of doing it but as I understand it, the very best success rates are when the child takes it 100%, although there has been success shown in some kids who do 80/20 (enteral nutrition/food). We were offered the NG tube but she is drinking it just fine, so we are just trying to do this orally. A lot of kids get used to the NG tube no problem who have it.
She drank nothing else for 6 weeks. We then moved to less and added meds but that was a problem for her. So, now we are doing another round of 6 weeks exclusive (nothing else but water).
There is a good book called "Beat Crohn's - Getting to remission with Enteral Nutrition" which you could order off of Amazon.
It has good success rates in the pediatric population. There are different ways of doing it but as I understand it, the very best success rates are when the child takes it 100%, although there has been success shown in some kids who do 80/20 (enteral nutrition/food). We were offered the NG tube but she is drinking it just fine, so we are just trying to do this orally. A lot of kids get used to the NG tube no problem who have it.
We used the powdered vanilla ensure and added chocolate nesquick, put it in the blender then let it sit in the fridge until it was really cold. My boy didn't mind drinking it we just had a hard time drinking enough to get the right amount of calories. In the end we have had to go back to the steroids but we are still drinking a couple of ensures per day. Good luck.
DS used peptamen jr with prebio
He drank it all orally for 9 weeks
While on 6-mp.
After the 9 weeks of EEN he switched to 2-3 peptamen jr with prebio a day and has been on that plus additional meds for about three years.
It has helped him keep up his weight and growth .
We add chocolate syrup to the peptamen jr with prebio since that only comes in vanilla
We have aslo added maple syrup and honey to change up the taste.
He did drink 3 kids boost a day prior to dx for about 8 months but that wasn't broken down enough for him to gain weight .
He drank it all orally for 9 weeks
While on 6-mp.
After the 9 weeks of EEN he switched to 2-3 peptamen jr with prebio a day and has been on that plus additional meds for about three years.
It has helped him keep up his weight and growth .
We add chocolate syrup to the peptamen jr with prebio since that only comes in vanilla
We have aslo added maple syrup and honey to change up the taste.
He did drink 3 kids boost a day prior to dx for about 8 months but that wasn't broken down enough for him to gain weight .
My son has done the EEN [ modulen in the UK ] 3 times now for 6 weeks each time. Twice he has drunk it from a beaker adding the flavouring to it. It took him a few days to drink the amount required and get used to the taste, but he did manage it. The hardest part for him was having to do exclusive over his birthday and Christmas.
The third time he did this he had a tube, which he felt was better and if he had to do EEN again he would opt for the tube.
We are told apart from the odd clear boiled sweet or clear jelly they can't eat anything while doing this as it compromises what is being done, and the whole point of doing it is to give the bowel a rest, so by eating something it can upset the bowel again.
We have had good results doing this, though it is hard to do for a child. But if like Josh they start to feel much better, then it is well worth giving it a go.
The third time he did this he had a tube, which he felt was better and if he had to do EEN again he would opt for the tube.
We are told apart from the odd clear boiled sweet or clear jelly they can't eat anything while doing this as it compromises what is being done, and the whole point of doing it is to give the bowel a rest, so by eating something it can upset the bowel again.
We have had good results doing this, though it is hard to do for a child. But if like Josh they start to feel much better, then it is well worth giving it a go.
Thanks, don't think we are going this route, but it's good to have the info. We do supplement with 2 ~ 3 boost+ a day! just for added calories.