anyone have experience with a nasojejunal feeding tube for an older kid?

S

stringbean

New member
After a year of trying and failing to increase my daughter's weight, her doctor would like to jumpstart her growth by using a feeding tube running through her nose. But this isn't meant to be a permanent solution, nor does he know how she will tolerate the suppliment so he doesn't want to do the more invasive g-tube.

I know of babies who have had this, but I don't know of any kids. My daughter is eight and has a few sensory issues (which the doctor is well aware of). She doesn't like the seam in her socks, so I'm a bit nervous of shoving something through her nose.

How long did it take for your child to be able to tolerate the tube?

Did you have any problems doing the nighttime feedings? Anything I should be aware of before we go in to do this next week? I can't even begin to wrap my head around this to formulate the questions I need to ask. Any advice anyone has will be much appreciated.

It will be the first time in the hospital for her as well, and she's just a nervous wreck of a little kid, so hints for spending two days in the hospital would also be much, much appreciated!!!!! Thanks.
 
S

stringbean

New member
After a year of trying and failing to increase my daughter's weight, her doctor would like to jumpstart her growth by using a feeding tube running through her nose. But this isn't meant to be a permanent solution, nor does he know how she will tolerate the suppliment so he doesn't want to do the more invasive g-tube.

I know of babies who have had this, but I don't know of any kids. My daughter is eight and has a few sensory issues (which the doctor is well aware of). She doesn't like the seam in her socks, so I'm a bit nervous of shoving something through her nose.

How long did it take for your child to be able to tolerate the tube?

Did you have any problems doing the nighttime feedings? Anything I should be aware of before we go in to do this next week? I can't even begin to wrap my head around this to formulate the questions I need to ask. Any advice anyone has will be much appreciated.

It will be the first time in the hospital for her as well, and she's just a nervous wreck of a little kid, so hints for spending two days in the hospital would also be much, much appreciated!!!!! Thanks.
 
S

stringbean

New member
After a year of trying and failing to increase my daughter's weight, her doctor would like to jumpstart her growth by using a feeding tube running through her nose. But this isn't meant to be a permanent solution, nor does he know how she will tolerate the suppliment so he doesn't want to do the more invasive g-tube.

I know of babies who have had this, but I don't know of any kids. My daughter is eight and has a few sensory issues (which the doctor is well aware of). She doesn't like the seam in her socks, so I'm a bit nervous of shoving something through her nose.

How long did it take for your child to be able to tolerate the tube?

Did you have any problems doing the nighttime feedings? Anything I should be aware of before we go in to do this next week? I can't even begin to wrap my head around this to formulate the questions I need to ask. Any advice anyone has will be much appreciated.

It will be the first time in the hospital for her as well, and she's just a nervous wreck of a little kid, so hints for spending two days in the hospital would also be much, much appreciated!!!!! Thanks.
 
S

stringbean

New member
After a year of trying and failing to increase my daughter's weight, her doctor would like to jumpstart her growth by using a feeding tube running through her nose. But this isn't meant to be a permanent solution, nor does he know how she will tolerate the suppliment so he doesn't want to do the more invasive g-tube.

I know of babies who have had this, but I don't know of any kids. My daughter is eight and has a few sensory issues (which the doctor is well aware of). She doesn't like the seam in her socks, so I'm a bit nervous of shoving something through her nose.

How long did it take for your child to be able to tolerate the tube?

Did you have any problems doing the nighttime feedings? Anything I should be aware of before we go in to do this next week? I can't even begin to wrap my head around this to formulate the questions I need to ask. Any advice anyone has will be much appreciated.

It will be the first time in the hospital for her as well, and she's just a nervous wreck of a little kid, so hints for spending two days in the hospital would also be much, much appreciated!!!!! Thanks.
 
S

stringbean

New member
After a year of trying and failing to increase my daughter's weight, her doctor would like to jumpstart her growth by using a feeding tube running through her nose. But this isn't meant to be a permanent solution, nor does he know how she will tolerate the suppliment so he doesn't want to do the more invasive g-tube.
<br />
<br />I know of babies who have had this, but I don't know of any kids. My daughter is eight and has a few sensory issues (which the doctor is well aware of). She doesn't like the seam in her socks, so I'm a bit nervous of shoving something through her nose.
<br />
<br />How long did it take for your child to be able to tolerate the tube?
<br />
<br />Did you have any problems doing the nighttime feedings? Anything I should be aware of before we go in to do this next week? I can't even begin to wrap my head around this to formulate the questions I need to ask. Any advice anyone has will be much appreciated.
<br />
<br />It will be the first time in the hospital for her as well, and she's just a nervous wreck of a little kid, so hints for spending two days in the hospital would also be much, much appreciated!!!!! Thanks.
 
M

Mommafirst

Guest
I am a bit concerned that a doctor thinks this is a good way to go for a kid of this age with sensory issues. Your daughter isn't young enough to just do it and not ask questions, nor is she old enough to cognitively decide this is how she wants to go. UGH.

My daughter is 4 and had her g-tube at age 2.5 placed. We really thought the ng would be a better choice back then, but our doctor refused saying she would just rip it out. He said it feels really odd for the kids and they pull on it. Unless you can do it as babies (my daughter did have one in the NICU) its really hard to get used to. Its also okay for older kids who know how to place it themselves and just do it for overnight feeds.

The g-tube is not a permanent thing, necessarily, and I know plenty of people who had one placed for only a few months as a jump start.

There is a really great board I go to where there are tons of feeding tube moms. Most don't have CF, but it is a good resource. <a target=_blank class=ftalternatingbarlinklarge href="http://www.parent-2-parent.com/forum/forumdisplay.php/15-Tube-Feeding-Issues">http://www.parent-2-parent.com...15-Tube-Feeding-Issues</a>
 
M

Mommafirst

Guest
I am a bit concerned that a doctor thinks this is a good way to go for a kid of this age with sensory issues. Your daughter isn't young enough to just do it and not ask questions, nor is she old enough to cognitively decide this is how she wants to go. UGH.

My daughter is 4 and had her g-tube at age 2.5 placed. We really thought the ng would be a better choice back then, but our doctor refused saying she would just rip it out. He said it feels really odd for the kids and they pull on it. Unless you can do it as babies (my daughter did have one in the NICU) its really hard to get used to. Its also okay for older kids who know how to place it themselves and just do it for overnight feeds.

The g-tube is not a permanent thing, necessarily, and I know plenty of people who had one placed for only a few months as a jump start.

There is a really great board I go to where there are tons of feeding tube moms. Most don't have CF, but it is a good resource. <a target=_blank class=ftalternatingbarlinklarge href="http://www.parent-2-parent.com/forum/forumdisplay.php/15-Tube-Feeding-Issues">http://www.parent-2-parent.com...15-Tube-Feeding-Issues</a>
 
M

Mommafirst

Guest
I am a bit concerned that a doctor thinks this is a good way to go for a kid of this age with sensory issues. Your daughter isn't young enough to just do it and not ask questions, nor is she old enough to cognitively decide this is how she wants to go. UGH.

My daughter is 4 and had her g-tube at age 2.5 placed. We really thought the ng would be a better choice back then, but our doctor refused saying she would just rip it out. He said it feels really odd for the kids and they pull on it. Unless you can do it as babies (my daughter did have one in the NICU) its really hard to get used to. Its also okay for older kids who know how to place it themselves and just do it for overnight feeds.

The g-tube is not a permanent thing, necessarily, and I know plenty of people who had one placed for only a few months as a jump start.

There is a really great board I go to where there are tons of feeding tube moms. Most don't have CF, but it is a good resource. <a target=_blank class=ftalternatingbarlinklarge href="http://www.parent-2-parent.com/forum/forumdisplay.php/15-Tube-Feeding-Issues">http://www.parent-2-parent.com...15-Tube-Feeding-Issues</a>
 
M

Mommafirst

Guest
I am a bit concerned that a doctor thinks this is a good way to go for a kid of this age with sensory issues. Your daughter isn't young enough to just do it and not ask questions, nor is she old enough to cognitively decide this is how she wants to go. UGH.

My daughter is 4 and had her g-tube at age 2.5 placed. We really thought the ng would be a better choice back then, but our doctor refused saying she would just rip it out. He said it feels really odd for the kids and they pull on it. Unless you can do it as babies (my daughter did have one in the NICU) its really hard to get used to. Its also okay for older kids who know how to place it themselves and just do it for overnight feeds.

The g-tube is not a permanent thing, necessarily, and I know plenty of people who had one placed for only a few months as a jump start.

There is a really great board I go to where there are tons of feeding tube moms. Most don't have CF, but it is a good resource. <a target=_blank class=ftalternatingbarlinklarge href="http://www.parent-2-parent.com/forum/forumdisplay.php/15-Tube-Feeding-Issues">http://www.parent-2-parent.com...15-Tube-Feeding-Issues</a>
 
M

Mommafirst

Guest
I am a bit concerned that a doctor thinks this is a good way to go for a kid of this age with sensory issues. Your daughter isn't young enough to just do it and not ask questions, nor is she old enough to cognitively decide this is how she wants to go. UGH.
<br />
<br />My daughter is 4 and had her g-tube at age 2.5 placed. We really thought the ng would be a better choice back then, but our doctor refused saying she would just rip it out. He said it feels really odd for the kids and they pull on it. Unless you can do it as babies (my daughter did have one in the NICU) its really hard to get used to. Its also okay for older kids who know how to place it themselves and just do it for overnight feeds.
<br />
<br />The g-tube is not a permanent thing, necessarily, and I know plenty of people who had one placed for only a few months as a jump start.
<br />
<br />There is a really great board I go to where there are tons of feeding tube moms. Most don't have CF, but it is a good resource. <a target=_blank class=ftalternatingbarlinklarge href="http://www.parent-2-parent.com/forum/forumdisplay.php/15-Tube-Feeding-Issues">http://www.parent-2-parent.com...15-Tube-Feeding-Issues</a>
 
S

sdelorenzo

Guest
My daughter had a ng button (nose) for a few months when she was an infant. At 5 years old she had a g-button placed. After having both, I am surprised that the dr thinks an ng tube is the way to go. I KNOW my 8 year old daughter wouldn't cooperate for the nightly placement of a ng button at all. It wasn't fun. But my daughter has absolutely not problems with the g-button and she never has. It is really pretty simple and easy on the kids. Yes, it can be taken out easily when it is not needed anymore.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 14 month no cf
 
S

sdelorenzo

Guest
My daughter had a ng button (nose) for a few months when she was an infant. At 5 years old she had a g-button placed. After having both, I am surprised that the dr thinks an ng tube is the way to go. I KNOW my 8 year old daughter wouldn't cooperate for the nightly placement of a ng button at all. It wasn't fun. But my daughter has absolutely not problems with the g-button and she never has. It is really pretty simple and easy on the kids. Yes, it can be taken out easily when it is not needed anymore.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 14 month no cf
 
S

sdelorenzo

Guest
My daughter had a ng button (nose) for a few months when she was an infant. At 5 years old she had a g-button placed. After having both, I am surprised that the dr thinks an ng tube is the way to go. I KNOW my 8 year old daughter wouldn't cooperate for the nightly placement of a ng button at all. It wasn't fun. But my daughter has absolutely not problems with the g-button and she never has. It is really pretty simple and easy on the kids. Yes, it can be taken out easily when it is not needed anymore.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 14 month no cf
 
S

sdelorenzo

Guest
My daughter had a ng button (nose) for a few months when she was an infant. At 5 years old she had a g-button placed. After having both, I am surprised that the dr thinks an ng tube is the way to go. I KNOW my 8 year old daughter wouldn't cooperate for the nightly placement of a ng button at all. It wasn't fun. But my daughter has absolutely not problems with the g-button and she never has. It is really pretty simple and easy on the kids. Yes, it can be taken out easily when it is not needed anymore.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 14 month no cf
 
S

sdelorenzo

Guest
My daughter had a ng button (nose) for a few months when she was an infant. At 5 years old she had a g-button placed. After having both, I am surprised that the dr thinks an ng tube is the way to go. I KNOW my 8 year old daughter wouldn't cooperate for the nightly placement of a ng button at all. It wasn't fun. But my daughter has absolutely not problems with the g-button and she never has. It is really pretty simple and easy on the kids. Yes, it can be taken out easily when it is not needed anymore.
<br />Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 14 month no cf
 
C

Cherylwithone

Guest
My daughter spent one summer with a NG tube. She was a bit older then your daughter. Not to freak you out or anything
but when they vomit the stays in the nose but the part in the stomach can come out with the vomit. We just cut the
end that came out of the stomach and pulled the other half out the nose. Keep in mind she did not have sensory issues.

When they put the tube in they have them drink something. water, juice what ever. The swallowing makes the tube go down easier. There are older kids that did not want a
Mic-key button and prefered the NG tube instead. Those kids
would just put them in at night and remove them in the morning. Keep in mind these are teenagers.

I would ask the doctor why an NG if she has senory issues.
That can cause stress for her. Which with CF is not a good
thing.

Again, did not mean to freak you out. Sorry if I did. I just
figured an honest answer is better then sugar coating.
 
C

Cherylwithone

Guest
My daughter spent one summer with a NG tube. She was a bit older then your daughter. Not to freak you out or anything
but when they vomit the stays in the nose but the part in the stomach can come out with the vomit. We just cut the
end that came out of the stomach and pulled the other half out the nose. Keep in mind she did not have sensory issues.

When they put the tube in they have them drink something. water, juice what ever. The swallowing makes the tube go down easier. There are older kids that did not want a
Mic-key button and prefered the NG tube instead. Those kids
would just put them in at night and remove them in the morning. Keep in mind these are teenagers.

I would ask the doctor why an NG if she has senory issues.
That can cause stress for her. Which with CF is not a good
thing.

Again, did not mean to freak you out. Sorry if I did. I just
figured an honest answer is better then sugar coating.
 
C

Cherylwithone

Guest
My daughter spent one summer with a NG tube. She was a bit older then your daughter. Not to freak you out or anything
but when they vomit the stays in the nose but the part in the stomach can come out with the vomit. We just cut the
end that came out of the stomach and pulled the other half out the nose. Keep in mind she did not have sensory issues.

When they put the tube in they have them drink something. water, juice what ever. The swallowing makes the tube go down easier. There are older kids that did not want a
Mic-key button and prefered the NG tube instead. Those kids
would just put them in at night and remove them in the morning. Keep in mind these are teenagers.

I would ask the doctor why an NG if she has senory issues.
That can cause stress for her. Which with CF is not a good
thing.

Again, did not mean to freak you out. Sorry if I did. I just
figured an honest answer is better then sugar coating.
 
C

Cherylwithone

Guest
My daughter spent one summer with a NG tube. She was a bit older then your daughter. Not to freak you out or anything
but when they vomit the stays in the nose but the part in the stomach can come out with the vomit. We just cut the
end that came out of the stomach and pulled the other half out the nose. Keep in mind she did not have sensory issues.

When they put the tube in they have them drink something. water, juice what ever. The swallowing makes the tube go down easier. There are older kids that did not want a
Mic-key button and prefered the NG tube instead. Those kids
would just put them in at night and remove them in the morning. Keep in mind these are teenagers.

I would ask the doctor why an NG if she has senory issues.
That can cause stress for her. Which with CF is not a good
thing.

Again, did not mean to freak you out. Sorry if I did. I just
figured an honest answer is better then sugar coating.
 
C

Cherylwithone

Guest
My daughter spent one summer with a NG tube. She was a bit older then your daughter. Not to freak you out or anything
<br />but when they vomit the stays in the nose but the part in the stomach can come out with the vomit. We just cut the
<br />end that came out of the stomach and pulled the other half out the nose. Keep in mind she did not have sensory issues.
<br />
<br />When they put the tube in they have them drink something. water, juice what ever. The swallowing makes the tube go down easier. There are older kids that did not want a
<br />Mic-key button and prefered the NG tube instead. Those kids
<br />would just put them in at night and remove them in the morning. Keep in mind these are teenagers.
<br />
<br />I would ask the doctor why an NG if she has senory issues.
<br />That can cause stress for her. Which with CF is not a good
<br />thing.
<br />
<br />Again, did not mean to freak you out. Sorry if I did. I just
<br />figured an honest answer is better then sugar coating.
 
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