Need help with son's cough

ptmorley · Nov 2, 2009

I am posting this in the adult section with the hope some adults may have been through this as a child and can help me. There is so much history here but basically my 12 year old son with CF has been coughing for 15 months and the MD's can not figure out why. His current CF MD is attributing it to a "habit cough" because when he falls asleep he does not cough. For "habit cough" you basically learn relaxation techniques to help you relax and stop coughing. I am very concerned about treating this as a habit cough. As a mother you can not listen to your child cough and not be concerned. Particularly a child with CF.

Historically my son has been pretty healthy. He has had sinus surgery 2x in the past year. About a month ago the ENT took a look at him and does not think the cough is caused by a post nasal drip. He is on prevacid to control any acid reflux. Non acid reflux is being considered. His cough is worst upon awakening and when he lies down to go to sleep at night. We are seeing a child psychiatrist for biofeedback to address the habit cough. That is not helping.

The only thing that has ever made the cough go away was antibiotics. First bactrim worked, then clindamycin, then kephlex. Each worked for a while but stopped working. I have asked his CF MD about IV antibiotics but he does not think this is an infection because he does have periods where he is cough free. Usually mid day.

I am sorry to ramble on so much but I just wonder if anyone else has experienced similar symptoms and can offer advice? I should also mention he is a great kid.

ptmorley · Nov 2, 2009

I am posting this in the adult section with the hope some adults may have been through this as a child and can help me. There is so much history here but basically my 12 year old son with CF has been coughing for 15 months and the MD's can not figure out why. His current CF MD is attributing it to a "habit cough" because when he falls asleep he does not cough. For "habit cough" you basically learn relaxation techniques to help you relax and stop coughing. I am very concerned about treating this as a habit cough. As a mother you can not listen to your child cough and not be concerned. Particularly a child with CF.

Historically my son has been pretty healthy. He has had sinus surgery 2x in the past year. About a month ago the ENT took a look at him and does not think the cough is caused by a post nasal drip. He is on prevacid to control any acid reflux. Non acid reflux is being considered. His cough is worst upon awakening and when he lies down to go to sleep at night. We are seeing a child psychiatrist for biofeedback to address the habit cough. That is not helping.

The only thing that has ever made the cough go away was antibiotics. First bactrim worked, then clindamycin, then kephlex. Each worked for a while but stopped working. I have asked his CF MD about IV antibiotics but he does not think this is an infection because he does have periods where he is cough free. Usually mid day.

I am sorry to ramble on so much but I just wonder if anyone else has experienced similar symptoms and can offer advice? I should also mention he is a great kid.

ptmorley · Nov 2, 2009

I am posting this in the adult section with the hope some adults may have been through this as a child and can help me. There is so much history here but basically my 12 year old son with CF has been coughing for 15 months and the MD's can not figure out why. His current CF MD is attributing it to a "habit cough" because when he falls asleep he does not cough. For "habit cough" you basically learn relaxation techniques to help you relax and stop coughing. I am very concerned about treating this as a habit cough. As a mother you can not listen to your child cough and not be concerned. Particularly a child with CF.

Historically my son has been pretty healthy. He has had sinus surgery 2x in the past year. About a month ago the ENT took a look at him and does not think the cough is caused by a post nasal drip. He is on prevacid to control any acid reflux. Non acid reflux is being considered. His cough is worst upon awakening and when he lies down to go to sleep at night. We are seeing a child psychiatrist for biofeedback to address the habit cough. That is not helping.

The only thing that has ever made the cough go away was antibiotics. First bactrim worked, then clindamycin, then kephlex. Each worked for a while but stopped working. I have asked his CF MD about IV antibiotics but he does not think this is an infection because he does have periods where he is cough free. Usually mid day.

I am sorry to ramble on so much but I just wonder if anyone else has experienced similar symptoms and can offer advice? I should also mention he is a great kid.

ptmorley · Nov 2, 2009

I am posting this in the adult section with the hope some adults may have been through this as a child and can help me. There is so much history here but basically my 12 year old son with CF has been coughing for 15 months and the MD's can not figure out why. His current CF MD is attributing it to a "habit cough" because when he falls asleep he does not cough. For "habit cough" you basically learn relaxation techniques to help you relax and stop coughing. I am very concerned about treating this as a habit cough. As a mother you can not listen to your child cough and not be concerned. Particularly a child with CF.

Historically my son has been pretty healthy. He has had sinus surgery 2x in the past year. About a month ago the ENT took a look at him and does not think the cough is caused by a post nasal drip. He is on prevacid to control any acid reflux. Non acid reflux is being considered. His cough is worst upon awakening and when he lies down to go to sleep at night. We are seeing a child psychiatrist for biofeedback to address the habit cough. That is not helping.

The only thing that has ever made the cough go away was antibiotics. First bactrim worked, then clindamycin, then kephlex. Each worked for a while but stopped working. I have asked his CF MD about IV antibiotics but he does not think this is an infection because he does have periods where he is cough free. Usually mid day.

I am sorry to ramble on so much but I just wonder if anyone else has experienced similar symptoms and can offer advice? I should also mention he is a great kid.

ptmorley · Nov 2, 2009

I am posting this in the adult section with the hope some adults may have been through this as a child and can help me. There is so much history here but basically my 12 year old son with CF has been coughing for 15 months and the MD's can not figure out why. His current CF MD is attributing it to a "habit cough" because when he falls asleep he does not cough. For "habit cough" you basically learn relaxation techniques to help you relax and stop coughing. I am very concerned about treating this as a habit cough. As a mother you can not listen to your child cough and not be concerned. Particularly a child with CF.
 
 Historically my son has been pretty healthy. He has had sinus surgery 2x in the past year. About a month ago the ENT took a look at him and does not think the cough is caused by a post nasal drip. He is on prevacid to control any acid reflux. Non acid reflux is being considered. His cough is worst upon awakening and when he lies down to go to sleep at night. We are seeing a child psychiatrist for biofeedback to address the habit cough. That is not helping.
 
 The only thing that has ever made the cough go away was antibiotics. First bactrim worked, then clindamycin, then kephlex. Each worked for a while but stopped working. I have asked his CF MD about IV antibiotics but he does not think this is an infection because he does have periods where he is cough free. Usually mid day.
 
 I am sorry to ramble on so much but I just wonder if anyone else has experienced similar symptoms and can offer advice? I should also mention he is a great kid.

welshwitch · Nov 2, 2009

Hi,

here are some tips that have helped me (I'm almost 30 with CF)

*Exercise. Working out every day after work really helps clear me up.
*Pulmozyme. This is especially great when I have a cold that's gone to my lungs and I can't stop coughing and am having cough attacks, particularly at night.
*When I'm just tired or worn out, the first thing that happens is my CF symptoms flare up, and one of them is the ole' CF cough. Simple things like making sure I'm getting enough to eat, getting enough sleep, and reducing my stress level make my cough go away. When I'm hungry my cough flares up, same when I'm exhausted.
*Somethings I just accept as part of CF. For me, it's normal to cough in the morning after I get up. This is because the gunk has had all night to settle in my lungs. It's a bit annoying, but I know myself and this is really no cause for alarm. In fact, it's a great way to get cleared out for the day!

So it's a tricky balance, but I've also come to accept that there are many, many types of CF coughs and that coughing is just a part of life with CF. Sometimes it's great for you (when I'm running for 30 minutes on the treadmill, it feels so great to get that stuff up.) But other coughs are just really rough and exhausting (the type that prevents you from sleeping or is related to a cold).

I would chat with your son and find out what's going on in his opinion. Does he feel OK, aside from an annoying cough? Or does he feel bad? Once you get his input then I'd come up with some proactive techniques to deal with it. Good luck! I'm sure your son is a great kid <img src="i/expressions/face-icon-small-smile.gif" border="0">

welshwitch · Nov 2, 2009

Hi,

here are some tips that have helped me (I'm almost 30 with CF)

*Exercise. Working out every day after work really helps clear me up.
*Pulmozyme. This is especially great when I have a cold that's gone to my lungs and I can't stop coughing and am having cough attacks, particularly at night.
*When I'm just tired or worn out, the first thing that happens is my CF symptoms flare up, and one of them is the ole' CF cough. Simple things like making sure I'm getting enough to eat, getting enough sleep, and reducing my stress level make my cough go away. When I'm hungry my cough flares up, same when I'm exhausted.
*Somethings I just accept as part of CF. For me, it's normal to cough in the morning after I get up. This is because the gunk has had all night to settle in my lungs. It's a bit annoying, but I know myself and this is really no cause for alarm. In fact, it's a great way to get cleared out for the day!

So it's a tricky balance, but I've also come to accept that there are many, many types of CF coughs and that coughing is just a part of life with CF. Sometimes it's great for you (when I'm running for 30 minutes on the treadmill, it feels so great to get that stuff up.) But other coughs are just really rough and exhausting (the type that prevents you from sleeping or is related to a cold).

I would chat with your son and find out what's going on in his opinion. Does he feel OK, aside from an annoying cough? Or does he feel bad? Once you get his input then I'd come up with some proactive techniques to deal with it. Good luck! I'm sure your son is a great kid <img src="i/expressions/face-icon-small-smile.gif" border="0">

welshwitch · Nov 2, 2009

Hi,

here are some tips that have helped me (I'm almost 30 with CF)

*Exercise. Working out every day after work really helps clear me up.
*Pulmozyme. This is especially great when I have a cold that's gone to my lungs and I can't stop coughing and am having cough attacks, particularly at night.
*When I'm just tired or worn out, the first thing that happens is my CF symptoms flare up, and one of them is the ole' CF cough. Simple things like making sure I'm getting enough to eat, getting enough sleep, and reducing my stress level make my cough go away. When I'm hungry my cough flares up, same when I'm exhausted.
*Somethings I just accept as part of CF. For me, it's normal to cough in the morning after I get up. This is because the gunk has had all night to settle in my lungs. It's a bit annoying, but I know myself and this is really no cause for alarm. In fact, it's a great way to get cleared out for the day!

So it's a tricky balance, but I've also come to accept that there are many, many types of CF coughs and that coughing is just a part of life with CF. Sometimes it's great for you (when I'm running for 30 minutes on the treadmill, it feels so great to get that stuff up.) But other coughs are just really rough and exhausting (the type that prevents you from sleeping or is related to a cold).

I would chat with your son and find out what's going on in his opinion. Does he feel OK, aside from an annoying cough? Or does he feel bad? Once you get his input then I'd come up with some proactive techniques to deal with it. Good luck! I'm sure your son is a great kid <img src="i/expressions/face-icon-small-smile.gif" border="0">

welshwitch · Nov 2, 2009

Hi,

here are some tips that have helped me (I'm almost 30 with CF)

*Exercise. Working out every day after work really helps clear me up.
*Pulmozyme. This is especially great when I have a cold that's gone to my lungs and I can't stop coughing and am having cough attacks, particularly at night.
*When I'm just tired or worn out, the first thing that happens is my CF symptoms flare up, and one of them is the ole' CF cough. Simple things like making sure I'm getting enough to eat, getting enough sleep, and reducing my stress level make my cough go away. When I'm hungry my cough flares up, same when I'm exhausted.
*Somethings I just accept as part of CF. For me, it's normal to cough in the morning after I get up. This is because the gunk has had all night to settle in my lungs. It's a bit annoying, but I know myself and this is really no cause for alarm. In fact, it's a great way to get cleared out for the day!

So it's a tricky balance, but I've also come to accept that there are many, many types of CF coughs and that coughing is just a part of life with CF. Sometimes it's great for you (when I'm running for 30 minutes on the treadmill, it feels so great to get that stuff up.) But other coughs are just really rough and exhausting (the type that prevents you from sleeping or is related to a cold).

I would chat with your son and find out what's going on in his opinion. Does he feel OK, aside from an annoying cough? Or does he feel bad? Once you get his input then I'd come up with some proactive techniques to deal with it. Good luck! I'm sure your son is a great kid <img src="i/expressions/face-icon-small-smile.gif" border="0">

welshwitch · Nov 2, 2009

Hi,
 
 here are some tips that have helped me (I'm almost 30 with CF)
 
 *Exercise. Working out every day after work really helps clear me up.
 *Pulmozyme. This is especially great when I have a cold that's gone to my lungs and I can't stop coughing and am having cough attacks, particularly at night.
 *When I'm just tired or worn out, the first thing that happens is my CF symptoms flare up, and one of them is the ole' CF cough. Simple things like making sure I'm getting enough to eat, getting enough sleep, and reducing my stress level make my cough go away. When I'm hungry my cough flares up, same when I'm exhausted.
 *Somethings I just accept as part of CF. For me, it's normal to cough in the morning after I get up. This is because the gunk has had all night to settle in my lungs. It's a bit annoying, but I know myself and this is really no cause for alarm. In fact, it's a great way to get cleared out for the day!
 
 So it's a tricky balance, but I've also come to accept that there are many, many types of CF coughs and that coughing is just a part of life with CF. Sometimes it's great for you (when I'm running for 30 minutes on the treadmill, it feels so great to get that stuff up.) But other coughs are just really rough and exhausting (the type that prevents you from sleeping or is related to a cold).
 
 I would chat with your son and find out what's going on in his opinion. Does he feel OK, aside from an annoying cough? Or does he feel bad? Once you get his input then I'd come up with some proactive techniques to deal with it. Good luck! I'm sure your son is a great kid <img src="i/expressions/face-icon-small-smile.gif" border="0">

ptmorley · Nov 2, 2009

Thank you for the advice. I appreciate it. One thing I wasn't clear on though is that this is a debilitating cough, he will cough non stop from 7am -2pm, sometimes longer. At night he might cough from 9pm until 1am when he finally coughs himself to sleep. It is a barky, non productive cough and he doesn't get any mucus up. Sometimes a hot shower or being outside in the cool air helps, sometimes it doesn't. This cough is also preventing him from being in school. He has missed 20 days so far this year. He is a real social kid and wants to be in school, no school phobia or anything like that. This is really wearing on him.

ptmorley · Nov 2, 2009

Thank you for the advice. I appreciate it. One thing I wasn't clear on though is that this is a debilitating cough, he will cough non stop from 7am -2pm, sometimes longer. At night he might cough from 9pm until 1am when he finally coughs himself to sleep. It is a barky, non productive cough and he doesn't get any mucus up. Sometimes a hot shower or being outside in the cool air helps, sometimes it doesn't. This cough is also preventing him from being in school. He has missed 20 days so far this year. He is a real social kid and wants to be in school, no school phobia or anything like that. This is really wearing on him.

ptmorley · Nov 2, 2009

Thank you for the advice. I appreciate it. One thing I wasn't clear on though is that this is a debilitating cough, he will cough non stop from 7am -2pm, sometimes longer. At night he might cough from 9pm until 1am when he finally coughs himself to sleep. It is a barky, non productive cough and he doesn't get any mucus up. Sometimes a hot shower or being outside in the cool air helps, sometimes it doesn't. This cough is also preventing him from being in school. He has missed 20 days so far this year. He is a real social kid and wants to be in school, no school phobia or anything like that. This is really wearing on him.

ptmorley · Nov 2, 2009

Thank you for the advice. I appreciate it. One thing I wasn't clear on though is that this is a debilitating cough, he will cough non stop from 7am -2pm, sometimes longer. At night he might cough from 9pm until 1am when he finally coughs himself to sleep. It is a barky, non productive cough and he doesn't get any mucus up. Sometimes a hot shower or being outside in the cool air helps, sometimes it doesn't. This cough is also preventing him from being in school. He has missed 20 days so far this year. He is a real social kid and wants to be in school, no school phobia or anything like that. This is really wearing on him.

ptmorley · Nov 2, 2009

Thank you for the advice. I appreciate it. One thing I wasn't clear on though is that this is a debilitating cough, he will cough non stop from 7am -2pm, sometimes longer. At night he might cough from 9pm until 1am when he finally coughs himself to sleep. It is a barky, non productive cough and he doesn't get any mucus up. Sometimes a hot shower or being outside in the cool air helps, sometimes it doesn't. This cough is also preventing him from being in school. He has missed 20 days so far this year. He is a real social kid and wants to be in school, no school phobia or anything like that. This is really wearing on him.

Rebjane · Nov 2, 2009

You did not mention what your son is culturing for bacteria. It sounds like this cough is affecting the quality of his life. I would want to know what he culturing; what it is sensitive to? Does he have inflammation issues? What nebs is he on? How much VEST is he doing? Is his weight ok? My daughter had a terrible time when she first cultured MRSA; would not stop coughing...She needed a second opnion, IV's a bronchoscopy, nebs for imflammation and aggressive treatment..Sometimes a second opinion/and or more information can shed a different light on how to handle this situation.

Rebjane · Nov 2, 2009

You did not mention what your son is culturing for bacteria. It sounds like this cough is affecting the quality of his life. I would want to know what he culturing; what it is sensitive to? Does he have inflammation issues? What nebs is he on? How much VEST is he doing? Is his weight ok? My daughter had a terrible time when she first cultured MRSA; would not stop coughing...She needed a second opnion, IV's a bronchoscopy, nebs for imflammation and aggressive treatment..Sometimes a second opinion/and or more information can shed a different light on how to handle this situation.

Rebjane · Nov 2, 2009

You did not mention what your son is culturing for bacteria. It sounds like this cough is affecting the quality of his life. I would want to know what he culturing; what it is sensitive to? Does he have inflammation issues? What nebs is he on? How much VEST is he doing? Is his weight ok? My daughter had a terrible time when she first cultured MRSA; would not stop coughing...She needed a second opnion, IV's a bronchoscopy, nebs for imflammation and aggressive treatment..Sometimes a second opinion/and or more information can shed a different light on how to handle this situation.

Rebjane · Nov 2, 2009

You did not mention what your son is culturing for bacteria. It sounds like this cough is affecting the quality of his life. I would want to know what he culturing; what it is sensitive to? Does he have inflammation issues? What nebs is he on? How much VEST is he doing? Is his weight ok? My daughter had a terrible time when she first cultured MRSA; would not stop coughing...She needed a second opnion, IV's a bronchoscopy, nebs for imflammation and aggressive treatment..Sometimes a second opinion/and or more information can shed a different light on how to handle this situation.

Rebjane · Nov 2, 2009

You did not mention what your son is culturing for bacteria. It sounds like this cough is affecting the quality of his life. I would want to know what he culturing; what it is sensitive to? Does he have inflammation issues? What nebs is he on? How much VEST is he doing? Is his weight ok? My daughter had a terrible time when she first cultured MRSA; would not stop coughing...She needed a second opnion, IV's a bronchoscopy, nebs for imflammation and aggressive treatment..Sometimes a second opinion/and or more information can shed a different light on how to handle this situation.

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