Still on Remission with enteral nutrition

Hi catasmom,
Thats fab! glad to see Cata is doing well and putting on some weight long may it continue for her Bevx

Wonderful!

Cata's mom,

It sounds like Cata's doing great. Terrific about the 20+ pound weight gain! Like you, I wish more people would give this a try. Good luck with the insurance battle—I suspect you will eventually triumph.

Dietcoke,

Enteral nutrition is an old treatment for Crohn's, developed back in the sixties. It involves the use of a full liquid-formula diet to induce remission, or use of the same meal-replacement drinks as a supplement to a regular diet to help maintain remission. Not everyone responds, as with all other treatments for Crohn's, but it can be as effective as steroids. (Unlike other diets hypothesized to work for Crohn's disease, this one has been tested against steroids in randomized, controlled trials.) Hope that's a start.

Hi that is great news about your daughter

My 16 year old son went onto it for 7weeks, he only managed to gain just under 3 lb though,but now back on solid food(eating everything in sight) he is now gaining weight (currently around 108/110 mark) He supplements with one liquid feed and one high calorie shake a day. He is still on the drugs too but he is gaining weight which is no bad thing.

Hope things continue well for you

So great to hear that Cata is doing so well still.  As for us, we are still holding on to a full case of the grape flavored EO28 Splash because my daughter thinks it tastes awful and refuses to drink it.  She's doing much better on 6MP at this time.

He is doing it orally, as he is at school I guess he didn't want to draw attention to himself with a tube. I recall when the dietician told him that if he couldn't take it orally then he would get a tube-he was shaking his head furiously!!
He is on the fresubin energy drinks (200ml bottles equalling 300 calories) For the seven weeks he was on 8 a day! The high calorie shakes again are by Fresubin(come in sachet and are added to full fat milk-these shakes are not nutritionally complete but are high calorie)
He was only diagnosed Nov 09 and we were referred to a fairly new consultant at the hospital who had used enteral nutrition at his previous hospital(with good results) and he was of the opinion that it would be better to give that a try first rather than hit him with the steroids. The pain stopped and he did gain those couple of pounds but when food was re-introduced he did get the sort of feeling he used to get before the pain came so he was then put onto steroids(now tapering of). He then packed on around 14lb in 3 weeks although at this point not to sure whether this is down to the steroids giving him an increased appetite, and/or fluid retention all whether the shakes are doing their bit. The past couple of weeks his weight has remained unchanged(despite eating any/everything) They want him to put on at least another 11/13 lb. He is painfree though( End of May till middle of July is big exam time for him-just hope the stress doesn't knock him back again)Like your daughter his energy is up too.
I think that it is good that your daughter is getting this early on-at least her body will be getting the nutrients that it needs, son's body has been deprived so are now waiting for an appointment to come through to see an endocrinologist (to see if it possible to give him something to help him grow a few more inches). I hope that your insurance does pay for them, it has got to be healthier and cheaper in the long run.
Mooby doo- We have a glut of lemon energy drinks hanging around that son has 'gone off' Daughter is home from uni and is using them to replace some meals as she is trying to lose weight!