Tube and limitations

jimiv

New member
After talking with you all and reading a lot more than had been, I talked to my son's doctor and we are looking at ideas related to a feeding tube. I want chase down and pick everyone's brain. My son is 9 and does not have a good understanding about feeding tubes (for that matter his mom, step-mom, and I don't know much yet). What have been everyone's experiences and are there some limitations towards activities such as sports? Is a G tube or a NG tube a better option? I wish I would have moved on this more recently but since there has not been any trouble with his breathing or lung function, we have not worried much about this. I see as we advance that this will need to be addressed sooner rather than later. I appreciate any ideas.
 

jimiv

New member
After talking with you all and reading a lot more than had been, I talked to my son's doctor and we are looking at ideas related to a feeding tube. I want chase down and pick everyone's brain. My son is 9 and does not have a good understanding about feeding tubes (for that matter his mom, step-mom, and I don't know much yet). What have been everyone's experiences and are there some limitations towards activities such as sports? Is a G tube or a NG tube a better option? I wish I would have moved on this more recently but since there has not been any trouble with his breathing or lung function, we have not worried much about this. I see as we advance that this will need to be addressed sooner rather than later. I appreciate any ideas.
 

jimiv

New member
After talking with you all and reading a lot more than had been, I talked to my son's doctor and we are looking at ideas related to a feeding tube. I want chase down and pick everyone's brain. My son is 9 and does not have a good understanding about feeding tubes (for that matter his mom, step-mom, and I don't know much yet). What have been everyone's experiences and are there some limitations towards activities such as sports? Is a G tube or a NG tube a better option? I wish I would have moved on this more recently but since there has not been any trouble with his breathing or lung function, we have not worried much about this. I see as we advance that this will need to be addressed sooner rather than later. I appreciate any ideas.
 

jimiv

New member
After talking with you all and reading a lot more than had been, I talked to my son's doctor and we are looking at ideas related to a feeding tube. I want chase down and pick everyone's brain. My son is 9 and does not have a good understanding about feeding tubes (for that matter his mom, step-mom, and I don't know much yet). What have been everyone's experiences and are there some limitations towards activities such as sports? Is a G tube or a NG tube a better option? I wish I would have moved on this more recently but since there has not been any trouble with his breathing or lung function, we have not worried much about this. I see as we advance that this will need to be addressed sooner rather than later. I appreciate any ideas.
 

jimiv

New member
After talking with you all and reading a lot more than had been, I talked to my son's doctor and we are looking at ideas related to a feeding tube. I want chase down and pick everyone's brain. My son is 9 and does not have a good understanding about feeding tubes (for that matter his mom, step-mom, and I don't know much yet). What have been everyone's experiences and are there some limitations towards activities such as sports? Is a G tube or a NG tube a better option? I wish I would have moved on this more recently but since there has not been any trouble with his breathing or lung function, we have not worried much about this. I see as we advance that this will need to be addressed sooner rather than later. I appreciate any ideas.
 

AUradar

New member
a NG tube is inserted through the nose into the stomach. I think its a short term solution. What you would be getting, I believe, is a Gastrostomy Tube (g-tube). Its surgacially inserted around the belly button. What you are going to see is a cap on your tummy

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cincinnatichildrens.org/health/info/abdomen/home/g-tube-care.htm">look here</a>

Your son will be self concisious (sp??) about it. Loose shirts cover it up very easily. My little girl has one (4 yr old) and you can only see it when she wears tight clothes. It will effect his rough housing, so I can imagine it would be rough on little boys. Swimming without a shirt will of course raise questions. However, his weight is going to greatly increase, as well as his overall nutrional intake and health. There is a certain amount of care required and it will seem overwhelming at first. But I honestly believe is the best thing we did for my little girl. Our friend's son (6) has one and they say the same thing. And he is a very active boy as well.

Another good thing is you no longer have to worry about how much he eats during the day. Just let him eat as a normal boy. You will use the feeding tube during the night and that will be where the majority of his calories come from.

The forumula can be expensive. Insurance doesn't cover it. If you are on some sort of government aid then you should get the forumla with that program.
 

AUradar

New member
a NG tube is inserted through the nose into the stomach. I think its a short term solution. What you would be getting, I believe, is a Gastrostomy Tube (g-tube). Its surgacially inserted around the belly button. What you are going to see is a cap on your tummy

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cincinnatichildrens.org/health/info/abdomen/home/g-tube-care.htm">look here</a>

Your son will be self concisious (sp??) about it. Loose shirts cover it up very easily. My little girl has one (4 yr old) and you can only see it when she wears tight clothes. It will effect his rough housing, so I can imagine it would be rough on little boys. Swimming without a shirt will of course raise questions. However, his weight is going to greatly increase, as well as his overall nutrional intake and health. There is a certain amount of care required and it will seem overwhelming at first. But I honestly believe is the best thing we did for my little girl. Our friend's son (6) has one and they say the same thing. And he is a very active boy as well.

Another good thing is you no longer have to worry about how much he eats during the day. Just let him eat as a normal boy. You will use the feeding tube during the night and that will be where the majority of his calories come from.

The forumula can be expensive. Insurance doesn't cover it. If you are on some sort of government aid then you should get the forumla with that program.
 

AUradar

New member
a NG tube is inserted through the nose into the stomach. I think its a short term solution. What you would be getting, I believe, is a Gastrostomy Tube (g-tube). Its surgacially inserted around the belly button. What you are going to see is a cap on your tummy

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cincinnatichildrens.org/health/info/abdomen/home/g-tube-care.htm">look here</a>

Your son will be self concisious (sp??) about it. Loose shirts cover it up very easily. My little girl has one (4 yr old) and you can only see it when she wears tight clothes. It will effect his rough housing, so I can imagine it would be rough on little boys. Swimming without a shirt will of course raise questions. However, his weight is going to greatly increase, as well as his overall nutrional intake and health. There is a certain amount of care required and it will seem overwhelming at first. But I honestly believe is the best thing we did for my little girl. Our friend's son (6) has one and they say the same thing. And he is a very active boy as well.

Another good thing is you no longer have to worry about how much he eats during the day. Just let him eat as a normal boy. You will use the feeding tube during the night and that will be where the majority of his calories come from.

The forumula can be expensive. Insurance doesn't cover it. If you are on some sort of government aid then you should get the forumla with that program.
 

AUradar

New member
a NG tube is inserted through the nose into the stomach. I think its a short term solution. What you would be getting, I believe, is a Gastrostomy Tube (g-tube). Its surgacially inserted around the belly button. What you are going to see is a cap on your tummy

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cincinnatichildrens.org/health/info/abdomen/home/g-tube-care.htm">look here</a>

Your son will be self concisious (sp??) about it. Loose shirts cover it up very easily. My little girl has one (4 yr old) and you can only see it when she wears tight clothes. It will effect his rough housing, so I can imagine it would be rough on little boys. Swimming without a shirt will of course raise questions. However, his weight is going to greatly increase, as well as his overall nutrional intake and health. There is a certain amount of care required and it will seem overwhelming at first. But I honestly believe is the best thing we did for my little girl. Our friend's son (6) has one and they say the same thing. And he is a very active boy as well.

Another good thing is you no longer have to worry about how much he eats during the day. Just let him eat as a normal boy. You will use the feeding tube during the night and that will be where the majority of his calories come from.

The forumula can be expensive. Insurance doesn't cover it. If you are on some sort of government aid then you should get the forumla with that program.
 

AUradar

New member
a NG tube is inserted through the nose into the stomach. I think its a short term solution. What you would be getting, I believe, is a Gastrostomy Tube (g-tube). Its surgacially inserted around the belly button. What you are going to see is a cap on your tummy

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cincinnatichildrens.org/health/info/abdomen/home/g-tube-care.htm">look here</a>

Your son will be self concisious (sp??) about it. Loose shirts cover it up very easily. My little girl has one (4 yr old) and you can only see it when she wears tight clothes. It will effect his rough housing, so I can imagine it would be rough on little boys. Swimming without a shirt will of course raise questions. However, his weight is going to greatly increase, as well as his overall nutrional intake and health. There is a certain amount of care required and it will seem overwhelming at first. But I honestly believe is the best thing we did for my little girl. Our friend's son (6) has one and they say the same thing. And he is a very active boy as well.

Another good thing is you no longer have to worry about how much he eats during the day. Just let him eat as a normal boy. You will use the feeding tube during the night and that will be where the majority of his calories come from.

The forumula can be expensive. Insurance doesn't cover it. If you are on some sort of government aid then you should get the forumla with that program.
 

AnnaH

New member
I've had a G Tube for most of my life. It definitly helps with weight gain, and other than right after the surgery does not hurt much.

My doctors didn't give me any limitations once the tube was healed, other than to not pull/twist it. I played contact hockey for a few years and didn't have a problem. I don't think it affects roughousing. For me, everyone knew I had one and just stayed away from that area.

It does show through tight clothes, but it's not huge, and most of the time it just looks like the cloth wrinkled funny. I've never had anyone notice.
You can also get lower profile buttons.

I'm not self consious about it, although that really depends on the kid and the family invloved. I can imagine that it would be harder to get it at 9- mine is just a part of me, and not a big deal.

The NGs are a short term thing, and can be really uncomfortable. Some clinics like to try them before commiting to a G tube. Depends on where you are. The problem with the G tube is that it does require surgery, and will leave a permanant scar.
 

AnnaH

New member
I've had a G Tube for most of my life. It definitly helps with weight gain, and other than right after the surgery does not hurt much.

My doctors didn't give me any limitations once the tube was healed, other than to not pull/twist it. I played contact hockey for a few years and didn't have a problem. I don't think it affects roughousing. For me, everyone knew I had one and just stayed away from that area.

It does show through tight clothes, but it's not huge, and most of the time it just looks like the cloth wrinkled funny. I've never had anyone notice.
You can also get lower profile buttons.

I'm not self consious about it, although that really depends on the kid and the family invloved. I can imagine that it would be harder to get it at 9- mine is just a part of me, and not a big deal.

The NGs are a short term thing, and can be really uncomfortable. Some clinics like to try them before commiting to a G tube. Depends on where you are. The problem with the G tube is that it does require surgery, and will leave a permanant scar.
 

AnnaH

New member
I've had a G Tube for most of my life. It definitly helps with weight gain, and other than right after the surgery does not hurt much.

My doctors didn't give me any limitations once the tube was healed, other than to not pull/twist it. I played contact hockey for a few years and didn't have a problem. I don't think it affects roughousing. For me, everyone knew I had one and just stayed away from that area.

It does show through tight clothes, but it's not huge, and most of the time it just looks like the cloth wrinkled funny. I've never had anyone notice.
You can also get lower profile buttons.

I'm not self consious about it, although that really depends on the kid and the family invloved. I can imagine that it would be harder to get it at 9- mine is just a part of me, and not a big deal.

The NGs are a short term thing, and can be really uncomfortable. Some clinics like to try them before commiting to a G tube. Depends on where you are. The problem with the G tube is that it does require surgery, and will leave a permanant scar.
 

AnnaH

New member
I've had a G Tube for most of my life. It definitly helps with weight gain, and other than right after the surgery does not hurt much.

My doctors didn't give me any limitations once the tube was healed, other than to not pull/twist it. I played contact hockey for a few years and didn't have a problem. I don't think it affects roughousing. For me, everyone knew I had one and just stayed away from that area.

It does show through tight clothes, but it's not huge, and most of the time it just looks like the cloth wrinkled funny. I've never had anyone notice.
You can also get lower profile buttons.

I'm not self consious about it, although that really depends on the kid and the family invloved. I can imagine that it would be harder to get it at 9- mine is just a part of me, and not a big deal.

The NGs are a short term thing, and can be really uncomfortable. Some clinics like to try them before commiting to a G tube. Depends on where you are. The problem with the G tube is that it does require surgery, and will leave a permanant scar.
 

AnnaH

New member
I've had a G Tube for most of my life. It definitly helps with weight gain, and other than right after the surgery does not hurt much.

My doctors didn't give me any limitations once the tube was healed, other than to not pull/twist it. I played contact hockey for a few years and didn't have a problem. I don't think it affects roughousing. For me, everyone knew I had one and just stayed away from that area.

It does show through tight clothes, but it's not huge, and most of the time it just looks like the cloth wrinkled funny. I've never had anyone notice.
You can also get lower profile buttons.

I'm not self consious about it, although that really depends on the kid and the family invloved. I can imagine that it would be harder to get it at 9- mine is just a part of me, and not a big deal.

The NGs are a short term thing, and can be really uncomfortable. Some clinics like to try them before commiting to a G tube. Depends on where you are. The problem with the G tube is that it does require surgery, and will leave a permanant scar.
 

izemmom

New member
First of all, Anna, THANK YOU for your post. I hope that Emily feels the way you do about her tube when she is older. I also hope she plays hockey, but that's another story.

I agree that the tube was the right thing to do. We are fortunate that Emily is young and we didn't have to deal with her being self-conscious. Most of the time, she doesn't even know the tube is there. She fiddles with it sometimes without realizing what she's doing, kind of like twirling your hair around your finger...the tube is just an extension of her. Probably h arder for a 9 year old to adjust, but I think you'll see improvements in his weight an d health overall. Plus, you can ease up on battling with him over eating issues.

Our insurance DOES cover most of the cost of the formula.
 

izemmom

New member
First of all, Anna, THANK YOU for your post. I hope that Emily feels the way you do about her tube when she is older. I also hope she plays hockey, but that's another story.

I agree that the tube was the right thing to do. We are fortunate that Emily is young and we didn't have to deal with her being self-conscious. Most of the time, she doesn't even know the tube is there. She fiddles with it sometimes without realizing what she's doing, kind of like twirling your hair around your finger...the tube is just an extension of her. Probably h arder for a 9 year old to adjust, but I think you'll see improvements in his weight an d health overall. Plus, you can ease up on battling with him over eating issues.

Our insurance DOES cover most of the cost of the formula.
 

izemmom

New member
First of all, Anna, THANK YOU for your post. I hope that Emily feels the way you do about her tube when she is older. I also hope she plays hockey, but that's another story.

I agree that the tube was the right thing to do. We are fortunate that Emily is young and we didn't have to deal with her being self-conscious. Most of the time, she doesn't even know the tube is there. She fiddles with it sometimes without realizing what she's doing, kind of like twirling your hair around your finger...the tube is just an extension of her. Probably h arder for a 9 year old to adjust, but I think you'll see improvements in his weight an d health overall. Plus, you can ease up on battling with him over eating issues.

Our insurance DOES cover most of the cost of the formula.
 

izemmom

New member
First of all, Anna, THANK YOU for your post. I hope that Emily feels the way you do about her tube when she is older. I also hope she plays hockey, but that's another story.

I agree that the tube was the right thing to do. We are fortunate that Emily is young and we didn't have to deal with her being self-conscious. Most of the time, she doesn't even know the tube is there. She fiddles with it sometimes without realizing what she's doing, kind of like twirling your hair around your finger...the tube is just an extension of her. Probably h arder for a 9 year old to adjust, but I think you'll see improvements in his weight an d health overall. Plus, you can ease up on battling with him over eating issues.

Our insurance DOES cover most of the cost of the formula.
 

izemmom

New member
First of all, Anna, THANK YOU for your post. I hope that Emily feels the way you do about her tube when she is older. I also hope she plays hockey, but that's another story.

I agree that the tube was the right thing to do. We are fortunate that Emily is young and we didn't have to deal with her being self-conscious. Most of the time, she doesn't even know the tube is there. She fiddles with it sometimes without realizing what she's doing, kind of like twirling your hair around your finger...the tube is just an extension of her. Probably h arder for a 9 year old to adjust, but I think you'll see improvements in his weight an d health overall. Plus, you can ease up on battling with him over eating issues.

Our insurance DOES cover most of the cost of the formula.
 
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