G Tube questions

arbrown5676 · Sep 16, 2009

My daughter is 15 months old. Her CF doctor talked about doing a G-tube because her weight is in the -5% for her age group. My biggest concern is if she really needs it.. Im little, Im 22 and weigh 97 pounds and Im 5ft tall.. so can she just not be like me, a little person? She has a great appetite she eats constantly, and has more energy than her two year old sister that is w/o CF. She takes pancreas mt 4's, and she is tiny.. she looks and acts healthy as can be. I've discussed this with her doctors and they didnt seem to listen to me. Comparing mine and her fathers growth charts when we were little, we we're both behind in weight. A G-tube is a big deal. I just dont want to put her through anymore than what she already has to deal with, unless she actually needs it.

arbrown5676 · Sep 16, 2009

My daughter is 15 months old. Her CF doctor talked about doing a G-tube because her weight is in the -5% for her age group. My biggest concern is if she really needs it.. Im little, Im 22 and weigh 97 pounds and Im 5ft tall.. so can she just not be like me, a little person? She has a great appetite she eats constantly, and has more energy than her two year old sister that is w/o CF. She takes pancreas mt 4's, and she is tiny.. she looks and acts healthy as can be. I've discussed this with her doctors and they didnt seem to listen to me. Comparing mine and her fathers growth charts when we were little, we we're both behind in weight. A G-tube is a big deal. I just dont want to put her through anymore than what she already has to deal with, unless she actually needs it.

arbrown5676 · Sep 16, 2009

My daughter is 15 months old. Her CF doctor talked about doing a G-tube because her weight is in the -5% for her age group. My biggest concern is if she really needs it.. Im little, Im 22 and weigh 97 pounds and Im 5ft tall.. so can she just not be like me, a little person? She has a great appetite she eats constantly, and has more energy than her two year old sister that is w/o CF. She takes pancreas mt 4's, and she is tiny.. she looks and acts healthy as can be. I've discussed this with her doctors and they didnt seem to listen to me. Comparing mine and her fathers growth charts when we were little, we we're both behind in weight. A G-tube is a big deal. I just dont want to put her through anymore than what she already has to deal with, unless she actually needs it.

arbrown5676 · Sep 16, 2009

My daughter is 15 months old. Her CF doctor talked about doing a G-tube because her weight is in the -5% for her age group. My biggest concern is if she really needs it.. Im little, Im 22 and weigh 97 pounds and Im 5ft tall.. so can she just not be like me, a little person? She has a great appetite she eats constantly, and has more energy than her two year old sister that is w/o CF. She takes pancreas mt 4's, and she is tiny.. she looks and acts healthy as can be. I've discussed this with her doctors and they didnt seem to listen to me. Comparing mine and her fathers growth charts when we were little, we we're both behind in weight. A G-tube is a big deal. I just dont want to put her through anymore than what she already has to deal with, unless she actually needs it.

arbrown5676 · Sep 16, 2009

My daughter is 15 months old. Her CF doctor talked about doing a G-tube because her weight is in the -5% for her age group. My biggest concern is if she really needs it.. Im little, Im 22 and weigh 97 pounds and Im 5ft tall.. so can she just not be like me, a little person? She has a great appetite she eats constantly, and has more energy than her two year old sister that is w/o CF. She takes pancreas mt 4's, and she is tiny.. she looks and acts healthy as can be. I've discussed this with her doctors and they didnt seem to listen to me. Comparing mine and her fathers growth charts when we were little, we we're both behind in weight. A G-tube is a big deal. I just dont want to put her through anymore than what she already has to deal with, unless she actually needs it.

Cherylwithone · Sep 16, 2009

You would have to sit and weigh the pro's and con's. I thought the same thing with my daughter. I was always small
and I just assumed she was following me. She was listed failure to thrive. She was always below on the growth chart.

Odds are her doctors are looking at if she gets a bad infection
her weight will drop even more. This starts the roller coaster
ride of low weight = can't fight infection. Plus people with
CF seem to drop weight very fast when they are sick.

Also, you might consider the fact that as she gets a little older she will burn more calories thus not being able to keep what weight she already has.

My daughter is now 16 years old. The MI-KEY has been there
so long we don't notice it. I must say it has come in handy
for GI clean outs when she is blocked. Nasty tasting meds etc.

I hope so of the younger moms will answer and give their
side. You can also ask the dr's what if you wait and revist the idea when she is 2. It's a lot to take in.

Cherylwithone · Sep 16, 2009

You would have to sit and weigh the pro's and con's. I thought the same thing with my daughter. I was always small
and I just assumed she was following me. She was listed failure to thrive. She was always below on the growth chart.

Odds are her doctors are looking at if she gets a bad infection
her weight will drop even more. This starts the roller coaster
ride of low weight = can't fight infection. Plus people with
CF seem to drop weight very fast when they are sick.

Also, you might consider the fact that as she gets a little older she will burn more calories thus not being able to keep what weight she already has.

My daughter is now 16 years old. The MI-KEY has been there
so long we don't notice it. I must say it has come in handy
for GI clean outs when she is blocked. Nasty tasting meds etc.

I hope so of the younger moms will answer and give their
side. You can also ask the dr's what if you wait and revist the idea when she is 2. It's a lot to take in.

Cherylwithone · Sep 16, 2009

You would have to sit and weigh the pro's and con's. I thought the same thing with my daughter. I was always small
and I just assumed she was following me. She was listed failure to thrive. She was always below on the growth chart.

Odds are her doctors are looking at if she gets a bad infection
her weight will drop even more. This starts the roller coaster
ride of low weight = can't fight infection. Plus people with
CF seem to drop weight very fast when they are sick.

Also, you might consider the fact that as she gets a little older she will burn more calories thus not being able to keep what weight she already has.

My daughter is now 16 years old. The MI-KEY has been there
so long we don't notice it. I must say it has come in handy
for GI clean outs when she is blocked. Nasty tasting meds etc.

I hope so of the younger moms will answer and give their
side. You can also ask the dr's what if you wait and revist the idea when she is 2. It's a lot to take in.

Cherylwithone · Sep 16, 2009

You would have to sit and weigh the pro's and con's. I thought the same thing with my daughter. I was always small
and I just assumed she was following me. She was listed failure to thrive. She was always below on the growth chart.

Odds are her doctors are looking at if she gets a bad infection
her weight will drop even more. This starts the roller coaster
ride of low weight = can't fight infection. Plus people with
CF seem to drop weight very fast when they are sick.

Also, you might consider the fact that as she gets a little older she will burn more calories thus not being able to keep what weight she already has.

My daughter is now 16 years old. The MI-KEY has been there
so long we don't notice it. I must say it has come in handy
for GI clean outs when she is blocked. Nasty tasting meds etc.

I hope so of the younger moms will answer and give their
side. You can also ask the dr's what if you wait and revist the idea when she is 2. It's a lot to take in.

Cherylwithone · Sep 16, 2009

You would have to sit and weigh the pro's and con's. I thought the same thing with my daughter. I was always small
 and I just assumed she was following me. She was listed failure to thrive. She was always below on the growth chart.
 
 Odds are her doctors are looking at if she gets a bad infection
 her weight will drop even more. This starts the roller coaster
 ride of low weight = can't fight infection. Plus people with
 CF seem to drop weight very fast when they are sick.
 
 Also, you might consider the fact that as she gets a little older she will burn more calories thus not being able to keep what weight she already has.
 
 My daughter is now 16 years old. The MI-KEY has been there
 so long we don't notice it. I must say it has come in handy
 for GI clean outs when she is blocked. Nasty tasting meds etc.
 
 I hope so of the younger moms will answer and give their
 side. You can also ask the dr's what if you wait and revist the idea when she is 2. It's a lot to take in.

BabyBeauty · Sep 16, 2009

Everyone has to make their own decision regarding a feeding tube for their child. Here is my experience:

My daughter has always struggled with weight. She is now 19 months old and we were going to weight checks every other week; changing this, changing that, etc. Avery finally got down to the 10th percentile and they suggested a feeding tube. I went through a lot of emotions. But after reading here I found that most people that got it were happy with it. The surgery was not that bad. They gave her pain meds so she was comfy. She was crawling 2 days after surgery (she was 9 months old when she got it)!! Two months after surgery she was in the 50th percentile!! It was such a relief to have the feeding tube. I don't stress if she has a few days where she eats like a bird. I also come from the opinion of having extra weight on a cfer is a good thing. I want every advantage in my corner if she gets an infection.

Again this is my experience...you have to make your own. But please know if you decide to go forward it is not all that bad.

BabyBeauty · Sep 16, 2009

Everyone has to make their own decision regarding a feeding tube for their child. Here is my experience:

My daughter has always struggled with weight. She is now 19 months old and we were going to weight checks every other week; changing this, changing that, etc. Avery finally got down to the 10th percentile and they suggested a feeding tube. I went through a lot of emotions. But after reading here I found that most people that got it were happy with it. The surgery was not that bad. They gave her pain meds so she was comfy. She was crawling 2 days after surgery (she was 9 months old when she got it)!! Two months after surgery she was in the 50th percentile!! It was such a relief to have the feeding tube. I don't stress if she has a few days where she eats like a bird. I also come from the opinion of having extra weight on a cfer is a good thing. I want every advantage in my corner if she gets an infection.

Again this is my experience...you have to make your own. But please know if you decide to go forward it is not all that bad.

BabyBeauty · Sep 16, 2009

Everyone has to make their own decision regarding a feeding tube for their child. Here is my experience:

My daughter has always struggled with weight. She is now 19 months old and we were going to weight checks every other week; changing this, changing that, etc. Avery finally got down to the 10th percentile and they suggested a feeding tube. I went through a lot of emotions. But after reading here I found that most people that got it were happy with it. The surgery was not that bad. They gave her pain meds so she was comfy. She was crawling 2 days after surgery (she was 9 months old when she got it)!! Two months after surgery she was in the 50th percentile!! It was such a relief to have the feeding tube. I don't stress if she has a few days where she eats like a bird. I also come from the opinion of having extra weight on a cfer is a good thing. I want every advantage in my corner if she gets an infection.

Again this is my experience...you have to make your own. But please know if you decide to go forward it is not all that bad.

BabyBeauty · Sep 16, 2009

Everyone has to make their own decision regarding a feeding tube for their child. Here is my experience:

My daughter has always struggled with weight. She is now 19 months old and we were going to weight checks every other week; changing this, changing that, etc. Avery finally got down to the 10th percentile and they suggested a feeding tube. I went through a lot of emotions. But after reading here I found that most people that got it were happy with it. The surgery was not that bad. They gave her pain meds so she was comfy. She was crawling 2 days after surgery (she was 9 months old when she got it)!! Two months after surgery she was in the 50th percentile!! It was such a relief to have the feeding tube. I don't stress if she has a few days where she eats like a bird. I also come from the opinion of having extra weight on a cfer is a good thing. I want every advantage in my corner if she gets an infection.

Again this is my experience...you have to make your own. But please know if you decide to go forward it is not all that bad.

BabyBeauty · Sep 16, 2009

Everyone has to make their own decision regarding a feeding tube for their child. Here is my experience:
 
 My daughter has always struggled with weight. She is now 19 months old and we were going to weight checks every other week; changing this, changing that, etc. Avery finally got down to the 10th percentile and they suggested a feeding tube. I went through a lot of emotions. But after reading here I found that most people that got it were happy with it. The surgery was not that bad. They gave her pain meds so she was comfy. She was crawling 2 days after surgery (she was 9 months old when she got it)!! Two months after surgery she was in the 50th percentile!! It was such a relief to have the feeding tube. I don't stress if she has a few days where she eats like a bird. I also come from the opinion of having extra weight on a cfer is a good thing. I want every advantage in my corner if she gets an infection.
 
 Again this is my experience...you have to make your own. But please know if you decide to go forward it is not all that bad.

Mommafirst · Sep 16, 2009

One of the hardest parts is coming to the realization that you can't compare your CF child to you or your non-cf kids. It feels impossible to not want to shrug off the weight issue on genetics, but from the doctors perspective it really doesn't matter why. Bottomline is that the tube will put weight on and more weight on a CFer means a better chance to fight infection and a documented greater lung functioning overall. We finally decided to go the route of the tube because we just didn't want to be 20 years down the road and regretting not have done everything in our power to keep my daughter healthy.

You are right, it IS a big deal. And its a HUGE decision. A decision over which I cried tooo many tears. I hate that my daughter has to have a tube, but I am thankful that it has helped her so much and that our doctors are proactive enough to encourage this now.

Mommafirst · Sep 16, 2009

One of the hardest parts is coming to the realization that you can't compare your CF child to you or your non-cf kids. It feels impossible to not want to shrug off the weight issue on genetics, but from the doctors perspective it really doesn't matter why. Bottomline is that the tube will put weight on and more weight on a CFer means a better chance to fight infection and a documented greater lung functioning overall. We finally decided to go the route of the tube because we just didn't want to be 20 years down the road and regretting not have done everything in our power to keep my daughter healthy.

You are right, it IS a big deal. And its a HUGE decision. A decision over which I cried tooo many tears. I hate that my daughter has to have a tube, but I am thankful that it has helped her so much and that our doctors are proactive enough to encourage this now.

Mommafirst · Sep 16, 2009

One of the hardest parts is coming to the realization that you can't compare your CF child to you or your non-cf kids. It feels impossible to not want to shrug off the weight issue on genetics, but from the doctors perspective it really doesn't matter why. Bottomline is that the tube will put weight on and more weight on a CFer means a better chance to fight infection and a documented greater lung functioning overall. We finally decided to go the route of the tube because we just didn't want to be 20 years down the road and regretting not have done everything in our power to keep my daughter healthy.

You are right, it IS a big deal. And its a HUGE decision. A decision over which I cried tooo many tears. I hate that my daughter has to have a tube, but I am thankful that it has helped her so much and that our doctors are proactive enough to encourage this now.

Mommafirst · Sep 16, 2009

One of the hardest parts is coming to the realization that you can't compare your CF child to you or your non-cf kids. It feels impossible to not want to shrug off the weight issue on genetics, but from the doctors perspective it really doesn't matter why. Bottomline is that the tube will put weight on and more weight on a CFer means a better chance to fight infection and a documented greater lung functioning overall. We finally decided to go the route of the tube because we just didn't want to be 20 years down the road and regretting not have done everything in our power to keep my daughter healthy.

You are right, it IS a big deal. And its a HUGE decision. A decision over which I cried tooo many tears. I hate that my daughter has to have a tube, but I am thankful that it has helped her so much and that our doctors are proactive enough to encourage this now.

Mommafirst · Sep 16, 2009

One of the hardest parts is coming to the realization that you can't compare your CF child to you or your non-cf kids. It feels impossible to not want to shrug off the weight issue on genetics, but from the doctors perspective it really doesn't matter why. Bottomline is that the tube will put weight on and more weight on a CFer means a better chance to fight infection and a documented greater lung functioning overall. We finally decided to go the route of the tube because we just didn't want to be 20 years down the road and regretting not have done everything in our power to keep my daughter healthy.
 
 You are right, it IS a big deal. And its a HUGE decision. A decision over which I cried tooo many tears. I hate that my daughter has to have a tube, but I am thankful that it has helped her so much and that our doctors are proactive enough to encourage this now.

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