Hi, DD (now 8, diagnosed 3 years ago) is in the middle of flare up, week 5 of EEN (via tube) but this last week she has been feeling sick and throwing most of it up. Refusing to take lots of feeds as a result. Dr says never heard of this before, at first thought just a sickness bug but a week later this is unlikely. Has anybody else's kid experienced nausea / vomiting part way through an EEN programme? Dr says that we need to look at something different now as EEN clearly not working (prob. Infliximab, few days of steroid IV at beginning noit successful). Was hoping nausea was caused by something else / it would pass, but wondering if part of the condition / not unusual with this treatment. Thanks in advance for any thoughts on this!
8yo nauseous 5 weeks into EEN - normal??
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Hi, I'm sorry to hear about her struggles.
Yes my girl has had this happen before.
Her disease is in her stomach and the next part.
When it's inflamed her stomach doesn't drain/work properly.
A few questions for you....
What maintenance medicine is she on?
Has she had any imagining done, like an MRE?
Does she have strictures (scar tissues) that you know of?
When was her last scopes?
Yes my girl has had this happen before.
Her disease is in her stomach and the next part.
When it's inflamed her stomach doesn't drain/work properly.
A few questions for you....
What maintenance medicine is she on?
Has she had any imagining done, like an MRE?
Does she have strictures (scar tissues) that you know of?
When was her last scopes?
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Same here DS has disease in lots of areas including the duodenum and stomach.
What type of fotmula is she using ??
That might be an issue as well.
DS uses peptamen jr
Some kids need amino acid based like neocate or Elecare .
Fwiw DS was placed on remicade at age 8 and things drastically improved after his third infusion.
He is currently on pen (80/20) with peptamen jr no issues unlike last time when he wasn't under control yet
Good luck
What type of fotmula is she using ??
That might be an issue as well.
DS uses peptamen jr
Some kids need amino acid based like neocate or Elecare .
Fwiw DS was placed on remicade at age 8 and things drastically improved after his third infusion.
He is currently on pen (80/20) with peptamen jr no issues unlike last time when he wasn't under control yet
Good luck
crohnsinct
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Our doc prescribed a PPI with EEN because of its affects on the stomach.
I am also curious to know what studies have been done to determine the nausea is related to increased IBD inflammation and not something else. Are blood markers up, fecal calprotectin, imaging?
I am also curious to know what studies have been done to determine the nausea is related to increased IBD inflammation and not something else. Are blood markers up, fecal calprotectin, imaging?
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My daughter had nausea during week 2 of EEN which we were able to resolve by switching formulas and slowing down the feed rate. We had to switch to a formula that didn't contain inulin, and we had to slow the flow rate to 60 ml/hr, which meant she had to run the tube 22 hours a day to get all her calories in.
It sounds like your daughter was fine for the first 4 weeks of EEN, though, so these issues seem less likely for her. Hope you can get some answers soon.
It sounds like your daughter was fine for the first 4 weeks of EEN, though, so these issues seem less likely for her. Hope you can get some answers soon.
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We also had issues with nausea and enteral nutrition. We had to switch the formula too - it took some trial and error to find a formula that worked. We tried Peptamen 1.5, Peptamen Jr 1.5, Peptamen Jr and finally Neocate, which is the one my daughter tolerated best and we stuck with.
We also had to slow down the rate considerably.
We also had to slow down the rate considerably.
Thanks all for feedback, good to know DD's reaction is not unique, despite the Dr's insistence that this is unheard of.
Potted history: DX with CD mid-2012 after investigation of bloody stools, stomach pain, frequent BMs etc. Disease localised at stomach exit, patchy throughout colon. 6 months on Sulfasalazine, moved to Azathioprine after 6 months.
2015 loose stools and pain, Sulfasalazine reintroduced, no improvement after 4 weeks. Oral Prednisolone (30mg) for 2 weeks then upped Pred to 75ml via IV for 5 days, sent home and weaned off over 6 weeks. Deteriorated after 2 of the 6 weeks so moved to Sulf + Pred + Aza + nighly enema + EEN started (orally). 2 weeks later DD refused to drink so put in the tube. Now 3 weeks later still (so more or less week 5 of EEN) and she continues to vomit frequently and latest bloods suggested no improvement (after an initial improvement after 2 weeks).
Specialist admitted she took her off the steroid IV a bit early so that was inconclusive.
Specialist says that due to DD not taking full feed amount (due to nausea / vomiting) EEN also inconclusive.
Options are put tube back in and persevere with EEN again, try Pred IV again (for longer) or move to Infliximab.
Nobody seems to be willing (or able) to tell us what to do so clearly we have a distressed and sick daughter with parents under-educated to figure out what is best.
Does this seem like a normal 'suck it and see' process?
Inclined to think that EEN not working (as would have seen marker improvements), and can safely say that nausea not related to "48 hour bug".
Maybe time to try something new i.e. Infliximab???
Potted history: DX with CD mid-2012 after investigation of bloody stools, stomach pain, frequent BMs etc. Disease localised at stomach exit, patchy throughout colon. 6 months on Sulfasalazine, moved to Azathioprine after 6 months.
2015 loose stools and pain, Sulfasalazine reintroduced, no improvement after 4 weeks. Oral Prednisolone (30mg) for 2 weeks then upped Pred to 75ml via IV for 5 days, sent home and weaned off over 6 weeks. Deteriorated after 2 of the 6 weeks so moved to Sulf + Pred + Aza + nighly enema + EEN started (orally). 2 weeks later DD refused to drink so put in the tube. Now 3 weeks later still (so more or less week 5 of EEN) and she continues to vomit frequently and latest bloods suggested no improvement (after an initial improvement after 2 weeks).
Specialist admitted she took her off the steroid IV a bit early so that was inconclusive.
Specialist says that due to DD not taking full feed amount (due to nausea / vomiting) EEN also inconclusive.
Options are put tube back in and persevere with EEN again, try Pred IV again (for longer) or move to Infliximab.
Nobody seems to be willing (or able) to tell us what to do so clearly we have a distressed and sick daughter with parents under-educated to figure out what is best.
Does this seem like a normal 'suck it and see' process?
Inclined to think that EEN not working (as would have seen marker improvements), and can safely say that nausea not related to "48 hour bug".
Maybe time to try something new i.e. Infliximab???
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Ya, don't you love when we feel like we're left on our own to make the big calls.
This is what we ended up doing for Grace. Remember I'm not a doc just a mom!
She also has stomach involvement.
We started on full EEN. Didn't work fully but was worth keeping because her stomach was going to have just as hard time ( probably worse) keeping food down. So she had to do 3 months of steroids plus EEN.
At this time she had a first horrible flare of arthritis (JIA) and we decided to add methotrexate and keep the EEN.
Then over the process of time we had to add Humira. Humira didn't work and we moved onto Remicade.
Again we kept EEN because it would be easier on her stomach then full food and give her the extra calories she needed.
Fast forward a year and she doing better. :thumright:
She still drinks 3 shakes ( boost kids essentials) a day, plus food. Her stomach still doesn't always want to behave but I put her on full EEN for a couple days and so far it's help calm it down.
This is what we ended up doing for Grace. Remember I'm not a doc just a mom!
She also has stomach involvement.
We started on full EEN. Didn't work fully but was worth keeping because her stomach was going to have just as hard time ( probably worse) keeping food down. So she had to do 3 months of steroids plus EEN.
At this time she had a first horrible flare of arthritis (JIA) and we decided to add methotrexate and keep the EEN.
Then over the process of time we had to add Humira. Humira didn't work and we moved onto Remicade.
Again we kept EEN because it would be easier on her stomach then full food and give her the extra calories she needed.
Fast forward a year and she doing better. :thumright:
She still drinks 3 shakes ( boost kids essentials) a day, plus food. Her stomach still doesn't always want to behave but I put her on full EEN for a couple days and so far it's help calm it down.
crohnsinct
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With 5 weeks of EEN, you should have seen some improvement in her markers.
I would be inclined to entertain a move to the biologics at this point.
FWIW - my older daughter has done very well on Remicade so we are big fans. No horrible side effects or increased illnesses etc.
If you want to do supplemental EN I would also consider a switch in formula.
I would be inclined to entertain a move to the biologics at this point.
FWIW - my older daughter has done very well on Remicade so we are big fans. No horrible side effects or increased illnesses etc.
If you want to do supplemental EN I would also consider a switch in formula.
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Fwiw DS loved remicade he started that at age 8.
He still continued with supplemental EEN
Good luck
He still continued with supplemental EEN
Good luck
Thanks again for all your thoughts, they have given us much confidence. After DD threw up the tube yesterday (!) we discussed with the hospital and agreed that it was time for something different. Psychological effects of continuing with EEN right now probably outweigh the benefits over the long haul, we suspect she will need to make friends with the tube again at some point in the future so best to limit the trauma now!
Infliximab first hit this Friday, fingers crossed!!!
Infliximab first hit this Friday, fingers crossed!!!
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DS loved remicade
crohnsinct
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Welcome to the IV league! Huge Remi fans here. Older daughter doing great on it and younger daughter may be moving to it soon.
Hope it works great for her!
Hope it works great for her!
2.5 weeks (and second IV) in now and 2 week markers all 'normal' which is amazing given she has been sick for best part of 3 months. Slowly working her way back up to full school strength but sent home yesterday as sick, and complaining of nausea today too. Is this a known / observed side effect of the treatment, or is it more likely caused by the heatwave or something else? She has been well otherwise, just so difficult to know if any illness now is related to the Crohn's / treatment or something completely different (and therefore nothing to worry about)! Hate to sound neurotic but interested in any thoughts?!
crohnsinct
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My daughter doesn't typically get nauseous with remicade. I know what you mean with so many symptoms overlapping normal kid things.
Dehydration will cause nausea so your heatwave theory could make sense. I would make sure she stays nicely hydrated and see if that doesn't help.
Dehydration will cause nausea so your heatwave theory could make sense. I would make sure she stays nicely hydrated and see if that doesn't help.
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Is she on anything besides the Infliximab? Methotrexate or a thioprine?
It might sound odd, but when my DS started feeling better with Remicade, it took him a little while to adjust his food intake and was nauseous a lot. He was so used to not eating much and then he started to feel better and was hungry all the time so he would overeat. Just a thought.
Otherwise, I would second crohnsinct about the water.
It might sound odd, but when my DS started feeling better with Remicade, it took him a little while to adjust his food intake and was nauseous a lot. He was so used to not eating much and then he started to feel better and was hungry all the time so he would overeat. Just a thought.
Otherwise, I would second crohnsinct about the water.
