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

C

crickit715

New member
thanx for the responces... to answer your questions, she was taken off viokase because apparently in some children it actually causes diarrhea and vomitting...but i called the dr yesterday and they told me to put her back on it because it was just making the stools worse...so hopefully, that issue is semi-under control, lol. she used to be such a good eater,and has been on gtube for 12 months, and has just taken a drastic change in the last 2 weeks...im hoping its an age-teething-non cf related issue!! she is on 5ml prev 2x a day. we found out she is allergic to eggs and peanuts so that has greatly reduced our "snack" and "high protein" options. i am calling tomorrow for a gi appt, and hope im not over reacting. its just hard when you fight for every ounce of weight gain only to see how easily its lost over something like this!! i think the most frustrating part is her refusel of her enzymes...its like pulling teeth to get her to take them, ive tried all different types of fruits to put them in and even tried laying a piece of french fry on top of the applesauce!!! lol, shes was too smart for that, she picked the french fry off and hit the spoon so the applesauce went flying!!!! aaarrrggghhh.
 
C

crickit715

New member
thanx for the responces... to answer your questions, she was taken off viokase because apparently in some children it actually causes diarrhea and vomitting...but i called the dr yesterday and they told me to put her back on it because it was just making the stools worse...so hopefully, that issue is semi-under control, lol. she used to be such a good eater,and has been on gtube for 12 months, and has just taken a drastic change in the last 2 weeks...im hoping its an age-teething-non cf related issue!! she is on 5ml prev 2x a day. we found out she is allergic to eggs and peanuts so that has greatly reduced our "snack" and "high protein" options. i am calling tomorrow for a gi appt, and hope im not over reacting. its just hard when you fight for every ounce of weight gain only to see how easily its lost over something like this!! i think the most frustrating part is her refusel of her enzymes...its like pulling teeth to get her to take them, ive tried all different types of fruits to put them in and even tried laying a piece of french fry on top of the applesauce!!! lol, shes was too smart for that, she picked the french fry off and hit the spoon so the applesauce went flying!!!! aaarrrggghhh.
 
C

crickit715

New member
thanx for the responces... to answer your questions, she was taken off viokase because apparently in some children it actually causes diarrhea and vomitting...but i called the dr yesterday and they told me to put her back on it because it was just making the stools worse...so hopefully, that issue is semi-under control, lol. she used to be such a good eater,and has been on gtube for 12 months, and has just taken a drastic change in the last 2 weeks...im hoping its an age-teething-non cf related issue!! she is on 5ml prev 2x a day. we found out she is allergic to eggs and peanuts so that has greatly reduced our "snack" and "high protein" options. i am calling tomorrow for a gi appt, and hope im not over reacting. its just hard when you fight for every ounce of weight gain only to see how easily its lost over something like this!! i think the most frustrating part is her refusel of her enzymes...its like pulling teeth to get her to take them, ive tried all different types of fruits to put them in and even tried laying a piece of french fry on top of the applesauce!!! lol, shes was too smart for that, she picked the french fry off and hit the spoon so the applesauce went flying!!!! aaarrrggghhh.
 
C

crickit715

New member
thanx for the responces... to answer your questions, she was taken off viokase because apparently in some children it actually causes diarrhea and vomitting...but i called the dr yesterday and they told me to put her back on it because it was just making the stools worse...so hopefully, that issue is semi-under control, lol. she used to be such a good eater,and has been on gtube for 12 months, and has just taken a drastic change in the last 2 weeks...im hoping its an age-teething-non cf related issue!! she is on 5ml prev 2x a day. we found out she is allergic to eggs and peanuts so that has greatly reduced our "snack" and "high protein" options. i am calling tomorrow for a gi appt, and hope im not over reacting. its just hard when you fight for every ounce of weight gain only to see how easily its lost over something like this!! i think the most frustrating part is her refusel of her enzymes...its like pulling teeth to get her to take them, ive tried all different types of fruits to put them in and even tried laying a piece of french fry on top of the applesauce!!! lol, shes was too smart for that, she picked the french fry off and hit the spoon so the applesauce went flying!!!! aaarrrggghhh.
 
C

crickit715

New member
thanx for the responces... to answer your questions, she was taken off viokase because apparently in some children it actually causes diarrhea and vomitting...but i called the dr yesterday and they told me to put her back on it because it was just making the stools worse...so hopefully, that issue is semi-under control, lol. she used to be such a good eater,and has been on gtube for 12 months, and has just taken a drastic change in the last 2 weeks...im hoping its an age-teething-non cf related issue!! she is on 5ml prev 2x a day. we found out she is allergic to eggs and peanuts so that has greatly reduced our "snack" and "high protein" options. i am calling tomorrow for a gi appt, and hope im not over reacting. its just hard when you fight for every ounce of weight gain only to see how easily its lost over something like this!! i think the most frustrating part is her refusel of her enzymes...its like pulling teeth to get her to take them, ive tried all different types of fruits to put them in and even tried laying a piece of french fry on top of the applesauce!!! lol, shes was too smart for that, she picked the french fry off and hit the spoon so the applesauce went flying!!!! aaarrrggghhh.
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J

JennyCoulon

New member
Our oldest wwho has the g button is 9 and he gets the majority of his daily calories thru his feeds at night. The dietician said that it is normal that he doesn't want to eat breakfast and that if he doesn't eat a lot at meals that is okay. Anything really that he eats during the day is extra brownie points. I noticed after he got the button he really started to eat like a bird which was explained as okay by our docs. Hope this gets better.
 
J

JennyCoulon

New member
Our oldest wwho has the g button is 9 and he gets the majority of his daily calories thru his feeds at night. The dietician said that it is normal that he doesn't want to eat breakfast and that if he doesn't eat a lot at meals that is okay. Anything really that he eats during the day is extra brownie points. I noticed after he got the button he really started to eat like a bird which was explained as okay by our docs. Hope this gets better.
 
J

JennyCoulon

New member
Our oldest wwho has the g button is 9 and he gets the majority of his daily calories thru his feeds at night. The dietician said that it is normal that he doesn't want to eat breakfast and that if he doesn't eat a lot at meals that is okay. Anything really that he eats during the day is extra brownie points. I noticed after he got the button he really started to eat like a bird which was explained as okay by our docs. Hope this gets better.
 
J

JennyCoulon

New member
Our oldest wwho has the g button is 9 and he gets the majority of his daily calories thru his feeds at night. The dietician said that it is normal that he doesn't want to eat breakfast and that if he doesn't eat a lot at meals that is okay. Anything really that he eats during the day is extra brownie points. I noticed after he got the button he really started to eat like a bird which was explained as okay by our docs. Hope this gets better.
 
J

JennyCoulon

New member
Our oldest wwho has the g button is 9 and he gets the majority of his daily calories thru his feeds at night. The dietician said that it is normal that he doesn't want to eat breakfast and that if he doesn't eat a lot at meals that is okay. Anything really that he eats during the day is extra brownie points. I noticed after he got the button he really started to eat like a bird which was explained as okay by our docs. Hope this gets better.
 
N

NanaOf8GirlsAndCounting

Guest
My granddaughter is 11mos and has a mic key. She also has blowouts and they are huge. All over her bed and hair in the morning no diaper could hold it. They recently put her on pediasure during the day and peptim Jr for her continous feeds at night. They also recently shortened the overnight feed time because of the blowouts. She does have a short gut so she couldn't handle that much through the nite. She is now for the first time in 11mo's getting firmer stools which is a blessing for my daughter. But with the pediasure she is just not as hungry for real food anymore. She is drinking 2-3 a day and they said that was great. She never ever had a bottle couldn't suck due to being hospitalize for her first 6mo's so we are excited to see her drinking from the soft tipped sippy cup......she loves the pediasure.
 
N

NanaOf8GirlsAndCounting

Guest
My granddaughter is 11mos and has a mic key. She also has blowouts and they are huge. All over her bed and hair in the morning no diaper could hold it. They recently put her on pediasure during the day and peptim Jr for her continous feeds at night. They also recently shortened the overnight feed time because of the blowouts. She does have a short gut so she couldn't handle that much through the nite. She is now for the first time in 11mo's getting firmer stools which is a blessing for my daughter. But with the pediasure she is just not as hungry for real food anymore. She is drinking 2-3 a day and they said that was great. She never ever had a bottle couldn't suck due to being hospitalize for her first 6mo's so we are excited to see her drinking from the soft tipped sippy cup......she loves the pediasure.
 
N

NanaOf8GirlsAndCounting

Guest
My granddaughter is 11mos and has a mic key. She also has blowouts and they are huge. All over her bed and hair in the morning no diaper could hold it. They recently put her on pediasure during the day and peptim Jr for her continous feeds at night. They also recently shortened the overnight feed time because of the blowouts. She does have a short gut so she couldn't handle that much through the nite. She is now for the first time in 11mo's getting firmer stools which is a blessing for my daughter. But with the pediasure she is just not as hungry for real food anymore. She is drinking 2-3 a day and they said that was great. She never ever had a bottle couldn't suck due to being hospitalize for her first 6mo's so we are excited to see her drinking from the soft tipped sippy cup......she loves the pediasure.
 
N

NanaOf8GirlsAndCounting

Guest
My granddaughter is 11mos and has a mic key. She also has blowouts and they are huge. All over her bed and hair in the morning no diaper could hold it. They recently put her on pediasure during the day and peptim Jr for her continous feeds at night. They also recently shortened the overnight feed time because of the blowouts. She does have a short gut so she couldn't handle that much through the nite. She is now for the first time in 11mo's getting firmer stools which is a blessing for my daughter. But with the pediasure she is just not as hungry for real food anymore. She is drinking 2-3 a day and they said that was great. She never ever had a bottle couldn't suck due to being hospitalize for her first 6mo's so we are excited to see her drinking from the soft tipped sippy cup......she loves the pediasure.
 
N

NanaOf8GirlsAndCounting

Guest
My granddaughter is 11mos and has a mic key. She also has blowouts and they are huge. All over her bed and hair in the morning no diaper could hold it. They recently put her on pediasure during the day and peptim Jr for her continous feeds at night. They also recently shortened the overnight feed time because of the blowouts. She does have a short gut so she couldn't handle that much through the nite. She is now for the first time in 11mo's getting firmer stools which is a blessing for my daughter. But with the pediasure she is just not as hungry for real food anymore. She is drinking 2-3 a day and they said that was great. She never ever had a bottle couldn't suck due to being hospitalize for her first 6mo's so we are excited to see her drinking from the soft tipped sippy cup......she loves the pediasure.
 
I

izemmom

New member
Ricki -

It sounds like you are getting somewhere with all of this. That's good. I hope the Viokase does the trick for the stools. Dealing with the food allergies must be so hard. uuugh.

I just wanted to say never worry about over-reacting with this stuff. I worry about it too, when I make an appointment on my own because something doesn't seem right. But, we have to remember that the cf team and the gi and whoever else, are there for one reason...to help kids be well. It's their job to see us and our kids, and best case scenario, they tell us all is good and not to worry (Except when they tell us that and something's still wrong). I just repeat my mantra "Better safe than sorry." (I still always over-explain to the nurses that I'm just trying to be proactive, yadda yadda yadda....but they usually get it.)

I hope the appetite picks up soon. It just makes life easier when they eat.
 
I

izemmom

New member
Ricki -

It sounds like you are getting somewhere with all of this. That's good. I hope the Viokase does the trick for the stools. Dealing with the food allergies must be so hard. uuugh.

I just wanted to say never worry about over-reacting with this stuff. I worry about it too, when I make an appointment on my own because something doesn't seem right. But, we have to remember that the cf team and the gi and whoever else, are there for one reason...to help kids be well. It's their job to see us and our kids, and best case scenario, they tell us all is good and not to worry (Except when they tell us that and something's still wrong). I just repeat my mantra "Better safe than sorry." (I still always over-explain to the nurses that I'm just trying to be proactive, yadda yadda yadda....but they usually get it.)

I hope the appetite picks up soon. It just makes life easier when they eat.
 
I

izemmom

New member
Ricki -

It sounds like you are getting somewhere with all of this. That's good. I hope the Viokase does the trick for the stools. Dealing with the food allergies must be so hard. uuugh.

I just wanted to say never worry about over-reacting with this stuff. I worry about it too, when I make an appointment on my own because something doesn't seem right. But, we have to remember that the cf team and the gi and whoever else, are there for one reason...to help kids be well. It's their job to see us and our kids, and best case scenario, they tell us all is good and not to worry (Except when they tell us that and something's still wrong). I just repeat my mantra "Better safe than sorry." (I still always over-explain to the nurses that I'm just trying to be proactive, yadda yadda yadda....but they usually get it.)

I hope the appetite picks up soon. It just makes life easier when they eat.
 
I

izemmom

New member
Ricki -

It sounds like you are getting somewhere with all of this. That's good. I hope the Viokase does the trick for the stools. Dealing with the food allergies must be so hard. uuugh.

I just wanted to say never worry about over-reacting with this stuff. I worry about it too, when I make an appointment on my own because something doesn't seem right. But, we have to remember that the cf team and the gi and whoever else, are there for one reason...to help kids be well. It's their job to see us and our kids, and best case scenario, they tell us all is good and not to worry (Except when they tell us that and something's still wrong). I just repeat my mantra "Better safe than sorry." (I still always over-explain to the nurses that I'm just trying to be proactive, yadda yadda yadda....but they usually get it.)

I hope the appetite picks up soon. It just makes life easier when they eat.
 
I

izemmom

New member
Ricki -
<br />
<br />It sounds like you are getting somewhere with all of this. That's good. I hope the Viokase does the trick for the stools. Dealing with the food allergies must be so hard. uuugh.
<br />
<br />I just wanted to say never worry about over-reacting with this stuff. I worry about it too, when I make an appointment on my own because something doesn't seem right. But, we have to remember that the cf team and the gi and whoever else, are there for one reason...to help kids be well. It's their job to see us and our kids, and best case scenario, they tell us all is good and not to worry (Except when they tell us that and something's still wrong). I just repeat my mantra "Better safe than sorry." (I still always over-explain to the nurses that I'm just trying to be proactive, yadda yadda yadda....but they usually get it.)
<br />
<br />I hope the appetite picks up soon. It just makes life easier when they eat.
 
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