feeding tubes and enzymes

[stringbean]

My daughter is using an NG tube for overnight feedings. So far, the results are very promising -- she's put on almost four pounds and her BMI shot all the way up to the 2nd percentile. (Yay! Only 23 more percentiles to go!) She's tolerating the supplement without any problem, so it's highly likely that her doctor is going to do a g-tube this summer.

How do you give enzymes with the tube feeding? K's machine goes off somewhere around 2:00 a.m. and then she takes an enzyme. I can't imagine that she'll need to wake up in the middle of the night for however long she uses a g-tube. Can enzymes be added to the supplement somehow or will she (and, thus me) be facing this sleep interruption for months/years to come?

UPDATE: I wrote several weeks ago I posted a comment (Confused, Concerned, and a little Peeved) about the frustration of getting a diagnosis and finding a pulmonologist who will follow my daughter. We are back on track now! Her gastro doctor called a couple of weeks ago and wants to make sure that she is working with a pulmonologist. He set it up so that we are again working with the pulmonologist we saw for the second opinion (and who had diagnosed atypical CF.) We saw the pulmonologist last week, he was <i>wonderful</i> with K -- and he wants to see her every six months. He still believes that her CF symptoms will be limited to her pancreas, but since no one can absolutely know how this will play out, he thinks it's important to follow her twice a year. I'm <i>hugely</i> relieved.

K's gastro doctor said that the pancreatic insufficiency is clear, but some of her other tests have shown results one wouldn't expect to see on a CF patient (he didn't specify which tests). So I guess K's unofficial diagnosis is atypical atypical CF. Or something like that... <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[stringbean]

My daughter is using an NG tube for overnight feedings. So far, the results are very promising -- she's put on almost four pounds and her BMI shot all the way up to the 2nd percentile. (Yay! Only 23 more percentiles to go!) She's tolerating the supplement without any problem, so it's highly likely that her doctor is going to do a g-tube this summer.

How do you give enzymes with the tube feeding? K's machine goes off somewhere around 2:00 a.m. and then she takes an enzyme. I can't imagine that she'll need to wake up in the middle of the night for however long she uses a g-tube. Can enzymes be added to the supplement somehow or will she (and, thus me) be facing this sleep interruption for months/years to come?

UPDATE: I wrote several weeks ago I posted a comment (Confused, Concerned, and a little Peeved) about the frustration of getting a diagnosis and finding a pulmonologist who will follow my daughter. We are back on track now! Her gastro doctor called a couple of weeks ago and wants to make sure that she is working with a pulmonologist. He set it up so that we are again working with the pulmonologist we saw for the second opinion (and who had diagnosed atypical CF.) We saw the pulmonologist last week, he was <i>wonderful</i> with K -- and he wants to see her every six months. He still believes that her CF symptoms will be limited to her pancreas, but since no one can absolutely know how this will play out, he thinks it's important to follow her twice a year. I'm <i>hugely</i> relieved.

K's gastro doctor said that the pancreatic insufficiency is clear, but some of her other tests have shown results one wouldn't expect to see on a CF patient (he didn't specify which tests). So I guess K's unofficial diagnosis is atypical atypical CF. Or something like that... <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[stringbean]

My daughter is using an NG tube for overnight feedings. So far, the results are very promising -- she's put on almost four pounds and her BMI shot all the way up to the 2nd percentile. (Yay! Only 23 more percentiles to go!) She's tolerating the supplement without any problem, so it's highly likely that her doctor is going to do a g-tube this summer.
<br />
<br />How do you give enzymes with the tube feeding? K's machine goes off somewhere around 2:00 a.m. and then she takes an enzyme. I can't imagine that she'll need to wake up in the middle of the night for however long she uses a g-tube. Can enzymes be added to the supplement somehow or will she (and, thus me) be facing this sleep interruption for months/years to come?
<br />
<br />UPDATE: I wrote several weeks ago I posted a comment (Confused, Concerned, and a little Peeved) about the frustration of getting a diagnosis and finding a pulmonologist who will follow my daughter. We are back on track now! Her gastro doctor called a couple of weeks ago and wants to make sure that she is working with a pulmonologist. He set it up so that we are again working with the pulmonologist we saw for the second opinion (and who had diagnosed atypical CF.) We saw the pulmonologist last week, he was <i>wonderful</i> with K -- and he wants to see her every six months. He still believes that her CF symptoms will be limited to her pancreas, but since no one can absolutely know how this will play out, he thinks it's important to follow her twice a year. I'm <i>hugely</i> relieved.
<br />
<br />K's gastro doctor said that the pancreatic insufficiency is clear, but some of her other tests have shown results one wouldn't expect to see on a CF patient (he didn't specify which tests). So I guess K's unofficial diagnosis is atypical atypical CF. Or something like that... <img src="i/expressions/face-icon-small-happy.gif" border="0">
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[Mommafirst]

My daughter has a g-tube. We do enzymes when we start the feed (I mix with applesauce and squirt through the tube because she's already asleep). That's all we need to do, because my daughter isn't quite pancreatic insufficient. Sorry if that isn't enough of an answer.

 

[Mommafirst]

My daughter has a g-tube. We do enzymes when we start the feed (I mix with applesauce and squirt through the tube because she's already asleep). That's all we need to do, because my daughter isn't quite pancreatic insufficient. Sorry if that isn't enough of an answer.

 

[Mommafirst]

My daughter has a g-tube. We do enzymes when we start the feed (I mix with applesauce and squirt through the tube because she's already asleep). That's all we need to do, because my daughter isn't quite pancreatic insufficient. Sorry if that isn't enough of an answer.

 

[jbrandonAW]

I have a gtube, I take them before my feed and then I take 1/2 a dose when I wake up (since I eat breakfast right after). IF I wake up in the middle of the night Ill take them, but don't set an alarm to do so.

 

[jbrandonAW]

I have a gtube, I take them before my feed and then I take 1/2 a dose when I wake up (since I eat breakfast right after). IF I wake up in the middle of the night Ill take them, but don't set an alarm to do so.

 

[jbrandonAW]

I have a gtube, I take them before my feed and then I take 1/2 a dose when I wake up (since I eat breakfast right after). IF I wake up in the middle of the night Ill take them, but don't set an alarm to do so.

 

[izemmom]

My daughter is fed through her g-tube about 8 -9 hours a night. We put Viokase powder (yes, the one that is being discontinued, so we'll have to start crushing Viokase tablets) at the start of the feeding. That's all. WE don't add enzymes through the night or at the end or wake her, or anything.

That was (one of) my biggest fears when we started talking about the tube. Would we have to wake up every night to get her enzymes? The viokase has been great.

I've asked WHY the viokase works like that and didn't have to be added every 45 minutes...or whatever. The reasoning I've been given by our dietician is that the Viokase works on the fats in the formula IN THE BAG, so it's pre-digested before it gets to Emily's stomach. Pretty wild, but that's what I've been told.

Let us know how we can help as you approach the g-tube decision. There are a lot of posts here about it. Many of us have been there.

 

[izemmom]

My daughter is fed through her g-tube about 8 -9 hours a night. We put Viokase powder (yes, the one that is being discontinued, so we'll have to start crushing Viokase tablets) at the start of the feeding. That's all. WE don't add enzymes through the night or at the end or wake her, or anything.

That was (one of) my biggest fears when we started talking about the tube. Would we have to wake up every night to get her enzymes? The viokase has been great.

I've asked WHY the viokase works like that and didn't have to be added every 45 minutes...or whatever. The reasoning I've been given by our dietician is that the Viokase works on the fats in the formula IN THE BAG, so it's pre-digested before it gets to Emily's stomach. Pretty wild, but that's what I've been told.

Let us know how we can help as you approach the g-tube decision. There are a lot of posts here about it. Many of us have been there.

 

[izemmom]

My daughter is fed through her g-tube about 8 -9 hours a night. We put Viokase powder (yes, the one that is being discontinued, so we'll have to start crushing Viokase tablets) at the start of the feeding. That's all. WE don't add enzymes through the night or at the end or wake her, or anything.
<br />
<br />That was (one of) my biggest fears when we started talking about the tube. Would we have to wake up every night to get her enzymes? The viokase has been great.
<br />
<br />I've asked WHY the viokase works like that and didn't have to be added every 45 minutes...or whatever. The reasoning I've been given by our dietician is that the Viokase works on the fats in the formula IN THE BAG, so it's pre-digested before it gets to Emily's stomach. Pretty wild, but that's what I've been told.
<br />
<br />Let us know how we can help as you approach the g-tube decision. There are a lot of posts here about it. Many of us have been there.

 

[hmw]

I'm so happy to see that the ng tube has been of help to K already! <img src="i/expressions/face-icon-small-happy.gif" border="0"> Almost 4 pounds- amazing. <img src="i/expressions/face-icon-small-happy.gif" border="0"> Hoping for much continued success as she continues and eventually gets the g-tube.

And I am glad she finally has a good pulmonologist to follow her and has the dx she needs. Insurance will often require it to cover cf-specific meds, etc, not to mention this will help ensure she gets the vigilant monitoring you want, regardless of how 'mild' pulmonary symptoms are now. When she's seen every 6mo will it be for full clinic visits at the cf center? I'm hoping so... the dx warrants it even w/o major pulm symptoms.

The enzyme question is one that has me worrying too, since Emily will be getting her g-tube soon too. Interesting about the Viokase pre-digesting the formula before it even goes into the stomach. (I imagine it would smell really, really awful if it ever leaked! <img src="i/expressions/face-icon-small-shocked.gif" border="0"> ) Tami~ do you also use one of the more broken-down formulas for her tube- which I assume would be easier to break down even further- or just one of the more typical high-cal kid supplements like many of the other parents here?

 

[hmw]

I'm so happy to see that the ng tube has been of help to K already! <img src="i/expressions/face-icon-small-happy.gif" border="0"> Almost 4 pounds- amazing. <img src="i/expressions/face-icon-small-happy.gif" border="0"> Hoping for much continued success as she continues and eventually gets the g-tube.

And I am glad she finally has a good pulmonologist to follow her and has the dx she needs. Insurance will often require it to cover cf-specific meds, etc, not to mention this will help ensure she gets the vigilant monitoring you want, regardless of how 'mild' pulmonary symptoms are now. When she's seen every 6mo will it be for full clinic visits at the cf center? I'm hoping so... the dx warrants it even w/o major pulm symptoms.

The enzyme question is one that has me worrying too, since Emily will be getting her g-tube soon too. Interesting about the Viokase pre-digesting the formula before it even goes into the stomach. (I imagine it would smell really, really awful if it ever leaked! <img src="i/expressions/face-icon-small-shocked.gif" border="0"> ) Tami~ do you also use one of the more broken-down formulas for her tube- which I assume would be easier to break down even further- or just one of the more typical high-cal kid supplements like many of the other parents here?

 

[hmw]

I'm so happy to see that the ng tube has been of help to K already! <img src="i/expressions/face-icon-small-happy.gif" border="0"> Almost 4 pounds- amazing. <img src="i/expressions/face-icon-small-happy.gif" border="0"> Hoping for much continued success as she continues and eventually gets the g-tube.
<br />
<br />And I am glad she finally has a good pulmonologist to follow her and has the dx she needs. Insurance will often require it to cover cf-specific meds, etc, not to mention this will help ensure she gets the vigilant monitoring you want, regardless of how 'mild' pulmonary symptoms are now. When she's seen every 6mo will it be for full clinic visits at the cf center? I'm hoping so... the dx warrants it even w/o major pulm symptoms.
<br />
<br />The enzyme question is one that has me worrying too, since Emily will be getting her g-tube soon too. Interesting about the Viokase pre-digesting the formula before it even goes into the stomach. (I imagine it would smell really, really awful if it ever leaked! <img src="i/expressions/face-icon-small-shocked.gif" border="0"> ) Tami~ do you also use one of the more broken-down formulas for her tube- which I assume would be easier to break down even further- or just one of the more typical high-cal kid supplements like many of the other parents here?

 

[westonsmom]

Tami we use the same enzyme for the G tube. Crap! I didn't realize it was discontinued. Oh vey! Harriett since we go to the same clinic they will probably have Emily on the same kind. Weston takes bright beginnings overnight which is a soy based calorie drink (like pedisure). I don't think it is broken down.

 

[westonsmom]

Tami we use the same enzyme for the G tube. Crap! I didn't realize it was discontinued. Oh vey! Harriett since we go to the same clinic they will probably have Emily on the same kind. Weston takes bright beginnings overnight which is a soy based calorie drink (like pedisure). I don't think it is broken down.

 

[westonsmom]

Tami we use the same enzyme for the G tube. Crap! I didn't realize it was discontinued. Oh vey! Harriett since we go to the same clinic they will probably have Emily on the same kind. Weston takes bright beginnings overnight which is a soy based calorie drink (like pedisure). I don't think it is broken down.

 

[NanaOf8GirlsAndCounting]

We were told that viokase didn't work as well and the doctor would rather have us mix her enzymes with applesauce and run it thur the G-tube. We just layer the beads and apple sauce in a lg syringe and it goes thur pretty easy. Everything goes thur her tube. LOL, adek, vitamin D, prevaid, etc.... makes it alot easier then forcing her to gag them down. She has a bad gag reflux and would throw it all up. We know that she is getting it all now. Love the G-tube!!

 

[NanaOf8GirlsAndCounting]

We were told that viokase didn't work as well and the doctor would rather have us mix her enzymes with applesauce and run it thur the G-tube. We just layer the beads and apple sauce in a lg syringe and it goes thur pretty easy. Everything goes thur her tube. LOL, adek, vitamin D, prevaid, etc.... makes it alot easier then forcing her to gag them down. She has a bad gag reflux and would throw it all up. We know that she is getting it all now. Love the G-tube!!