What is the norm of "Coughing" for CF

[edan]

Hi. As I have posted before, DD diagnosed in May with no symptoms until the last 2 months (String of 3 colds with coughing). Now I am wondering. We just started Pulmozyme a few days ago and the vest a week and a half ago, so we hadn't done much airways clearance until recently. We only have 2 days left of our week on home IVs, after a week in the hospital for a CF "exacerbation" because her 3rd cold went into the lungs (culture actually came back negative for any bacteria)and DD is still coughing up a little white phlegm.

What is the norm for CF? Do all kids always cough some stuff up? Or, do you finally get to the point to where the pulmozyme/albuterol/vest/etc get the lungs to a virtually "mucus clear" stage so there is nothing left to cough up if the treatments are maintained?

Thanks again. There is sooooooooooo much to learn. I admire tremendously all of you who have been dealing with this for so long.

Edan.

 

[edan]

Hi. As I have posted before, DD diagnosed in May with no symptoms until the last 2 months (String of 3 colds with coughing). Now I am wondering. We just started Pulmozyme a few days ago and the vest a week and a half ago, so we hadn't done much airways clearance until recently. We only have 2 days left of our week on home IVs, after a week in the hospital for a CF "exacerbation" because her 3rd cold went into the lungs (culture actually came back negative for any bacteria)and DD is still coughing up a little white phlegm.

What is the norm for CF? Do all kids always cough some stuff up? Or, do you finally get to the point to where the pulmozyme/albuterol/vest/etc get the lungs to a virtually "mucus clear" stage so there is nothing left to cough up if the treatments are maintained?

Thanks again. There is sooooooooooo much to learn. I admire tremendously all of you who have been dealing with this for so long.

Edan.

 

[edan]

Hi. As I have posted before, DD diagnosed in May with no symptoms until the last 2 months (String of 3 colds with coughing). Now I am wondering. We just started Pulmozyme a few days ago and the vest a week and a half ago, so we hadn't done much airways clearance until recently. We only have 2 days left of our week on home IVs, after a week in the hospital for a CF "exacerbation" because her 3rd cold went into the lungs (culture actually came back negative for any bacteria)and DD is still coughing up a little white phlegm.
<br />
<br />What is the norm for CF? Do all kids always cough some stuff up? Or, do you finally get to the point to where the pulmozyme/albuterol/vest/etc get the lungs to a virtually "mucus clear" stage so there is nothing left to cough up if the treatments are maintained?
<br />
<br />Thanks again. There is sooooooooooo much to learn. I admire tremendously all of you who have been dealing with this for so long.
<br />
<br />Edan.

 

[hmw]

This norm is going to vary dramatically across the cf population, even amongst children, since everyone's disease presents and progresses differently. The goal is little to no cough or other symptoms as the child's 'healthy baseline', but that isn't always going to be the case.

I think a couple things are important: 1/ never to just assume cough and other symptoms are 'inevitable' and ignore them ...aggressive airway clearance and preventative treatment is vital to minimize symptoms and improve 'baseline' symptoms as much as possible, and 2/ some coughing is normal (and desirable) during airway clearance. Coughing a little every day while doing the vest is not at all the same as a chronic 'all the time' cough that is for no reason at all.

Now that she is nebbing albuteral and Pulmozyme and doing the vest, you may well see an improvement in her baseline... we did with our daughter when she was dx'ed just about 2yrs ago at the age of 7 as we tailored her various inhaled meds and airway clearance. It will keep her healthier between illnesses, and more aggressive treatment when she's sick will help her clear mucus more effectively when congested and hopefully help her get over her illnesses faster.

 

[hmw]

This norm is going to vary dramatically across the cf population, even amongst children, since everyone's disease presents and progresses differently. The goal is little to no cough or other symptoms as the child's 'healthy baseline', but that isn't always going to be the case.

I think a couple things are important: 1/ never to just assume cough and other symptoms are 'inevitable' and ignore them ...aggressive airway clearance and preventative treatment is vital to minimize symptoms and improve 'baseline' symptoms as much as possible, and 2/ some coughing is normal (and desirable) during airway clearance. Coughing a little every day while doing the vest is not at all the same as a chronic 'all the time' cough that is for no reason at all.

Now that she is nebbing albuteral and Pulmozyme and doing the vest, you may well see an improvement in her baseline... we did with our daughter when she was dx'ed just about 2yrs ago at the age of 7 as we tailored her various inhaled meds and airway clearance. It will keep her healthier between illnesses, and more aggressive treatment when she's sick will help her clear mucus more effectively when congested and hopefully help her get over her illnesses faster.

 

[hmw]

This norm is going to vary dramatically across the cf population, even amongst children, since everyone's disease presents and progresses differently. The goal is little to no cough or other symptoms as the child's 'healthy baseline', but that isn't always going to be the case.
<br />
<br />I think a couple things are important: 1/ never to just assume cough and other symptoms are 'inevitable' and ignore them ...aggressive airway clearance and preventative treatment is vital to minimize symptoms and improve 'baseline' symptoms as much as possible, and 2/ some coughing is normal (and desirable) during airway clearance. Coughing a little every day while doing the vest is not at all the same as a chronic 'all the time' cough that is for no reason at all.
<br />
<br />Now that she is nebbing albuteral and Pulmozyme and doing the vest, you may well see an improvement in her baseline... we did with our daughter when she was dx'ed just about 2yrs ago at the age of 7 as we tailored her various inhaled meds and airway clearance. It will keep her healthier between illnesses, and more aggressive treatment when she's sick will help her clear mucus more effectively when congested and hopefully help her get over her illnesses faster.

 

[Gnome]

Neither of my kids cough up stuff yet. They are 2 and 5 years old. My son is supposed to cough as part of his treatments which he does but nothing ever comes up. He doesn't need to cough unless he is sick with a cough or cold.

 

[Gnome]

Neither of my kids cough up stuff yet. They are 2 and 5 years old. My son is supposed to cough as part of his treatments which he does but nothing ever comes up. He doesn't need to cough unless he is sick with a cough or cold.

 

[Gnome]

Neither of my kids cough up stuff yet. They are 2 and 5 years old. My son is supposed to cough as part of his treatments which he does but nothing ever comes up. He doesn't need to cough unless he is sick with a cough or cold.

 

[Ratatosk]

We were told to "know our cough" and to call the doctor if ds develops one as no cough is baseline. When he was 3 months old, he had a terrible bronchial cough and I asked his local cf doctor and was told "it's what they do. They cough". A couple weeks later his doctor in the city YELLED at us. Didn't we know he had bronchitis?

When DS was 4 he developed a sort of throat clearing dry cough, which I thought was just a habit. Turned out he was culturing steno maltophilia. Sometimes DS has sinus issues and will cough due to post nasal drip.

 

[Ratatosk]

We were told to "know our cough" and to call the doctor if ds develops one as no cough is baseline. When he was 3 months old, he had a terrible bronchial cough and I asked his local cf doctor and was told "it's what they do. They cough". A couple weeks later his doctor in the city YELLED at us. Didn't we know he had bronchitis?

When DS was 4 he developed a sort of throat clearing dry cough, which I thought was just a habit. Turned out he was culturing steno maltophilia. Sometimes DS has sinus issues and will cough due to post nasal drip.

 

[Ratatosk]

We were told to "know our cough" and to call the doctor if ds develops one as no cough is baseline. When he was 3 months old, he had a terrible bronchial cough and I asked his local cf doctor and was told "it's what they do. They cough". A couple weeks later his doctor in the city YELLED at us. Didn't we know he had bronchitis?
<br />
<br />When DS was 4 he developed a sort of throat clearing dry cough, which I thought was just a habit. Turned out he was culturing steno maltophilia. Sometimes DS has sinus issues and will cough due to post nasal drip.
<br />
<br />

 

[tammykrumrey]

I think this is something that is ever-changing. My girls never really coughed a lot when they were little. It seems that their coughs just slowly start becoming more frequent as they get older. Kayla's has progressed quicker than Hannah's.
Kayla's 'norm' used to be 'no cough'. Then it was 'morning cough'. Now it is 'all day long cough.' When I know she is in need of more meds is when her 'all day long cough' turns into the 'no one can sleep in the house because she is up coughing for hours cough'.
Hannah's norm is still in the 'morning cough' phase. Not to say she doesn't cough during the day, but not as much as her big sister.
And some coughs are just different than others. Some I can tell are coming from the sinus' and some are from the lungs. It has taken me a long time to learn the different coughs, and you will get there, too!!!

 

[tammykrumrey]

I think this is something that is ever-changing. My girls never really coughed a lot when they were little. It seems that their coughs just slowly start becoming more frequent as they get older. Kayla's has progressed quicker than Hannah's.
Kayla's 'norm' used to be 'no cough'. Then it was 'morning cough'. Now it is 'all day long cough.' When I know she is in need of more meds is when her 'all day long cough' turns into the 'no one can sleep in the house because she is up coughing for hours cough'.
Hannah's norm is still in the 'morning cough' phase. Not to say she doesn't cough during the day, but not as much as her big sister.
And some coughs are just different than others. Some I can tell are coming from the sinus' and some are from the lungs. It has taken me a long time to learn the different coughs, and you will get there, too!!!

 

[tammykrumrey]

I think this is something that is ever-changing. My girls never really coughed a lot when they were little. It seems that their coughs just slowly start becoming more frequent as they get older. Kayla's has progressed quicker than Hannah's.
<br />Kayla's 'norm' used to be 'no cough'. Then it was 'morning cough'. Now it is 'all day long cough.' When I know she is in need of more meds is when her 'all day long cough' turns into the 'no one can sleep in the house because she is up coughing for hours cough'.
<br />Hannah's norm is still in the 'morning cough' phase. Not to say she doesn't cough during the day, but not as much as her big sister.
<br />And some coughs are just different than others. Some I can tell are coming from the sinus' and some are from the lungs. It has taken me a long time to learn the different coughs, and you will get there, too!!!