enteral nutrition question

My son, age 15, just started a liquid diet using Ensure Plus for a lack of a better PO supplement. He says his stomach feels unwell at times during and after drinking it, while other times it's fine (he has it made into a slushie or just with ice). He drinks it slowly, so that is not an issue. He has tried Peptamen, Vivonex, and Absorb Plus, but these he can't even get down. Is there anything else out there that I am not aware of?? Has anyone tried total enteral feedings using Ensure Plus successfully? I'm not sure how long he can do this. Any help would be so appreciated.

I've done a liquid diet up to a week when I wasn't feeling well. When I did, I used Boost (High Protien, chocolate is best and definately need to refrigerate it) because Ensure always gave me cramps. I also balanced the diet with water and clear juices (like apple.) I'd start on Saturday and towards the end of the week introduce really bland protiens like eggs and tofu. Depending on how I felt, I'd go back to liquid or stay with the bland protien and liquid for a few more days. I'd more into mashed potatoes and apple sauce and carry that for ~ 2weeks. But never any longer. By the end of doing it, I always felt awful (tired, unfocused, etc) but my intestines felt better.

Another thing to try is the BRAT diet. Bananas, rice, applesauce and toast. Maybe try introducing those things when calm down a bit on the liquids.

Though if you're trying to go completely enteral nutrition, have you tried talking to a doctor about it? There are some prescription enteral formulas (as far I know).

Hope your son feels better and best of luck to him. The liquid diet is NOT an easy thing to do, but it might help him feel better. Just if he starts tolight headed, make sure he gets something into him with sugar in it because it's possible he's getting hypoglycemia, which can happen on the diet...

Hi Mijer's Mom -

How did your 2nd opinion appt go at Texas Children's? Are you still doing SCD and then using the formula as a supplement? Any meds at all?

It's hard to say exactly why his stomach feels "funny" after drinking the formula. Does he mean nausea? Or cramping?

Does he get the same feeling after he eats or just when he drinks the formula?

You and he are probably going to have to do some sleuthing to figure it out but here are some things I can think of or have experienced with my son that may be going on.

If it is just when he drinks the formula, he may be sensitive to something in the formula. If he's sticking to one flavor, you could try a different flavor. If he's using more than one flavor, you might try having him use only one flavor for 3 or 4 days and see what happens. If it's the formula (rather than the flavoring) I would think he'd have trouble no matter which flavor he drank.

In that case, there are many other options besides the ones you mentioned. I have heard that Splash and Vital/Vital Jr. taste pretty good but have no personal experience with them. Vivonex is truly nasty - my son was on that via NG tube for 8 weeks and just the smell of it was awful. I am not surprised your son couldn't drink it. Kudos to him for trying. (Peptamen isn't as bad as Vivonex but that's about the best that can be said about it in our experience.)

Another possible explanation for his stomach feeling "funny" after he drinks Ensure Plus is that Ensure Plus (but not Ensure) is a concentrated formula with a higher cal/ml concentration than regular Ensure.

This makes it a hyperosmolar formula. Hyperosmolar formulas can draw fluids from the body similar to the way certain kinds of laxatives do - for example Milk of Magnesia. This may promote diarrhea in some people and may be giving him some belly discomfort.

Usually this isn't a problem when you drink the formula because the stomach acid breaks the formula down pretty well. If you are working with a dietician (ideal but not always possible I know) they should have recommended a minimum fluid intake - specifically a minimum water intake. You don't want too much or too little and guidance from a dietician could be helpful with that aspect of using liquid formulas. He may have to experiment a little to figure it out if this is the problem and how much water to drink before/during/after he drinks the formula so he doesn't feel bad.

Drinking formula that's really cold makes it more palatable because it reduces the odor and intensity of the flavor. But very cold foods/liquids leave the stomach much more quickly than foods that are room temperature or warmer. So it might also be the coldness is causing stomach cramping or pushing the formula into the small bowel before it's been processed well enough and causing discomfort for that reason.

Other ways to help manage the odor (the biggest problem in our experience) or the taste include:

1. sticking to one flavor
2. use a covered cup and straw
3. add a small amount of an intense flavor like peppermint to the formula using extracts like the ones you use in cooking

If he has the funny feeling when he eats too then it may be that he's having discomfort from peristalsis - the muscular contractions of the intestines that move food through the gut. These are triggered by eating/drinking so there's not much to be done about that except wait them out.

Good luck,

Patricia

You have hit on the problem with drinking the formula rather than using an NG tube and a pump. How do you get enough formula in them? Especially if they are underweight and need extra calories it can be tough.

Having an NG tube doesn't necessarily mean he can't go to school. So you can disabuse him of that notion. There is no medical reason why he couldn't go to school with an NG tube in place although it would probably be a good idea to excuse him from PE. The pumps are very small and fit in special backpacks or fanny packs made for that purpose.

He has probably never had to have an NG tube for more than a brief period or he might not be asking for one. Yes, most people are able to tolerate it after a few days, but it is rarely "comfortable". And it's a hassle. And it's unsightly because you have to tape it down on your face. And it has to be replaced at least every 30 days. And having to fix the tape constantly means the skin on your face is not happy. etc.

What some families do is a combination of oral intake during the day and dropping an NG tube at night to supply the additional nutrition he hasn't been able to take in orally.

Here's a link to a 2009 article about the use of Exclusive Enteral Nutrition (EEN) in the treatment of pediatric CD. It has some really good info in it.

www.practicalgastro.com/pdf/April09/DayArticle.pdf

My son did exclusive enteral feeding via NG tube twice. The first time was very early after his diagnosis when he was 10. He did it for roughly 10 weeks. He had very rapid improvement in some ways - visible improvement of the colonic inflammation, beginning healing of his perianal disease, no more blood in stool. But it was not enough to get him into solid remission - at least not in that short a time. He was not on any other treatment at the time.

He did a second round of enteral feeding via NG about a year later after 3 hospitalizations for obstipation (his intestines shut down and were completely full of stool).

Based on these experiences and stories I've read from other parents using enteral feeding, I found a couple things in your reply that didn't fit our experience or the advice we were given when doing enteral nutrition. You may want to consult your doctor or dietician about these:

1. In the studies that I am aware of and in our experience, exclusive enteral nutrition (EEN) is most effective in bringing about remission when it is done as a strict, exclusive diet. Normally tea would not be allowed - that would include black tea, green tea, herbal teas.

During his first EEN the only things that my son was allowed in addition to formula were plain water (a specific amount not to be exceeded), one 7 up a day and 2 or 3 simple hard candies. The second time we did enteral feeding (different docs) he was also allowed to have slushies made from ice, sugar and flavoring from cooking extracts as well as "clear" Koolaid. And there were few limits on extra fluids. This is one part of doing this diet that is "fuzzy" and varies a lot from one place to another.

2. You really need a dietician to tell you how much water (including in the form of ice) it is OK to include in his diet. Since he is using a concentrated formula you need the correct balance of water to formula and a dietician is really the right person to figure this out for you.

3. That doesn't seem like enough formula for a 15 yo boy but I don't know his ht/wt and current nutritional status which all affect the amount of formula he would be prescribed. If he is drinking 5 cans of Ensure Plus he is only getting 1750 calories a day (assuming he gets all of it down).

Usually pediatric CD patients need calories in excess of the maintenance level. If he's 15 and 5'5" tall and weighs 110 his maintenance needs would normally be about 1750 cal. Often ped CD patients on EEN are prescribed as much as 150% of the normal caloric intake. Again this is why it can be essential to have a dietician on board to counsel you and his doctor.

I'm relieved to hear you decided to go ahead and try the 6-MP. I truly think your son needs to be on meds for now. 6-MP is a good place to start.

My son was switched to Methotrexate a couple years ago. At the time he was on 6-MP and Humira. I asked to have him switched because I knew that 6-MP had not gotten him into solid remission and I wasn't convinced it was the right med to use at that point.

Last year, after being on Humira for more than 2 years, my son decided he did not want to continue the Humira. The shots were very painful for him and he had been in solid remission for more than a year. His ped GI wasn't happy but also wasn't surprised. He said most of the teens try to go off their meds at some point. Sadly, he also said they always flare and have to go back on the meds, sometimes immediately, sometimes it takes a year or more. My son did agree to continue the Methotrexate and so far his remission is holding well.

It's my opinion (supported by our Ped IBD specialist's experiences) that pediatric CD patients with mod/severe CD (which is true of most adolescents with CD) need to be on a biologic combined with an immune modulator until they reach adulthood. At that point, it's uncertain what they will need to stay in remission but often they must continue that treatment regime in order to stay in remission.

Without intensive medical treatment, adolescents with CD often get really, really sick and have to have surgery or develop complications like obstructions and fistulas. I think (and there's some research to back this up) that the hormonal changes that happen during puberty help explain the severity of the flares many teens endure. If you can get them through that with a reasonably intact gut, things may settle down once they get older and they may be able to back off on the meds to some degree.

I would say that, if he's not losing weight, to just let him drink what he's able to drink for now. His body needs to make a huge transition and it's best done gradually rather than all at once. Once you find an experienced dietician, you will have the help you need to figure out how much formula he needs and how best to get it into him.

For the water, I would just have him avoid drinkign a lot of water right before he drinks the formula. He can do formula in small amounts all through the day - he doesn't have to do a whole can at one sitting. It's probably even best if he doesn't put that large a load on his system all at once. Making a goal of sipping enough to do one can in an hour with a break of an hour in between or even taking 2 hours to drink one can may help him manage the 5 cans in a day. He can do the same with water - sipping a small amount a couple times an hour in between sipping the formula.

I'm not surprised that the dietician you talked to was unsure of herself. If she's part of the GI team then I have to say I am dismayed at her lack of knowledge.

I think you should let the GI know that you would like to see a different dietician - one who has experience using enteral nutrition to treat or help manage:

growth failure and feeding problems
anorexia nervosa
bariatric surgery
short bowel syndrome

There are categories that don't exactly apply to your son but would require a dietician who may have the expertise you need in terms of calculating formula and water etc. You are unlikely to find a dietician outside of Texas Children's (and maybe not even there) with experience using exclusive enteral nutrition to treat Crohn's. But a good dietician would take the initiative to research a specialized diet if she had a client who needed that diet - that's what happened with the dietician we saw. And she networked with other dieticians until she found someone she could consult outside our area. I don't think it's unreasonable to expect that kind of support from your dietician and to ask for it. You may have to take the initiative to call around and try to find someone yourself that your insurance will cover.

Your son's BMI appears to place him below the 5% which is down from the 28% before he got sick. At that BMI I'm pretty sure he needs close medical and dietary supervision as sudden extreme changes in the quality and quantity of his nutrition intake (like going on formula) may have unintended side effects.

Are you working with Texas Children's or someone local?

If you are working with a local ped GI who doesn't specialize in treating IBD my advice is to seriously consider using the ped IBD specialists at Texas Children's for now. If you can get your son into solid remission with their help then you could transfer his care back to your local ped GI. We travel 100 miles each way to see my son's ped IBD specialist after near disaster under the care of 2 different local ped GI's and it is well worth the trip in my eyes. But I realize not everyone has the ability to do that kind of travel for medical care, especially when you may need to go every month or couple of weeks at first.

Yes. You are right on the money about using the formula to help manage flares. It seems that ped GI's (especially at the big IBD programs) are beginning to recommend enteral nutrition to treat flares that arise despite maintenance meds or to create a bridge to help induce remission while waiting for medication to take effect. Of course this is because of parents like us who have insisted on trying enteral nutrition (sometimes over our ped GI's objections) to our children's benefit. It may not get them into a secure remission but it absolutely improves their nutritional status and reduces inflammation quickly in most kids.

I use one called Elemental 028 extra. I have been using it for a year and for the first month or two it was my sole diet, including when I was in hospital having an abscess drained. I found it speeded my recovery and has helped me maintain remission for over a year now. I use it now as a supplement or occasional meal replacement. I found it helped me regain weight, I have put on about a stone. you don't dilute it, it comes in cartons with three flavours. I think you might be able to get it on prescription. Also it just looks like a juice carton so it's easier to take to school or work and not look different. I really missed chewing and was desperate for something crunchy, but I am really glad I used it,even though its mainly used for children. the good thing is that they are often just as effective as steroids without the side effects. Best of luck to your son

I continued to have pain etc the whole time I was on enteral feeding. The one thing that started me on the road to improvement was Remicade infusions, which I started while on a n/g tube.

If he is feeling so weak after coming off steroids it might be a good idea to give the doctor a call. The worst that will happen is that he will be interrupted, and I'm sure he'd rather hear your concerns than not.

Ivy.

It never hurts to talk with the doc or his NP. They pretty much expect it from patients who are recently diagnosed or transfer due to treatment failure. They may want to put him on Entocort or another round of pred, depending on his labs and how he's feeling. I would make sure that the lab results were faxed to their office and that the lab (or whoever is faxing the results) has the correct number and name of the person who will receive them. We draw labs locally and the results are sent to our pediatrician's office. They fax the results to the ped GI. That way both offices have a copy of the results and our local pediatrician stays in the loop.

From what you have said and you reported the doctor as having said, your son has been pretty sick for a long time. He's not going to feel great right away, I'm sorry to say. But most people who respond to enteral feeding have some improvement in symptoms within 2 - 4 weeks. Full healing when he's been so sick is likely to take a while.

And there are a small number of people who do not get into remission with this approach. That doesn't mean it's not worth trying - as you have seen, his weight loss has stopped and his nutritional status should improve even if he continues to have symptoms.

I would have him sip the formula and not down it all at once as I said previously. This may help ease that "weird" feeling he's getting.

If he's having painful bm's it may be that he has perianal disease - fissures and skin tags. If this is part of the reason for the pain, you should ask the doctor what he recommends to help with that. We used Aquafor - a thick ointment - to coat things so the skin was protected. My son got some relief from warm baths - plain water, no soap - 2 or 3 times a day.

The formula usually causes loose stools that sometime trend to watery diarrhea. If he's not having loose stools then he may need more water.

It's hard to say what the fatigue is about exactly. A lot of CDers have trouble with fatigue even when in remission. Pred tends to make most people hyper and may have covered up his fatigue temporarily. This would be a good thing to ask the doctor about.

It may be that your son is anemic. If so, the doctor may want him to take iron orally or, if he's very anemic, may want him to have an iron infusion.

Is your son resting a lot? It's time for him to listen to his body and take it easy when he can. It's good if he can continue to get to school but if the workload is really more than he can handle or is stressful because he doesn't have time to rest, I would contact the school and see if you can get a temporary reduction in his homework load.

You should check the CCFA website - there's a good section on working with schools that should be very helpful to you. If he doesn't already have a 504 plan, there's lots of info there on what that is, why he needs it and how to put one in place.

If he's doing PE at school, I would ask the GI if it's OK for your son to be doing normal PE activities right now. If not, you will need a letter from the GI either excusing him from PE or telling the school what limitations you son has and how long he expects them to last.

CrP is a general measure of inflammation over the past 24 hours. So it may fall if his overall inflammation is dropping. But it may take more than 9 days for you to see a big improvement.