Different approaches to CF nutritional care

M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>grassisgreener</b></i>

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.</end quote></div>

No its really her BMI. Her BMI is like 13 something, which translates to below the 5th percentile. Her height is in the 23rd percentile for her age, and her weight is in the single digit percentiles for her age.
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>grassisgreener</b></i>

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.</end quote></div>

No its really her BMI. Her BMI is like 13 something, which translates to below the 5th percentile. Her height is in the 23rd percentile for her age, and her weight is in the single digit percentiles for her age.
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>grassisgreener</b></i>

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.</end quote></div>

No its really her BMI. Her BMI is like 13 something, which translates to below the 5th percentile. Her height is in the 23rd percentile for her age, and her weight is in the single digit percentiles for her age.
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>grassisgreener</b></i>

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.</end quote>

No its really her BMI. Her BMI is like 13 something, which translates to below the 5th percentile. Her height is in the 23rd percentile for her age, and her weight is in the single digit percentiles for her age.
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>grassisgreener</b></i>
<br />
<br />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 />
<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 />
<br />
<br />It is strange that CFF accredited centers can be run so differently.</end quote>
<br />
<br />No its really her BMI. Her BMI is like 13 something, which translates to below the 5th percentile. Her height is in the 23rd percentile for her age, and her weight is in the single digit percentiles for her age.
<br />
<br />
<br />
<br />
 
T

Terry

Guest
Heather -

I know this is all so hard. None of us want to have our kids put under anesthesia or have surgery of any kind.

I remember when my son had to have tubes put in his ears, I was so upset. He doesn't have CF, and this was before Marissa. Now I think about that and how fortunate we were that was all he was having trouble with, and how silly I was to fret over such a little thing.

In my opinion, if a child is having difficulty growing or maintaining an adequate BMI, the tube is a blessing. I think, again in my opinion, that the younger it is done, the better. It is easier to have a young child "accept" her second belly button (that is what Marissa calls it) when she is young, and before she has the "body image" issues.

So psychologially it is easier to accept, and there is that old saying "an ounce of prevention is worth a pound of cure."

Marissa didn't have so much trouble when she was your daughter's age ("Asthma attacks" only lung wise, and digestive issues that her peds would blow off). It was between three and four that her weight really began to be a problem, and she started having one infection after another.

Once this is all said and done you will be glad you did it.

One thing to look forward to, you know all that yucky liquid medicine that you put in her mouth, and she spits back out, and then you have no idea how much you actually got in her? That will be a thing of the past. We put any liquids she won't swallow in a syringe and push it through her G-Tube. The other children envy her and want their own Mickey Button.

Take Care,
Terry
 
T

Terry

Guest
Heather -

I know this is all so hard. None of us want to have our kids put under anesthesia or have surgery of any kind.

I remember when my son had to have tubes put in his ears, I was so upset. He doesn't have CF, and this was before Marissa. Now I think about that and how fortunate we were that was all he was having trouble with, and how silly I was to fret over such a little thing.

In my opinion, if a child is having difficulty growing or maintaining an adequate BMI, the tube is a blessing. I think, again in my opinion, that the younger it is done, the better. It is easier to have a young child "accept" her second belly button (that is what Marissa calls it) when she is young, and before she has the "body image" issues.

So psychologially it is easier to accept, and there is that old saying "an ounce of prevention is worth a pound of cure."

Marissa didn't have so much trouble when she was your daughter's age ("Asthma attacks" only lung wise, and digestive issues that her peds would blow off). It was between three and four that her weight really began to be a problem, and she started having one infection after another.

Once this is all said and done you will be glad you did it.

One thing to look forward to, you know all that yucky liquid medicine that you put in her mouth, and she spits back out, and then you have no idea how much you actually got in her? That will be a thing of the past. We put any liquids she won't swallow in a syringe and push it through her G-Tube. The other children envy her and want their own Mickey Button.

Take Care,
Terry
 
T

Terry

Guest
Heather -

I know this is all so hard. None of us want to have our kids put under anesthesia or have surgery of any kind.

I remember when my son had to have tubes put in his ears, I was so upset. He doesn't have CF, and this was before Marissa. Now I think about that and how fortunate we were that was all he was having trouble with, and how silly I was to fret over such a little thing.

In my opinion, if a child is having difficulty growing or maintaining an adequate BMI, the tube is a blessing. I think, again in my opinion, that the younger it is done, the better. It is easier to have a young child "accept" her second belly button (that is what Marissa calls it) when she is young, and before she has the "body image" issues.

So psychologially it is easier to accept, and there is that old saying "an ounce of prevention is worth a pound of cure."

Marissa didn't have so much trouble when she was your daughter's age ("Asthma attacks" only lung wise, and digestive issues that her peds would blow off). It was between three and four that her weight really began to be a problem, and she started having one infection after another.

Once this is all said and done you will be glad you did it.

One thing to look forward to, you know all that yucky liquid medicine that you put in her mouth, and she spits back out, and then you have no idea how much you actually got in her? That will be a thing of the past. We put any liquids she won't swallow in a syringe and push it through her G-Tube. The other children envy her and want their own Mickey Button.

Take Care,
Terry
 
T

Terry

Guest
Heather -

I know this is all so hard. None of us want to have our kids put under anesthesia or have surgery of any kind.

I remember when my son had to have tubes put in his ears, I was so upset. He doesn't have CF, and this was before Marissa. Now I think about that and how fortunate we were that was all he was having trouble with, and how silly I was to fret over such a little thing.

In my opinion, if a child is having difficulty growing or maintaining an adequate BMI, the tube is a blessing. I think, again in my opinion, that the younger it is done, the better. It is easier to have a young child "accept" her second belly button (that is what Marissa calls it) when she is young, and before she has the "body image" issues.

So psychologially it is easier to accept, and there is that old saying "an ounce of prevention is worth a pound of cure."

Marissa didn't have so much trouble when she was your daughter's age ("Asthma attacks" only lung wise, and digestive issues that her peds would blow off). It was between three and four that her weight really began to be a problem, and she started having one infection after another.

Once this is all said and done you will be glad you did it.

One thing to look forward to, you know all that yucky liquid medicine that you put in her mouth, and she spits back out, and then you have no idea how much you actually got in her? That will be a thing of the past. We put any liquids she won't swallow in a syringe and push it through her G-Tube. The other children envy her and want their own Mickey Button.

Take Care,
Terry
 
T

Terry

Guest
Heather -
<br />
<br />I know this is all so hard. None of us want to have our kids put under anesthesia or have surgery of any kind.
<br />
<br />I remember when my son had to have tubes put in his ears, I was so upset. He doesn't have CF, and this was before Marissa. Now I think about that and how fortunate we were that was all he was having trouble with, and how silly I was to fret over such a little thing.
<br />
<br />In my opinion, if a child is having difficulty growing or maintaining an adequate BMI, the tube is a blessing. I think, again in my opinion, that the younger it is done, the better. It is easier to have a young child "accept" her second belly button (that is what Marissa calls it) when she is young, and before she has the "body image" issues.
<br />
<br />So psychologially it is easier to accept, and there is that old saying "an ounce of prevention is worth a pound of cure."
<br />
<br />Marissa didn't have so much trouble when she was your daughter's age ("Asthma attacks" only lung wise, and digestive issues that her peds would blow off). It was between three and four that her weight really began to be a problem, and she started having one infection after another.
<br />
<br />Once this is all said and done you will be glad you did it.
<br />
<br />One thing to look forward to, you know all that yucky liquid medicine that you put in her mouth, and she spits back out, and then you have no idea how much you actually got in her? That will be a thing of the past. We put any liquids she won't swallow in a syringe and push it through her G-Tube. The other children envy her and want their own Mickey Button.
<br />
<br />Take Care,
<br />Terry
 
I

izemmom

New member
I wondered this too. I worried that our clinic, specifically our dietician (who is probably reading this...*waves*) were trying to improve thier "numbers." Since this whole "Cfer's do better when they are at or above the 50th percentile concept is relativley new, and, I beleive, is one of the standards by which clinics are measured, I was convinced that the g-tube was being pushed for reasons other than Emily's best interest.

I called two other clinics, who of course could tell me nothing about what they'd reccomend for Emily without actually seeing her and knowing her history. Both did tell me that they were reccommending g-tubes for more and more young patients every year, simply because patients did SO well with them. The best thing I got out of my calls to the other clnics, though, was the Nurse at one of the clinics who said, "YOU are in control of this decision. You do not have to do this until you are ready. This is, medically, the best option, but it is not life or death, and waitng six months until youy are sure will not hurt her." Now, after hearing that I felt like the pressure was off and I could think rationally, not emotionally. That's when I had the epiphny I've already described to you.

One more thing to consider, and, knowing me, I've told you this already, too. (I have no self-control when it comes to the length of my responses) I wondered why another CF'er who was treated AT our clinic, BY our pulmo and team, who was a month OLDER than Emily and weighed LESS was not being "pushed" in the direction of a tube. THe mom of the other kid and I had been corresponding via e-mail for some time, so I knew that we were definately being steered in that direction more forcefully than they were. So, I asked about it. Again, it was sort of an epiphianny moment. The pulmo asked if I taught every kid to read in exactly the same way. Of course not. They all need to learn to do it, but I use at least half a dozen different approaches. Their personality, the ability of the parent to support them at home, thier style of learnig, their innate ability level...it all factors in. I have to play around a bit to figure out what works, and some of it is just "gut feeling." Well, said the pulmo, PROACTIVE medicine, (as opposed to REactive medicine) is a lot like that. Her gut instinct was that the g-tube was best for Emily at this point in time.

Incidentally, 2 months after Em got her tube, the other little girl's family visited us at home so they could get an idea of how the tube and pump worked. They were getting theirs the next week. Both of the girls have had success with them.

I know that you know that I have no regrets about our decision. But, I also want you to know that I think the questioning you are doing is normal, and healthy. You are Alyssa's advocate. You are the one who will be doing the feedings. If you aren't ready, wait. You can reverse your decision to NOT get it right now, but you really can't reverse your decision to get it.

Good luck, and please call or PM if you need to. I'll be thinking of you.
 
I

izemmom

New member
I wondered this too. I worried that our clinic, specifically our dietician (who is probably reading this...*waves*) were trying to improve thier "numbers." Since this whole "Cfer's do better when they are at or above the 50th percentile concept is relativley new, and, I beleive, is one of the standards by which clinics are measured, I was convinced that the g-tube was being pushed for reasons other than Emily's best interest.

I called two other clinics, who of course could tell me nothing about what they'd reccomend for Emily without actually seeing her and knowing her history. Both did tell me that they were reccommending g-tubes for more and more young patients every year, simply because patients did SO well with them. The best thing I got out of my calls to the other clnics, though, was the Nurse at one of the clinics who said, "YOU are in control of this decision. You do not have to do this until you are ready. This is, medically, the best option, but it is not life or death, and waitng six months until youy are sure will not hurt her." Now, after hearing that I felt like the pressure was off and I could think rationally, not emotionally. That's when I had the epiphny I've already described to you.

One more thing to consider, and, knowing me, I've told you this already, too. (I have no self-control when it comes to the length of my responses) I wondered why another CF'er who was treated AT our clinic, BY our pulmo and team, who was a month OLDER than Emily and weighed LESS was not being "pushed" in the direction of a tube. THe mom of the other kid and I had been corresponding via e-mail for some time, so I knew that we were definately being steered in that direction more forcefully than they were. So, I asked about it. Again, it was sort of an epiphianny moment. The pulmo asked if I taught every kid to read in exactly the same way. Of course not. They all need to learn to do it, but I use at least half a dozen different approaches. Their personality, the ability of the parent to support them at home, thier style of learnig, their innate ability level...it all factors in. I have to play around a bit to figure out what works, and some of it is just "gut feeling." Well, said the pulmo, PROACTIVE medicine, (as opposed to REactive medicine) is a lot like that. Her gut instinct was that the g-tube was best for Emily at this point in time.

Incidentally, 2 months after Em got her tube, the other little girl's family visited us at home so they could get an idea of how the tube and pump worked. They were getting theirs the next week. Both of the girls have had success with them.

I know that you know that I have no regrets about our decision. But, I also want you to know that I think the questioning you are doing is normal, and healthy. You are Alyssa's advocate. You are the one who will be doing the feedings. If you aren't ready, wait. You can reverse your decision to NOT get it right now, but you really can't reverse your decision to get it.

Good luck, and please call or PM if you need to. I'll be thinking of you.
 
I

izemmom

New member
I wondered this too. I worried that our clinic, specifically our dietician (who is probably reading this...*waves*) were trying to improve thier "numbers." Since this whole "Cfer's do better when they are at or above the 50th percentile concept is relativley new, and, I beleive, is one of the standards by which clinics are measured, I was convinced that the g-tube was being pushed for reasons other than Emily's best interest.

I called two other clinics, who of course could tell me nothing about what they'd reccomend for Emily without actually seeing her and knowing her history. Both did tell me that they were reccommending g-tubes for more and more young patients every year, simply because patients did SO well with them. The best thing I got out of my calls to the other clnics, though, was the Nurse at one of the clinics who said, "YOU are in control of this decision. You do not have to do this until you are ready. This is, medically, the best option, but it is not life or death, and waitng six months until youy are sure will not hurt her." Now, after hearing that I felt like the pressure was off and I could think rationally, not emotionally. That's when I had the epiphny I've already described to you.

One more thing to consider, and, knowing me, I've told you this already, too. (I have no self-control when it comes to the length of my responses) I wondered why another CF'er who was treated AT our clinic, BY our pulmo and team, who was a month OLDER than Emily and weighed LESS was not being "pushed" in the direction of a tube. THe mom of the other kid and I had been corresponding via e-mail for some time, so I knew that we were definately being steered in that direction more forcefully than they were. So, I asked about it. Again, it was sort of an epiphianny moment. The pulmo asked if I taught every kid to read in exactly the same way. Of course not. They all need to learn to do it, but I use at least half a dozen different approaches. Their personality, the ability of the parent to support them at home, thier style of learnig, their innate ability level...it all factors in. I have to play around a bit to figure out what works, and some of it is just "gut feeling." Well, said the pulmo, PROACTIVE medicine, (as opposed to REactive medicine) is a lot like that. Her gut instinct was that the g-tube was best for Emily at this point in time.

Incidentally, 2 months after Em got her tube, the other little girl's family visited us at home so they could get an idea of how the tube and pump worked. They were getting theirs the next week. Both of the girls have had success with them.

I know that you know that I have no regrets about our decision. But, I also want you to know that I think the questioning you are doing is normal, and healthy. You are Alyssa's advocate. You are the one who will be doing the feedings. If you aren't ready, wait. You can reverse your decision to NOT get it right now, but you really can't reverse your decision to get it.

Good luck, and please call or PM if you need to. I'll be thinking of you.
 
I

izemmom

New member
I wondered this too. I worried that our clinic, specifically our dietician (who is probably reading this...*waves*) were trying to improve thier "numbers." Since this whole "Cfer's do better when they are at or above the 50th percentile concept is relativley new, and, I beleive, is one of the standards by which clinics are measured, I was convinced that the g-tube was being pushed for reasons other than Emily's best interest.

I called two other clinics, who of course could tell me nothing about what they'd reccomend for Emily without actually seeing her and knowing her history. Both did tell me that they were reccommending g-tubes for more and more young patients every year, simply because patients did SO well with them. The best thing I got out of my calls to the other clnics, though, was the Nurse at one of the clinics who said, "YOU are in control of this decision. You do not have to do this until you are ready. This is, medically, the best option, but it is not life or death, and waitng six months until youy are sure will not hurt her." Now, after hearing that I felt like the pressure was off and I could think rationally, not emotionally. That's when I had the epiphny I've already described to you.

One more thing to consider, and, knowing me, I've told you this already, too. (I have no self-control when it comes to the length of my responses) I wondered why another CF'er who was treated AT our clinic, BY our pulmo and team, who was a month OLDER than Emily and weighed LESS was not being "pushed" in the direction of a tube. THe mom of the other kid and I had been corresponding via e-mail for some time, so I knew that we were definately being steered in that direction more forcefully than they were. So, I asked about it. Again, it was sort of an epiphianny moment. The pulmo asked if I taught every kid to read in exactly the same way. Of course not. They all need to learn to do it, but I use at least half a dozen different approaches. Their personality, the ability of the parent to support them at home, thier style of learnig, their innate ability level...it all factors in. I have to play around a bit to figure out what works, and some of it is just "gut feeling." Well, said the pulmo, PROACTIVE medicine, (as opposed to REactive medicine) is a lot like that. Her gut instinct was that the g-tube was best for Emily at this point in time.

Incidentally, 2 months after Em got her tube, the other little girl's family visited us at home so they could get an idea of how the tube and pump worked. They were getting theirs the next week. Both of the girls have had success with them.

I know that you know that I have no regrets about our decision. But, I also want you to know that I think the questioning you are doing is normal, and healthy. You are Alyssa's advocate. You are the one who will be doing the feedings. If you aren't ready, wait. You can reverse your decision to NOT get it right now, but you really can't reverse your decision to get it.

Good luck, and please call or PM if you need to. I'll be thinking of you.
 
I

izemmom

New member
I wondered this too. I worried that our clinic, specifically our dietician (who is probably reading this...*waves*) were trying to improve thier "numbers." Since this whole "Cfer's do better when they are at or above the 50th percentile concept is relativley new, and, I beleive, is one of the standards by which clinics are measured, I was convinced that the g-tube was being pushed for reasons other than Emily's best interest.
<br />
<br />I called two other clinics, who of course could tell me nothing about what they'd reccomend for Emily without actually seeing her and knowing her history. Both did tell me that they were reccommending g-tubes for more and more young patients every year, simply because patients did SO well with them. The best thing I got out of my calls to the other clnics, though, was the Nurse at one of the clinics who said, "YOU are in control of this decision. You do not have to do this until you are ready. This is, medically, the best option, but it is not life or death, and waitng six months until youy are sure will not hurt her." Now, after hearing that I felt like the pressure was off and I could think rationally, not emotionally. That's when I had the epiphny I've already described to you.
<br />
<br />One more thing to consider, and, knowing me, I've told you this already, too. (I have no self-control when it comes to the length of my responses) I wondered why another CF'er who was treated AT our clinic, BY our pulmo and team, who was a month OLDER than Emily and weighed LESS was not being "pushed" in the direction of a tube. THe mom of the other kid and I had been corresponding via e-mail for some time, so I knew that we were definately being steered in that direction more forcefully than they were. So, I asked about it. Again, it was sort of an epiphianny moment. The pulmo asked if I taught every kid to read in exactly the same way. Of course not. They all need to learn to do it, but I use at least half a dozen different approaches. Their personality, the ability of the parent to support them at home, thier style of learnig, their innate ability level...it all factors in. I have to play around a bit to figure out what works, and some of it is just "gut feeling." Well, said the pulmo, PROACTIVE medicine, (as opposed to REactive medicine) is a lot like that. Her gut instinct was that the g-tube was best for Emily at this point in time.
<br />
<br />Incidentally, 2 months after Em got her tube, the other little girl's family visited us at home so they could get an idea of how the tube and pump worked. They were getting theirs the next week. Both of the girls have had success with them.
<br />
<br />I know that you know that I have no regrets about our decision. But, I also want you to know that I think the questioning you are doing is normal, and healthy. You are Alyssa's advocate. You are the one who will be doing the feedings. If you aren't ready, wait. You can reverse your decision to NOT get it right now, but you really can't reverse your decision to get it.
<br />
<br />Good luck, and please call or PM if you need to. I'll be thinking of you.
 
S

sullihs

New member
According to our docs, the definition of nutritional failure has changed over the last year or two. When our son was diagnosed almost 3 years ago, nutritional failure was any patient with a BMI under the 25%ile. Now they consider nutritional failure a BMI under the 50%ile. They told me they changed it because of the correlation between BMI and lung function. Maybe one of the docs is looking at one definition and maybe one is looking at the other???? Just a thought.
 
S

sullihs

New member
According to our docs, the definition of nutritional failure has changed over the last year or two. When our son was diagnosed almost 3 years ago, nutritional failure was any patient with a BMI under the 25%ile. Now they consider nutritional failure a BMI under the 50%ile. They told me they changed it because of the correlation between BMI and lung function. Maybe one of the docs is looking at one definition and maybe one is looking at the other???? Just a thought.
 
S

sullihs

New member
According to our docs, the definition of nutritional failure has changed over the last year or two. When our son was diagnosed almost 3 years ago, nutritional failure was any patient with a BMI under the 25%ile. Now they consider nutritional failure a BMI under the 50%ile. They told me they changed it because of the correlation between BMI and lung function. Maybe one of the docs is looking at one definition and maybe one is looking at the other???? Just a thought.
 
S

sullihs

New member
According to our docs, the definition of nutritional failure has changed over the last year or two. When our son was diagnosed almost 3 years ago, nutritional failure was any patient with a BMI under the 25%ile. Now they consider nutritional failure a BMI under the 50%ile. They told me they changed it because of the correlation between BMI and lung function. Maybe one of the docs is looking at one definition and maybe one is looking at the other???? Just a thought.
 
S

sullihs

New member
According to our docs, the definition of nutritional failure has changed over the last year or two. When our son was diagnosed almost 3 years ago, nutritional failure was any patient with a BMI under the 25%ile. Now they consider nutritional failure a BMI under the 50%ile. They told me they changed it because of the correlation between BMI and lung function. Maybe one of the docs is looking at one definition and maybe one is looking at the other???? Just a thought.
 
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