Another g-tube question -- should we or shouldn't we?

S

stringbean

New member
My daughter (age 9) has had a lifetime struggle putting on weight and her doctor is considering a g-tube - but even he isn't sure this is the right move. He's said several times that if she had the classic CF symptoms he would have put in a g-tube over a year ago, but because there has been such a range of opinions on whether or not she even has CF or what progression we could expect, he's not convinced. We see him this Tuesday and we'll be discussing this again - and I have no idea what to do.

I'm curious about everyone's experience with having a g-tube - not the day to day operation of it, but what has it done for your child (or yourself)? What has the additional weight meant to your lives - does your child get sick less often or maybe shorter duration? Has his/her behavior changed in any way? My daughter didn't gain an ounce when she started on enzymes over a year ago but it has made a world of difference in her ability to concentrate, stay calm, and succeed in school. She was in special ed and really struggled cognitively. She's no longer in special ed, so properly digesting all the food she eats has done amazing things for her and I wonder if getting all those extra calories will do even more. And yet...

We started with an NG tube to:
. See if she can tolerate the supplement (she can)
. See if she would actually put on weight (she did, but only for a few weeks - the nighttime feedings killed her appetite and she STILL won't eat lunch or snacks)
. See what happens when the tube was removed (she's lost all but one pound of what she gained)

A one pound gain just wasn't worth all she had to go through. I'm afraid that a g-tube will end up the same, minimal gain that all goes away once the tube comes out. And it never answers the fundamental question on why she doesn't gain weight.

A little background for anyone who is interested... We adopted K from Russia. She was eight months old and weighed 10 pounds. By her second birthday, she weighed only 18 lbs. Despite adding butter and cream and feeding her every couple of hours, she only gained a half pound a month! Of course, now I see all the signs of PI, but we didn't know that until she was 7½ and got the official diagnosis. She's had two borderline sweat tests and has one mutation. Her mutation is so rare that when I posted a question Steve Keiles, he said that my daughter was the only one they've ever found it in. Which means that no one can make any predictions on what to expect. Her pulmonologist doesn't believe that she'll have any lung involvement. But then again, he won't rule it out. Her weight and BMI is hugely concerning to everyone - but her BMI is currently at the highest it's EVER been (13.2 and it's taken almost two years to raise it from 12.8)

Any advice, testimonials or concerns would be greatly appreciated!!!!!
 
S

stringbean

New member
My daughter (age 9) has had a lifetime struggle putting on weight and her doctor is considering a g-tube - but even he isn't sure this is the right move. He's said several times that if she had the classic CF symptoms he would have put in a g-tube over a year ago, but because there has been such a range of opinions on whether or not she even has CF or what progression we could expect, he's not convinced. We see him this Tuesday and we'll be discussing this again - and I have no idea what to do.

I'm curious about everyone's experience with having a g-tube - not the day to day operation of it, but what has it done for your child (or yourself)? What has the additional weight meant to your lives - does your child get sick less often or maybe shorter duration? Has his/her behavior changed in any way? My daughter didn't gain an ounce when she started on enzymes over a year ago but it has made a world of difference in her ability to concentrate, stay calm, and succeed in school. She was in special ed and really struggled cognitively. She's no longer in special ed, so properly digesting all the food she eats has done amazing things for her and I wonder if getting all those extra calories will do even more. And yet...

We started with an NG tube to:
. See if she can tolerate the supplement (she can)
. See if she would actually put on weight (she did, but only for a few weeks - the nighttime feedings killed her appetite and she STILL won't eat lunch or snacks)
. See what happens when the tube was removed (she's lost all but one pound of what she gained)

A one pound gain just wasn't worth all she had to go through. I'm afraid that a g-tube will end up the same, minimal gain that all goes away once the tube comes out. And it never answers the fundamental question on why she doesn't gain weight.

A little background for anyone who is interested... We adopted K from Russia. She was eight months old and weighed 10 pounds. By her second birthday, she weighed only 18 lbs. Despite adding butter and cream and feeding her every couple of hours, she only gained a half pound a month! Of course, now I see all the signs of PI, but we didn't know that until she was 7½ and got the official diagnosis. She's had two borderline sweat tests and has one mutation. Her mutation is so rare that when I posted a question Steve Keiles, he said that my daughter was the only one they've ever found it in. Which means that no one can make any predictions on what to expect. Her pulmonologist doesn't believe that she'll have any lung involvement. But then again, he won't rule it out. Her weight and BMI is hugely concerning to everyone - but her BMI is currently at the highest it's EVER been (13.2 and it's taken almost two years to raise it from 12.8)

Any advice, testimonials or concerns would be greatly appreciated!!!!!
 
S

stringbean

New member
My daughter (age 9) has had a lifetime struggle putting on weight and her doctor is considering a g-tube - but even he isn't sure this is the right move. He's said several times that if she had the classic CF symptoms he would have put in a g-tube over a year ago, but because there has been such a range of opinions on whether or not she even has CF or what progression we could expect, he's not convinced. We see him this Tuesday and we'll be discussing this again - and I have no idea what to do.
<br />
<br />I'm curious about everyone's experience with having a g-tube - not the day to day operation of it, but what has it done for your child (or yourself)? What has the additional weight meant to your lives - does your child get sick less often or maybe shorter duration? Has his/her behavior changed in any way? My daughter didn't gain an ounce when she started on enzymes over a year ago but it has made a world of difference in her ability to concentrate, stay calm, and succeed in school. She was in special ed and really struggled cognitively. She's no longer in special ed, so properly digesting all the food she eats has done amazing things for her and I wonder if getting all those extra calories will do even more. And yet...
<br />
<br />We started with an NG tube to:
<br />. See if she can tolerate the supplement (she can)
<br />. See if she would actually put on weight (she did, but only for a few weeks - the nighttime feedings killed her appetite and she STILL won't eat lunch or snacks)
<br />. See what happens when the tube was removed (she's lost all but one pound of what she gained)
<br />
<br />A one pound gain just wasn't worth all she had to go through. I'm afraid that a g-tube will end up the same, minimal gain that all goes away once the tube comes out. And it never answers the fundamental question on why she doesn't gain weight.
<br />
<br />A little background for anyone who is interested... We adopted K from Russia. She was eight months old and weighed 10 pounds. By her second birthday, she weighed only 18 lbs. Despite adding butter and cream and feeding her every couple of hours, she only gained a half pound a month! Of course, now I see all the signs of PI, but we didn't know that until she was 7½ and got the official diagnosis. She's had two borderline sweat tests and has one mutation. Her mutation is so rare that when I posted a question Steve Keiles, he said that my daughter was the only one they've ever found it in. Which means that no one can make any predictions on what to expect. Her pulmonologist doesn't believe that she'll have any lung involvement. But then again, he won't rule it out. Her weight and BMI is hugely concerning to everyone - but her BMI is currently at the highest it's EVER been (13.2 and it's taken almost two years to raise it from 12.8)
<br />
<br />Any advice, testimonials or concerns would be greatly appreciated!!!!!
<br />
 
M

Mommafirst

Guest
My daughter is pancreatic sufficient. She has one main CF symptom that has plagued her, her inability to gain weight on a normal calorie diet. She just can't intake enough calories to gain weight. Her lungs are good, though we've had our share of illnesses, whose to say if those are all CF stuff or not - or related to her low weight.

All I can say is that the tube was the hardest decision I ever made. First was the fact that it was so "disfiguring" (to me anyway) and because she does pretty well anyway, so why do this. But when the docs said it was time, we finally relented.

Here is what we have gained:

- a daughter that is no longer failure to thrive. She is thriving with a healthy BMI.

- ability to control how many calories she gets and to add or subtract as needed.

- ability to avoid hospitalization for dehydration by using the tube for fluids.

- freedom from the stress that came with all our meals. I no longer cry at meals because she won't eat enough. I no longer have the nutritionist on speed dial and all the feeding therapists don't remember us any more.

- power over this disease. Before my daughter's first birthday and several months after her diagnosis, my husband and I decided that we NEVER wanted to look back and feel that we hadn't done everything we could to fight this disease. And this tube is one of those things. In the long run, BMI is positively correlated to lung function, so being able to control BMI means power over lung function.

I know this is such a hard decision. I get it. I hate the tube. I hate that my daughter has to have it. I wish it weren't this way. But I would still make the same decision. I would still take all we have gained over the things we've lost.
 
M

Mommafirst

Guest
My daughter is pancreatic sufficient. She has one main CF symptom that has plagued her, her inability to gain weight on a normal calorie diet. She just can't intake enough calories to gain weight. Her lungs are good, though we've had our share of illnesses, whose to say if those are all CF stuff or not - or related to her low weight.

All I can say is that the tube was the hardest decision I ever made. First was the fact that it was so "disfiguring" (to me anyway) and because she does pretty well anyway, so why do this. But when the docs said it was time, we finally relented.

Here is what we have gained:

- a daughter that is no longer failure to thrive. She is thriving with a healthy BMI.

- ability to control how many calories she gets and to add or subtract as needed.

- ability to avoid hospitalization for dehydration by using the tube for fluids.

- freedom from the stress that came with all our meals. I no longer cry at meals because she won't eat enough. I no longer have the nutritionist on speed dial and all the feeding therapists don't remember us any more.

- power over this disease. Before my daughter's first birthday and several months after her diagnosis, my husband and I decided that we NEVER wanted to look back and feel that we hadn't done everything we could to fight this disease. And this tube is one of those things. In the long run, BMI is positively correlated to lung function, so being able to control BMI means power over lung function.

I know this is such a hard decision. I get it. I hate the tube. I hate that my daughter has to have it. I wish it weren't this way. But I would still make the same decision. I would still take all we have gained over the things we've lost.
 
M

Mommafirst

Guest
My daughter is pancreatic sufficient. She has one main CF symptom that has plagued her, her inability to gain weight on a normal calorie diet. She just can't intake enough calories to gain weight. Her lungs are good, though we've had our share of illnesses, whose to say if those are all CF stuff or not - or related to her low weight.
<br />
<br />All I can say is that the tube was the hardest decision I ever made. First was the fact that it was so "disfiguring" (to me anyway) and because she does pretty well anyway, so why do this. But when the docs said it was time, we finally relented.
<br />
<br />Here is what we have gained:
<br />
<br />- a daughter that is no longer failure to thrive. She is thriving with a healthy BMI.
<br />
<br />- ability to control how many calories she gets and to add or subtract as needed.
<br />
<br />- ability to avoid hospitalization for dehydration by using the tube for fluids.
<br />
<br />- freedom from the stress that came with all our meals. I no longer cry at meals because she won't eat enough. I no longer have the nutritionist on speed dial and all the feeding therapists don't remember us any more.
<br />
<br />- power over this disease. Before my daughter's first birthday and several months after her diagnosis, my husband and I decided that we NEVER wanted to look back and feel that we hadn't done everything we could to fight this disease. And this tube is one of those things. In the long run, BMI is positively correlated to lung function, so being able to control BMI means power over lung function.
<br />
<br />I know this is such a hard decision. I get it. I hate the tube. I hate that my daughter has to have it. I wish it weren't this way. But I would still make the same decision. I would still take all we have gained over the things we've lost.
 
C

crickit715

New member
i totally agree with heather above....i wouldnt have said anything different..my daughter went from below 5th percentile to a steady above 85th percentile....and like mentioned it has other "side" benefits. it was a super tough decision but i am so glad we made it. good luck with your decision!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

crickit715

New member
i totally agree with heather above....i wouldnt have said anything different..my daughter went from below 5th percentile to a steady above 85th percentile....and like mentioned it has other "side" benefits. it was a super tough decision but i am so glad we made it. good luck with your decision!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

crickit715

New member
i totally agree with heather above....i wouldnt have said anything different..my daughter went from below 5th percentile to a steady above 85th percentile....and like mentioned it has other "side" benefits. it was a super tough decision but i am so glad we made it. good luck with your decision!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

MissAlexsBP

Guest
Hello!

Good luck with whatever you choose! I got my G-tube when I was 8 and it was one of the best things I've had done. I got mine out when I was 15, but it helped so much. For me, I just didn't have much of an appetite and I was super picky. Eating was a chore, and I HATED doing it. The G-tube helped me with that sooo much. I gained enough weight and actually my appetite increased.
Since it was a while ago, I don't recall whether it affected number of hospitalizations, etc (although I was around an area with mold, so I was in quite a bit, but that was the mold...).
Now that I'm 21 I'm still so glad that we got one for me. It took the stress off of eating and now I have a HUGE appetite and can gain weight on my own.
I was fed at night, and afterwards I typically wasn't hungry in the morning, just because I'd been getting formula all night, but then I was gaining weight and life was good.
It was pretty easy to take care of. I'm not sure when we had to change the Mickey Button, but I think it was something like every 3 or 6 months, but that wasn't a problem at all. You just sucked the liquid out of the balloon using a syringe (sp?) and then take out the button, but in the new button and fill up the balloon with saline.

Please let me know if I can answer anything else!

Good luck, and in short, I LOVED my G-tube!

-Alex xx
 
M

MissAlexsBP

Guest
Hello!

Good luck with whatever you choose! I got my G-tube when I was 8 and it was one of the best things I've had done. I got mine out when I was 15, but it helped so much. For me, I just didn't have much of an appetite and I was super picky. Eating was a chore, and I HATED doing it. The G-tube helped me with that sooo much. I gained enough weight and actually my appetite increased.
Since it was a while ago, I don't recall whether it affected number of hospitalizations, etc (although I was around an area with mold, so I was in quite a bit, but that was the mold...).
Now that I'm 21 I'm still so glad that we got one for me. It took the stress off of eating and now I have a HUGE appetite and can gain weight on my own.
I was fed at night, and afterwards I typically wasn't hungry in the morning, just because I'd been getting formula all night, but then I was gaining weight and life was good.
It was pretty easy to take care of. I'm not sure when we had to change the Mickey Button, but I think it was something like every 3 or 6 months, but that wasn't a problem at all. You just sucked the liquid out of the balloon using a syringe (sp?) and then take out the button, but in the new button and fill up the balloon with saline.

Please let me know if I can answer anything else!

Good luck, and in short, I LOVED my G-tube!

-Alex xx
 
M

MissAlexsBP

Guest
Hello!
<br />
<br />Good luck with whatever you choose! I got my G-tube when I was 8 and it was one of the best things I've had done. I got mine out when I was 15, but it helped so much. For me, I just didn't have much of an appetite and I was super picky. Eating was a chore, and I HATED doing it. The G-tube helped me with that sooo much. I gained enough weight and actually my appetite increased.
<br />Since it was a while ago, I don't recall whether it affected number of hospitalizations, etc (although I was around an area with mold, so I was in quite a bit, but that was the mold...).
<br />Now that I'm 21 I'm still so glad that we got one for me. It took the stress off of eating and now I have a HUGE appetite and can gain weight on my own.
<br />I was fed at night, and afterwards I typically wasn't hungry in the morning, just because I'd been getting formula all night, but then I was gaining weight and life was good.
<br />It was pretty easy to take care of. I'm not sure when we had to change the Mickey Button, but I think it was something like every 3 or 6 months, but that wasn't a problem at all. You just sucked the liquid out of the balloon using a syringe (sp?) and then take out the button, but in the new button and fill up the balloon with saline.
<br />
<br />Please let me know if I can answer anything else!
<br />
<br />Good luck, and in short, I LOVED my G-tube!
<br />
<br />-Alex xx
 
H

hmw

New member
Just as a followup to my pm- Emily had her first clinic appt after getting her tube... and she's up 2 pounds!! <img src="i/expressions/face-icon-small-happy.gif" border="0"> And her appetite is steadily increasing as well- she has a smaller breakfast than she used to, but eats a huge lunch and dinner and a couple snacks a day as she always did before. Care is not difficult. Emily wipes around it with a wet paper towel to get off any goopy discharge or crusties (which at this point isn't much) before hooking herself up at night and sometimes wants a gauze square around it- you'll get ones made to fit around the site. Regular bathing pretty much keeps it looking clean.

At clinic we were given instructions for how to bolus feed her when she gets sick, since losing a lot of weight when she is ill is her biggest problem ...if she didn't routinely lose 10%or so of her body weight with illness we may never have reached the point of needing the tube. This will be a huge benefit of having it, I think... getting the extra calories into her at these times. If I am remembering right your dd can drop huge amounts of weight in very short amounts of time as well at fairly predictable times- having a way to help prevent that could be so valuable.
 
H

hmw

New member
Just as a followup to my pm- Emily had her first clinic appt after getting her tube... and she's up 2 pounds!! <img src="i/expressions/face-icon-small-happy.gif" border="0"> And her appetite is steadily increasing as well- she has a smaller breakfast than she used to, but eats a huge lunch and dinner and a couple snacks a day as she always did before. Care is not difficult. Emily wipes around it with a wet paper towel to get off any goopy discharge or crusties (which at this point isn't much) before hooking herself up at night and sometimes wants a gauze square around it- you'll get ones made to fit around the site. Regular bathing pretty much keeps it looking clean.

At clinic we were given instructions for how to bolus feed her when she gets sick, since losing a lot of weight when she is ill is her biggest problem ...if she didn't routinely lose 10%or so of her body weight with illness we may never have reached the point of needing the tube. This will be a huge benefit of having it, I think... getting the extra calories into her at these times. If I am remembering right your dd can drop huge amounts of weight in very short amounts of time as well at fairly predictable times- having a way to help prevent that could be so valuable.
 
H

hmw

New member
Just as a followup to my pm- Emily had her first clinic appt after getting her tube... and she's up 2 pounds!! <img src="i/expressions/face-icon-small-happy.gif" border="0"> And her appetite is steadily increasing as well- she has a smaller breakfast than she used to, but eats a huge lunch and dinner and a couple snacks a day as she always did before. Care is not difficult. Emily wipes around it with a wet paper towel to get off any goopy discharge or crusties (which at this point isn't much) before hooking herself up at night and sometimes wants a gauze square around it- you'll get ones made to fit around the site. Regular bathing pretty much keeps it looking clean.
<br />
<br />At clinic we were given instructions for how to bolus feed her when she gets sick, since losing a lot of weight when she is ill is her biggest problem ...if she didn't routinely lose 10%or so of her body weight with illness we may never have reached the point of needing the tube. This will be a huge benefit of having it, I think... getting the extra calories into her at these times. If I am remembering right your dd can drop huge amounts of weight in very short amounts of time as well at fairly predictable times- having a way to help prevent that could be so valuable.
 
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