Switching from Prednisone to EN

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Twiggy930

Twiggy930

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Feb 2, 2012
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My son had his GI appointment today and the Prednisone does not seem to be inducing remission so we are switching to total EN. He is going to stay on the Pred until they feel the EN is working and then they are going to taper him off the Pred. We have to go back either later this week or early next week to learn how to insert the NG tube. My son is much more receptive to the idea of this treatment now then he was a month ago, immediately after diagnosis. He is actually kind of looking forward to learning how to insert the tube so he can gross out his friends! I am really, really, really hoping that it will get him feeling better but I got to say that I HATE that he has to do it!

Question to all EN veterans... What formula did you use? We have been offered a choice of Boost, Ensure or Modulen.
 
Ok so I know absolutely nothing (personally) about EN, however I just want to say that I LOVE his attitude about "freaking his friend out"!!! LOL
Best of luck with the new treatment plan! :)
 
Good luck Twiggy! I so hope this does the trick for your boy and he is soon in remission and feeling fab!

I'm sure Tess and J will be along with some great advice and tips! :)

Dusty. xxx
 
Twiggy, don't be hating on EN!
I am in love with it and with the NG tube. :hug:

Within HOURS of starting formula feeds via NG tube and pump, V was free of gut pain and the low grade fevers. Within a month she was free of all symptoms and back to school, full of energy, living life and continued to do so for 3 years and NO DRUGS.
She had huge weight loss before dx, from 78 to 59lb and 55in.
She was 99 lbs 4mos later. Now she is 63in and 134lb.

I was so freaked out about the idea of the tube at first that I had them SEDATE her to put it in in hosp! She went to school for the first three mos with it INDWELLING.
Then we started taking it out ourselves, SO EASY, I felt like a fool for making such a to-do over it at first!
The key is to have them drink through a straw while inserting. This keeps the epiglottis closed. V doesn't even gag with this method. It takes literally ten seconds to do.
None of her friends know she does this, unless they sleep over.

I LOVE this harmless, efficacious treatment and 3.5 years later she is still using it and shall until her growth is complete at age 16. The idea of impaired growth which so many of these kids seem to have due to malabsorption (even when they eat a good amount) is not acceptable to me when I can guarantee her nutrition this way.

Now V has always eaten food and was never "exclusive". That made it easier for her to comply with. BUT the first month she ate hardly anything.

I hope your boy gets awesome results also! Even if it doesn't put him into full remission, the nutritional benefit is worth it. V uses Vital Jr which has just been renamed Pediasure Peptide.
 
Hi Twiggy,

I could pretty much just copy and paste Julie's post! My son has had a very easy time with the NG tube, he has always used it at night only. Inserts it each evening and removes in the morning. Although he is older than your son, he is still a 'boy' and, yes, his friends did come over and 'wanted' to watch! :lol: He's done it many, many times with friends watching during sleepovers. And, as far as I know, all his friends know about it... And, there were even instances where he wanted me to 'time' him.:yrolleyes:

He'd also lost close to 20 lbs before diagnosis and within three months gained 30 lbs and stabilized there. His first six weeks were the formula only (his formula is Tolorex and comes in a powder form). He was allowed only broth, clear juices or pop, jello, freezies and clear hard candies (ie Lifesavers). His physical hunger was manageable for most of the day but he would be hungry by dinner. To alleviate 'behavioural' hunger, I sent him broth to eat at lunch with friends and arranged with the school for the office to keep freezies on hand for him. At night, all he could have again was broth. I 'tried' to add some variety :)lol:) by heating up the broth with different spices and then straining.

After the six weeks, we gradually added back all food over a period of 3-4 weeks and his dosage of the formula was gradually cut back (he now has 1/2 the dose, 5 nights per week).

Nexium is his only med.

Yes, have him 'swallow' the tube while drinking water (he would insert and I would hold a glass with a straw). Nurses told my son some people find it easier to use one nasal passage over the other - my son always, always uses the left side. Once inserted, run the tube over his ear and then use a small hair clip to attach it loosely to his t-shirt at night.

As Julie said, I am so happy that Stephen was given this treatment option. He's always been a picky eater so the nutritional benefits have really eased my concerns over his nutrition.

Good luck :)
 
Right, over the ear and then a small piece of tape at the neck is how we do it, plus tape horiz on the cheek.
V tried several tapes and found "Coach" tape or "sports" tape, used by athletes to tape ankles, is sticky enough to secure the tube but not so sticky that it caused pain when removing (that could not be said about other tapes!).
The tape the home health care sent was the WORST, the tape bothered her more than the tube, so seek different tapes until you find one HE likes.
You can lubricate the tube a tad with some vegetable oil if you really want ease of insertion, but we stopped doing this after just a few times.

Oh and if he keeps it indwelling, FLUSH it at LEAST THREE times per day with just water from a 10cc syringe to prevent clogging! This happened to us at first as no one told us to flush and I panicked.
More tube care: if he does remove each day, flush after removal with 50cc water and 50cc white vinegar, then hang to dry. We change tubes every seven days.

Tube size makes a BIG difference in comfort. V uses an INFANT sized tube still even though she is a big ox. It is about as big around as cooked spaghetti, maybe a tad bigger.
 
Hi, my son did the Modulen although he kept the tube in all the time for the 8 weeks. It certainly did the trick and he is keeping ok. Good Luck!
 
Thanks all for your advice and words of encouragement. It has definitely eased our fears and lifted our spirits. :)

Right now feeling a little guilty that I let him have pizza last night. He wanted to have something he really liked before he has to go without all the real food for 6 weeks. He paid the price last night and this morning. :frown:

Although we are a little apprehensive we are mostly hopeful that this will bring him some relief.
 
Save apprehension for the DRUGS.
This is totally SAFE. It will help him, even if only nutrition wise.
I'd use it with or without drugs, it's guaranteed nutrition. No more worry over what they eat, no worry over how much of what they eat is being absorbed.

V's doc speaks of its anti-inflammatory properties as the reason V's growth and development has been so stellar, and she has been so healthy overall despite active Crohn's.
You'll be glad you did it, trust me. :thumleft:
 
My son had McDonalds for his 'last' dinner and then McDonalds for his 'last' breakfast!! :ybatty: We were at the hospital and his GI stressed over and over that Stephen was to eat WHATEVER he wanted until the EN began! I felt terrible giving it to him but didn't have the heart to say no, especially when the GI kept saying 'go for it! Enjoy!'. :eek: So... pizza's not so bad! :)

Stephen's full dose ran for 10 hours (200ml/hr), however, once we were home, Stephen was given the option to try to bump up the rate to 300ml if he was able to tolerate it (i.e. no nausea). We didn't do it often but, once in a while, when he had a later evening and then school the next day, we did speed it up. Ask your GI if this is an option. I also didn't have the heart to take away an evening activity such as a hockey game due to the scheduling - if it was necessary, I just let him go to school late so he could finish the formula.

A couple of times, he also ingested some formula for an hour or so after school and then finished it at night. This also helped 'schedule' and alleviated a bit of hunger if he was going to have a later night. Again, ask your GI if this is an option. Keep in mind this means inserting/removing the tube an extra time.

My son did find the sensation of having the tube in his throat annoying the first few days. It never caused any pain or irritation but just took a few days 'forget' about the sensation.

Just be prepared that the 'no eating' will get tough as time goes on and as he starts to heal. Have different flavours of broth on hand - my son's favourite became a mix of 1/2 chick and 1/2 beef. I changed it up by heating it up with rosemary, basil, etc. (even a tiny bit of chili peppers! - Dietitian said it was fine and Stephen likes spicy:eek:). But no sauces - no bbq, ketchup, etc. And always strain it. Also served it in different 'containers' - soup bowl with spoon for dinner, in a mug before bed, etc. To change up the jello, I used plain gelatin with apple juice. But, in reality, while these things may have been a 'novelty', they weren't nearly enough to offset the desire to eat real food... this was, by far, the toughest aspect of the EN.

A very strange thing... my son began to watch the food channel!!! :ybatty: :ybatty: When I'd ask him why he was torturing himself, he said he felt better imagining that he would be eating those foods later. (You have to understand my son is the pickiest eater EVER... he'd never even tried soya, mustard or mayo until after EN!) When I mentioned it to his nurse, she told me that many kids on EN or TPN do the same thing... start looking through cookbooks, etc. - she thought it gave them a connection to food.

So, just a heads up to be ready to help your son with this aspect of EN...:frown:
 
I used Ensure- chocolate- on ice. Not bad- I was on a liquid diet for 6 months. I too had a
hard time getting into remission with prednisone. Finally had a dr put me on a low dose with a slow tapper. And I really mean slow. Otherwise I would flare again after a few weeks.With this flare I am on Entocourt- seems better although I dont even know yet if you taper off this one?
 
I was on a liquid diet for 6 months. I too had a
hard time getting into remission with prednisone. Finally had a dr put me on a low dose with a slow tapper. And I really mean slow. Otherwise I would flare again after a few weeks.With this flare I am on Entocourt- seems better although I dont even know yet if you taper off this one?
 
Another thought, V was tried on regular Pediasure (similar to Ensure or Boost in composition) and had WORSE gastric distress. She had to be switched to a PEPTIDE based medical grade formula that per GI "emptied the stomach twice as fast" as her gastric motility was really affected at the time.
SO if he doesn't feel right on regular food-grade formula, ask GI about using a peptide based. V could not have tolerated Ensure; she needed the more "broken down" version.
 
ARGH!!!!! We got our appointment to learn how to insert the NG tube and it is not until March 20! I had expected it to either be at the end of this week or beginning of next. Now that we have decided to do this I just want to get on with it. My son pointed out that this might mean that he has to do the EN for less time as the Azathioprine will have had more time to kick in. When did these kids get to be so smart, he's only 10!

I HATE waiting!
 
There were some comments on another thread about how smart and resilient these kids are! And, they are really great! :Karl:
 
Twiggy,
About the types of formula. I have heard very good things about the modulen although I was unable to get it here in the States. We used pedisure peptide when caitlyn tried it. SHe was not successful because she refused the NG tube and was unable to drink so much.
 
Waiting is my ENEMY :hallo3: I HATE waiting for anything, esp something I have less than thrilled feelings about.
Can the GI office just let you pop in and a nurse can instruct? Ours offered to do that for us, but we ended up watching a youtube vid and doing it ourselves (not recommending this for everyone but we were daring like that and I have med/sci background).

And have you noted, Twiggy, the PLETHORA of kids on here who were dx at age 10??
 
So we FINALLY had our appointment to learn how to insert the NG tube. Sam was actually looking forward to learning how to do it as he has decided it is cool. Go figure! The awesome GI nurses explained everything to him and showed him all the equipment and he did it very calmly on the first try!!! The best part for him was that he found out that he can use a syringe to suck out some stomach acid (done to make sure the tube has actually gone into the stomach) and I fear he is now planning some "science" experiments that involve stomach acid :eek: It was actually easier for him to learn to insert the tube than it was for him to learn how to swallow pills. He was so impressed with his new skill that when we arrived home the first thing he did was demonstrate it to his 9 year old sister and grandmother just for "fun" :lol:

Tonight we are going out for his last dinner, which he as chosen to be fish and chips. I'm sure it will cause no end of GI distress but after today I think I would let him have whatever he wanted. We will try a small and slow feed with the pump tonight and see how it goes. So far this is going way better than I expected.:ybiggrin:
 
Oh AWESOME...that makes me so glad to read! It really is no big deal to insert, it's more the thought of it. The reality is kind of anticlimactic. :wink: I sure hope he gets better fast, I bet he will!
 
I'm so glad it's going well!!! :) :) Stephen's GI let him eat whatever he wanted too - think it was McDonalds for dinner, a McFlurry before bed and McDonalds breakfast! Ugghh! I think I asked the GI (we were in the hospital at the time) if he was SURE that this was okay before each meal!!!??? :lol:

Tip - the stomach fluids... do NOT do it after he drinks or eats something red (Gatorade, freezie, jello - if he's allowed). Stephen and I once freaked when the fluid came out RED! We're both staring at it, of course, thinking blood! :eek: Until Stephen started laughing and said he'd had a red freezie! :voodoo:

Another tip - not sure if I mentioned this to you before but wrap a bit of tape at the point where the tube meets the end of his nose. This way, when he's inserting, he doesn't have to stop to see 'how much more' - he just goes until he feels the tape.

Again, am so glad it went well! Enjoy dinner!! :dog:
 
That is great news!! I'm so happy the appt went well and Sam got the hang of inserting the tube so quickly. I know that has to be a huge relief! We are about to head down that same road and I hope it goes as well for us.

I'm curious, how long has he been on the Pred?
 
Thanks everyone! We are so happy today.

Tess - I am totally going to do the tape trick for measuring the length of tubing. Excellent suggestion. Thanks!

Mom2oneboy - He has been on Pred for almost 7 weeks. He started at 40 mg has started to taper by 5 mg per week. At the moment he is at 30 mg. I am hoping that once he is on EN and it is working that we can taper a bit faster. Our GI said that this would be possible but I don't know what that taper would look like.
 
Just wanted to chime in and say I'm glad it's working out for you so far and congrats to your son on learning to insert the tube and having such a great attitude - what a champ!!:emot-dance:
I really hope you have great success on this treatment too - I know the doctors were skeptical as to whether or not my son would achieve remission when we started due to the severity of his presentation and the fact that he had a lot of colon involvement but it really did the trick and like a lot of others here have said, it was great for weight gain and getting the nutrition in (he gained about 25 pounds).
It took a few weeks before I really saw a dramatic improvement... I remember being impatient that he was not gaining weight sooner but he did report feeling a little better about 1 or 2 weeks after starting even though his weight was the same.
I'll be waiting to hear updates :ysmile:
 
S Mom, how long did it take your son to get into remission once he started EN?

S mom said:
Just wanted to chime in and say I'm glad it's working out for you so far and congrats to your son on learning to insert the tube and having such a great attitude - what a champ!!:emot-dance:
I really hope you have great success on this treatment too - I know the doctors were skeptical as to whether or not my son would achieve remission when we started due to the severity of his presentation and the fact that he had a lot of colon involvement but it really did the trick and like a lot of others here have said, it was great for weight gain and getting the nutrition in (he gained about 25 pounds).
It took a few weeks before I really saw a dramatic improvement... I remember being impatient that he was not gaining weight sooner but he did report feeling a little better about 1 or 2 weeks after starting even though his weight was the same.
I'll be waiting to hear updates :ysmile:
Click to expand...
 
He started it in mid September and I remember going for an appointment to see the GI at the end of Nov. and thinking that he seemed symptom free at that time and the GI agreed - so if I had to guess, I'd say about 6 to 8 weeks? which is actually quite amazing considering how sick he had been. I think the worst of the symptoms had decreased about 4 weeks into it and he was starting to pack on the weight and get some colour back. He continued on EN until mid Dec. (12 weeks) - just to "make sure" and then started eating again (hooray:ysmile:).
I remember that it seemed overwhelming and quite daunting when they suggested it but once we got used to it, it was no big deal... just part of the daily grind - and I joked with my son when he was done that it was much easier feeding him when I could just dump a can in a bag and let the pump do the work!!
 
The feeds are going well, aside from a few technical glitches here and there, but last night he started having blood in his stool! Of course this happened when my husband and I were out at a wedding. He had blood in his stool before diagnosis but never this much. He has also had an increase in the number of BMs. This STINKS. :voodoo:

Why do things like this always happen on the weekend. Trying to decide if we should contact the on call GI today or just wait until tomorrow and contact our regular GI through the GI nurses. At the moment I am leaning towards waiting until tomorrow, unless of course things get worse. :frown:
 
AW, Twiggy...what in the holy hell? I don't think the formula caused it...unless he needs a more "broken down" version. Violet required a peptide based formula to see results, the regular one made her worse.
Just some hugs and love :ghug:
 
Stephen didn't experience anything like that either. :( He did have a few incidents of mucus with specks of blood, but just 'specks'. This would last for a day or two and then disappear. He also had 'diarrhea' for the entire six weeks of formula only. I know this isn't the case for everyone but we had been warned that it is common - only liquid going in so... liquid coming out. I would call the on call GI, if for nothing else but some reassurance.
 
hey, Tess.
I was told the opposite re: liquid stools...V always does five days of formula only as a prep for scopes every year, and clear liquids the last 24hr, because her doc says the stools will still be formed w/formula, and in the way of the scope. She always has completely formed, usual stools even when on the all-liquid fast. Weird. :blush:
 
I don't have any advice about which formula either but I :heart: his attitude!!!!

J.
 
Julie, that is strange... Stephen had ONLY very soft, pretty much diarrhea-like stools, very light coloured (almost like the formula) for the entire six weeks. No issue with urgency but, I think, about 5 times per day. But, this was exactly what the dietitien had told us to expect. As soon as he added back food, his stools became normal. But, considering he gained weight and symptoms disappeared during the six weeks, it wasn't a matter of the formula going right through him. Who knows???

Twiggy, let us know how he's doing! Hope it's a bit better
 
He had another BM today and there was no blood. Just to keep things interesting though he now has a very sore leg and can't put weight on it !?!?!?! He did go skiing on Friday and had a baseball practice yesterday so maybe the leg is just an over use thing, from two months of inactivity. I have no idea what is going on!
 
Maybe the blood was just an isolated incident :thumleft:

And, I agree re his leg... it probably is related to the skiing and baseball. But :ybatty: , even after all these months, Crohn's is still the first thing I think of whenever Stephen has any issue! :ghug:
 
Oh no Twiggy! I hope things continue to settle with the bleeding and the leg is a case of overuse! Good luck!

Dusty. :heart:
 
Hoping the blood stays away...Izz also had stools that were soft, unformed, and looked like the formula (we used peptamen junior). I am amazed at how easily he inserted the tube...wonderful!!
 
I hope the blood stays away. My son did have a couple of times near the beginning of EN when his symptoms became a little worse for a couple of days (it took about 3 or 4 weeks before the blood was completely gone for good). There never seemed to be no rhyme or reason to the increased diarrhea but it always sorted itself out within a couple of days - I hope that's the case for you too.
After about 8 weeks he didn't really have any more problems - about 2-3 dark semi formed stools a day (that number increased when he started adding food back in again) - as usual, I guess everyone is different.
 
Twiggy, I don't know if you saw my posts about V's LEG going weak out of NOWHERE.
It's finally resolved, after...weeks?
No reason for why it started nor its resolution. She needed a cane to walk for awhile it was so bad. BUT NO INFLAMMATION per her phys therapist and the docs!

Re: the stools, I know, it makes NO SENSE...but I witness it every year, five days of nothing but formula and still perfect Mr. Hanky stools.
The year before last I didn't do the 24hr clear liquids and The Saint knew...he came in as he always does straight from the procedure room and said, "it was like Skippy peanut butter in there, you didn't do the Pedialyte did you?" (mortification) :eek2:
 
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No more blood so we are just keeping an eye on things. Fingers crossed that it was a one off event.

Leg still sore. He says the pain is in the front of his upper thigh. A pulled muscle from baseball is my best guess but he is really avoiding bearing any weight on it. I was thinking today that a cane might not be a bad idea.
 
Hi Dusty,

My son is coping very well with the EN. He can insert the tube like it is nothing and has adjusted to sleeping with it very well. He finds not eating a challenge at times but is managing. There has been no more bleeding but his leg is still sore, although he seems to be putting more and more weight on it. So far he still can't make it through a full day of school. :( I am waiting for EN to work its magic.
 
I hope you start seeing some more of an improvement soon! :)

Is he allowed clear fluids? Stephen was allowed broth, jello, clear pop and clear (no fiber) juices, gatorade, freezies, clear candies (like Lifesavers - no chocolate or caramel candies). It wasn't much but, at least, he was able to have broth at lunch (with friends) and, in the evening, I would give him some in a mug...

What I found with Stephen was that going without food got a bit easier as the first few days passed, BUT, exactly as our dietitien had warned, weeks 3 and 4 were tougher challenges. I suppose the 'novelty' of the treatment wears off and you get tired of always telling yourself 'no, no, no'. :( It did pass again but was tough. Also, we were told as the healing progressed, appetite also improved - perhaps ties in with the more challenging 3rd and 4th week. Perhaps try to plan for some after school activities, into the evening, for these weeks to keep him busy until closer to the time the feed starts.
 
Tess - You told me earlier about simmering broth with different herbs and then straining the broth. I have done this with beef broth and rosemary and he LOVES it. Funny because prior to doing EN he wouldn't touch broth of any kind with a 10 foot pole! Thanks for the tips they are helpful!
 
It really is so tough for them!!! Stephen was always such a picky eater but towards the end of the six weeks, he took to 'sniffing' condiments in the fridge!! Asking 'so, what does mustard taste like?' 'hmmm, what do you use this hoisin sauce for?' ! During the six weeks, he started watching cooking shows (!!???) and would tell me that, once he could eat again, he wanted me to start using certain spices like paprika and cilantro because they looked good on tv! Used to break my heart :( as I passed him is basil-infused chicken broth! :eek: You've really got to be proud of these kids for their determination!:medal1:

Unfortunately, his desire and interest in trying new foods faded very quickly once he could eat again! Back to his old picky self...:ymad:
 
Tess - Did you make the soup stocks yourself or buy them? I have some chicken stock that I have made in the freezer but it is not totally clear. It doesn't have any chunks but it is cloudy, not clear like the store bought stuff. Do you think that matters?
 
I used Organic broth. I tried to make my own broth and, like yours, there were no chunks but it was cloudy. I tried straining it through cheesecloth and another 'finer' cloths a million times, but it was still cloudy and had 'sediment' at the bottom. So I never took the chance in giving Stephen my broth.

BUT, I mentioned this to the dietitien, and she said she preferred homemade, few chemicals, etc. and said the cloudiness/sediment was okay. I was nervous about it and just didn't want to 'rock the boat'...


I 'think' the brand I bought was President's Choice at Loblaws. But, it was in the organic section and is in a white container box with green lettering/labels.
 
Boy I wish that I had had you two looking after me when I was on Total EN! You both are doing/did and amazing job helping your kids cope with EN.

May both of your kids continue to do well on the EN.
 
:lol: Hope you never have to do it again but, if you do... come on over!!! I make a mean cilantro chicken-beef fusion broth! :biggrin:
 
Yummy- a gourmet clear fluid diet! Thanks for the invite, but I hope that you don't mind that I hope to never accept it.
 
We could have a soup party. When I get to eat soup again I will be adding a bit of cumin to it which makes it much more tasty!
Do you think the Soup Dragon from the Clangers would come to our party?
 
If you haven't seen the clangers you haven't lived. It must be a British thing. It was one of my fave programmes as a child. The clangers are cute pink mousey creatures who live on a far away planet with the soup dragon. They sort of whistle to communicate.
Look on you tube - many of the episodes are on there!
 
Twiggy and Tesscorm,
Soup dragon is just who you need to prepare all that broth!

"The clangers are cute pink mousey creatures who live on a far away planet with the soup dragon. They sort of whistle to communicate."

littlemissh, Re-read the previous statement. You must be on prednisone!
Seriously, the mousy things are cute, but that dragon is scary. What fun. Now go watch some episodes and have a good laugh and I'll stop highjacking this thread and get back to work.
 
Clangers... Soup dragons... :lol: was too curious not to google! But, must have been a British thing - never remember seeing them! :)
 

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