What to do about overnight feeds and enzymes....

[mariahsmommy]

My daughter is about to get a pump to do overnight feeds as opposed to daytime boluses. I am concerned though about what enzymes we are going to give her so that we don't have to wake her up. I know that most people right now use Viokase powder or Pancrecarb, but it is being discontinued.
A few questions:

1. How do you do enzymes with overnight feeds? (Do you take them before and after or what?)

2. Do you use a predigested formula or not?

3. Can you set the pump to do 270mL per hour?

 

[mariahsmommy]

My daughter is about to get a pump to do overnight feeds as opposed to daytime boluses. I am concerned though about what enzymes we are going to give her so that we don't have to wake her up. I know that most people right now use Viokase powder or Pancrecarb, but it is being discontinued.
A few questions:

1. How do you do enzymes with overnight feeds? (Do you take them before and after or what?)

2. Do you use a predigested formula or not?

3. Can you set the pump to do 270mL per hour?

 

[mariahsmommy]

My daughter is about to get a pump to do overnight feeds as opposed to daytime boluses. I am concerned though about what enzymes we are going to give her so that we don't have to wake her up. I know that most people right now use Viokase powder or Pancrecarb, but it is being discontinued.
<br />A few questions:
<br />
<br />1. How do you do enzymes with overnight feeds? (Do you take them before and after or what?)
<br />
<br />2. Do you use a predigested formula or not?
<br />
<br />3. Can you set the pump to do 270mL per hour?

 

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mariahsmommy</b></i>

My daughter is about to get a pump to do overnight feeds as opposed to daytime boluses. I am concerned though about what enzymes we are going to give her so that we don't have to wake her up. I know that most people right now use Viokase powder or Pancrecarb, but it is being discontinued.

A few questions:



1. How do you do enzymes with overnight feeds? (Do you take them before and after or what?)



2. Do you use a predigested formula or not?



3. Can you set the pump to do 270mL per hour?</end quote></div>


1. We use pancreacarb, I'm still holding out hope that they will be back on the market before I finish the supply we have. I mix them with applesauce and use the big 60ml syringe to push it through the tube. If that doesn't come to pass, I will have Alyssa take them by mouth before she goes to sleep and when she wakes up.

2. We do not use predigested formula, but that certainly might be an option for you if the enzymes don't come back on the market.

3. Yes, you can set the pump to run at any speed. You may find that she won't be able to handle it as fast when she is sleeping because digestion is slower when we are sleeping. We run Alyssa's at 50ml/hr for 8 hours. She could handle faster, but we don't have a need, we only need to get in 2 boxes per night.

 

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mariahsmommy</b></i>

My daughter is about to get a pump to do overnight feeds as opposed to daytime boluses. I am concerned though about what enzymes we are going to give her so that we don't have to wake her up. I know that most people right now use Viokase powder or Pancrecarb, but it is being discontinued.

A few questions:



1. How do you do enzymes with overnight feeds? (Do you take them before and after or what?)



2. Do you use a predigested formula or not?



3. Can you set the pump to do 270mL per hour?</end quote>


1. We use pancreacarb, I'm still holding out hope that they will be back on the market before I finish the supply we have. I mix them with applesauce and use the big 60ml syringe to push it through the tube. If that doesn't come to pass, I will have Alyssa take them by mouth before she goes to sleep and when she wakes up.

2. We do not use predigested formula, but that certainly might be an option for you if the enzymes don't come back on the market.

3. Yes, you can set the pump to run at any speed. You may find that she won't be able to handle it as fast when she is sleeping because digestion is slower when we are sleeping. We run Alyssa's at 50ml/hr for 8 hours. She could handle faster, but we don't have a need, we only need to get in 2 boxes per night.

 

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mariahsmommy</b></i>
<br />
<br />My daughter is about to get a pump to do overnight feeds as opposed to daytime boluses. I am concerned though about what enzymes we are going to give her so that we don't have to wake her up. I know that most people right now use Viokase powder or Pancrecarb, but it is being discontinued.
<br />
<br />A few questions:
<br />
<br />
<br />
<br />1. How do you do enzymes with overnight feeds? (Do you take them before and after or what?)
<br />
<br />
<br />
<br />2. Do you use a predigested formula or not?
<br />
<br />
<br />
<br />3. Can you set the pump to do 270mL per hour?</end quote>
<br />
<br />
<br />1. We use pancreacarb, I'm still holding out hope that they will be back on the market before I finish the supply we have. I mix them with applesauce and use the big 60ml syringe to push it through the tube. If that doesn't come to pass, I will have Alyssa take them by mouth before she goes to sleep and when she wakes up.
<br />
<br />2. We do not use predigested formula, but that certainly might be an option for you if the enzymes don't come back on the market.
<br />
<br />3. Yes, you can set the pump to run at any speed. You may find that she won't be able to handle it as fast when she is sleeping because digestion is slower when we are sleeping. We run Alyssa's at 50ml/hr for 8 hours. She could handle faster, but we don't have a need, we only need to get in 2 boxes per night.

 

[hmw]

Emily is getting a gtube on the 28th and this issue has been worrying me all along!

So far, this is our plan, since Emily takes Creon, and in our clinic's experience, most of their patients on that one can't get it to go through the tube without clogging it. Emily will take a big dose of enzymes before she goes to bed, use a predigested formula that is made with mct fat (the easiest fat for those with cf to digest) and take more enzymes when she gets up. If she ever happens to wake up during the night we'll give her some but we won't wake her.

I have been following any threads about this issue pretty closely because obviously if this plan doesn't work out we'll need to figure out something else... It also really upsets me on principle that the fda is holding up the *only* two enzymes that can be used reliably for tube feedings. Not all people with cf can eat orally and denying them such a crucial medication is just wrong. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[hmw]

Emily is getting a gtube on the 28th and this issue has been worrying me all along!

So far, this is our plan, since Emily takes Creon, and in our clinic's experience, most of their patients on that one can't get it to go through the tube without clogging it. Emily will take a big dose of enzymes before she goes to bed, use a predigested formula that is made with mct fat (the easiest fat for those with cf to digest) and take more enzymes when she gets up. If she ever happens to wake up during the night we'll give her some but we won't wake her.

I have been following any threads about this issue pretty closely because obviously if this plan doesn't work out we'll need to figure out something else... It also really upsets me on principle that the fda is holding up the *only* two enzymes that can be used reliably for tube feedings. Not all people with cf can eat orally and denying them such a crucial medication is just wrong. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[hmw]

Emily is getting a gtube on the 28th and this issue has been worrying me all along!
<br />
<br />So far, this is our plan, since Emily takes Creon, and in our clinic's experience, most of their patients on that one can't get it to go through the tube without clogging it. Emily will take a big dose of enzymes before she goes to bed, use a predigested formula that is made with mct fat (the easiest fat for those with cf to digest) and take more enzymes when she gets up. If she ever happens to wake up during the night we'll give her some but we won't wake her.
<br />
<br />I have been following any threads about this issue pretty closely because obviously if this plan doesn't work out we'll need to figure out something else... It also really upsets me on principle that the fda is holding up the *only* two enzymes that can be used reliably for tube feedings. Not all people with cf can eat orally and denying them such a crucial medication is just wrong. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[babyluke]

We use creon and as Harriet said, we could never manage to get it to go through the tube. So we give it before he goes on the pump and then when he wakes up and so far so good. We do regular pediasure. Luke's rate is 115 now. I think we started ou at 60 and have gradually bumped it up. He gets three cans a night. Hope that helps.

 

[babyluke]

We use creon and as Harriet said, we could never manage to get it to go through the tube. So we give it before he goes on the pump and then when he wakes up and so far so good. We do regular pediasure. Luke's rate is 115 now. I think we started ou at 60 and have gradually bumped it up. He gets three cans a night. Hope that helps.

 

[babyluke]

We use creon and as Harriet said, we could never manage to get it to go through the tube. So we give it before he goes on the pump and then when he wakes up and so far so good. We do regular pediasure. Luke's rate is 115 now. I think we started ou at 60 and have gradually bumped it up. He gets three cans a night. Hope that helps.

 

[datca1994]

I have been giving my son Creon 6 enzymes through the tube for the past one month. Reason: couldn't wake him up to swallow enzymes at the end of his feed.

I mix three spoonfuls of applesauce with very little apple juice. I open three capsules of Creon 6 and pour it into mixture. I collect the mixture with a 60 ml syringe. Next, I use the extension set to push it down the tube. Immediately flush with a 10ml syringe of warm water. Repeat (he takes 6 enzymes).

The mic-key size MUST be 18 French or larger.

 

[datca1994]

I have been giving my son Creon 6 enzymes through the tube for the past one month. Reason: couldn't wake him up to swallow enzymes at the end of his feed.

I mix three spoonfuls of applesauce with very little apple juice. I open three capsules of Creon 6 and pour it into mixture. I collect the mixture with a 60 ml syringe. Next, I use the extension set to push it down the tube. Immediately flush with a 10ml syringe of warm water. Repeat (he takes 6 enzymes).

The mic-key size MUST be 18 French or larger.

 

[datca1994]

I have been giving my son Creon 6 enzymes through the tube for the past one month. Reason: couldn't wake him up to swallow enzymes at the end of his feed.
<br />
<br />I mix three spoonfuls of applesauce with very little apple juice. I open three capsules of Creon 6 and pour it into mixture. I collect the mixture with a 60 ml syringe. Next, I use the extension set to push it down the tube. Immediately flush with a 10ml syringe of warm water. Repeat (he takes 6 enzymes).
<br />
<br />The mic-key size MUST be 18 French or larger.
<br />

 

[mariahsmommy]

Datca1994: How old is your son? When the mickey is 18 french, does the length of the tube change compared to like a 14 french? This is so exciting!

 

[mariahsmommy]

Datca1994: How old is your son? When the mickey is 18 french, does the length of the tube change compared to like a 14 french? This is so exciting!

 

[mariahsmommy]

Datca1994: How old is your son? When the mickey is 18 french, does the length of the tube change compared to like a 14 french? This is so exciting!

 

[datca1994]

My son is 3. I do not know about tube lengths, we use whatever came in the box! I sent you a Private Message with some more detail so please take a look.

Regards,
April

 

[datca1994]

My son is 3. I do not know about tube lengths, we use whatever came in the box! I sent you a Private Message with some more detail so please take a look.

Regards,
April