I am a mom to an 11yo boy diagnosed with Crohns this past May. His only symptom was fevers for almost a month and occasional loose stool which was chalked up to being a virus. He has moderate to severe Crohns and we were offered to start Remicade or tubefeeding......we chose the feedings after hearing and researching info on remicade. It was scary to place such a young boy on a drug so strong. we felt we needed to try conservative methods first. We have had some difficulties with the feedings off and on.....we are now having issues with him vomiting when tube is removed and last evening he vomited after the tube was placed. They ordered him to take Zofran 4mg 30 minutes before insertion. Just wondering if anyone else has had this problem. also looking for some good snacks and meals for him that are nut free. Thanks!
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NG feedings and snacks for kids
- Thread starter iansmom
- Start date
Welcome please check out our parents section of the forum
Here
http://www.crohnsforum.com/forumdisplay.php?f=49
What formula is he on ???
Ds drinks his peptamen jr with prebio all orally
Een ( formula only -no food ) is great for inducing remission in kids but not so much for maintaining once food is reintroduced.
Ds was dx at age 7 and put on remicade by age 8.
So I understand your worries
But out of all the meds he has tried biologics have had the least number of side effects and the most success.
Ds also vomited a lot with active disease .
Never had a tube
He did 9 weeks of een at age 7 stayed on supplemental en ( peptamen jr 2-3 a day for a few years )
Just started partial en with crohns exclusive diet in April to help boost his humira/mtx
Not meant to be done as monotherapy .
As far as conservative you do need to realize the risk of surgery in kids is 75% within 5 years of dx and kids tends to have an extremely severe disease course that changes from inflammatory to stricturing/fistulizing as well as spreading - this is different from adults.
Most een fails if a open diet is introduced more than 10-20%.
The diet Ds does allows up to 50% food but very specific foods in certain amounts.
I can guarantee all parents on here want just diet alone to work
Unfortunately the minute you add random food to the formula starts to fail.
Not sure what snacks he is permitted
Ds is currently
No wheat, milk ,sugar, pork ,corn ,starch , emulsifiers, fillers, canned goods, juice , sweets, candy ,pop etc....
Just fruits veggies eggs fish and poultry .
The key is finding a med that works and keeps working
Most parents don't get a choice on what the med is
You just keep trying them until you find one that works
Ds tried and failed
Pentasa
6-mp
6-mp plus allopurinol
Mtx
Asacol plus the other meds
Had reactions to remicade after 8 months
Let us know what foods are permitted and I am sure there are plenty of snack ideas
Tagging
Clash
Tesscom
Crohnsinct
Maya142
Pilgrim
Jmrogers
Here
http://www.crohnsforum.com/forumdisplay.php?f=49
What formula is he on ???
Ds drinks his peptamen jr with prebio all orally
Een ( formula only -no food ) is great for inducing remission in kids but not so much for maintaining once food is reintroduced.
Ds was dx at age 7 and put on remicade by age 8.
So I understand your worries
But out of all the meds he has tried biologics have had the least number of side effects and the most success.
Ds also vomited a lot with active disease .
Never had a tube
He did 9 weeks of een at age 7 stayed on supplemental en ( peptamen jr 2-3 a day for a few years )
Just started partial en with crohns exclusive diet in April to help boost his humira/mtx
Not meant to be done as monotherapy .
As far as conservative you do need to realize the risk of surgery in kids is 75% within 5 years of dx and kids tends to have an extremely severe disease course that changes from inflammatory to stricturing/fistulizing as well as spreading - this is different from adults.
Most een fails if a open diet is introduced more than 10-20%.
The diet Ds does allows up to 50% food but very specific foods in certain amounts.
I can guarantee all parents on here want just diet alone to work
Unfortunately the minute you add random food to the formula starts to fail.
Not sure what snacks he is permitted
Ds is currently
No wheat, milk ,sugar, pork ,corn ,starch , emulsifiers, fillers, canned goods, juice , sweets, candy ,pop etc....
Just fruits veggies eggs fish and poultry .
The key is finding a med that works and keeps working
Most parents don't get a choice on what the med is
You just keep trying them until you find one that works
Ds tried and failed
Pentasa
6-mp
6-mp plus allopurinol
Mtx
Asacol plus the other meds
Had reactions to remicade after 8 months
Let us know what foods are permitted and I am sure there are plenty of snack ideas
Tagging
Clash
Tesscom
Crohnsinct
Maya142
Pilgrim
Jmrogers
http://www.crohnsforum.com/showthread.php?t=43002
Pediatric research papers on disease
Drugs and een
Pediatric research papers on disease
Drugs and een
http://www.crohnsforum.com/showthread.php?t=71686
Ds diet thread some snack ideas there
A favorite
Quinoa blueberry muffins
Instant snack - banana mash /blueberries/ safe nut alternative butter (sunflower pea etc) /honey
Ds diet thread some snack ideas there
A favorite
Quinoa blueberry muffins
Instant snack - banana mash /blueberries/ safe nut alternative butter (sunflower pea etc) /honey
Hi and welcome! My daughter has used an NG tube in the past but we didn't have much trouble with her throwing up the tube. Is he throwing up from the feed or from placing the tube?
When we first started tube feeds, my daughter used to get very nauseous with the feeds. Switching formulas helped. We started with Peptamen 1.5, and tried Peptamen 1.0 and then Peptamen 1.5 Jr. and Peptamen 1.0 Jr. She had nausea and diarrhea with ALL of the above formulas and so then we finally switched to Neocate which worked great! We also found that if the rate was too fast (for her above 80 mL/hr) then she would get nauseous and get heartburn. We also sometimes gave her Zofran if she was very nauseous. With the switch to Neocate and at the slow rate, she did well on NG tube feeds for 6 months or so before the nausea came back.
It was worse the second time and she would vomit when we tried to run her NG tube feeds. We slowed down the rate to 30mL/hour and gave her Zofran and Benadryl but none of it really helped. We then started testing for other conditions that could cause nausea and eventually she was diagnosed with Gastroparesis (delayed gastric emptying).
We then had to move to an NJ (naso-jejeunal) tube to bypass her stomach altogether. It worked great - no nausea and she gained a lot of weight. The downside was that she had to have it in all the time because it needs be place by interventional radiology. Now she has a GJ tube and that is working well too.
It sounds like your son's issues are mostly with the tube being inserted and removed - would he keep the tube in all the time? Is he drinking water while inserting it? Drinking water really helped my daughter not gag while it was inserted. She also inserted it herself and so could then go as fast or slow as she wanted.
I see you're in PA, are you going to Chop? We go there and my daughter loves it - it's her favorite hospital by far
Good luck!
When we first started tube feeds, my daughter used to get very nauseous with the feeds. Switching formulas helped. We started with Peptamen 1.5, and tried Peptamen 1.0 and then Peptamen 1.5 Jr. and Peptamen 1.0 Jr. She had nausea and diarrhea with ALL of the above formulas and so then we finally switched to Neocate which worked great! We also found that if the rate was too fast (for her above 80 mL/hr) then she would get nauseous and get heartburn. We also sometimes gave her Zofran if she was very nauseous. With the switch to Neocate and at the slow rate, she did well on NG tube feeds for 6 months or so before the nausea came back.
It was worse the second time and she would vomit when we tried to run her NG tube feeds. We slowed down the rate to 30mL/hour and gave her Zofran and Benadryl but none of it really helped. We then started testing for other conditions that could cause nausea and eventually she was diagnosed with Gastroparesis (delayed gastric emptying).
We then had to move to an NJ (naso-jejeunal) tube to bypass her stomach altogether. It worked great - no nausea and she gained a lot of weight. The downside was that she had to have it in all the time because it needs be place by interventional radiology. Now she has a GJ tube and that is working well too.
It sounds like your son's issues are mostly with the tube being inserted and removed - would he keep the tube in all the time? Is he drinking water while inserting it? Drinking water really helped my daughter not gag while it was inserted. She also inserted it herself and so could then go as fast or slow as she wanted.
I see you're in PA, are you going to Chop? We go there and my daughter loves it - it's her favorite hospital by far
Good luck!
Last edited:
crohnsinct
Well-known member
:ghug:Hello Warrington! My husband was born and raise there and all of my in laws are still there!
Is your son on a maintenance med? I ask because as MLP explained kids usually reach and stay in remission only as long as they are on EEN. Once food is introduced it is only a matter of time before inflammation returns. Most maintenance meds take a bit to build to therapeutic levels. For these reasons docs will start a patient on the maintenance med at the same time as EEN is started. EEN does the heavy lifting to get the patient to remission and when the exclusive period is over (6-8 weeks) food is very slowly added back in. The theory being that by the time you are on full diet the med is ready to carry the burden.
Now if you are at CHOP, I know they are doing a lot of work with trying to maintain kids with diet and EEN alone. Further they are also a bit more lenient with food and do not require the exclusive portion. There is a lot of interest her with what they are working on so please do share your experience.
We used EEN to induce remission for both my daughters and it worked great.
My older daughter was dx'd just as she turned 12. She went straight to Remicade. We didn't have a choice. Honestly, I have looked at all the risks of all the meds and Remicade to me is the least scary. My daughter has been on the drug for 3 1/2 years and she has been in remission for 3 of those years with no ill effects of the dug and no flares.
My younger daughter was more mild than her sister. WE chose to use EEN to induce remission while starting Methotrexate. The EEN worked great at getting her to remission but once we added food her inflammation returned, even wit the use of an immunomodulator.
You can always try to lower levels first and escalate as need be. My only caveat to you would be to be flexible and willing to know when it is time to change. The more stuck in our ways we are the more we let simmering inflammation do it's damage and that is a very real and scary risk. Further, the longer inflammation is left, the more you are missing out on growing opportunity and increasing the risk of surgery down the road.
There are a lot of useful articles and studies in the parents research section.
Sorry. No advice on the tube as my daughters drank their shakes.
Hard choices:ghug: I hope he can tackle the nausea and get to the business of healing quickly an that whatever you choose works for a very long time.
Is your son on a maintenance med? I ask because as MLP explained kids usually reach and stay in remission only as long as they are on EEN. Once food is introduced it is only a matter of time before inflammation returns. Most maintenance meds take a bit to build to therapeutic levels. For these reasons docs will start a patient on the maintenance med at the same time as EEN is started. EEN does the heavy lifting to get the patient to remission and when the exclusive period is over (6-8 weeks) food is very slowly added back in. The theory being that by the time you are on full diet the med is ready to carry the burden.
Now if you are at CHOP, I know they are doing a lot of work with trying to maintain kids with diet and EEN alone. Further they are also a bit more lenient with food and do not require the exclusive portion. There is a lot of interest her with what they are working on so please do share your experience.
We used EEN to induce remission for both my daughters and it worked great.
My older daughter was dx'd just as she turned 12. She went straight to Remicade. We didn't have a choice. Honestly, I have looked at all the risks of all the meds and Remicade to me is the least scary. My daughter has been on the drug for 3 1/2 years and she has been in remission for 3 of those years with no ill effects of the dug and no flares.
My younger daughter was more mild than her sister. WE chose to use EEN to induce remission while starting Methotrexate. The EEN worked great at getting her to remission but once we added food her inflammation returned, even wit the use of an immunomodulator.
You can always try to lower levels first and escalate as need be. My only caveat to you would be to be flexible and willing to know when it is time to change. The more stuck in our ways we are the more we let simmering inflammation do it's damage and that is a very real and scary risk. Further, the longer inflammation is left, the more you are missing out on growing opportunity and increasing the risk of surgery down the road.
There are a lot of useful articles and studies in the parents research section.
Sorry. No advice on the tube as my daughters drank their shakes.
Hard choices:ghug: I hope he can tackle the nausea and get to the business of healing quickly an that whatever you choose works for a very long time.
My son drank formula Pediasure Peptide and would throw up if he drank it too fast. We were not allowed many things when he was on EEN. Small amounts of hard candy like dumdums or jolly ranchers, occasional piece of gum.
He was also on another time as partial/supplemental EN where he was allowed to eat but mostly just stuck to the formula but that time was mostly for weight gain.
We've gone through many of the meds and always thought we'd didn't want remicade unless it was absolutely necessary. My son really needed it before we finally started and I can tell you many of the fantastic parents on here suggested he might need it before we finally came to that decision ourself and all the parents on here who shared their story about their success with remicade even if it was only for a short time gave me the courage to move forward with remicade.
Today my son at 16 is a completely different child from the one 20 months ago who appeared about 10 years of age and didn't think we would ever reach puberty. It has allowed him to have a nearly normal teenage life (he does have to go for infusions every 8 weeks). He was 5'1" at the start of remicade and is now 5'10" and 130 pounds, has to shave. He has had probably 5 years of growth and development in the past 20 months. He looks healthy, others have commented on it as well. I have a couple of really good friends who are RN's and both have commented on it even the past year change where his face has lost the puffiness of someone who has nutritional deficiencies and just looks good. He has more energy than ever (even accounting for being a teenager).
I know it's a super hard decision and I'm a big proponent of EEN but it's just to hard as a monotherapy and this disease is too sneaky even when you go along thinking everything is great it can throw you for a loop and question if you're making the right choices. I know (we all know) that you want to do the best thing for your child with the least amount of side effects to return them to as normal a life as possible.
He was also on another time as partial/supplemental EN where he was allowed to eat but mostly just stuck to the formula but that time was mostly for weight gain.
We've gone through many of the meds and always thought we'd didn't want remicade unless it was absolutely necessary. My son really needed it before we finally started and I can tell you many of the fantastic parents on here suggested he might need it before we finally came to that decision ourself and all the parents on here who shared their story about their success with remicade even if it was only for a short time gave me the courage to move forward with remicade.
Today my son at 16 is a completely different child from the one 20 months ago who appeared about 10 years of age and didn't think we would ever reach puberty. It has allowed him to have a nearly normal teenage life (he does have to go for infusions every 8 weeks). He was 5'1" at the start of remicade and is now 5'10" and 130 pounds, has to shave. He has had probably 5 years of growth and development in the past 20 months. He looks healthy, others have commented on it as well. I have a couple of really good friends who are RN's and both have commented on it even the past year change where his face has lost the puffiness of someone who has nutritional deficiencies and just looks good. He has more energy than ever (even accounting for being a teenager).
I know it's a super hard decision and I'm a big proponent of EEN but it's just to hard as a monotherapy and this disease is too sneaky even when you go along thinking everything is great it can throw you for a loop and question if you're making the right choices. I know (we all know) that you want to do the best thing for your child with the least amount of side effects to return them to as normal a life as possible.