6 weeks on enteral

[Charleigh]

E had labs drawn on Monday, which was his 6 week mark on a 100% liquid diet. We saw the doctor yesterday and he was thrilled. RBC, albumin, vit d, iron, etc, etc are all normal for the first time ever. E has put on 4 pounds in 6 weeks. His c-rp is down to a 4!!!!!! His SED is still a little elevated but it has come down. Same with platelets. I feel like we've seen enough progress to keep going and feel pretty confident about it. Yay!

 

[Pilgrim]

We had the same sort of improvement with our daughter with 100% Enteral Nutrition. We went backwards a little when we reintroduced food 50% after the first 6 weeks and had an issue with trying out Aza which we discontinued. We are at the beginning of our second round of 100% EN and plan to work with 6 week cycles on and off. No meds for now.

Are you introducing meds? What do you do after your first cycle of EEN? Are you using a tube or orally? Where is his Crohn's located?

Can't wait to hear more! Congratulations!

 

[Charleigh]

We had the same sort of improvement with our daughter with 100% Enteral Nutrition. We went backwards a little when we reintroduced food 50% after the first 6 weeks and had an issue with trying out Aza which we discontinued. We are at the beginning of our second round of 100% EN and plan to work with 6 week cycles on and off. No meds for now.

Are you introducing meds? What do you do after your first cycle of EEN? Are you using a tube or orally? Where is his Crohn's located?

Can't wait to hear more! Congratulations!

We are working with a research dr at chapel hill. He wants E on 100% for at least 8 weeks. Then we very slowly move down to 60%. E will remain at 60% enteral and it is supposed to (crossing our fingers) maintain remission. We'll see! I hope I remember the locations okay. Ileum, duodenum, and ... Somewhere else? I need to look at his file again. Sorry!
He is taking it all oral. They offered a tube, but he is doing fine with oral so we'll stick with that for now.

 

[Pilgrim]

I hope I'm not being a pest. I wonder where the doctor got his numbers from to work with ( the 8 weeks and then 60%). Did he happen to tell you why those time frames and percentage? The reason why I ask is that we were given our own choice of how long to go back on EEN. Anywhere from 6 weeks to 12 weeks was suggested. I thought 6 would do so we went with that.

Is your son part of a research study?

Our doctor is writing a paper on EEN, but I have no idea what his premise is. I'm going to press him for more info when we next meet.

When you go to 60% will you have a special diet for food reintroduction? (I saw your support group there and I've been considering trying an SCD when we go back to food if it is possible)

Aren't our kids great? It's tough to go without food!

 

[Charleigh]

No, you are not being a pest. No worries.

I have no idea where he got his numbers. E's GI referred us to him because he is supposed to be one of the leading Crohn's experts in the nation. E is not a part of a trial. This particular doctor is a research specialist and he is an advocate of EN. We were told 8-12 weeks as optimum, but I really have no idea. I can only go by what he says

We will slowly introduce and see how it goes. There are some foods we will continue to avoid, like gluten and lactose, because I am fully confident that those are issues for my child. The other things, like rice, potatoes, etc I am not sure about. I hate to restrict him more than necessary.

Our kids are great I would have never imagined that eating food would feel like a luxury.

 

[Charleigh]

Oh and I claim no long-term experience with EN. The plan we have in place is not guaranteed to work :/

 

[Pilgrim]

No disclaimers needed. I find from reading on this forum that no matter what the treatment: EEN, Immune Suppressants, Biologics, etc...predictability is really out the window. All we can do is share our experiences, hopes, and disappointments. And our research, too.

Seems like each person is very unique when it comes to this disease and it's course as well.

Sometimes I feel like I have to shy away from asking about or talking about diet on this forum, because it is not a research backed treatment. However, as we are all thoughtful adults, I think it's fair enough to discuss it as something that may have worked for an individual.

I had a hard time contemplating the no potatoes thing with SCD research. That was the one thing my daughter loved eating before she was diagnosed, but was in a flare. Potatoes roasted with garlic and olive oil. I thought it was a weird craving for a 3 year old. So it must have been doing something good. I'd probably want to keep potatoes.

 

[Charleigh]

We had great success with diet. E was down to 2-3 bms a day. Our dr has been pushing to get the inflammatory numbers down because of the fear of simmering inflammation and the damage that it can cause. So we've been exploring other things but aren't quite ready to try true meds yet. I believe the paleo diet can really help some people.