Anyone on continuous feeds?

  • Thread starter NanaOf8GirlsAndCounting
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NanaOf8GirlsAndCounting

Guest
Well I have posted this on the update on Graycie but wanted to start a new thread on this. Do any of you do continuous feeds? If you do what is the amount of enzymes that you take? The drs have Graycie only on 3 every 4-6 hrs. I don't think thats enough and may be why she is cramping and having diarria. She also has a short gut and we know from experience that when she was eating, everytime she ate, especially with higher fat content we gave her enzymes and their way of thinking makes no sense. Anyway everytime they up her feeds she gets gaggy and really gassey, so then they stop her feeds altogether and start over. They are not listening regarding her enzymes. Any help?
 
N

NanaOf8GirlsAndCounting

Guest
Well I have posted this on the update on Graycie but wanted to start a new thread on this. Do any of you do continuous feeds? If you do what is the amount of enzymes that you take? The drs have Graycie only on 3 every 4-6 hrs. I don't think thats enough and may be why she is cramping and having diarria. She also has a short gut and we know from experience that when she was eating, everytime she ate, especially with higher fat content we gave her enzymes and their way of thinking makes no sense. Anyway everytime they up her feeds she gets gaggy and really gassey, so then they stop her feeds altogether and start over. They are not listening regarding her enzymes. Any help?
 
N

NanaOf8GirlsAndCounting

Guest
Well I have posted this on the update on Graycie but wanted to start a new thread on this. Do any of you do continuous feeds? If you do what is the amount of enzymes that you take? The drs have Graycie only on 3 every 4-6 hrs. I don't think thats enough and may be why she is cramping and having diarria. She also has a short gut and we know from experience that when she was eating, everytime she ate, especially with higher fat content we gave her enzymes and their way of thinking makes no sense. Anyway everytime they up her feeds she gets gaggy and really gassey, so then they stop her feeds altogether and start over. They are not listening regarding her enzymes. Any help?
 
M

Mommy2Zeke

Guest
Zeke is on continuous feeds usually at 45 to 55 mls per hour of Neocate. He is on Creon 12 and we give him 2 capsules every 4 hours while he is awake. He's near the 50th percentile for weight, so it's worked well for him.

Here are some other things to consider that we have learned from UNMC Intestinal Rehab:

If she isn't on an anti-diarrheal, definitely consider it. Zeke is on Imodium 1mg every 6 hours. It definitely helps.

Also, adding benefiber to feedings, and/or cholestyramine can drastically improve the way short-gutters absorb food.

How fast are they advancing her on feedings?
 
M

Mommy2Zeke

Guest
Zeke is on continuous feeds usually at 45 to 55 mls per hour of Neocate. He is on Creon 12 and we give him 2 capsules every 4 hours while he is awake. He's near the 50th percentile for weight, so it's worked well for him.

Here are some other things to consider that we have learned from UNMC Intestinal Rehab:

If she isn't on an anti-diarrheal, definitely consider it. Zeke is on Imodium 1mg every 6 hours. It definitely helps.

Also, adding benefiber to feedings, and/or cholestyramine can drastically improve the way short-gutters absorb food.

How fast are they advancing her on feedings?
 
M

Mommy2Zeke

Guest
Zeke is on continuous feeds usually at 45 to 55 mls per hour of Neocate. He is on Creon 12 and we give him 2 capsules every 4 hours while he is awake. He's near the 50th percentile for weight, so it's worked well for him.
<br />
<br />Here are some other things to consider that we have learned from UNMC Intestinal Rehab:
<br />
<br />If she isn't on an anti-diarrheal, definitely consider it. Zeke is on Imodium 1mg every 6 hours. It definitely helps.
<br />
<br />Also, adding benefiber to feedings, and/or cholestyramine can drastically improve the way short-gutters absorb food.
<br />
<br />How fast are they advancing her on feedings?
 
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NanaOf8GirlsAndCounting

Guest
They have stopped her feeds again. They were starting her out on 5ml and advanced her to 30ml when the formula started going up the farrel bag, and she starts gagging. They have started and stopped at least 6 times now. They were giving her peptimen and she was never able to tolerate that, of course they wouldn't believe us until yesterday. Not sure whats going on so we are having her transferred today to Cincinnati Childrens Hospital. She did drink her boost yesterday but even with her enyzmes she is blowing out everywhere with alot of gas and pain. She did get a backpack for feedings when we can finally take her home. They are talking about adding TPN again. Hopefully Cincinnati will have answers.
 
N

NanaOf8GirlsAndCounting

Guest
They have stopped her feeds again. They were starting her out on 5ml and advanced her to 30ml when the formula started going up the farrel bag, and she starts gagging. They have started and stopped at least 6 times now. They were giving her peptimen and she was never able to tolerate that, of course they wouldn't believe us until yesterday. Not sure whats going on so we are having her transferred today to Cincinnati Childrens Hospital. She did drink her boost yesterday but even with her enyzmes she is blowing out everywhere with alot of gas and pain. She did get a backpack for feedings when we can finally take her home. They are talking about adding TPN again. Hopefully Cincinnati will have answers.
 
N

NanaOf8GirlsAndCounting

Guest
They have stopped her feeds again. They were starting her out on 5ml and advanced her to 30ml when the formula started going up the farrel bag, and she starts gagging. They have started and stopped at least 6 times now. They were giving her peptimen and she was never able to tolerate that, of course they wouldn't believe us until yesterday. Not sure whats going on so we are having her transferred today to Cincinnati Childrens Hospital. She did drink her boost yesterday but even with her enyzmes she is blowing out everywhere with alot of gas and pain. She did get a backpack for feedings when we can finally take her home. They are talking about adding TPN again. Hopefully Cincinnati will have answers.
 
C

Cherylwithone

Guest
I have no words of wisdom for you. I just wanted to let you know that I was thinking of your family and what your having to deal with. Nothing is ever easy when you can not get straight answers. I do hope you get them after the transfer. I do know that Jen knows alot about short gut and has better answers then most. She has dealt with alot since Zeke was born. Please just hang in there, believe it or not things will get better.
 
C

Cherylwithone

Guest
I have no words of wisdom for you. I just wanted to let you know that I was thinking of your family and what your having to deal with. Nothing is ever easy when you can not get straight answers. I do hope you get them after the transfer. I do know that Jen knows alot about short gut and has better answers then most. She has dealt with alot since Zeke was born. Please just hang in there, believe it or not things will get better.
 
C

Cherylwithone

Guest
I have no words of wisdom for you. I just wanted to let you know that I was thinking of your family and what your having to deal with. Nothing is ever easy when you can not get straight answers. I do hope you get them after the transfer. I do know that Jen knows alot about short gut and has better answers then most. She has dealt with alot since Zeke was born. Please just hang in there, believe it or not things will get better.
 
Z

zaj1139

New member
June 22, 2010 Jaden had his next CF Team meeting and its not good. His lungs seem to be doing well however he only gained 2 oz. If he does not gain a significant amount of weight in the next 2 weeks they are going to put a tube in his stomach for us to put the enzymes in. Has anyone else gone thru this? What are the chances of infection. What happens if he continues not to thrive? Very emotional and scary time for us, would this go along with continuous feed and does it just get easier as they get older?
 
Z

zaj1139

New member
June 22, 2010 Jaden had his next CF Team meeting and its not good. His lungs seem to be doing well however he only gained 2 oz. If he does not gain a significant amount of weight in the next 2 weeks they are going to put a tube in his stomach for us to put the enzymes in. Has anyone else gone thru this? What are the chances of infection. What happens if he continues not to thrive? Very emotional and scary time for us, would this go along with continuous feed and does it just get easier as they get older?
 
Z

zaj1139

New member
June 22, 2010 Jaden had his next CF Team meeting and its not good. His lungs seem to be doing well however he only gained 2 oz. If he does not gain a significant amount of weight in the next 2 weeks they are going to put a tube in his stomach for us to put the enzymes in. Has anyone else gone thru this? What are the chances of infection. What happens if he continues not to thrive? Very emotional and scary time for us, would this go along with continuous feed and does it just get easier as they get older?
<br />
 
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NanaOf8GirlsAndCounting

Guest
Sorry to hear that Jaden is having problems. Graycie has a mic key and was doing pretty well before she got c diff. Most of the ones I have read on here are on overnight feedings and that does make a huge difference in weight gain. Since Graycie is now so far off the charts weight wise at 18lbs last weighin,(she just turned 2 in May) they want to do continuous feeding where she is hooked to the feeding all day and nite with maybe a break of a few hrs if we can get her up to enough calories. They have a backpack for the day so she can still get up and play outside. We do put her enzymes in through the g tube but it may get more difficult since the FDA hasn't approved her enzymes yet. She is on pancrecarb. She was on Creon I believe and the beads are to big to go through the tube. As for getting easier as they get older, I guess I am not the person to be asking as Graycie has had a rough 2yrs of life. 6 months in hospital at birth and now in and since March. Its been over a month now this time. I am hopeful though from alot of the posts from others with older CFers.
 
N

NanaOf8GirlsAndCounting

Guest
Sorry to hear that Jaden is having problems. Graycie has a mic key and was doing pretty well before she got c diff. Most of the ones I have read on here are on overnight feedings and that does make a huge difference in weight gain. Since Graycie is now so far off the charts weight wise at 18lbs last weighin,(she just turned 2 in May) they want to do continuous feeding where she is hooked to the feeding all day and nite with maybe a break of a few hrs if we can get her up to enough calories. They have a backpack for the day so she can still get up and play outside. We do put her enzymes in through the g tube but it may get more difficult since the FDA hasn't approved her enzymes yet. She is on pancrecarb. She was on Creon I believe and the beads are to big to go through the tube. As for getting easier as they get older, I guess I am not the person to be asking as Graycie has had a rough 2yrs of life. 6 months in hospital at birth and now in and since March. Its been over a month now this time. I am hopeful though from alot of the posts from others with older CFers.
 
N

NanaOf8GirlsAndCounting

Guest
Sorry to hear that Jaden is having problems. Graycie has a mic key and was doing pretty well before she got c diff. Most of the ones I have read on here are on overnight feedings and that does make a huge difference in weight gain. Since Graycie is now so far off the charts weight wise at 18lbs last weighin,(she just turned 2 in May) they want to do continuous feeding where she is hooked to the feeding all day and nite with maybe a break of a few hrs if we can get her up to enough calories. They have a backpack for the day so she can still get up and play outside. We do put her enzymes in through the g tube but it may get more difficult since the FDA hasn't approved her enzymes yet. She is on pancrecarb. She was on Creon I believe and the beads are to big to go through the tube. As for getting easier as they get older, I guess I am not the person to be asking as Graycie has had a rough 2yrs of life. 6 months in hospital at birth and now in and since March. Its been over a month now this time. I am hopeful though from alot of the posts from others with older CFers.
 
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