weight gain concerns

tammykrumrey · Feb 18, 2009

Okay, I am on a roll! Here is my problem...

Now that Kayla has Cepacia, we can no longer attend CF clinic on 'normal' CF days...not a problem, I completely understand. But here is the issue-on Fridays when we go to clinic, we only see our CF dr and the nurse. No PT, no dietician, no anyone else. It's kind of like they forgot us.

Don't get me wrong-I love the girls CF dr! He is, in my opinion, one of the best there is. But sometimes I wonder if some details get missed that would be looked over with others on the CF team-had they actually been there to talk with us.

For instance-Hannah has slowly been dropping on the scale for her weight. In April of 08 (almost one year ago) she weighed 59 pounds putting her at right below the 50%. She dropped down to 57 pounds in November 08, putting her at the 25%. Two weeks ago when we attended clinic she weighed 58 pounds, putting her at the 18%!!

For reference, we have been seen on non CF clinic days since the November 08 appt.

So, when do I start to get concerned? I mentioned this to the CF nurse yesterday when I called about the girls needing to be put on antibiotics and she didn't sound overly concerned with it b/c Hannah's obviously fighting an infection of some sort. Our regular CF nurse is on maternity leave and this nurse doesn't really know Kayla and Hannah as well. They are also short-handed with the other nurse out.

So, anyways...any suggestions as to when should I get concerned? Or should I just keep stuffing the kid as much as I can<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Feb 18, 2009

Okay, I am on a roll! Here is my problem...

Now that Kayla has Cepacia, we can no longer attend CF clinic on 'normal' CF days...not a problem, I completely understand. But here is the issue-on Fridays when we go to clinic, we only see our CF dr and the nurse. No PT, no dietician, no anyone else. It's kind of like they forgot us.

Don't get me wrong-I love the girls CF dr! He is, in my opinion, one of the best there is. But sometimes I wonder if some details get missed that would be looked over with others on the CF team-had they actually been there to talk with us.

For instance-Hannah has slowly been dropping on the scale for her weight. In April of 08 (almost one year ago) she weighed 59 pounds putting her at right below the 50%. She dropped down to 57 pounds in November 08, putting her at the 25%. Two weeks ago when we attended clinic she weighed 58 pounds, putting her at the 18%!!

For reference, we have been seen on non CF clinic days since the November 08 appt.

So, when do I start to get concerned? I mentioned this to the CF nurse yesterday when I called about the girls needing to be put on antibiotics and she didn't sound overly concerned with it b/c Hannah's obviously fighting an infection of some sort. Our regular CF nurse is on maternity leave and this nurse doesn't really know Kayla and Hannah as well. They are also short-handed with the other nurse out.

So, anyways...any suggestions as to when should I get concerned? Or should I just keep stuffing the kid as much as I can<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Feb 18, 2009

Okay, I am on a roll! Here is my problem...

Now that Kayla has Cepacia, we can no longer attend CF clinic on 'normal' CF days...not a problem, I completely understand. But here is the issue-on Fridays when we go to clinic, we only see our CF dr and the nurse. No PT, no dietician, no anyone else. It's kind of like they forgot us.

Don't get me wrong-I love the girls CF dr! He is, in my opinion, one of the best there is. But sometimes I wonder if some details get missed that would be looked over with others on the CF team-had they actually been there to talk with us.

For instance-Hannah has slowly been dropping on the scale for her weight. In April of 08 (almost one year ago) she weighed 59 pounds putting her at right below the 50%. She dropped down to 57 pounds in November 08, putting her at the 25%. Two weeks ago when we attended clinic she weighed 58 pounds, putting her at the 18%!!

For reference, we have been seen on non CF clinic days since the November 08 appt.

So, when do I start to get concerned? I mentioned this to the CF nurse yesterday when I called about the girls needing to be put on antibiotics and she didn't sound overly concerned with it b/c Hannah's obviously fighting an infection of some sort. Our regular CF nurse is on maternity leave and this nurse doesn't really know Kayla and Hannah as well. They are also short-handed with the other nurse out.

So, anyways...any suggestions as to when should I get concerned? Or should I just keep stuffing the kid as much as I can<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Feb 18, 2009

Okay, I am on a roll! Here is my problem...

Now that Kayla has Cepacia, we can no longer attend CF clinic on 'normal' CF days...not a problem, I completely understand. But here is the issue-on Fridays when we go to clinic, we only see our CF dr and the nurse. No PT, no dietician, no anyone else. It's kind of like they forgot us.

Don't get me wrong-I love the girls CF dr! He is, in my opinion, one of the best there is. But sometimes I wonder if some details get missed that would be looked over with others on the CF team-had they actually been there to talk with us.

For instance-Hannah has slowly been dropping on the scale for her weight. In April of 08 (almost one year ago) she weighed 59 pounds putting her at right below the 50%. She dropped down to 57 pounds in November 08, putting her at the 25%. Two weeks ago when we attended clinic she weighed 58 pounds, putting her at the 18%!!

For reference, we have been seen on non CF clinic days since the November 08 appt.

So, when do I start to get concerned? I mentioned this to the CF nurse yesterday when I called about the girls needing to be put on antibiotics and she didn't sound overly concerned with it b/c Hannah's obviously fighting an infection of some sort. Our regular CF nurse is on maternity leave and this nurse doesn't really know Kayla and Hannah as well. They are also short-handed with the other nurse out.

So, anyways...any suggestions as to when should I get concerned? Or should I just keep stuffing the kid as much as I can<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Feb 18, 2009

Okay, I am on a roll! Here is my problem...
 
 Now that Kayla has Cepacia, we can no longer attend CF clinic on 'normal' CF days...not a problem, I completely understand. But here is the issue-on Fridays when we go to clinic, we only see our CF dr and the nurse. No PT, no dietician, no anyone else. It's kind of like they forgot us.
 
 Don't get me wrong-I love the girls CF dr! He is, in my opinion, one of the best there is. But sometimes I wonder if some details get missed that would be looked over with others on the CF team-had they actually been there to talk with us.
 
 For instance-Hannah has slowly been dropping on the scale for her weight. In April of 08 (almost one year ago) she weighed 59 pounds putting her at right below the 50%. She dropped down to 57 pounds in November 08, putting her at the 25%. Two weeks ago when we attended clinic she weighed 58 pounds, putting her at the 18%!!
 
 For reference, we have been seen on non CF clinic days since the November 08 appt.
 
 So, when do I start to get concerned? I mentioned this to the CF nurse yesterday when I called about the girls needing to be put on antibiotics and she didn't sound overly concerned with it b/c Hannah's obviously fighting an infection of some sort. Our regular CF nurse is on maternity leave and this nurse doesn't really know Kayla and Hannah as well. They are also short-handed with the other nurse out.
 
 So, anyways...any suggestions as to when should I get concerned? Or should I just keep stuffing the kid as much as I can<img src="i/expressions/face-icon-small-smile.gif" border="0">

mschumacher · Feb 18, 2009

Cody has struggled with weight his entire life. Now, at 13, he has just reached 69 pounds, and is now not even on the scales for his age, which stinks. But, he has never ever been above the 15th percentile for his age, and that is WITH a feeding tube since 1-1/2 yrs, and a nasogastric tube for the first six months.

I would definitely express your concerns with her doctor, as he is the best source. But, call the CF dietician yourself and talk with him/her about your concerns, also. It could definitely be that, to some extent, they have forgotten about you--not on purpose, as that would NEVER happen, if they are like Cody's team, but sometimes things can fall through the cracks when they have so many to watch over. If they don't know about it, they may think she is doing great and doesn't need to be seen by them.

Weight loss/lack of weight gain relative to age is definitely a sign that something isn't as it should be, BUT, that said, is her height still going up and staying on the same general area of the growth chart? If so, that is good, as she may have hit an age when her body wants to put its nutrition towards getting taller, but dropping on the growth chart significantly for weight is a tough one. The less weight they have on their body, the more prone they are to not being able to fight off infections.

I would still encourage her to eat, and eat and eat, of course, but it seems like the more we push them to eat, the more they refuse to, as it is the one thing in their life that they actually have control over--what goes into their mouth!

So, Hannah is still cepacia-free? Have they tested her lately? Often, weight loss and/or a "failure to thrive" is often indicative that the body is really fighting something, as you said. The nurses are often so busy that they struggle just to keep up with the day-to-day, let alone trying to figure out what to do with our CFers when they aren't familiar with them. Some don't work with CF enough to realize how important it is that if a parent is concerned, it needs to be addressed--sooner rather than later, and immediately if possible! We know our kids and know if things aren't quite "right."

Good luck and keep us posted!

mschumacher · Feb 18, 2009

Cody has struggled with weight his entire life. Now, at 13, he has just reached 69 pounds, and is now not even on the scales for his age, which stinks. But, he has never ever been above the 15th percentile for his age, and that is WITH a feeding tube since 1-1/2 yrs, and a nasogastric tube for the first six months.

I would definitely express your concerns with her doctor, as he is the best source. But, call the CF dietician yourself and talk with him/her about your concerns, also. It could definitely be that, to some extent, they have forgotten about you--not on purpose, as that would NEVER happen, if they are like Cody's team, but sometimes things can fall through the cracks when they have so many to watch over. If they don't know about it, they may think she is doing great and doesn't need to be seen by them.

Weight loss/lack of weight gain relative to age is definitely a sign that something isn't as it should be, BUT, that said, is her height still going up and staying on the same general area of the growth chart? If so, that is good, as she may have hit an age when her body wants to put its nutrition towards getting taller, but dropping on the growth chart significantly for weight is a tough one. The less weight they have on their body, the more prone they are to not being able to fight off infections.

I would still encourage her to eat, and eat and eat, of course, but it seems like the more we push them to eat, the more they refuse to, as it is the one thing in their life that they actually have control over--what goes into their mouth!

So, Hannah is still cepacia-free? Have they tested her lately? Often, weight loss and/or a "failure to thrive" is often indicative that the body is really fighting something, as you said. The nurses are often so busy that they struggle just to keep up with the day-to-day, let alone trying to figure out what to do with our CFers when they aren't familiar with them. Some don't work with CF enough to realize how important it is that if a parent is concerned, it needs to be addressed--sooner rather than later, and immediately if possible! We know our kids and know if things aren't quite "right."

Good luck and keep us posted!

mschumacher · Feb 18, 2009

Cody has struggled with weight his entire life. Now, at 13, he has just reached 69 pounds, and is now not even on the scales for his age, which stinks. But, he has never ever been above the 15th percentile for his age, and that is WITH a feeding tube since 1-1/2 yrs, and a nasogastric tube for the first six months.

I would definitely express your concerns with her doctor, as he is the best source. But, call the CF dietician yourself and talk with him/her about your concerns, also. It could definitely be that, to some extent, they have forgotten about you--not on purpose, as that would NEVER happen, if they are like Cody's team, but sometimes things can fall through the cracks when they have so many to watch over. If they don't know about it, they may think she is doing great and doesn't need to be seen by them.

Weight loss/lack of weight gain relative to age is definitely a sign that something isn't as it should be, BUT, that said, is her height still going up and staying on the same general area of the growth chart? If so, that is good, as she may have hit an age when her body wants to put its nutrition towards getting taller, but dropping on the growth chart significantly for weight is a tough one. The less weight they have on their body, the more prone they are to not being able to fight off infections.

I would still encourage her to eat, and eat and eat, of course, but it seems like the more we push them to eat, the more they refuse to, as it is the one thing in their life that they actually have control over--what goes into their mouth!

So, Hannah is still cepacia-free? Have they tested her lately? Often, weight loss and/or a "failure to thrive" is often indicative that the body is really fighting something, as you said. The nurses are often so busy that they struggle just to keep up with the day-to-day, let alone trying to figure out what to do with our CFers when they aren't familiar with them. Some don't work with CF enough to realize how important it is that if a parent is concerned, it needs to be addressed--sooner rather than later, and immediately if possible! We know our kids and know if things aren't quite "right."

Good luck and keep us posted!

mschumacher · Feb 18, 2009

Cody has struggled with weight his entire life. Now, at 13, he has just reached 69 pounds, and is now not even on the scales for his age, which stinks. But, he has never ever been above the 15th percentile for his age, and that is WITH a feeding tube since 1-1/2 yrs, and a nasogastric tube for the first six months.

I would definitely express your concerns with her doctor, as he is the best source. But, call the CF dietician yourself and talk with him/her about your concerns, also. It could definitely be that, to some extent, they have forgotten about you--not on purpose, as that would NEVER happen, if they are like Cody's team, but sometimes things can fall through the cracks when they have so many to watch over. If they don't know about it, they may think she is doing great and doesn't need to be seen by them.

Weight loss/lack of weight gain relative to age is definitely a sign that something isn't as it should be, BUT, that said, is her height still going up and staying on the same general area of the growth chart? If so, that is good, as she may have hit an age when her body wants to put its nutrition towards getting taller, but dropping on the growth chart significantly for weight is a tough one. The less weight they have on their body, the more prone they are to not being able to fight off infections.

I would still encourage her to eat, and eat and eat, of course, but it seems like the more we push them to eat, the more they refuse to, as it is the one thing in their life that they actually have control over--what goes into their mouth!

So, Hannah is still cepacia-free? Have they tested her lately? Often, weight loss and/or a "failure to thrive" is often indicative that the body is really fighting something, as you said. The nurses are often so busy that they struggle just to keep up with the day-to-day, let alone trying to figure out what to do with our CFers when they aren't familiar with them. Some don't work with CF enough to realize how important it is that if a parent is concerned, it needs to be addressed--sooner rather than later, and immediately if possible! We know our kids and know if things aren't quite "right."

Good luck and keep us posted!

mschumacher · Feb 18, 2009

Cody has struggled with weight his entire life. Now, at 13, he has just reached 69 pounds, and is now not even on the scales for his age, which stinks. But, he has never ever been above the 15th percentile for his age, and that is WITH a feeding tube since 1-1/2 yrs, and a nasogastric tube for the first six months.
 
 I would definitely express your concerns with her doctor, as he is the best source. But, call the CF dietician yourself and talk with him/her about your concerns, also. It could definitely be that, to some extent, they have forgotten about you--not on purpose, as that would NEVER happen, if they are like Cody's team, but sometimes things can fall through the cracks when they have so many to watch over. If they don't know about it, they may think she is doing great and doesn't need to be seen by them.
 
 Weight loss/lack of weight gain relative to age is definitely a sign that something isn't as it should be, BUT, that said, is her height still going up and staying on the same general area of the growth chart? If so, that is good, as she may have hit an age when her body wants to put its nutrition towards getting taller, but dropping on the growth chart significantly for weight is a tough one. The less weight they have on their body, the more prone they are to not being able to fight off infections.
 
 I would still encourage her to eat, and eat and eat, of course, but it seems like the more we push them to eat, the more they refuse to, as it is the one thing in their life that they actually have control over--what goes into their mouth!
 
 So, Hannah is still cepacia-free? Have they tested her lately? Often, weight loss and/or a "failure to thrive" is often indicative that the body is really fighting something, as you said. The nurses are often so busy that they struggle just to keep up with the day-to-day, let alone trying to figure out what to do with our CFers when they aren't familiar with them. Some don't work with CF enough to realize how important it is that if a parent is concerned, it needs to be addressed--sooner rather than later, and immediately if possible! We know our kids and know if things aren't quite "right."
 
 Good luck and keep us posted!

tammykrumrey · Feb 18, 2009

Is she Cepacia free? Throat cultures two weeks ago indicate that she has not started to culture it. BUT, she does not produce sputum and most definately doesn't give a good sputum sample. So, I take the results with a grain of salt! I cannot say for certain that she does not have it.

As for height, she is still pretty short for her age. She is below the 25%, but could be worst.

Thanks for your input Michelle! I look forwarding to seeing more from you<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Feb 18, 2009

Is she Cepacia free? Throat cultures two weeks ago indicate that she has not started to culture it. BUT, she does not produce sputum and most definately doesn't give a good sputum sample. So, I take the results with a grain of salt! I cannot say for certain that she does not have it.

As for height, she is still pretty short for her age. She is below the 25%, but could be worst.

Thanks for your input Michelle! I look forwarding to seeing more from you<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Feb 18, 2009

Is she Cepacia free? Throat cultures two weeks ago indicate that she has not started to culture it. BUT, she does not produce sputum and most definately doesn't give a good sputum sample. So, I take the results with a grain of salt! I cannot say for certain that she does not have it.

As for height, she is still pretty short for her age. She is below the 25%, but could be worst.

Thanks for your input Michelle! I look forwarding to seeing more from you<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Feb 18, 2009

Is she Cepacia free? Throat cultures two weeks ago indicate that she has not started to culture it. BUT, she does not produce sputum and most definately doesn't give a good sputum sample. So, I take the results with a grain of salt! I cannot say for certain that she does not have it.

As for height, she is still pretty short for her age. She is below the 25%, but could be worst.

Thanks for your input Michelle! I look forwarding to seeing more from you<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Feb 18, 2009

Is she Cepacia free? Throat cultures two weeks ago indicate that she has not started to culture it. BUT, she does not produce sputum and most definately doesn't give a good sputum sample. So, I take the results with a grain of salt! I cannot say for certain that she does not have it.
 
 As for height, she is still pretty short for her age. She is below the 25%, but could be worst.
 
 Thanks for your input Michelle! I look forwarding to seeing more from you<img src="i/expressions/face-icon-small-smile.gif" border="0">

mschumacher · Feb 18, 2009

LOVE the line about not giving a good sputum sample. I think Cody COULD--I mean, what boy at 13 doesn't know how to "hock a loogie"--but he just doesn't. We just had to do a sputum culture, collecting a "first morning" sample. Well, the kid just does not have anything in the morning to cough up, and they wanted it BEFORE getting any medications inhaled. Yeah, right--we tried, several mornings, but gave up and finally just did his nebulizer and vest, and finally got one. His coughing time is after school, and activities, when he's been moving around more. Oh well--one of these days, his ability to hock it up and spit will be something he'll wear with pride! LOL

mschumacher · Feb 18, 2009

LOVE the line about not giving a good sputum sample. I think Cody COULD--I mean, what boy at 13 doesn't know how to "hock a loogie"--but he just doesn't. We just had to do a sputum culture, collecting a "first morning" sample. Well, the kid just does not have anything in the morning to cough up, and they wanted it BEFORE getting any medications inhaled. Yeah, right--we tried, several mornings, but gave up and finally just did his nebulizer and vest, and finally got one. His coughing time is after school, and activities, when he's been moving around more. Oh well--one of these days, his ability to hock it up and spit will be something he'll wear with pride! LOL

mschumacher · Feb 18, 2009

LOVE the line about not giving a good sputum sample. I think Cody COULD--I mean, what boy at 13 doesn't know how to "hock a loogie"--but he just doesn't. We just had to do a sputum culture, collecting a "first morning" sample. Well, the kid just does not have anything in the morning to cough up, and they wanted it BEFORE getting any medications inhaled. Yeah, right--we tried, several mornings, but gave up and finally just did his nebulizer and vest, and finally got one. His coughing time is after school, and activities, when he's been moving around more. Oh well--one of these days, his ability to hock it up and spit will be something he'll wear with pride! LOL

mschumacher · Feb 18, 2009

LOVE the line about not giving a good sputum sample. I think Cody COULD--I mean, what boy at 13 doesn't know how to "hock a loogie"--but he just doesn't. We just had to do a sputum culture, collecting a "first morning" sample. Well, the kid just does not have anything in the morning to cough up, and they wanted it BEFORE getting any medications inhaled. Yeah, right--we tried, several mornings, but gave up and finally just did his nebulizer and vest, and finally got one. His coughing time is after school, and activities, when he's been moving around more. Oh well--one of these days, his ability to hock it up and spit will be something he'll wear with pride! LOL

mschumacher · Feb 18, 2009

LOVE the line about not giving a good sputum sample. I think Cody COULD--I mean, what boy at 13 doesn't know how to "hock a loogie"--but he just doesn't. We just had to do a sputum culture, collecting a "first morning" sample. Well, the kid just does not have anything in the morning to cough up, and they wanted it BEFORE getting any medications inhaled. Yeah, right--we tried, several mornings, but gave up and finally just did his nebulizer and vest, and finally got one. His coughing time is after school, and activities, when he's been moving around more. Oh well--one of these days, his ability to hock it up and spit will be something he'll wear with pride! LOL

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