When do I know EEN isn't working for my teen?

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SupportiveMom

SupportiveMom

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I thought I would post this here though it could move to the EN section too but I know some of you have done EEN for your kid.

I am wondering if this EEN is actually working. After coming home on 4/22 she has been on feeds (5 a day). She has had a lot of nausea, and has vomited her tube up once (Thursday 4/24). She is still vomiting, but mostly a bit of spit. She has learned a new technique to not projectile vomit that would mean her tube to come up. (She keeps swallowing rapidly until it goes away) 4/24 was the last time she vomited anything worth measuring. Right after the nurse left for her 11:30 feeding she vomited almost the entire 250 ml right out. It just poured out her mouth so her tube stayed in.

She is now down 1 lb since going home 4/22. Still absolutely no energy. Sleeping a lot or hanging out in her bed. Bathroom trips are still just as frequent, just almost nothing is coming out (a bit of mucus mostly). Not really blood, but kinda hard to confirm as she has her period) So the question is: When do I take her back to emergency to say this isn't working? Do I just continue with this? If this isn't working what is the next step?

I already have a call in with the doctor. Normally she calls back quick but it must be a busy day as I haven't heard back.
 
So sorry to hear that she doesn't seem to be improving yet. Since C was put on EN due to failure to thrive I can't say what time frame you should be looking at as treatment to flare. I'm sure other will be along with their experiences. Just wanted to send HUGS!
 
Our first round, it took her nearly a week to see any improvement, and probably about 3 weeks before we were sure she was heading in the right direction. Our second round, we spent the first week to two weeks similar to you - lots of vomiting, throwing up the tube (the day we were taught how to put it in ourselves was one of the best days ever!), and not much improvement. We found that slowing her feed down to almost nothing (we were at 33 ml/hr at her lowest) and spreading it out over 24 hours really mitigated the vomiting. You said her feeds are spaced out 5 times a day? What volume at a time? Maybe it's worth putting her on a 24 hr feed for a few days. It means she's always strapped to the pump, but if she's still laying around, it might not be a big deal. We slowly increased her volume and made sure she could tolerate it before we got up to her max dose (when she has it we run her feeds 12 hours overnight). Maybe it's something as simple as too much too fast?
 
In the hospital she was at 333 ml p/hr so a 250 ml box took about 45 minutes. The kangaroo pumps given for home care only go up to 300 ml p/hr. We have left her rate at the 300 since being home. I just started her feeding and dropped it to 250 ml p/h which is what we did the 1st day in the hospital. I am hoping it makes an improvement.

The nausea is bad for her. I assume it is from the flap connecting to her stomach being open. I am giving her gravol but it doesn't make much difference. She went into the hospital not necessarily in a flare. This is close to how she has been for a while, except she either maintains her weight or drops quickly & dramatically. Doc sent her in the hospital just for the NG insertion, but 2 days later caught c diff and that aggravated everything. Then with her period I think she just got the trifecta and now nothing is working right for the poor girl.
 
Would she be willing to try having it on 24 hrs? That would put her at 52 ml/hr. At the very least it would spread out the feed so that if she DID vomit everything in her stomach up, she wouldn't be losing a ton of nutrition, KWIM? Honestly, that's what I'd try for a few days if you can to see if her symptoms improve.
 
24 hrs wheeling the machine back & forth to the bathroom might be a bit much for her. Maybe I could try 150 and it would give her a small break. I don't want it in the night if she is vomiting. laying down might make her worse during a feeding. I know the hospital pediatric doctor was talking about a g tube but I really want to avoid that! It would mean surgery & I don't want to give up yet.
 
Yeah you may not need to go that extreme. I know it worked really well for my daughter but she wasn't running to the bathroom more than 3 or 4 times a day at that point (it was more the vomiting than anything), and we have the little backpack for the pump so it was portable. She's also only 4, so she's still pretty portable herself! Good luck, and maybe someone else will chime in with some other ideas.
 
300 ml/hr seems pretty quick??? When S came home from the hospital, he was at 200 ml/hr. They told him he could try to gradually speed it up but, if I remember correctly, we were told 300 ml/hr was the absolute max. S did gradually move it up but 275-280 ml/hr made him feel nauseated. His easily tolerated max was 250 (when he was in a rush), when he wasn't, he'd run it at 225 or less. Also, perhaps the increments at which we quickened the rate were smaller than how you/D have increased - we only increased by approx. 10 ml per hour per day.

And, keep in mind, he was 5'10", 125-160 lbs running it at this rate. 300 ml seems to be really high for D.
 
Just out of curiosity, were you at Sick Kids? And was it the dietitien who instructed you? While the nurses taught him to insert the tube, it was the dietitien who instructed us on quantity and speed.

(But, re my comment on incremental increases - while in the hospital, the rate was increased much quicker than what we did at home. He started at 20 ml/hr and, within 1 or 1.5 days, was at 200 ml - it was only at home that I increased the rate slowly.)
 
One other thing that you may already be doing - it doesn't sound like you're feeding overnight, but if you are, is the head of her bed elevated at all? We have always run her feeds overnight and we were told to prop her up to help prevent vomiting.
 
Few things- EEN takes a long time to make kids feel better.
DS never felt better on EEN but his blood numbers went way down.

1250 ML ( 5 cans/shakes) is really a small amount for her age. Ds was on 1750ml when he was only 7. He was very nausea while taking EEN.

IF the formula is 1.5 cal/oz then that could be the problem some kids with sensitive GI tracts can only handle 1.0 cal/oz.

Also the type of formula.
whole protein polymer based - kids boost essential
pedisure
semi elemental - easier on the gut - peptide, peptamen
elemental - neocate, elecare, vionexx, E028 splash - easiest on the gut.

rate is really a big factor- you can get a backpack for her to wear - little kids use a wagon or bucket with wheels. I know a lot of kids need the slower rate period.

weight loss would be from the lower calories and vomiting not necessarily from the EEN not working.

I would give the GI a call and check out a backpack- most kids need to wear it 24 hours a day at least until they are feeling better KWIM.

Good luck
 
Did you find out for certain that it was naso gastric she was doing and not NJ? I know the rate is affected by those differences, it tends to need to be a slower rate if it is NJ.

C's rate is much lower than that as well. I think they wanted him no higher than 200ml/hr but at least 150ml/hr. Last I checked he was at 180, he tried 200 but it made him very nauseated and he thought it was making him have more bms. I'm not sure about that as his normal is once a day/or every other day(small bowel disease only) and the 3 nights he did 200ml/hr he did increase to 2 bms a day but that could've been a fluke, kwim. He takes in 7 cans a day, mostly overnight and his is 1.5.
 
It took several weeks and his numbers didn't change but he felt better. Sorry she is still having such a difficult time and I don't have any advice on the NG side of it. Hugs
 
It is definitely NG. The end is in her stomach. The hospital rate was 333 the last 2 days we were there so I figured she could handle it. The pediatric dietitian (at NYGH) was out the day we were discharged so I didn't get a lot of my questions answered about slowing down rate or anything. I had wanted to ask about night feeding instead but didn't get a chance to discuss. Night feeding would be so much better for her if I could do it. I have a call into her & I should be hearing back from her in the morning. Her GI called when we took a nap so I missed her call! UGH!

I slowed down the speed to 250 at the 3:30 feeding & it seemed to go better. I am about to start another one and hopefully it goes just as well. She is on Peptamen Jr. 1.5 so her calories total will be 1875 which should be right for calories. She was doing 1/2 of the Jr 1.0 & the other 1/2 1.5 in the hospital up until the last day.

I had no idea there were backpacks for these things. She still hasn't been to school & has no energy whatsoever. When she gets there I will be looking into a backpack. It has to make life easier! I ust want her to feel like she can go to school. It sucks she doesn't even have energy for that. She is a kid that LOVES school so the fact that she isn't going says a lot.
 
Sorry to hear she's still sick.:hug:

For Grace it wasn't that the EEN not working but her body was working the right way.
Once it was working the right way it helped allot.
BTW, sometimes Grace's body still doesn't want to work the right way.
Very frustrating.:ymad:


Just for reference, Grace is on 1200 -1300 calls a day. She's five and hovers around 40-45 lbs.

I second the backpack. Grace has one specially made for formula feeds.
In Grace's uniforms for school I made button hole openings in the side seem and all you see is a couple inches of tube when she's wearing it.
 
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The backpack is a lifesaver for us. We don't use the pole at all. We have a command book attached to the side of the bed for either the bag or the backpack. And when she's on the couch the bag just sits beside her on the floor or the table. We can actually get out and do things when she's feeling well. Our pump came with the bag. We're using a Moog pump. Definitely see if you can get one.
 
1800 calories is not nearly enough.
DS was only 50 lbs when he was on close to that.
the 1.5 cal/oz sounds like it is just too much or she needs an elemental.
tube feeds have to go mud h slower than oral feeds the stomach just can't take it- hence the vomiting.

hope they answer you in the am.
 
I was thinking the same as my little penguin, C isn't on EEN he is just on EN at 90/10% and his calories intake by feed is 2625 cals, I believe. He is 17 and 5'7" and wasn't very physically active. The nutritionist and on call GI were even debating putting it higher but since the goal was weight gain and he could eat then they said we would start there. Since he gained so well the first month the GI didn't change it but said as he became more active we would.

I know it might be a bit different since C is a boy and she is a girl but it would seem they would want more than that. Did they give you a numerical formula as to why that was the number they chose?

I agree with other about the backpack, C hooks up in the evening and if he is still active during that time he uses a backpack we specially ordered but got by with a regular one while waiting for the other to come in.

Hope you get some answers and they can help her with the vomiting.
 
My son never felt better while on EEN but he did gain weight and eventually began having solid BMs. I just looked up what his intake was and he was on Modulen at 1.5 cal/ml. He got 1300 ml per day so he had 1950 cal per day. The highest feeding rate we did was 160 ml/hr. In total his feeding would take 8 hr. I definitely remember him feeling sick if we tried to speed up the feeds. In addition to his 1300 ml per day he would often choose to drink some Boost or Ensure during the day so his total calorie intake was definitely a bit more than the 1950 cal/day.

The instructions that were printed out for us say, "If you are nauseated at any time, just decrease the rate for a few hours or for that night.".

:hang:
 
I hope you can get some answers from the dietitien. I hadn't thought of it earlier :facepalm: but, maybe it is as simple as changing the formula. As she's using the tube, the taste really doesn't matter. FWIW, S was on Tolerex.
 
You guys are a amazing. I was feeling so down and was starting to freak out. I knew I could count on everyone to get positive that there are options. Her feeding at 6:30 went better and so far no vomiting.

Since she was so malnourished I think the dietician was trying to just get her to normal before increasing anything. If she has been vomiting I don't think we are at a point of increasing but I will ask.

I just want her to feel well enough for school. It is driving us all crazy not to have any normalcy. Really need to find it soon!
 
I don't know how big your daughter is but we were told 2000 calories + food for M and she's 5'2 and 88 pounds (just for EN though not EEN).
Sending hugs! Really really hope she starts feeling better soon.
 
She is 5' 1/2" and is 84 lbs. No food, just peptamen Jr. At 13 that puts Ber I think now at the 5th percentile. She is very out of breath. I had her go outside for a walk (her best friend just came over to cheer her up) and she was out of breath just walking down the driveway and back. Hope that changes soon.
 
You have been given great advice on the feeds but also consider that she may be dehydrated. She has been fighting the nausea for a while no? And malnourished? The vomiting and malnourishment could lead to dehydration which could also cause nausea.. a vicious cycle! I know it is hard but even though her nutrition is all liquid we were told O had to still drink a good amount of water.

Also, have her vitamin levels been checked? Low b12 could lead to nausea also.
 
Her vitamin levels were at the low range when she was discharged but better than when she went in. She has been eating 2 ice cube trays of ice a day (18 cubes) & 2 glasses of water with her pills. I haven't been monitoring her urine, just her poop so I'll get another 'hat' to measure it too. No solid poop, still all liquid... Hopeful that will change.
 
Yeah O did that also but only for a couple of weeks...could be that also but she was liquid before all this yes?
 
She had semi soft stool before all this. She is done with the flagyl for c diff and I know the c diff confused things too. Good to know the stool will probably stay liquid then. If that is normal than I won't worry about it. I guess I don't know what truly to expect. All I do know is losing means it's the wrong direction.
 
I just spoke with the dietitian. She is only at a maintaining weight dosage of peptamen until she can tolerate it better. I am supposed to be getting a home care dietitian to be coming by. The referral has been made.

Today I am going to get her a backpack to bring this around with her. If she knows she can do that it might make her feel like she could be mobile. Teens are hard to know if it is the mood that is keeping them with no energy or if they just don't have it. Maybe if I bring her to school for an hr. she might feel a bit happier.
 
Sorry to hear she is still struggling. No experience with the pump here - I just "fed" my son through a bolus at meal and snack times. I did get one strong arm! :smile: He also had mostly liquid stool the whole 9 weeks. I hope things pick up soon for her.
 
Sounds like the high rate is what she cannot tolerate, not the formula per se.

V was started on 60cc/hr, then to 90, then 120.
She's been on 250cc for a few years now but no way she could have done that rate the first year. Her motility was too delayed. If a small amount is introduced into the stomach at a time, it has time to digest rather than dumping 8oz in a 45min period. Your girl may have very slow gastric motility.

I'm a bit astounded that they are trying to bolus feed her at such a high rate.
Her GI, also the oncologist whom she'd just seen (this is back around dx) and who said she needed tube feeds as she was cachectic both said starting very slow rate is the way to go. GI said 3000cals at a slow rate.

If you try 90 or 100 cc overnight I suspect you'll get a better result. And if you do 24h at 100cc she'll get a constant very slow drip as opposed to a (comparatively) large amount at a time. Yes it sucks being attached to a pump for 24h. V had a backpack she used.

No need to drag the pole to the bathroom, just turn off the pump and disconnect the tube.
 
No one has even told me if I can do night feeding for her or not. If I did night feeding and her bowels are the most upset overnight & in the morning, would night feeding cause it to be worse? Still waiting for the home care dietitian.

Today was her first day of finally going to school. Its only for a couple of hours but its a start. I don't know how tomorrow will work, but even if she ends up staying home tomorrow it is a start! Her classmates were thrilled to see her!
 
I'm glad she was able to do a little school.

Grace can't do night feeds. Gastric mobility was at its worse at night.
However now it seems to improving so maybe I could if I had to.
Call and ask. It might be the way to go.:hug:
 
I have gotten a couple of back packs and am hoping to find ways of making her feel she can be mobile, even if it means me driving her to the park to hang out with her friends, and just sitting there. I will ask about night feeds, but for now I think it is best just to get her on this course and manage it better before I fool around with things. Went to the GP yesterday & she is down another pound. ugh... I am at least very glad our GP is completely up to date & even had our hospital discharge info already in his office.

I do feel like we are back at square one with this sometimes. Before diagnosis D had accidents in her pants all the time. Now she is having about 2 a day. (Doesn't want to wear depends or pull ups, I am trying to get her to) the liquid food comes right out the same way. I can understand why it is hard to control it long enough to make it.
 
Well the last 24 hrs we have had a rougher go. D vomited 3x in the last 24 hrs & is not keeping her food down, even at 200. The RPN that comes for home care said its not the speed there is something else going on. Called doc today and she never called back.

During her 9:30 feeding she vomited out her NG tube so we are now back again at the hospital... not expecting to go home and are probably getting admitted again... ugh! So frustrated!!!
 
Does this vomiting go away? Or is this nausea like this no matter how long you have it? She is even taking zofran and still is spitting up or vomiting. What happens if she can't tolerate the NG tube?
 
I wouldn’t have thought that vomiting was something that would be present at this point without an underlying cause aside from the tube.

Speed of the feed has been ruled out.
The placement of the tube shouldn’t be an issue since it is done in hospital and checked.
I assume she is clearing the feed from the stomach in a timely manner? Could there be slow emptying and that is causing a build up and vomiting?

If feeding is needed then the only two ways to go would be something like a gastrostomy tube or TPN.

Thinking of you mum. :ghug:

Dusty. xxx
 
Thanks for confirming my thought that vomiting shouldn't be happening now. The vomiting happens either about 30-60 mins after feed or during feed. I check for stomach contents and it is low to barely anything. D has refused a new ng tube. I've never seen her give up like this. It is breaking my heart. She is starting to think everyone is stupid. Having a teenager is starting to work against me, except she is standing up for herself. That is a positive.
 
Did they ever try a more broken down formula without milk proteins ?
I know more than a few kids whose systems can't handle the higher calorie one at all and others who can't have the whole protein or semi elemental - only amino acid based ones until their gut heals more .
 
Yes on terminal ileum. Its her worst spot.it is severe and the least healed area.

They haven't even suggested other formula. Considering they just gave me 8x24 cartons of peptamen jr (all covered by the govt) it would be a big waste not using it now.
 
Stricturing in the terminal ileum can cause persistent nausea and vomiting.

I notice you mentioned breathlessness and that her vitamin levels were low. Do you know if they have done Iron Stores and B12? Severe disease in the terminal ileum may well affect these levels and I would be very interested to know what her B12 was.
Looking at ruling out causes, B12 deficiency can cause breathlessness, nausea and vomiting.

So all up I don’t think it would hurt to look at the terminal ileum in the sense of disease activity present (including stricturing) and the affect this then has on malabsorption of things like B12, Iron and Folate. At least that way you can either rule in or out any role they may be playing in ongoing issues of nausea, vomiting and fatigue.

Dusty. xxx
 
The amount of ice she is eating, do you think this is due to thirst/dehydration or could craving be a part of it?
 
I think the ice is a bit of craving food, a bit of thirst. Nothing over the top. Just git discharged from ER. Back on full dosage of steroids and no more ng tube. GI is calling me in about an hr. Hospital docs already spoke with her.
 
Oh no and you worked so hard to taper off pred!
Sending hugs:ghug:
 
So speaking to the doc (flying to some big GI conference this weekend in Chicago) our next course is doubling on the cortifoam, wait for the Humira antibodies test and potentially add/switch to Imuran. Couldn't decide which drug we would drop when adding (Humira or Methotrexate), and would depend on the antibodies test.

Time to have the serious discussion & plan of surgery. We would reassess where she is on the 14th when we are to go in again and plan for next steps for surgery. Luckily this is a forum many could see or I would be typing 4 letter swear words over & over again, cause that is all the feeling I have about this now.

Just glad we got to go home. Disappointed the EEN didn't work for her. Now to start the slow additions back to food in hopes something stays in again.
 
So sad for you and your lass, mum. :(:(:(

Sending loads go hugs and luck that you hit on the right treatment and soon! :ghug:

Good luck!

Dusty. xxx
 
I'm so sorry that EEN wasn't able to help D. :(

I hope the antibodies test and her GI can give you some solid guidance as to what the next step should be. :ghug:
 
Sorry it didn't work, hope everything gets sorted out soon and you can deal with normal teenage attitude about normal teenage things
 
Very sorry to read about all you have both been through. I have everything crossed that you find some relief soon. You have worked so hard at being better and deserve a break.
 
I'm just coming back to this thread now and I'm so sorry to see your updates. I hope you guys can get her sorted out soon :(
 

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