wwyd?

M

mom2owen

New member
We had Owen's Bactrim renewed for an extra week and he had originally improved on it. But, then he got a "cold" last week and as of early yesterday, his cough has returned. That one he had for six weeks with gobs of mucus coming up. It is not as bad as it was at it's worst before but it is undeniably back.
I have to admit that I am "two-timing" and will post this on the asthma forum I recently joined (we really don't fit in anywhere, they say it sounds like CF to them based on my lung description and I didn't even mention CF, good grief) and I will ask them there because I am also concerned about Symbicort. Owen is on 160 four puffs a day. I have read that it causes an increase in asthma related deaths in kids under the age of 12! He was put on this when the first CF doctor went from calling it CF to calling it uncontrolled asthma. Then, the new CF doctor went from calling it uncontrolled asthma to "something else" when his culture came back with Staph. If he does not have uncontrolled asthma, I would really like to get him off that high of a dose of Symbicort.
My questions are: would you keep him on Symbicort? Change to something else? Could it be the Symbicort that is causing this cough?
And, the biggy, the new CF doctor mentioned doing a bronchoscopy in the near future. Would you have it done? I was hesitant at first because the risks of flaring reactive airways is high and that is what they insisted Owen's problem was. I am a little more receptive now because my gut tells me there is something simmering in his lungs that just won't go away. If we could find out what is really going on, I would be for it. Are they always successful at figuring it out with a bronchoscopy? Has anyone had a bad experience with this test?
For final information, he is still nebbing albuterol once a day and we do CPT once a day. He does his Symbicort two puffs am and pm. He just finished Bactrim. Creon and tubes are still the same.
Thanks a million for any thoughts on the testing.
Katy
 
M

mom2owen

New member
We had Owen's Bactrim renewed for an extra week and he had originally improved on it. But, then he got a "cold" last week and as of early yesterday, his cough has returned. That one he had for six weeks with gobs of mucus coming up. It is not as bad as it was at it's worst before but it is undeniably back.
I have to admit that I am "two-timing" and will post this on the asthma forum I recently joined (we really don't fit in anywhere, they say it sounds like CF to them based on my lung description and I didn't even mention CF, good grief) and I will ask them there because I am also concerned about Symbicort. Owen is on 160 four puffs a day. I have read that it causes an increase in asthma related deaths in kids under the age of 12! He was put on this when the first CF doctor went from calling it CF to calling it uncontrolled asthma. Then, the new CF doctor went from calling it uncontrolled asthma to "something else" when his culture came back with Staph. If he does not have uncontrolled asthma, I would really like to get him off that high of a dose of Symbicort.
My questions are: would you keep him on Symbicort? Change to something else? Could it be the Symbicort that is causing this cough?
And, the biggy, the new CF doctor mentioned doing a bronchoscopy in the near future. Would you have it done? I was hesitant at first because the risks of flaring reactive airways is high and that is what they insisted Owen's problem was. I am a little more receptive now because my gut tells me there is something simmering in his lungs that just won't go away. If we could find out what is really going on, I would be for it. Are they always successful at figuring it out with a bronchoscopy? Has anyone had a bad experience with this test?
For final information, he is still nebbing albuterol once a day and we do CPT once a day. He does his Symbicort two puffs am and pm. He just finished Bactrim. Creon and tubes are still the same.
Thanks a million for any thoughts on the testing.
Katy
 
M

mom2owen

New member
We had Owen's Bactrim renewed for an extra week and he had originally improved on it. But, then he got a "cold" last week and as of early yesterday, his cough has returned. That one he had for six weeks with gobs of mucus coming up. It is not as bad as it was at it's worst before but it is undeniably back.
<br />I have to admit that I am "two-timing" and will post this on the asthma forum I recently joined (we really don't fit in anywhere, they say it sounds like CF to them based on my lung description and I didn't even mention CF, good grief) and I will ask them there because I am also concerned about Symbicort. Owen is on 160 four puffs a day. I have read that it causes an increase in asthma related deaths in kids under the age of 12! He was put on this when the first CF doctor went from calling it CF to calling it uncontrolled asthma. Then, the new CF doctor went from calling it uncontrolled asthma to "something else" when his culture came back with Staph. If he does not have uncontrolled asthma, I would really like to get him off that high of a dose of Symbicort.
<br />My questions are: would you keep him on Symbicort? Change to something else? Could it be the Symbicort that is causing this cough?
<br />And, the biggy, the new CF doctor mentioned doing a bronchoscopy in the near future. Would you have it done? I was hesitant at first because the risks of flaring reactive airways is high and that is what they insisted Owen's problem was. I am a little more receptive now because my gut tells me there is something simmering in his lungs that just won't go away. If we could find out what is really going on, I would be for it. Are they always successful at figuring it out with a bronchoscopy? Has anyone had a bad experience with this test?
<br />For final information, he is still nebbing albuterol once a day and we do CPT once a day. He does his Symbicort two puffs am and pm. He just finished Bactrim. Creon and tubes are still the same.
<br />Thanks a million for any thoughts on the testing.
<br />Katy
 
R

Ratatosk

Administrator
Staff member
Don't have experience with bronchoscopy... Just wanted to suggest you increase CPT from once a day to as much as possible to beat that cough out of him. <img src="i/expressions/face-icon-small-smile.gif" border="0">

We were told a minimum of twice a day. When we did CPT we did it for 20 minutes each time, 3 times a day -- more often when ds was sick or coming down with something. We neb albuterol/atrovent and vest for 30 minutes. DS also nebs pulmozyme once a day.

I know he's a busy kid, but if the CPT is helping, might be wise to increase it. When ds was a baby we even would so mini-cpt sessions when he was just sitting on our laps for a few minutes at a time.
 
R

Ratatosk

Administrator
Staff member
Don't have experience with bronchoscopy... Just wanted to suggest you increase CPT from once a day to as much as possible to beat that cough out of him. <img src="i/expressions/face-icon-small-smile.gif" border="0">

We were told a minimum of twice a day. When we did CPT we did it for 20 minutes each time, 3 times a day -- more often when ds was sick or coming down with something. We neb albuterol/atrovent and vest for 30 minutes. DS also nebs pulmozyme once a day.

I know he's a busy kid, but if the CPT is helping, might be wise to increase it. When ds was a baby we even would so mini-cpt sessions when he was just sitting on our laps for a few minutes at a time.
 
R

Ratatosk

Administrator
Staff member
Don't have experience with bronchoscopy... Just wanted to suggest you increase CPT from once a day to as much as possible to beat that cough out of him. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />We were told a minimum of twice a day. When we did CPT we did it for 20 minutes each time, 3 times a day -- more often when ds was sick or coming down with something. We neb albuterol/atrovent and vest for 30 minutes. DS also nebs pulmozyme once a day.
<br />
<br />I know he's a busy kid, but if the CPT is helping, might be wise to increase it. When ds was a baby we even would so mini-cpt sessions when he was just sitting on our laps for a few minutes at a time.
 
T

TonyaH

Guest
Bronchoscopies are a very good diagnostic tool for unexplained decline of pfts, cough that is difficult to treat, etc...but they are in no way conclusive.

It sounds like a bronch may be a good idea for Owen at this point. But I just don't want you to go into it thinking you will find out exactly what is causing the problem. A bronch is like a self induced sputum sample in that it will come from a few areas of the lungs, but not every single hiding place. If Owen is growing something deep down that the bronch does not find and test, then it can be missed.

But I think there is something to be said for your doctor being able to actually see the airways, amount of inflammation, scarring, etc.

As for the bronch itself, it is a pretty easy, quick procedure. There are risks, but you will just have to weigh the risk vs. the benefit. I know you are struggling for some kind of diagnosis and perhaps this could help you.

Good luck!
 
T

TonyaH

Guest
Bronchoscopies are a very good diagnostic tool for unexplained decline of pfts, cough that is difficult to treat, etc...but they are in no way conclusive.

It sounds like a bronch may be a good idea for Owen at this point. But I just don't want you to go into it thinking you will find out exactly what is causing the problem. A bronch is like a self induced sputum sample in that it will come from a few areas of the lungs, but not every single hiding place. If Owen is growing something deep down that the bronch does not find and test, then it can be missed.

But I think there is something to be said for your doctor being able to actually see the airways, amount of inflammation, scarring, etc.

As for the bronch itself, it is a pretty easy, quick procedure. There are risks, but you will just have to weigh the risk vs. the benefit. I know you are struggling for some kind of diagnosis and perhaps this could help you.

Good luck!
 
T

TonyaH

Guest
Bronchoscopies are a very good diagnostic tool for unexplained decline of pfts, cough that is difficult to treat, etc...but they are in no way conclusive.
<br />
<br />It sounds like a bronch may be a good idea for Owen at this point. But I just don't want you to go into it thinking you will find out exactly what is causing the problem. A bronch is like a self induced sputum sample in that it will come from a few areas of the lungs, but not every single hiding place. If Owen is growing something deep down that the bronch does not find and test, then it can be missed.
<br />
<br />But I think there is something to be said for your doctor being able to actually see the airways, amount of inflammation, scarring, etc.
<br />
<br />As for the bronch itself, it is a pretty easy, quick procedure. There are risks, but you will just have to weigh the risk vs. the benefit. I know you are struggling for some kind of diagnosis and perhaps this could help you.
<br />
<br />Good luck!
<br />
<br />
 
R

Ratatosk

Administrator
Staff member
Has he ever had a lung scan? DS has had them in which he inhales a radioactive isotope via a neb and then they do a scan of his lungs. Gets a better look at small airways, etc.
 
R

Ratatosk

Administrator
Staff member
Has he ever had a lung scan? DS has had them in which he inhales a radioactive isotope via a neb and then they do a scan of his lungs. Gets a better look at small airways, etc.
 
R

Ratatosk

Administrator
Staff member
Has he ever had a lung scan? DS has had them in which he inhales a radioactive isotope via a neb and then they do a scan of his lungs. Gets a better look at small airways, etc.
 
P

Printer

Active member
If you don't have confidence in your Doctors' decision making or if you can't ask him/her these questions, I would strongly suggest that you get a new Doctor.

It is not fair, to you, that you have all of these unanswered questions. That is the Doctors job and it is what you are paying them for.
 
P

Printer

Active member
If you don't have confidence in your Doctors' decision making or if you can't ask him/her these questions, I would strongly suggest that you get a new Doctor.

It is not fair, to you, that you have all of these unanswered questions. That is the Doctors job and it is what you are paying them for.
 
P

Printer

Active member
If you don't have confidence in your Doctors' decision making or if you can't ask him/her these questions, I would strongly suggest that you get a new Doctor.
<br />
<br />It is not fair, to you, that you have all of these unanswered questions. That is the Doctors job and it is what you are paying them for.
 
R

Rebjane

Super Moderator
Kathy,

I am sorry Owen's cough is back. Alot of kids with CF are also on medications that kids with asthma use. Some kids with CF also have asthma and or kids with CF have inflammation issues and need medications that treat inflammation/ wheezing, so they use things like albuterol, pulmicort, singulair etc. We are treating the symptoms and trying to keep inflammation under control which also helps break the cycle of inflammation, infection and lung damage and scarring.

My daughter is not on Symbicort but she has been on Pulmicort since she was 2 1/2 years old, she is now 8 and so far she has not had issues with it.

My daughter has also had a bronchoscopy at the age of 2 1/2 years old when she had a cough that would just not go away. It is a diagnostic tool, they can get more accurate cultures, look and see if there is mucus in the airways, inflammation in the airway, among other things. Of course, it is invasive, requires sedation so there is risk; the doctors should go over the risks with you.

The cough coming back with a cold happens to my daughter as well; I call her CF doc and he will listen to her symptoms; sometimes he needs to see her for PFT's (not sure if your son has had these?), listen to her lungs, he may prescribe antibitoics again for a long course at least 14 days; sometimes prednisone(if she is wheezing).

At the first signs of a cold; I increase my daughter's VEST and do manual CPT as well. Add in an extra albuterol neb, too. Increase fluids. We push for CPT or VEST every 4 hours while awake with her brochodilator(albuterol) before the VEST.

I hope things improve.
 
R

Rebjane

Super Moderator
Kathy,

I am sorry Owen's cough is back. Alot of kids with CF are also on medications that kids with asthma use. Some kids with CF also have asthma and or kids with CF have inflammation issues and need medications that treat inflammation/ wheezing, so they use things like albuterol, pulmicort, singulair etc. We are treating the symptoms and trying to keep inflammation under control which also helps break the cycle of inflammation, infection and lung damage and scarring.

My daughter is not on Symbicort but she has been on Pulmicort since she was 2 1/2 years old, she is now 8 and so far she has not had issues with it.

My daughter has also had a bronchoscopy at the age of 2 1/2 years old when she had a cough that would just not go away. It is a diagnostic tool, they can get more accurate cultures, look and see if there is mucus in the airways, inflammation in the airway, among other things. Of course, it is invasive, requires sedation so there is risk; the doctors should go over the risks with you.

The cough coming back with a cold happens to my daughter as well; I call her CF doc and he will listen to her symptoms; sometimes he needs to see her for PFT's (not sure if your son has had these?), listen to her lungs, he may prescribe antibitoics again for a long course at least 14 days; sometimes prednisone(if she is wheezing).

At the first signs of a cold; I increase my daughter's VEST and do manual CPT as well. Add in an extra albuterol neb, too. Increase fluids. We push for CPT or VEST every 4 hours while awake with her brochodilator(albuterol) before the VEST.

I hope things improve.
 
R

Rebjane

Super Moderator
Kathy,
<br />
<br />I am sorry Owen's cough is back. Alot of kids with CF are also on medications that kids with asthma use. Some kids with CF also have asthma and or kids with CF have inflammation issues and need medications that treat inflammation/ wheezing, so they use things like albuterol, pulmicort, singulair etc. We are treating the symptoms and trying to keep inflammation under control which also helps break the cycle of inflammation, infection and lung damage and scarring.
<br />
<br />My daughter is not on Symbicort but she has been on Pulmicort since she was 2 1/2 years old, she is now 8 and so far she has not had issues with it.
<br />
<br />My daughter has also had a bronchoscopy at the age of 2 1/2 years old when she had a cough that would just not go away. It is a diagnostic tool, they can get more accurate cultures, look and see if there is mucus in the airways, inflammation in the airway, among other things. Of course, it is invasive, requires sedation so there is risk; the doctors should go over the risks with you.
<br />
<br />The cough coming back with a cold happens to my daughter as well; I call her CF doc and he will listen to her symptoms; sometimes he needs to see her for PFT's (not sure if your son has had these?), listen to her lungs, he may prescribe antibitoics again for a long course at least 14 days; sometimes prednisone(if she is wheezing).
<br />
<br />At the first signs of a cold; I increase my daughter's VEST and do manual CPT as well. Add in an extra albuterol neb, too. Increase fluids. We push for CPT or VEST every 4 hours while awake with her brochodilator(albuterol) before the VEST.
<br />
<br />I hope things improve.
 
M

mom2owen

New member
Liza, I will increase his CPT, it seems like a good idea, it does seem to help even at once a day. I have a feeling your busy son and mine might be a lot alike <img src="i/expressions/face-icon-small-smile.gif" border="0"> I like your idea of mini sessions! He did have a CT scan without contrast dye. It showed atelectasis/scarring and bronchial wall thickening. Maybe it is from that that he still coughs...The mucus this time seems a bit thicker and harder to cough up so hopefully we will either have successful CPT or maybe a med change to help with that.
Rebjane and Tonya, thanks for your thoughts. I think the bronchoscopy is probably what we will do. I don't expect miracles but sure do hope for something to make some sense and give direction. When it was first suggested, I was thinking she just wanted to do it to say she did something. I think I was wrong about that...It will just take some time for me to understand her ways and for her to get to know Owen. He has been under general many times, although I don't like it, I was actually more worried about irritating his lungs when they look around. Obviously there are lots of people who have them, I need to trust and relax on that one I think.
Printer, I can and will talk to our doctor but we have had a really hard time with things and I always like to bounce ideas off people here. When the diagnosis is not made simple, I think it is pretty normal to have even more questions about what should be done, what meds should be used, etc. We are figuring it all out but I could never do it without the people here!
Thanks for your thoughts, I appreciate it all.
 
M

mom2owen

New member
Liza, I will increase his CPT, it seems like a good idea, it does seem to help even at once a day. I have a feeling your busy son and mine might be a lot alike <img src="i/expressions/face-icon-small-smile.gif" border="0"> I like your idea of mini sessions! He did have a CT scan without contrast dye. It showed atelectasis/scarring and bronchial wall thickening. Maybe it is from that that he still coughs...The mucus this time seems a bit thicker and harder to cough up so hopefully we will either have successful CPT or maybe a med change to help with that.
Rebjane and Tonya, thanks for your thoughts. I think the bronchoscopy is probably what we will do. I don't expect miracles but sure do hope for something to make some sense and give direction. When it was first suggested, I was thinking she just wanted to do it to say she did something. I think I was wrong about that...It will just take some time for me to understand her ways and for her to get to know Owen. He has been under general many times, although I don't like it, I was actually more worried about irritating his lungs when they look around. Obviously there are lots of people who have them, I need to trust and relax on that one I think.
Printer, I can and will talk to our doctor but we have had a really hard time with things and I always like to bounce ideas off people here. When the diagnosis is not made simple, I think it is pretty normal to have even more questions about what should be done, what meds should be used, etc. We are figuring it all out but I could never do it without the people here!
Thanks for your thoughts, I appreciate it all.
 
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