Always second guessing when to call

[Mommafirst]

I do this every single time Alyssa starts coughing. Is it an exacerbation vs. is it something that will go away on its own. CF center says call after 5 days or so of coughing so they can put her on oral antibiotics. But what if the cough isn't that major for many days? I heard her cough a few times (deep junky cough, just not frequent) over a week ago. But then my husband took the kids to his visit his family, while I stayed home to work. Since I wasn't with her, I can't be sure if the cough got worse, stopped or stayed the same. My husband said she only coughed when she was crying or had been running around. Now that they are back she's got a good junky cough, but still its not a frequent kind of cough -- maybe she coughs a dozen times all day??

Do you struggle to identify an exacerbation? I have a really good list of things to look for from the center and they have developed an exacerbation scale that I've been helping with and yet I STILL struggle to know when to call.

I hate hate hate the idea of sticking her on 21 days of antibiotics for something that will clear on its own, but I also hate the idea of waiting and risking her numbers of staph to grow larger and potentially damage her lungs. Someone share how YOU decide.

 

[Mommafirst]

I do this every single time Alyssa starts coughing. Is it an exacerbation vs. is it something that will go away on its own. CF center says call after 5 days or so of coughing so they can put her on oral antibiotics. But what if the cough isn't that major for many days? I heard her cough a few times (deep junky cough, just not frequent) over a week ago. But then my husband took the kids to his visit his family, while I stayed home to work. Since I wasn't with her, I can't be sure if the cough got worse, stopped or stayed the same. My husband said she only coughed when she was crying or had been running around. Now that they are back she's got a good junky cough, but still its not a frequent kind of cough -- maybe she coughs a dozen times all day??

Do you struggle to identify an exacerbation? I have a really good list of things to look for from the center and they have developed an exacerbation scale that I've been helping with and yet I STILL struggle to know when to call.

I hate hate hate the idea of sticking her on 21 days of antibiotics for something that will clear on its own, but I also hate the idea of waiting and risking her numbers of staph to grow larger and potentially damage her lungs. Someone share how YOU decide.

 

[Mommafirst]

I do this every single time Alyssa starts coughing. Is it an exacerbation vs. is it something that will go away on its own. CF center says call after 5 days or so of coughing so they can put her on oral antibiotics. But what if the cough isn't that major for many days? I heard her cough a few times (deep junky cough, just not frequent) over a week ago. But then my husband took the kids to his visit his family, while I stayed home to work. Since I wasn't with her, I can't be sure if the cough got worse, stopped or stayed the same. My husband said she only coughed when she was crying or had been running around. Now that they are back she's got a good junky cough, but still its not a frequent kind of cough -- maybe she coughs a dozen times all day??

Do you struggle to identify an exacerbation? I have a really good list of things to look for from the center and they have developed an exacerbation scale that I've been helping with and yet I STILL struggle to know when to call.

I hate hate hate the idea of sticking her on 21 days of antibiotics for something that will clear on its own, but I also hate the idea of waiting and risking her numbers of staph to grow larger and potentially damage her lungs. Someone share how YOU decide.

 

[Mommafirst]

I do this every single time Alyssa starts coughing. Is it an exacerbation vs. is it something that will go away on its own. CF center says call after 5 days or so of coughing so they can put her on oral antibiotics. But what if the cough isn't that major for many days? I heard her cough a few times (deep junky cough, just not frequent) over a week ago. But then my husband took the kids to his visit his family, while I stayed home to work. Since I wasn't with her, I can't be sure if the cough got worse, stopped or stayed the same. My husband said she only coughed when she was crying or had been running around. Now that they are back she's got a good junky cough, but still its not a frequent kind of cough -- maybe she coughs a dozen times all day??

Do you struggle to identify an exacerbation? I have a really good list of things to look for from the center and they have developed an exacerbation scale that I've been helping with and yet I STILL struggle to know when to call.

I hate hate hate the idea of sticking her on 21 days of antibiotics for something that will clear on its own, but I also hate the idea of waiting and risking her numbers of staph to grow larger and potentially damage her lungs. Someone share how YOU decide.

 

[Mommafirst]

I do this every single time Alyssa starts coughing. Is it an exacerbation vs. is it something that will go away on its own. CF center says call after 5 days or so of coughing so they can put her on oral antibiotics. But what if the cough isn't that major for many days? I heard her cough a few times (deep junky cough, just not frequent) over a week ago. But then my husband took the kids to his visit his family, while I stayed home to work. Since I wasn't with her, I can't be sure if the cough got worse, stopped or stayed the same. My husband said she only coughed when she was crying or had been running around. Now that they are back she's got a good junky cough, but still its not a frequent kind of cough -- maybe she coughs a dozen times all day??
<br />
<br />Do you struggle to identify an exacerbation? I have a really good list of things to look for from the center and they have developed an exacerbation scale that I've been helping with and yet I STILL struggle to know when to call.
<br />
<br />I hate hate hate the idea of sticking her on 21 days of antibiotics for something that will clear on its own, but I also hate the idea of waiting and risking her numbers of staph to grow larger and potentially damage her lungs. Someone share how YOU decide.

 

[Rebjane]

Heather,

I do the same thing. Have you tried doing an extra neb and Vest to see if that helps?

I may call and say what you posted and ask if you could have a sputum culture done, before throwing her on antibiotics. Once I had Maggie cultured at our local pediatricians and they couriered her sample to the hospital lab where she has her CF care(that way you know they handle the culture correctly) That time she was actually culturing something new, H.flu..So , the antibiotic was different than what she takes for her CF exacerbation.

I feel like we are detectives trying to figure out the cough, is it allergies, a cold, an exacerbation, etc. It's not easy.

Is her energy and behavior good?

 

[Rebjane]

Heather,

I do the same thing. Have you tried doing an extra neb and Vest to see if that helps?

I may call and say what you posted and ask if you could have a sputum culture done, before throwing her on antibiotics. Once I had Maggie cultured at our local pediatricians and they couriered her sample to the hospital lab where she has her CF care(that way you know they handle the culture correctly) That time she was actually culturing something new, H.flu..So , the antibiotic was different than what she takes for her CF exacerbation.

I feel like we are detectives trying to figure out the cough, is it allergies, a cold, an exacerbation, etc. It's not easy.

Is her energy and behavior good?

 

[Rebjane]

Heather,

I do the same thing. Have you tried doing an extra neb and Vest to see if that helps?

I may call and say what you posted and ask if you could have a sputum culture done, before throwing her on antibiotics. Once I had Maggie cultured at our local pediatricians and they couriered her sample to the hospital lab where she has her CF care(that way you know they handle the culture correctly) That time she was actually culturing something new, H.flu..So , the antibiotic was different than what she takes for her CF exacerbation.

I feel like we are detectives trying to figure out the cough, is it allergies, a cold, an exacerbation, etc. It's not easy.

Is her energy and behavior good?

 

[Rebjane]

Heather,

I do the same thing. Have you tried doing an extra neb and Vest to see if that helps?

I may call and say what you posted and ask if you could have a sputum culture done, before throwing her on antibiotics. Once I had Maggie cultured at our local pediatricians and they couriered her sample to the hospital lab where she has her CF care(that way you know they handle the culture correctly) That time she was actually culturing something new, H.flu..So , the antibiotic was different than what she takes for her CF exacerbation.

I feel like we are detectives trying to figure out the cough, is it allergies, a cold, an exacerbation, etc. It's not easy.

Is her energy and behavior good?

 

[Rebjane]

Heather,
<br />
<br />I do the same thing. Have you tried doing an extra neb and Vest to see if that helps?
<br />
<br />I may call and say what you posted and ask if you could have a sputum culture done, before throwing her on antibiotics. Once I had Maggie cultured at our local pediatricians and they couriered her sample to the hospital lab where she has her CF care(that way you know they handle the culture correctly) That time she was actually culturing something new, H.flu..So , the antibiotic was different than what she takes for her CF exacerbation.
<br />
<br />I feel like we are detectives trying to figure out the cough, is it allergies, a cold, an exacerbation, etc. It's not easy.
<br />
<br />Is her energy and behavior good?

 

[ashmomo]

Has it been a while since her last clinic visit? If so, I would have them do a culture, otherwise they prob have one they could work off from.

I do the same thing all the time! It is SO hard to know when to call and when to let it take its course.

Hope she feels better soon <img src="i/expressions/face-icon-small-blush.gif" border="0">)

 

[ashmomo]

Has it been a while since her last clinic visit? If so, I would have them do a culture, otherwise they prob have one they could work off from.

I do the same thing all the time! It is SO hard to know when to call and when to let it take its course.

Hope she feels better soon <img src="i/expressions/face-icon-small-blush.gif" border="0">)

 

[ashmomo]

Has it been a while since her last clinic visit? If so, I would have them do a culture, otherwise they prob have one they could work off from.

I do the same thing all the time! It is SO hard to know when to call and when to let it take its course.

Hope she feels better soon <img src="i/expressions/face-icon-small-blush.gif" border="0">)

 

[ashmomo]

Has it been a while since her last clinic visit? If so, I would have them do a culture, otherwise they prob have one they could work off from.

I do the same thing all the time! It is SO hard to know when to call and when to let it take its course.

Hope she feels better soon <img src="i/expressions/face-icon-small-blush.gif" border="0">)

 

[ashmomo]

Has it been a while since her last clinic visit? If so, I would have them do a culture, otherwise they prob have one they could work off from.
<br />
<br />I do the same thing all the time! It is SO hard to know when to call and when to let it take its course.
<br />
<br />Hope she feels better soon <img src="i/expressions/face-icon-small-blush.gif" border="0">)

 

[Ratatosk]

I've struggled with this as well. In DS case he usually is a little off at first -- breathing faster at rest, not eating as much and then a rare, deeper, bronchial kind of cough -- then nothing for severa hours if not a day... In fact the last time they put him on something he was at the doctor's for a regular CF appointment and he let out just one cough.

Our doctor constantly tells us to KNOW DS' cough -- isn't postnasal, from exertion or being upset... DS rarely coughs, so it usually means he does need something, but I too play the waiting game, increase treatments, etc.

 

[Ratatosk]

I've struggled with this as well. In DS case he usually is a little off at first -- breathing faster at rest, not eating as much and then a rare, deeper, bronchial kind of cough -- then nothing for severa hours if not a day... In fact the last time they put him on something he was at the doctor's for a regular CF appointment and he let out just one cough.

Our doctor constantly tells us to KNOW DS' cough -- isn't postnasal, from exertion or being upset... DS rarely coughs, so it usually means he does need something, but I too play the waiting game, increase treatments, etc.

 

[Ratatosk]

I've struggled with this as well. In DS case he usually is a little off at first -- breathing faster at rest, not eating as much and then a rare, deeper, bronchial kind of cough -- then nothing for severa hours if not a day... In fact the last time they put him on something he was at the doctor's for a regular CF appointment and he let out just one cough.

Our doctor constantly tells us to KNOW DS' cough -- isn't postnasal, from exertion or being upset... DS rarely coughs, so it usually means he does need something, but I too play the waiting game, increase treatments, etc.

 

[Ratatosk]

I've struggled with this as well. In DS case he usually is a little off at first -- breathing faster at rest, not eating as much and then a rare, deeper, bronchial kind of cough -- then nothing for severa hours if not a day... In fact the last time they put him on something he was at the doctor's for a regular CF appointment and he let out just one cough.

Our doctor constantly tells us to KNOW DS' cough -- isn't postnasal, from exertion or being upset... DS rarely coughs, so it usually means he does need something, but I too play the waiting game, increase treatments, etc.

 

[Ratatosk]

I've struggled with this as well. In DS case he usually is a little off at first -- breathing faster at rest, not eating as much and then a rare, deeper, bronchial kind of cough -- then nothing for severa hours if not a day... In fact the last time they put him on something he was at the doctor's for a regular CF appointment and he let out just one cough.
<br />
<br />Our doctor constantly tells us to KNOW DS' cough -- isn't postnasal, from exertion or being upset... DS rarely coughs, so it usually means he does need something, but I too play the waiting game, increase treatments, etc.