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Feedings, enzymes and overnite gtube........

crickit715

New member
my daughter is 16 months old and we recently changed cf clinics. along with the change in docs came a bit of change in regimen and i am wondering if it is having an affect on her eating habits????.....she was taken off viokase powder and put on enzymes before and after the night feeding. this was to hopefully help with a severe stooling problem that has came back in the past couple months. they also stopped her formula and started her on pediasure.....but now she doesnt want to eat but maybe 1 time a day....she refuses her am feed, eats a small lunch and usually refuses any snacks thru the day and eats a small dinner. i end up bolus feeding her pediasure for breakfast and before bed just to get something in her belly.... im not sure what to do???? any suggestions?? anyone had the same issue when taken off viokase? (and also, her stools have been more frequent and worse since taken off viokase instead of better)
 

crickit715

New member
my daughter is 16 months old and we recently changed cf clinics. along with the change in docs came a bit of change in regimen and i am wondering if it is having an affect on her eating habits????.....she was taken off viokase powder and put on enzymes before and after the night feeding. this was to hopefully help with a severe stooling problem that has came back in the past couple months. they also stopped her formula and started her on pediasure.....but now she doesnt want to eat but maybe 1 time a day....she refuses her am feed, eats a small lunch and usually refuses any snacks thru the day and eats a small dinner. i end up bolus feeding her pediasure for breakfast and before bed just to get something in her belly.... im not sure what to do???? any suggestions?? anyone had the same issue when taken off viokase? (and also, her stools have been more frequent and worse since taken off viokase instead of better)
 

crickit715

New member
my daughter is 16 months old and we recently changed cf clinics. along with the change in docs came a bit of change in regimen and i am wondering if it is having an affect on her eating habits????.....she was taken off viokase powder and put on enzymes before and after the night feeding. this was to hopefully help with a severe stooling problem that has came back in the past couple months. they also stopped her formula and started her on pediasure.....but now she doesnt want to eat but maybe 1 time a day....she refuses her am feed, eats a small lunch and usually refuses any snacks thru the day and eats a small dinner. i end up bolus feeding her pediasure for breakfast and before bed just to get something in her belly.... im not sure what to do???? any suggestions?? anyone had the same issue when taken off viokase? (and also, her stools have been more frequent and worse since taken off viokase instead of better)
 

crickit715

New member
my daughter is 16 months old and we recently changed cf clinics. along with the change in docs came a bit of change in regimen and i am wondering if it is having an affect on her eating habits????.....she was taken off viokase powder and put on enzymes before and after the night feeding. this was to hopefully help with a severe stooling problem that has came back in the past couple months. they also stopped her formula and started her on pediasure.....but now she doesnt want to eat but maybe 1 time a day....she refuses her am feed, eats a small lunch and usually refuses any snacks thru the day and eats a small dinner. i end up bolus feeding her pediasure for breakfast and before bed just to get something in her belly.... im not sure what to do???? any suggestions?? anyone had the same issue when taken off viokase? (and also, her stools have been more frequent and worse since taken off viokase instead of better)
 

crickit715

New member
my daughter is 16 months old and we recently changed cf clinics. along with the change in docs came a bit of change in regimen and i am wondering if it is having an affect on her eating habits????.....she was taken off viokase powder and put on enzymes before and after the night feeding. this was to hopefully help with a severe stooling problem that has came back in the past couple months. they also stopped her formula and started her on pediasure.....but now she doesnt want to eat but maybe 1 time a day....she refuses her am feed, eats a small lunch and usually refuses any snacks thru the day and eats a small dinner. i end up bolus feeding her pediasure for breakfast and before bed just to get something in her belly.... im not sure what to do???? any suggestions?? anyone had the same issue when taken off viokase? (and also, her stools have been more frequent and worse since taken off viokase instead of better)
 
M

Mommafirst

Guest
We never used viokase, but it may be possible that the pediasure is filling her up so much that she is losing an appetite for other things. I'm not sure what advice to give -- maybe call your CF nutritionist and see her (his) thoughts.
 
M

Mommafirst

Guest
We never used viokase, but it may be possible that the pediasure is filling her up so much that she is losing an appetite for other things. I'm not sure what advice to give -- maybe call your CF nutritionist and see her (his) thoughts.
 
M

Mommafirst

Guest
We never used viokase, but it may be possible that the pediasure is filling her up so much that she is losing an appetite for other things. I'm not sure what advice to give -- maybe call your CF nutritionist and see her (his) thoughts.
 
M

Mommafirst

Guest
We never used viokase, but it may be possible that the pediasure is filling her up so much that she is losing an appetite for other things. I'm not sure what advice to give -- maybe call your CF nutritionist and see her (his) thoughts.
 
M

Mommafirst

Guest
We never used viokase, but it may be possible that the pediasure is filling her up so much that she is losing an appetite for other things. I'm not sure what advice to give -- maybe call your CF nutritionist and see her (his) thoughts.
 
V

valigirl21

Guest
Noah was never on viokase, but he still has the same problem. He is on a high-calorie suppliment (Boost Kids Essential 1.5)5X a day. My idiot GI told me as long as Noah drank the Boost he didn't necessarily need to eat anything. I don't fly with that so I try to encourage him to eat regular food. I find really tiny amounts (tsp by tsp if necessary) help with him. Maybe try that. I also make a variety of snacks available to him throughout the day.
 
V

valigirl21

Guest
Noah was never on viokase, but he still has the same problem. He is on a high-calorie suppliment (Boost Kids Essential 1.5)5X a day. My idiot GI told me as long as Noah drank the Boost he didn't necessarily need to eat anything. I don't fly with that so I try to encourage him to eat regular food. I find really tiny amounts (tsp by tsp if necessary) help with him. Maybe try that. I also make a variety of snacks available to him throughout the day.
 
V

valigirl21

Guest
Noah was never on viokase, but he still has the same problem. He is on a high-calorie suppliment (Boost Kids Essential 1.5)5X a day. My idiot GI told me as long as Noah drank the Boost he didn't necessarily need to eat anything. I don't fly with that so I try to encourage him to eat regular food. I find really tiny amounts (tsp by tsp if necessary) help with him. Maybe try that. I also make a variety of snacks available to him throughout the day.
 
V

valigirl21

Guest
Noah was never on viokase, but he still has the same problem. He is on a high-calorie suppliment (Boost Kids Essential 1.5)5X a day. My idiot GI told me as long as Noah drank the Boost he didn't necessarily need to eat anything. I don't fly with that so I try to encourage him to eat regular food. I find really tiny amounts (tsp by tsp if necessary) help with him. Maybe try that. I also make a variety of snacks available to him throughout the day.
 
V

valigirl21

Guest
Noah was never on viokase, but he still has the same problem. He is on a high-calorie suppliment (Boost Kids Essential 1.5)5X a day. My idiot GI told me as long as Noah drank the Boost he didn't necessarily need to eat anything. I don't fly with that so I try to encourage him to eat regular food. I find really tiny amounts (tsp by tsp if necessary) help with him. Maybe try that. I also make a variety of snacks available to him throughout the day.
<br />
 

izemmom

New member
Well. Isn't it hard when they won't eat and when the changes to "hopefully" make things better don't? First, a hug to you, because I know how frustrating this can be.

What enzyme is she taking before and after the night feeding? And, when you say night feeding, do you mean a continuous overnight feeding through the tube? Also, is the pediasure the overnight feed?

Why did they think taking her off of Viokase would solve the bad stooling? I'm curious about this, and it really seems to me that an overnight feed NEEDS to have something like Viokase of Kuzyme (Which I think is out of production now) that has a longer efficacy than Creon or Pancrecarb or whatever other enzyme she might be on. When Emily started on Viokase (at the same time she started on the g-tube) her stools immediately improved. It was almost like the better absorption all night long helped her body do it's job and absorb better during hte day, too.

So, that's my first question for the clinic/dietician.

Secondly, my Emily gets 3 cans of Pediasure Enteral overnight, most nights. It's a nine hour feed, so it ends about 2 hours before she wakes up, give or take. She just is not hungry in the morning. I wouldn't be either, if I ate in my sleep 2 hours before I woke up. So, I don't push breakfast. She has some yogurt and a bit of turkey or ham (with her favorite spinach) a few hours after she gets up. Then, she does a pretty good job the rest of the day.

BUT!!! When she first started g-tube feedings, she didn't eat much at all. She just couldn't, I think. Her weight increased steadily, and we just kept encouraging, and finally, after she turned 3 (on g-tube for about 15 months by then...) her appetite kicked in and now she is finally a good eater, except for breakfast.

I wonder if she isn't eating because she has an upset stomach due to the enzyme issue being out of wack. If she is gassy or has indigestion because of partial food digestion she might not feel like eating. She may have that bloated/refluxy feeling tht makes you just feel lousy. Is she on an antacid?

Also...Don't forget that most 16 month olds are picky eaters, and fill up fast. I know that we NEED our kids to eat, but sometimes you have to ask yourself what kids who aren't tube fed and who don't have CF do. Honestly, my non-cfer had to be bribed to eat at this age too. (still does, sometimes).

I would focus on trying to make sure that every single bit she puts in her mouth or that you put in her tube COUNT!!! And worry less about how willing she is to eat, at least for now.

That means figuring out why the stooling is still an issue. When was her last fecal fat test? When was the last routine enzyme change or or dosage change?

Also, switch things up a bit and try some high fat foods that you haven't tried before. This is the age when Emily LOVED avacado and boiled eggs, both of which I tried with her out of desperation!

I'd definately make an appt. with the dietician and/or GI person to see what you can figure out first thing.

Sorry for the novel.
 

izemmom

New member
Well. Isn't it hard when they won't eat and when the changes to "hopefully" make things better don't? First, a hug to you, because I know how frustrating this can be.

What enzyme is she taking before and after the night feeding? And, when you say night feeding, do you mean a continuous overnight feeding through the tube? Also, is the pediasure the overnight feed?

Why did they think taking her off of Viokase would solve the bad stooling? I'm curious about this, and it really seems to me that an overnight feed NEEDS to have something like Viokase of Kuzyme (Which I think is out of production now) that has a longer efficacy than Creon or Pancrecarb or whatever other enzyme she might be on. When Emily started on Viokase (at the same time she started on the g-tube) her stools immediately improved. It was almost like the better absorption all night long helped her body do it's job and absorb better during hte day, too.

So, that's my first question for the clinic/dietician.

Secondly, my Emily gets 3 cans of Pediasure Enteral overnight, most nights. It's a nine hour feed, so it ends about 2 hours before she wakes up, give or take. She just is not hungry in the morning. I wouldn't be either, if I ate in my sleep 2 hours before I woke up. So, I don't push breakfast. She has some yogurt and a bit of turkey or ham (with her favorite spinach) a few hours after she gets up. Then, she does a pretty good job the rest of the day.

BUT!!! When she first started g-tube feedings, she didn't eat much at all. She just couldn't, I think. Her weight increased steadily, and we just kept encouraging, and finally, after she turned 3 (on g-tube for about 15 months by then...) her appetite kicked in and now she is finally a good eater, except for breakfast.

I wonder if she isn't eating because she has an upset stomach due to the enzyme issue being out of wack. If she is gassy or has indigestion because of partial food digestion she might not feel like eating. She may have that bloated/refluxy feeling tht makes you just feel lousy. Is she on an antacid?

Also...Don't forget that most 16 month olds are picky eaters, and fill up fast. I know that we NEED our kids to eat, but sometimes you have to ask yourself what kids who aren't tube fed and who don't have CF do. Honestly, my non-cfer had to be bribed to eat at this age too. (still does, sometimes).

I would focus on trying to make sure that every single bit she puts in her mouth or that you put in her tube COUNT!!! And worry less about how willing she is to eat, at least for now.

That means figuring out why the stooling is still an issue. When was her last fecal fat test? When was the last routine enzyme change or or dosage change?

Also, switch things up a bit and try some high fat foods that you haven't tried before. This is the age when Emily LOVED avacado and boiled eggs, both of which I tried with her out of desperation!

I'd definately make an appt. with the dietician and/or GI person to see what you can figure out first thing.

Sorry for the novel.
 

izemmom

New member
Well. Isn't it hard when they won't eat and when the changes to "hopefully" make things better don't? First, a hug to you, because I know how frustrating this can be.

What enzyme is she taking before and after the night feeding? And, when you say night feeding, do you mean a continuous overnight feeding through the tube? Also, is the pediasure the overnight feed?

Why did they think taking her off of Viokase would solve the bad stooling? I'm curious about this, and it really seems to me that an overnight feed NEEDS to have something like Viokase of Kuzyme (Which I think is out of production now) that has a longer efficacy than Creon or Pancrecarb or whatever other enzyme she might be on. When Emily started on Viokase (at the same time she started on the g-tube) her stools immediately improved. It was almost like the better absorption all night long helped her body do it's job and absorb better during hte day, too.

So, that's my first question for the clinic/dietician.

Secondly, my Emily gets 3 cans of Pediasure Enteral overnight, most nights. It's a nine hour feed, so it ends about 2 hours before she wakes up, give or take. She just is not hungry in the morning. I wouldn't be either, if I ate in my sleep 2 hours before I woke up. So, I don't push breakfast. She has some yogurt and a bit of turkey or ham (with her favorite spinach) a few hours after she gets up. Then, she does a pretty good job the rest of the day.

BUT!!! When she first started g-tube feedings, she didn't eat much at all. She just couldn't, I think. Her weight increased steadily, and we just kept encouraging, and finally, after she turned 3 (on g-tube for about 15 months by then...) her appetite kicked in and now she is finally a good eater, except for breakfast.

I wonder if she isn't eating because she has an upset stomach due to the enzyme issue being out of wack. If she is gassy or has indigestion because of partial food digestion she might not feel like eating. She may have that bloated/refluxy feeling tht makes you just feel lousy. Is she on an antacid?

Also...Don't forget that most 16 month olds are picky eaters, and fill up fast. I know that we NEED our kids to eat, but sometimes you have to ask yourself what kids who aren't tube fed and who don't have CF do. Honestly, my non-cfer had to be bribed to eat at this age too. (still does, sometimes).

I would focus on trying to make sure that every single bit she puts in her mouth or that you put in her tube COUNT!!! And worry less about how willing she is to eat, at least for now.

That means figuring out why the stooling is still an issue. When was her last fecal fat test? When was the last routine enzyme change or or dosage change?

Also, switch things up a bit and try some high fat foods that you haven't tried before. This is the age when Emily LOVED avacado and boiled eggs, both of which I tried with her out of desperation!

I'd definately make an appt. with the dietician and/or GI person to see what you can figure out first thing.

Sorry for the novel.
 

izemmom

New member
Well. Isn't it hard when they won't eat and when the changes to "hopefully" make things better don't? First, a hug to you, because I know how frustrating this can be.

What enzyme is she taking before and after the night feeding? And, when you say night feeding, do you mean a continuous overnight feeding through the tube? Also, is the pediasure the overnight feed?

Why did they think taking her off of Viokase would solve the bad stooling? I'm curious about this, and it really seems to me that an overnight feed NEEDS to have something like Viokase of Kuzyme (Which I think is out of production now) that has a longer efficacy than Creon or Pancrecarb or whatever other enzyme she might be on. When Emily started on Viokase (at the same time she started on the g-tube) her stools immediately improved. It was almost like the better absorption all night long helped her body do it's job and absorb better during hte day, too.

So, that's my first question for the clinic/dietician.

Secondly, my Emily gets 3 cans of Pediasure Enteral overnight, most nights. It's a nine hour feed, so it ends about 2 hours before she wakes up, give or take. She just is not hungry in the morning. I wouldn't be either, if I ate in my sleep 2 hours before I woke up. So, I don't push breakfast. She has some yogurt and a bit of turkey or ham (with her favorite spinach) a few hours after she gets up. Then, she does a pretty good job the rest of the day.

BUT!!! When she first started g-tube feedings, she didn't eat much at all. She just couldn't, I think. Her weight increased steadily, and we just kept encouraging, and finally, after she turned 3 (on g-tube for about 15 months by then...) her appetite kicked in and now she is finally a good eater, except for breakfast.

I wonder if she isn't eating because she has an upset stomach due to the enzyme issue being out of wack. If she is gassy or has indigestion because of partial food digestion she might not feel like eating. She may have that bloated/refluxy feeling tht makes you just feel lousy. Is she on an antacid?

Also...Don't forget that most 16 month olds are picky eaters, and fill up fast. I know that we NEED our kids to eat, but sometimes you have to ask yourself what kids who aren't tube fed and who don't have CF do. Honestly, my non-cfer had to be bribed to eat at this age too. (still does, sometimes).

I would focus on trying to make sure that every single bit she puts in her mouth or that you put in her tube COUNT!!! And worry less about how willing she is to eat, at least for now.

That means figuring out why the stooling is still an issue. When was her last fecal fat test? When was the last routine enzyme change or or dosage change?

Also, switch things up a bit and try some high fat foods that you haven't tried before. This is the age when Emily LOVED avacado and boiled eggs, both of which I tried with her out of desperation!

I'd definately make an appt. with the dietician and/or GI person to see what you can figure out first thing.

Sorry for the novel.
 

izemmom

New member
Well. Isn't it hard when they won't eat and when the changes to "hopefully" make things better don't? First, a hug to you, because I know how frustrating this can be.
<br />
<br />What enzyme is she taking before and after the night feeding? And, when you say night feeding, do you mean a continuous overnight feeding through the tube? Also, is the pediasure the overnight feed?
<br />
<br />Why did they think taking her off of Viokase would solve the bad stooling? I'm curious about this, and it really seems to me that an overnight feed NEEDS to have something like Viokase of Kuzyme (Which I think is out of production now) that has a longer efficacy than Creon or Pancrecarb or whatever other enzyme she might be on. When Emily started on Viokase (at the same time she started on the g-tube) her stools immediately improved. It was almost like the better absorption all night long helped her body do it's job and absorb better during hte day, too.
<br />
<br />So, that's my first question for the clinic/dietician.
<br />
<br />Secondly, my Emily gets 3 cans of Pediasure Enteral overnight, most nights. It's a nine hour feed, so it ends about 2 hours before she wakes up, give or take. She just is not hungry in the morning. I wouldn't be either, if I ate in my sleep 2 hours before I woke up. So, I don't push breakfast. She has some yogurt and a bit of turkey or ham (with her favorite spinach) a few hours after she gets up. Then, she does a pretty good job the rest of the day.
<br />
<br />BUT!!! When she first started g-tube feedings, she didn't eat much at all. She just couldn't, I think. Her weight increased steadily, and we just kept encouraging, and finally, after she turned 3 (on g-tube for about 15 months by then...) her appetite kicked in and now she is finally a good eater, except for breakfast.
<br />
<br />I wonder if she isn't eating because she has an upset stomach due to the enzyme issue being out of wack. If she is gassy or has indigestion because of partial food digestion she might not feel like eating. She may have that bloated/refluxy feeling tht makes you just feel lousy. Is she on an antacid?
<br />
<br />Also...Don't forget that most 16 month olds are picky eaters, and fill up fast. I know that we NEED our kids to eat, but sometimes you have to ask yourself what kids who aren't tube fed and who don't have CF do. Honestly, my non-cfer had to be bribed to eat at this age too. (still does, sometimes).
<br />
<br />I would focus on trying to make sure that every single bit she puts in her mouth or that you put in her tube COUNT!!! And worry less about how willing she is to eat, at least for now.
<br />
<br />That means figuring out why the stooling is still an issue. When was her last fecal fat test? When was the last routine enzyme change or or dosage change?
<br />
<br />Also, switch things up a bit and try some high fat foods that you haven't tried before. This is the age when Emily LOVED avacado and boiled eggs, both of which I tried with her out of desperation!
<br />
<br />I'd definately make an appt. with the dietician and/or GI person to see what you can figure out first thing.
<br />
<br />Sorry for the novel.
<br />
 
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