Different approaches to CF nutritional care

S

sdelorenzo

Guest
I have taken my kids to 3 cf clinics to get second opinions. It is easy to that different drs and different clinics view cf differently. Some are aggressive and strive to keep their patients healthy despite how hard it is to get there (g-tubes, medications, treatments, etc). While other clinics/doctors view cf as a progressive disease and there is not much you can do to prevent the damage and extend life expectancy. Besides they wouldn't want to upset anyone by asking them to get a g-tube, do pulmozyme, take more medications, etc. Unfortunately, the only cf clinic in our city has the laid back attitude. I had to ask for my daughter to get the g-tube tube last yr. It had never been mentioned to me, despite all of the yrs she struggled with her weight. Her g-tube has been the biggest blessing. Her weight is up from -5%bmi to 75%bmi.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf
 
S

sdelorenzo

Guest
I have taken my kids to 3 cf clinics to get second opinions. It is easy to that different drs and different clinics view cf differently. Some are aggressive and strive to keep their patients healthy despite how hard it is to get there (g-tubes, medications, treatments, etc). While other clinics/doctors view cf as a progressive disease and there is not much you can do to prevent the damage and extend life expectancy. Besides they wouldn't want to upset anyone by asking them to get a g-tube, do pulmozyme, take more medications, etc. Unfortunately, the only cf clinic in our city has the laid back attitude. I had to ask for my daughter to get the g-tube tube last yr. It had never been mentioned to me, despite all of the yrs she struggled with her weight. Her g-tube has been the biggest blessing. Her weight is up from -5%bmi to 75%bmi.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf
 
S

sdelorenzo

Guest
I have taken my kids to 3 cf clinics to get second opinions. It is easy to that different drs and different clinics view cf differently. Some are aggressive and strive to keep their patients healthy despite how hard it is to get there (g-tubes, medications, treatments, etc). While other clinics/doctors view cf as a progressive disease and there is not much you can do to prevent the damage and extend life expectancy. Besides they wouldn't want to upset anyone by asking them to get a g-tube, do pulmozyme, take more medications, etc. Unfortunately, the only cf clinic in our city has the laid back attitude. I had to ask for my daughter to get the g-tube tube last yr. It had never been mentioned to me, despite all of the yrs she struggled with her weight. Her g-tube has been the biggest blessing. Her weight is up from -5%bmi to 75%bmi.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf
 
S

sdelorenzo

Guest
I have taken my kids to 3 cf clinics to get second opinions. It is easy to that different drs and different clinics view cf differently. Some are aggressive and strive to keep their patients healthy despite how hard it is to get there (g-tubes, medications, treatments, etc). While other clinics/doctors view cf as a progressive disease and there is not much you can do to prevent the damage and extend life expectancy. Besides they wouldn't want to upset anyone by asking them to get a g-tube, do pulmozyme, take more medications, etc. Unfortunately, the only cf clinic in our city has the laid back attitude. I had to ask for my daughter to get the g-tube tube last yr. It had never been mentioned to me, despite all of the yrs she struggled with her weight. Her g-tube has been the biggest blessing. Her weight is up from -5%bmi to 75%bmi.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf
 
S

sdelorenzo

Guest
I have taken my kids to 3 cf clinics to get second opinions. It is easy to that different drs and different clinics view cf differently. Some are aggressive and strive to keep their patients healthy despite how hard it is to get there (g-tubes, medications, treatments, etc). While other clinics/doctors view cf as a progressive disease and there is not much you can do to prevent the damage and extend life expectancy. Besides they wouldn't want to upset anyone by asking them to get a g-tube, do pulmozyme, take more medications, etc. Unfortunately, the only cf clinic in our city has the laid back attitude. I had to ask for my daughter to get the g-tube tube last yr. It had never been mentioned to me, despite all of the yrs she struggled with her weight. Her g-tube has been the biggest blessing. Her weight is up from -5%bmi to 75%bmi.
<br />Sharon, mom of Sophia, 7 and Jack, 5 both with cf
 
M

Mommafirst

Guest
Terry -- my daughter is underweight, hovering with a BMI around 5% fluctuating about 2-3%, but consistent for well over 18 months. but she doesn't look like a sick child, she isn't pale or scrawny looking. She eats GREAT, better than my boys do. And she's been incredibly healthy.

I absolutely understand the long term benefits of the feeding tube -- but when I look at my very normal, healthy kid, who happens to have CF genes, I wonder if she needs a feeding tube. My son (without CF) is also a pretty little thing, hoovering in the 8-10% BMI range most of his 5 years of life.

Its such a hard decision to make and then to see that not all CF centers take the same approach gives me pause. But on the other hand, I do believe agressive early care can make a huge difference in long term success and I absolutely refuse to be sitting on the other end of this disease however many years from now, wondering if we did enough!! So we'll go through with the tube -- but it still makes me wonder why its okay for CFF accredited places to have such different approaches.
 
M

Mommafirst

Guest
Terry -- my daughter is underweight, hovering with a BMI around 5% fluctuating about 2-3%, but consistent for well over 18 months. but she doesn't look like a sick child, she isn't pale or scrawny looking. She eats GREAT, better than my boys do. And she's been incredibly healthy.

I absolutely understand the long term benefits of the feeding tube -- but when I look at my very normal, healthy kid, who happens to have CF genes, I wonder if she needs a feeding tube. My son (without CF) is also a pretty little thing, hoovering in the 8-10% BMI range most of his 5 years of life.

Its such a hard decision to make and then to see that not all CF centers take the same approach gives me pause. But on the other hand, I do believe agressive early care can make a huge difference in long term success and I absolutely refuse to be sitting on the other end of this disease however many years from now, wondering if we did enough!! So we'll go through with the tube -- but it still makes me wonder why its okay for CFF accredited places to have such different approaches.
 
M

Mommafirst

Guest
Terry -- my daughter is underweight, hovering with a BMI around 5% fluctuating about 2-3%, but consistent for well over 18 months. but she doesn't look like a sick child, she isn't pale or scrawny looking. She eats GREAT, better than my boys do. And she's been incredibly healthy.

I absolutely understand the long term benefits of the feeding tube -- but when I look at my very normal, healthy kid, who happens to have CF genes, I wonder if she needs a feeding tube. My son (without CF) is also a pretty little thing, hoovering in the 8-10% BMI range most of his 5 years of life.

Its such a hard decision to make and then to see that not all CF centers take the same approach gives me pause. But on the other hand, I do believe agressive early care can make a huge difference in long term success and I absolutely refuse to be sitting on the other end of this disease however many years from now, wondering if we did enough!! So we'll go through with the tube -- but it still makes me wonder why its okay for CFF accredited places to have such different approaches.
 
M

Mommafirst

Guest
Terry -- my daughter is underweight, hovering with a BMI around 5% fluctuating about 2-3%, but consistent for well over 18 months. but she doesn't look like a sick child, she isn't pale or scrawny looking. She eats GREAT, better than my boys do. And she's been incredibly healthy.

I absolutely understand the long term benefits of the feeding tube -- but when I look at my very normal, healthy kid, who happens to have CF genes, I wonder if she needs a feeding tube. My son (without CF) is also a pretty little thing, hoovering in the 8-10% BMI range most of his 5 years of life.

Its such a hard decision to make and then to see that not all CF centers take the same approach gives me pause. But on the other hand, I do believe agressive early care can make a huge difference in long term success and I absolutely refuse to be sitting on the other end of this disease however many years from now, wondering if we did enough!! So we'll go through with the tube -- but it still makes me wonder why its okay for CFF accredited places to have such different approaches.
 
M

Mommafirst

Guest
Terry -- my daughter is underweight, hovering with a BMI around 5% fluctuating about 2-3%, but consistent for well over 18 months. but she doesn't look like a sick child, she isn't pale or scrawny looking. She eats GREAT, better than my boys do. And she's been incredibly healthy.
<br />
<br />I absolutely understand the long term benefits of the feeding tube -- but when I look at my very normal, healthy kid, who happens to have CF genes, I wonder if she needs a feeding tube. My son (without CF) is also a pretty little thing, hoovering in the 8-10% BMI range most of his 5 years of life.
<br />
<br />Its such a hard decision to make and then to see that not all CF centers take the same approach gives me pause. But on the other hand, I do believe agressive early care can make a huge difference in long term success and I absolutely refuse to be sitting on the other end of this disease however many years from now, wondering if we did enough!! So we'll go through with the tube -- but it still makes me wonder why its okay for CFF accredited places to have such different approaches.
<br />
<br />
 
H

holmfamily1992

New member
That does confuse me also. You would think that all CF doctors would have the same approach. Hmmmm...I will definately question that when we see our doctor in November.

But like terry and others have said, its definately the long term benifits that it has that counts. Dylan was a small kid just like yours when he was her age and it wasnt till this past year did it really start to worry us because we saw his BMI changing and not for the better. Without proper nutrition he wont grow properly and wont be able to fight infection as well as some. We made the decision to do the tube because that was one less thing we had to worry about. It has been 6 days since Dylan's surgery and he is doing fantastic now. Almost all the pain is gone and we will probably start his feedings in a couple of days.

Trust me, I had the same concerns. It was keeping me awake at night, I wouldnt sleep, I would even dream about it. But after the surgery, when what was done was done, we feel alot better now. Yes it is definately life changing and if you let it control you it will. This was not an easy decision but we did it for him. I want him to grow normally and be as healthy as possible and if that encludes a feeding tube to help him, so be it.

You and her will be fine. Just keep remembering that this is a preventive step. Keep your chin up and hug her lots.

(((Hugs)))
Tina
 
H

holmfamily1992

New member
That does confuse me also. You would think that all CF doctors would have the same approach. Hmmmm...I will definately question that when we see our doctor in November.

But like terry and others have said, its definately the long term benifits that it has that counts. Dylan was a small kid just like yours when he was her age and it wasnt till this past year did it really start to worry us because we saw his BMI changing and not for the better. Without proper nutrition he wont grow properly and wont be able to fight infection as well as some. We made the decision to do the tube because that was one less thing we had to worry about. It has been 6 days since Dylan's surgery and he is doing fantastic now. Almost all the pain is gone and we will probably start his feedings in a couple of days.

Trust me, I had the same concerns. It was keeping me awake at night, I wouldnt sleep, I would even dream about it. But after the surgery, when what was done was done, we feel alot better now. Yes it is definately life changing and if you let it control you it will. This was not an easy decision but we did it for him. I want him to grow normally and be as healthy as possible and if that encludes a feeding tube to help him, so be it.

You and her will be fine. Just keep remembering that this is a preventive step. Keep your chin up and hug her lots.

(((Hugs)))
Tina
 
H

holmfamily1992

New member
That does confuse me also. You would think that all CF doctors would have the same approach. Hmmmm...I will definately question that when we see our doctor in November.

But like terry and others have said, its definately the long term benifits that it has that counts. Dylan was a small kid just like yours when he was her age and it wasnt till this past year did it really start to worry us because we saw his BMI changing and not for the better. Without proper nutrition he wont grow properly and wont be able to fight infection as well as some. We made the decision to do the tube because that was one less thing we had to worry about. It has been 6 days since Dylan's surgery and he is doing fantastic now. Almost all the pain is gone and we will probably start his feedings in a couple of days.

Trust me, I had the same concerns. It was keeping me awake at night, I wouldnt sleep, I would even dream about it. But after the surgery, when what was done was done, we feel alot better now. Yes it is definately life changing and if you let it control you it will. This was not an easy decision but we did it for him. I want him to grow normally and be as healthy as possible and if that encludes a feeding tube to help him, so be it.

You and her will be fine. Just keep remembering that this is a preventive step. Keep your chin up and hug her lots.

(((Hugs)))
Tina
 
H

holmfamily1992

New member
That does confuse me also. You would think that all CF doctors would have the same approach. Hmmmm...I will definately question that when we see our doctor in November.

But like terry and others have said, its definately the long term benifits that it has that counts. Dylan was a small kid just like yours when he was her age and it wasnt till this past year did it really start to worry us because we saw his BMI changing and not for the better. Without proper nutrition he wont grow properly and wont be able to fight infection as well as some. We made the decision to do the tube because that was one less thing we had to worry about. It has been 6 days since Dylan's surgery and he is doing fantastic now. Almost all the pain is gone and we will probably start his feedings in a couple of days.

Trust me, I had the same concerns. It was keeping me awake at night, I wouldnt sleep, I would even dream about it. But after the surgery, when what was done was done, we feel alot better now. Yes it is definately life changing and if you let it control you it will. This was not an easy decision but we did it for him. I want him to grow normally and be as healthy as possible and if that encludes a feeding tube to help him, so be it.

You and her will be fine. Just keep remembering that this is a preventive step. Keep your chin up and hug her lots.

(((Hugs)))
Tina
 
H

holmfamily1992

New member
That does confuse me also. You would think that all CF doctors would have the same approach. Hmmmm...I will definately question that when we see our doctor in November.
<br />
<br />But like terry and others have said, its definately the long term benifits that it has that counts. Dylan was a small kid just like yours when he was her age and it wasnt till this past year did it really start to worry us because we saw his BMI changing and not for the better. Without proper nutrition he wont grow properly and wont be able to fight infection as well as some. We made the decision to do the tube because that was one less thing we had to worry about. It has been 6 days since Dylan's surgery and he is doing fantastic now. Almost all the pain is gone and we will probably start his feedings in a couple of days.
<br />
<br />Trust me, I had the same concerns. It was keeping me awake at night, I wouldnt sleep, I would even dream about it. But after the surgery, when what was done was done, we feel alot better now. Yes it is definately life changing and if you let it control you it will. This was not an easy decision but we did it for him. I want him to grow normally and be as healthy as possible and if that encludes a feeding tube to help him, so be it.
<br />
<br />You and her will be fine. Just keep remembering that this is a preventive step. Keep your chin up and hug her lots.
<br />
<br />(((Hugs)))
<br />Tina
 
G

grassisgreener

New member
I wouldn't hesitate to get a g-tube if my child was unable to get near or above 50% BMI on their own.

Here is a link to a BMI calculator for children 36months and younger. I am wondering Heather if your daughters BMI is really only 5% or if that is her weight percentile? I know some people are naturally tall & thin, which would make for a low BMI but 5% would make me very nervous.

It is strange that CFF accredited centers can be run so differently.
 
G

grassisgreener

New member
I wouldn't hesitate to get a g-tube if my child was unable to get near or above 50% BMI on their own.

Here is a link to a BMI calculator for children 36months and younger. I am wondering Heather if your daughters BMI is really only 5% or if that is her weight percentile? I know some people are naturally tall & thin, which would make for a low BMI but 5% would make me very nervous.

It is strange that CFF accredited centers can be run so differently.
 
G

grassisgreener

New member
I wouldn't hesitate to get a g-tube if my child was unable to get near or above 50% BMI on their own.

Here is a link to a BMI calculator for children 36months and younger. I am wondering Heather if your daughters BMI is really only 5% or if that is her weight percentile? I know some people are naturally tall & thin, which would make for a low BMI but 5% would make me very nervous.

It is strange that CFF accredited centers can be run so differently.
 
G

grassisgreener

New member
I wouldn't hesitate to get a g-tube if my child was unable to get near or above 50% BMI on their own.

Here is a link to a BMI calculator for children 36months and younger. I am wondering Heather if your daughters BMI is really only 5% or if that is her weight percentile? I know some people are naturally tall & thin, which would make for a low BMI but 5% would make me very nervous.

It is strange that CFF accredited centers can be run so differently.
 
G

grassisgreener

New member
I wouldn't hesitate to get a g-tube if my child was unable to get near or above 50% BMI on their own.
<br />
<br />Here is a link to a BMI calculator for children 36months and younger. I am wondering Heather if your daughters BMI is really only 5% or if that is her weight percentile? I know some people are naturally tall & thin, which would make for a low BMI but 5% would make me very nervous.
<br />
<br />It is strange that CFF accredited centers can be run so differently.
 
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