Different approaches to CF nutritional care

M

Mommafirst

Guest
I have a friend whose CF son is exactly the same age as Alyssa. He is practically the same height and weight as Alyssa (a smidge bigger). His CF doctor/nutritionist are "not concerned" about his weight, while ours says Alyssa is in nutritional failure and have been encouraging us to get a g-tube fore quite some time (almost a year). Why such drastic difference in approaches?

Alyssa is scheduled for the tube surgery next week. I have very mixed feelings about this and worry all the time that we've made the wrong decision. She is doing really really well, besides being small. UGH -- knowing that not ALL CF centers would take this approach makes me question my decision even more.
 
M

Mommafirst

Guest
I have a friend whose CF son is exactly the same age as Alyssa. He is practically the same height and weight as Alyssa (a smidge bigger). His CF doctor/nutritionist are "not concerned" about his weight, while ours says Alyssa is in nutritional failure and have been encouraging us to get a g-tube fore quite some time (almost a year). Why such drastic difference in approaches?

Alyssa is scheduled for the tube surgery next week. I have very mixed feelings about this and worry all the time that we've made the wrong decision. She is doing really really well, besides being small. UGH -- knowing that not ALL CF centers would take this approach makes me question my decision even more.
 
M

Mommafirst

Guest
I have a friend whose CF son is exactly the same age as Alyssa. He is practically the same height and weight as Alyssa (a smidge bigger). His CF doctor/nutritionist are "not concerned" about his weight, while ours says Alyssa is in nutritional failure and have been encouraging us to get a g-tube fore quite some time (almost a year). Why such drastic difference in approaches?

Alyssa is scheduled for the tube surgery next week. I have very mixed feelings about this and worry all the time that we've made the wrong decision. She is doing really really well, besides being small. UGH -- knowing that not ALL CF centers would take this approach makes me question my decision even more.
 
M

Mommafirst

Guest
I have a friend whose CF son is exactly the same age as Alyssa. He is practically the same height and weight as Alyssa (a smidge bigger). His CF doctor/nutritionist are "not concerned" about his weight, while ours says Alyssa is in nutritional failure and have been encouraging us to get a g-tube fore quite some time (almost a year). Why such drastic difference in approaches?

Alyssa is scheduled for the tube surgery next week. I have very mixed feelings about this and worry all the time that we've made the wrong decision. She is doing really really well, besides being small. UGH -- knowing that not ALL CF centers would take this approach makes me question my decision even more.
 
M

Mommafirst

Guest
I have a friend whose CF son is exactly the same age as Alyssa. He is practically the same height and weight as Alyssa (a smidge bigger). His CF doctor/nutritionist are "not concerned" about his weight, while ours says Alyssa is in nutritional failure and have been encouraging us to get a g-tube fore quite some time (almost a year). Why such drastic difference in approaches?
<br />
<br />Alyssa is scheduled for the tube surgery next week. I have very mixed feelings about this and worry all the time that we've made the wrong decision. She is doing really really well, besides being small. UGH -- knowing that not ALL CF centers would take this approach makes me question my decision even more.
 
T

Terry

Guest
I am so glad Marissa has a G-Tube. It has made our lives soooooo much easier.

Do you think your daughter is underweight? Are you having trouble getting her to eat enough to put on weight?

It is very important for them to have some weight on them so their lungs can fight off infections when, not if, they are attacked. It's not so much about size as it is their ability to not get really sick from something they should be able to fight off.

Before Marissa's tube she was a puny little thing, no color, always sick, after she started putting on weight she started not being sick as often and had A LOT more energy. She will actually get over a cold faster than everyone else in the house now, compared to having it linger and having to be put on antibiotics before.

You can not pick her out of a crowd of children as the CF kid anymore. She even says she feels so much better. The stress of being made to sit at a table and eat on those times that she has absolutely no appetite are over. Food is no longer a punishment for her. In fact, I have noticed that since the tube has had her put on weight, she eats a lot more by moputh during the day. (Still not enough to do without the tube, we tried seeing how she would do, and believe it or not she lost weight in just a week). I wonder if maybe getting the tube didn't change her attitude towards food as well.

Maybe your doctor is just more on the ball than the other childs.

Good Luck,
Terry
 
T

Terry

Guest
I am so glad Marissa has a G-Tube. It has made our lives soooooo much easier.

Do you think your daughter is underweight? Are you having trouble getting her to eat enough to put on weight?

It is very important for them to have some weight on them so their lungs can fight off infections when, not if, they are attacked. It's not so much about size as it is their ability to not get really sick from something they should be able to fight off.

Before Marissa's tube she was a puny little thing, no color, always sick, after she started putting on weight she started not being sick as often and had A LOT more energy. She will actually get over a cold faster than everyone else in the house now, compared to having it linger and having to be put on antibiotics before.

You can not pick her out of a crowd of children as the CF kid anymore. She even says she feels so much better. The stress of being made to sit at a table and eat on those times that she has absolutely no appetite are over. Food is no longer a punishment for her. In fact, I have noticed that since the tube has had her put on weight, she eats a lot more by moputh during the day. (Still not enough to do without the tube, we tried seeing how she would do, and believe it or not she lost weight in just a week). I wonder if maybe getting the tube didn't change her attitude towards food as well.

Maybe your doctor is just more on the ball than the other childs.

Good Luck,
Terry
 
T

Terry

Guest
I am so glad Marissa has a G-Tube. It has made our lives soooooo much easier.

Do you think your daughter is underweight? Are you having trouble getting her to eat enough to put on weight?

It is very important for them to have some weight on them so their lungs can fight off infections when, not if, they are attacked. It's not so much about size as it is their ability to not get really sick from something they should be able to fight off.

Before Marissa's tube she was a puny little thing, no color, always sick, after she started putting on weight she started not being sick as often and had A LOT more energy. She will actually get over a cold faster than everyone else in the house now, compared to having it linger and having to be put on antibiotics before.

You can not pick her out of a crowd of children as the CF kid anymore. She even says she feels so much better. The stress of being made to sit at a table and eat on those times that she has absolutely no appetite are over. Food is no longer a punishment for her. In fact, I have noticed that since the tube has had her put on weight, she eats a lot more by moputh during the day. (Still not enough to do without the tube, we tried seeing how she would do, and believe it or not she lost weight in just a week). I wonder if maybe getting the tube didn't change her attitude towards food as well.

Maybe your doctor is just more on the ball than the other childs.

Good Luck,
Terry
 
T

Terry

Guest
I am so glad Marissa has a G-Tube. It has made our lives soooooo much easier.

Do you think your daughter is underweight? Are you having trouble getting her to eat enough to put on weight?

It is very important for them to have some weight on them so their lungs can fight off infections when, not if, they are attacked. It's not so much about size as it is their ability to not get really sick from something they should be able to fight off.

Before Marissa's tube she was a puny little thing, no color, always sick, after she started putting on weight she started not being sick as often and had A LOT more energy. She will actually get over a cold faster than everyone else in the house now, compared to having it linger and having to be put on antibiotics before.

You can not pick her out of a crowd of children as the CF kid anymore. She even says she feels so much better. The stress of being made to sit at a table and eat on those times that she has absolutely no appetite are over. Food is no longer a punishment for her. In fact, I have noticed that since the tube has had her put on weight, she eats a lot more by moputh during the day. (Still not enough to do without the tube, we tried seeing how she would do, and believe it or not she lost weight in just a week). I wonder if maybe getting the tube didn't change her attitude towards food as well.

Maybe your doctor is just more on the ball than the other childs.

Good Luck,
Terry
 
T

Terry

Guest
I am so glad Marissa has a G-Tube. It has made our lives soooooo much easier.
<br />
<br />Do you think your daughter is underweight? Are you having trouble getting her to eat enough to put on weight?
<br />
<br />It is very important for them to have some weight on them so their lungs can fight off infections when, not if, they are attacked. It's not so much about size as it is their ability to not get really sick from something they should be able to fight off.
<br />
<br />Before Marissa's tube she was a puny little thing, no color, always sick, after she started putting on weight she started not being sick as often and had A LOT more energy. She will actually get over a cold faster than everyone else in the house now, compared to having it linger and having to be put on antibiotics before.
<br />
<br />You can not pick her out of a crowd of children as the CF kid anymore. She even says she feels so much better. The stress of being made to sit at a table and eat on those times that she has absolutely no appetite are over. Food is no longer a punishment for her. In fact, I have noticed that since the tube has had her put on weight, she eats a lot more by moputh during the day. (Still not enough to do without the tube, we tried seeing how she would do, and believe it or not she lost weight in just a week). I wonder if maybe getting the tube didn't change her attitude towards food as well.
<br />
<br />Maybe your doctor is just more on the ball than the other childs.
<br />
<br />Good Luck,
<br />Terry
 
K

kitomd21

New member
I wonder what the other child's BMI is? Ellie's doctor doesn't care what her overall percentile is for weight compared to other children - it's more of concern regarding her percentile in relation to weight-to-length. He stresses the higher the BMI, the better. Ellie is 27% for weight but in relation to weight-to-length, she's only 11%....maybe his doc isn't differentiating between the two? Where does Alyssa stand in percentile?
 
K

kitomd21

New member
I wonder what the other child's BMI is? Ellie's doctor doesn't care what her overall percentile is for weight compared to other children - it's more of concern regarding her percentile in relation to weight-to-length. He stresses the higher the BMI, the better. Ellie is 27% for weight but in relation to weight-to-length, she's only 11%....maybe his doc isn't differentiating between the two? Where does Alyssa stand in percentile?
 
K

kitomd21

New member
I wonder what the other child's BMI is? Ellie's doctor doesn't care what her overall percentile is for weight compared to other children - it's more of concern regarding her percentile in relation to weight-to-length. He stresses the higher the BMI, the better. Ellie is 27% for weight but in relation to weight-to-length, she's only 11%....maybe his doc isn't differentiating between the two? Where does Alyssa stand in percentile?
 
K

kitomd21

New member
I wonder what the other child's BMI is? Ellie's doctor doesn't care what her overall percentile is for weight compared to other children - it's more of concern regarding her percentile in relation to weight-to-length. He stresses the higher the BMI, the better. Ellie is 27% for weight but in relation to weight-to-length, she's only 11%....maybe his doc isn't differentiating between the two? Where does Alyssa stand in percentile?
 
K

kitomd21

New member
I wonder what the other child's BMI is? Ellie's doctor doesn't care what her overall percentile is for weight compared to other children - it's more of concern regarding her percentile in relation to weight-to-length. He stresses the higher the BMI, the better. Ellie is 27% for weight but in relation to weight-to-length, she's only 11%....maybe his doc isn't differentiating between the two? Where does Alyssa stand in percentile?
 
R

Ratatosk

Administrator
Staff member
We've always managed to keep DS at about the 50th percentile, so not really nutritional failure. Our CF doctor's approach has been to mention concerns, changed enzymes and they way we give them to ds (split them up), offer encouragement -- just keep trying to find high calorie foods he likes. When he mentioned DS' needing to eat more, we asked how and he laughed and admitted he didn't have a clue. At lease he's honest.

Meanwhile the local doctor criticizes -- I blogged about an appointment where the doctor's notes were a thesarus for the underweight (slim, trim, slight...) Feel as if I'm paying $ just to get abuse!

I just wish the the local doctor wouldn't use appointments to berate us and offer some constructive criticism. Last time I said "set up an appointment with the dietician, we're at a loss as to what we can do about this". He indicated that if DS' vitamin levels, etc. were low, he would. Never heard from him again.
 
R

Ratatosk

Administrator
Staff member
We've always managed to keep DS at about the 50th percentile, so not really nutritional failure. Our CF doctor's approach has been to mention concerns, changed enzymes and they way we give them to ds (split them up), offer encouragement -- just keep trying to find high calorie foods he likes. When he mentioned DS' needing to eat more, we asked how and he laughed and admitted he didn't have a clue. At lease he's honest.

Meanwhile the local doctor criticizes -- I blogged about an appointment where the doctor's notes were a thesarus for the underweight (slim, trim, slight...) Feel as if I'm paying $ just to get abuse!

I just wish the the local doctor wouldn't use appointments to berate us and offer some constructive criticism. Last time I said "set up an appointment with the dietician, we're at a loss as to what we can do about this". He indicated that if DS' vitamin levels, etc. were low, he would. Never heard from him again.
 
R

Ratatosk

Administrator
Staff member
We've always managed to keep DS at about the 50th percentile, so not really nutritional failure. Our CF doctor's approach has been to mention concerns, changed enzymes and they way we give them to ds (split them up), offer encouragement -- just keep trying to find high calorie foods he likes. When he mentioned DS' needing to eat more, we asked how and he laughed and admitted he didn't have a clue. At lease he's honest.

Meanwhile the local doctor criticizes -- I blogged about an appointment where the doctor's notes were a thesarus for the underweight (slim, trim, slight...) Feel as if I'm paying $ just to get abuse!

I just wish the the local doctor wouldn't use appointments to berate us and offer some constructive criticism. Last time I said "set up an appointment with the dietician, we're at a loss as to what we can do about this". He indicated that if DS' vitamin levels, etc. were low, he would. Never heard from him again.
 
R

Ratatosk

Administrator
Staff member
We've always managed to keep DS at about the 50th percentile, so not really nutritional failure. Our CF doctor's approach has been to mention concerns, changed enzymes and they way we give them to ds (split them up), offer encouragement -- just keep trying to find high calorie foods he likes. When he mentioned DS' needing to eat more, we asked how and he laughed and admitted he didn't have a clue. At lease he's honest.

Meanwhile the local doctor criticizes -- I blogged about an appointment where the doctor's notes were a thesarus for the underweight (slim, trim, slight...) Feel as if I'm paying $ just to get abuse!

I just wish the the local doctor wouldn't use appointments to berate us and offer some constructive criticism. Last time I said "set up an appointment with the dietician, we're at a loss as to what we can do about this". He indicated that if DS' vitamin levels, etc. were low, he would. Never heard from him again.
 
R

Ratatosk

Administrator
Staff member
We've always managed to keep DS at about the 50th percentile, so not really nutritional failure. Our CF doctor's approach has been to mention concerns, changed enzymes and they way we give them to ds (split them up), offer encouragement -- just keep trying to find high calorie foods he likes. When he mentioned DS' needing to eat more, we asked how and he laughed and admitted he didn't have a clue. At lease he's honest.
<br />
<br />Meanwhile the local doctor criticizes -- I blogged about an appointment where the doctor's notes were a thesarus for the underweight (slim, trim, slight...) Feel as if I'm paying $ just to get abuse!
<br />
<br />I just wish the the local doctor wouldn't use appointments to berate us and offer some constructive criticism. Last time I said "set up an appointment with the dietician, we're at a loss as to what we can do about this". He indicated that if DS' vitamin levels, etc. were low, he would. Never heard from him again.
 
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