How to get your CF Child to gain Weight

3

3coolsons

New member
Hello Everyone,
It has been a while since I have posted but I knew where to come with this problem. I have twin (thirteen year old boys) that really need to gain some weight. Jordan only weighs 58 pounds and has been in the hospital twice this month with bactrial infections. We had feeding tubes about four years ago and it was a real nightmare....our drs are pushing the feeding tube again and I really do not want to go down that road again...unless its our last option. I almost feel like it is our last option but want to try everything else first. Jordan doesnt want to eat anything...if its not McDonalds chicken nuggets or mac and cheese he will hardly touch it. How do we get him to eat and to eat more? Meal times have become such a struggle. The docs said to start taking things away from them if they do not eat. And i am so stressed about all of this. We are really struggling and any advice would be greatly appreciated.
 
3

3coolsons

New member
Hello Everyone,
It has been a while since I have posted but I knew where to come with this problem. I have twin (thirteen year old boys) that really need to gain some weight. Jordan only weighs 58 pounds and has been in the hospital twice this month with bactrial infections. We had feeding tubes about four years ago and it was a real nightmare....our drs are pushing the feeding tube again and I really do not want to go down that road again...unless its our last option. I almost feel like it is our last option but want to try everything else first. Jordan doesnt want to eat anything...if its not McDonalds chicken nuggets or mac and cheese he will hardly touch it. How do we get him to eat and to eat more? Meal times have become such a struggle. The docs said to start taking things away from them if they do not eat. And i am so stressed about all of this. We are really struggling and any advice would be greatly appreciated.
 
3

3coolsons

New member
Hello Everyone,
<br />It has been a while since I have posted but I knew where to come with this problem. I have twin (thirteen year old boys) that really need to gain some weight. Jordan only weighs 58 pounds and has been in the hospital twice this month with bactrial infections. We had feeding tubes about four years ago and it was a real nightmare....our drs are pushing the feeding tube again and I really do not want to go down that road again...unless its our last option. I almost feel like it is our last option but want to try everything else first. Jordan doesnt want to eat anything...if its not McDonalds chicken nuggets or mac and cheese he will hardly touch it. How do we get him to eat and to eat more? Meal times have become such a struggle. The docs said to start taking things away from them if they do not eat. And i am so stressed about all of this. We are really struggling and any advice would be greatly appreciated.
 
M

Mommafirst

Guest
Taking things away from a teenager because they won't eat??? No offense to your doctor, but it doesn't sound like he knows anything about how teenagers work at all.

I'm not an expert, my kids aren't even teens yet, but I know that kids, CF or not, are always seeking more and more independence. There are things you can force them to do and there are things you can't. You can't MAKE a kid eat. You just can't, its not within anyone's control but their own. Its the reason that us CF parents get soooo stressed over getting them to eat -- because we can't do it for them.

I'm not sure than any of my advice is new to you, but I'll throw it out there just in case. . . What does your son want?? I mean he's old enough to have a say in this. Does he want to eat? If not, why? Does he prefer the idea of the feeding tube? What would he be willing to do to avoid getting the tube? What types of foods would he like to have in order to entice him. At 13 and just a few years from totally taking over his own CF care entirely, I think you'd want to encourage his participation here. If you listen to your doctor and make it a struggle (eat this or I'll take away a video game) he will just rebel and it'll be a disaster. But if you allow him to participate and "buy into" the solutions you decide on, he's much more likely to have a vested interested in doing what he needs to do.

I wish you luck. I don't look forward to the teen years.
 
M

Mommafirst

Guest
Taking things away from a teenager because they won't eat??? No offense to your doctor, but it doesn't sound like he knows anything about how teenagers work at all.

I'm not an expert, my kids aren't even teens yet, but I know that kids, CF or not, are always seeking more and more independence. There are things you can force them to do and there are things you can't. You can't MAKE a kid eat. You just can't, its not within anyone's control but their own. Its the reason that us CF parents get soooo stressed over getting them to eat -- because we can't do it for them.

I'm not sure than any of my advice is new to you, but I'll throw it out there just in case. . . What does your son want?? I mean he's old enough to have a say in this. Does he want to eat? If not, why? Does he prefer the idea of the feeding tube? What would he be willing to do to avoid getting the tube? What types of foods would he like to have in order to entice him. At 13 and just a few years from totally taking over his own CF care entirely, I think you'd want to encourage his participation here. If you listen to your doctor and make it a struggle (eat this or I'll take away a video game) he will just rebel and it'll be a disaster. But if you allow him to participate and "buy into" the solutions you decide on, he's much more likely to have a vested interested in doing what he needs to do.

I wish you luck. I don't look forward to the teen years.
 
M

Mommafirst

Guest
Taking things away from a teenager because they won't eat??? No offense to your doctor, but it doesn't sound like he knows anything about how teenagers work at all.
<br />
<br />I'm not an expert, my kids aren't even teens yet, but I know that kids, CF or not, are always seeking more and more independence. There are things you can force them to do and there are things you can't. You can't MAKE a kid eat. You just can't, its not within anyone's control but their own. Its the reason that us CF parents get soooo stressed over getting them to eat -- because we can't do it for them.
<br />
<br />I'm not sure than any of my advice is new to you, but I'll throw it out there just in case. . . What does your son want?? I mean he's old enough to have a say in this. Does he want to eat? If not, why? Does he prefer the idea of the feeding tube? What would he be willing to do to avoid getting the tube? What types of foods would he like to have in order to entice him. At 13 and just a few years from totally taking over his own CF care entirely, I think you'd want to encourage his participation here. If you listen to your doctor and make it a struggle (eat this or I'll take away a video game) he will just rebel and it'll be a disaster. But if you allow him to participate and "buy into" the solutions you decide on, he's much more likely to have a vested interested in doing what he needs to do.
<br />
<br />I wish you luck. I don't look forward to the teen years.
 
M

mag6125

New member
Is it a lack of appetite issue? Because if it is there are appetite stimulants that can be prescribed, that might be something to try before going to the extreme of a feeding tube.
 
M

mag6125

New member
Is it a lack of appetite issue? Because if it is there are appetite stimulants that can be prescribed, that might be something to try before going to the extreme of a feeding tube.
 
M

mag6125

New member
Is it a lack of appetite issue? Because if it is there are appetite stimulants that can be prescribed, that might be something to try before going to the extreme of a feeding tube.
 
3

3coolsons

New member
Thanks so much for the comments. Im not sure if he is just not eating because he has that control or if he just doesnt want it. He has had several digestive test this month and they could not find any logical reason for him not eating. We are on periactin (sp??) an appetite stimulant right now. It has helped some but nothing major. The boys had the gtube for six weeks and were due to get the micki button and the tube came out on its on before we could get it because the nut case doctor we had kept putting the appt off. It is such a long story. We changed doctors since the nightmare and I feel the dr we have now would be much better. Does any of your children have the feeding tube now and what kind of progress have you seen from it? Does anyone have any great recipes we could try? Thanks
 
3

3coolsons

New member
Thanks so much for the comments. Im not sure if he is just not eating because he has that control or if he just doesnt want it. He has had several digestive test this month and they could not find any logical reason for him not eating. We are on periactin (sp??) an appetite stimulant right now. It has helped some but nothing major. The boys had the gtube for six weeks and were due to get the micki button and the tube came out on its on before we could get it because the nut case doctor we had kept putting the appt off. It is such a long story. We changed doctors since the nightmare and I feel the dr we have now would be much better. Does any of your children have the feeding tube now and what kind of progress have you seen from it? Does anyone have any great recipes we could try? Thanks
 
3

3coolsons

New member
Thanks so much for the comments. Im not sure if he is just not eating because he has that control or if he just doesnt want it. He has had several digestive test this month and they could not find any logical reason for him not eating. We are on periactin (sp??) an appetite stimulant right now. It has helped some but nothing major. The boys had the gtube for six weeks and were due to get the micki button and the tube came out on its on before we could get it because the nut case doctor we had kept putting the appt off. It is such a long story. We changed doctors since the nightmare and I feel the dr we have now would be much better. Does any of your children have the feeding tube now and what kind of progress have you seen from it? Does anyone have any great recipes we could try? Thanks
 
C

crickit715

New member
my daughter has a gtube (mickey button)....the first 6 weeks were definatley hard. but she went from below the 5th percentile to steadily above the 90th and has maintained for over 2 years now. the gtube has been a lifesaver for us!! it has kept her out of the hospital also, because i could "force hydrate" her when she was sick and she didnt get dehydrated. ..... my daughter loves pepperoni diced up in her mac n cheese with a little bit of ranch dressing drizzled on top. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

crickit715

New member
my daughter has a gtube (mickey button)....the first 6 weeks were definatley hard. but she went from below the 5th percentile to steadily above the 90th and has maintained for over 2 years now. the gtube has been a lifesaver for us!! it has kept her out of the hospital also, because i could "force hydrate" her when she was sick and she didnt get dehydrated. ..... my daughter loves pepperoni diced up in her mac n cheese with a little bit of ranch dressing drizzled on top. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

crickit715

New member
my daughter has a gtube (mickey button)....the first 6 weeks were definatley hard. but she went from below the 5th percentile to steadily above the 90th and has maintained for over 2 years now. the gtube has been a lifesaver for us!! it has kept her out of the hospital also, because i could "force hydrate" her when she was sick and she didnt get dehydrated. ..... my daughter loves pepperoni diced up in her mac n cheese with a little bit of ranch dressing drizzled on top. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
3

3coolsons

New member
Thanks so much. We have to go back to the clinic in two months and I guess we will make a decision then. I am just trying to research as much as possible. I want to do what's best for him and that just may be the feeding tube again.
 
3

3coolsons

New member
Thanks so much. We have to go back to the clinic in two months and I guess we will make a decision then. I am just trying to research as much as possible. I want to do what's best for him and that just may be the feeding tube again.
 
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