Need help with son's cough

P

ptmorley

New member
He cultured staphylococcus aureus and serratia marcescens both should have responded to the levaquin he took but we never noticed a difference. I really feel like we are missing something. We are in the "process" of having a bronchoscopy and some ph test to look at relux. It is so frustrating because the scheduling takes weeks and my son is in discomfort and his quality of life is definitely effected. We do have a second opinion with a different CF MD next week. Even a week seems so long to wait. He is currently not doing any nebs because the MD wonders if it irritates his airway. I guess if there is any reflux the esophagus might be irritated . I just feel like everything with CF treatment is so aggressive and I don't think we are being aggressive enough.

Anyway, I really appreciate your thoughts. I think I just need to stick with my gut and keep pushing for more tests. My gut tells me there is something else going on here.
 
P

ptmorley

New member
He cultured staphylococcus aureus and serratia marcescens both should have responded to the levaquin he took but we never noticed a difference. I really feel like we are missing something. We are in the "process" of having a bronchoscopy and some ph test to look at relux. It is so frustrating because the scheduling takes weeks and my son is in discomfort and his quality of life is definitely effected. We do have a second opinion with a different CF MD next week. Even a week seems so long to wait. He is currently not doing any nebs because the MD wonders if it irritates his airway. I guess if there is any reflux the esophagus might be irritated . I just feel like everything with CF treatment is so aggressive and I don't think we are being aggressive enough.

Anyway, I really appreciate your thoughts. I think I just need to stick with my gut and keep pushing for more tests. My gut tells me there is something else going on here.
 
P

ptmorley

New member
He cultured staphylococcus aureus and serratia marcescens both should have responded to the levaquin he took but we never noticed a difference. I really feel like we are missing something. We are in the "process" of having a bronchoscopy and some ph test to look at relux. It is so frustrating because the scheduling takes weeks and my son is in discomfort and his quality of life is definitely effected. We do have a second opinion with a different CF MD next week. Even a week seems so long to wait. He is currently not doing any nebs because the MD wonders if it irritates his airway. I guess if there is any reflux the esophagus might be irritated . I just feel like everything with CF treatment is so aggressive and I don't think we are being aggressive enough.

Anyway, I really appreciate your thoughts. I think I just need to stick with my gut and keep pushing for more tests. My gut tells me there is something else going on here.
 
P

ptmorley

New member
He cultured staphylococcus aureus and serratia marcescens both should have responded to the levaquin he took but we never noticed a difference. I really feel like we are missing something. We are in the "process" of having a bronchoscopy and some ph test to look at relux. It is so frustrating because the scheduling takes weeks and my son is in discomfort and his quality of life is definitely effected. We do have a second opinion with a different CF MD next week. Even a week seems so long to wait. He is currently not doing any nebs because the MD wonders if it irritates his airway. I guess if there is any reflux the esophagus might be irritated . I just feel like everything with CF treatment is so aggressive and I don't think we are being aggressive enough.

Anyway, I really appreciate your thoughts. I think I just need to stick with my gut and keep pushing for more tests. My gut tells me there is something else going on here.
 
P

ptmorley

New member
He cultured staphylococcus aureus and serratia marcescens both should have responded to the levaquin he took but we never noticed a difference. I really feel like we are missing something. We are in the "process" of having a bronchoscopy and some ph test to look at relux. It is so frustrating because the scheduling takes weeks and my son is in discomfort and his quality of life is definitely effected. We do have a second opinion with a different CF MD next week. Even a week seems so long to wait. He is currently not doing any nebs because the MD wonders if it irritates his airway. I guess if there is any reflux the esophagus might be irritated . I just feel like everything with CF treatment is so aggressive and I don't think we are being aggressive enough.
<br />
<br /> Anyway, I really appreciate your thoughts. I think I just need to stick with my gut and keep pushing for more tests. My gut tells me there is something else going on here.
 
A

ashmomo

New member
Has he been on any nebs recently? My daughter (4 yrs) has been on pulmozyme since she was 2 years old, cough or not. Her baseline is no cough.
I would think they would put him on some kind of neb...even Albuterol to help open the airways. Was there a reason they thought nebs were irritating his airways? Do you do chest PT or VEST treatments?
I would definitely be concerned! Keep pushing for more testing! Did they do more cultures to see if those bacterias went away or did they just assume? Sounds like you really need to be more aggressive. I am sorry he is dealing with this daily and I hope you can get to the bottom of it immediately. Good luck!
 
A

ashmomo

New member
Has he been on any nebs recently? My daughter (4 yrs) has been on pulmozyme since she was 2 years old, cough or not. Her baseline is no cough.
I would think they would put him on some kind of neb...even Albuterol to help open the airways. Was there a reason they thought nebs were irritating his airways? Do you do chest PT or VEST treatments?
I would definitely be concerned! Keep pushing for more testing! Did they do more cultures to see if those bacterias went away or did they just assume? Sounds like you really need to be more aggressive. I am sorry he is dealing with this daily and I hope you can get to the bottom of it immediately. Good luck!
 
A

ashmomo

New member
Has he been on any nebs recently? My daughter (4 yrs) has been on pulmozyme since she was 2 years old, cough or not. Her baseline is no cough.
I would think they would put him on some kind of neb...even Albuterol to help open the airways. Was there a reason they thought nebs were irritating his airways? Do you do chest PT or VEST treatments?
I would definitely be concerned! Keep pushing for more testing! Did they do more cultures to see if those bacterias went away or did they just assume? Sounds like you really need to be more aggressive. I am sorry he is dealing with this daily and I hope you can get to the bottom of it immediately. Good luck!
 
A

ashmomo

New member
Has he been on any nebs recently? My daughter (4 yrs) has been on pulmozyme since she was 2 years old, cough or not. Her baseline is no cough.
I would think they would put him on some kind of neb...even Albuterol to help open the airways. Was there a reason they thought nebs were irritating his airways? Do you do chest PT or VEST treatments?
I would definitely be concerned! Keep pushing for more testing! Did they do more cultures to see if those bacterias went away or did they just assume? Sounds like you really need to be more aggressive. I am sorry he is dealing with this daily and I hope you can get to the bottom of it immediately. Good luck!
 
A

ashmomo

New member
Has he been on any nebs recently? My daughter (4 yrs) has been on pulmozyme since she was 2 years old, cough or not. Her baseline is no cough.
<br />I would think they would put him on some kind of neb...even Albuterol to help open the airways. Was there a reason they thought nebs were irritating his airways? Do you do chest PT or VEST treatments?
<br />I would definitely be concerned! Keep pushing for more testing! Did they do more cultures to see if those bacterias went away or did they just assume? Sounds like you really need to be more aggressive. I am sorry he is dealing with this daily and I hope you can get to the bottom of it immediately. Good luck!
 
W

welshwitch

Guest
ptmorley--

Thanks for the clarification. So it's not just the typical CF cough. That sounds really rough. The fact that it's non productive makes me wonder if allergies could be involved. Maybe there is something in the environment he's living in that is causing it. I assume he's been allergy tested. I agree, sounds like you're being aggressive and you're still working on it. I am sure you will find the answer. It definitely sounds like there is something else going on. Best of luck to you and your son--it'll get better.
 
W

welshwitch

Guest
ptmorley--

Thanks for the clarification. So it's not just the typical CF cough. That sounds really rough. The fact that it's non productive makes me wonder if allergies could be involved. Maybe there is something in the environment he's living in that is causing it. I assume he's been allergy tested. I agree, sounds like you're being aggressive and you're still working on it. I am sure you will find the answer. It definitely sounds like there is something else going on. Best of luck to you and your son--it'll get better.
 
W

welshwitch

Guest
ptmorley--

Thanks for the clarification. So it's not just the typical CF cough. That sounds really rough. The fact that it's non productive makes me wonder if allergies could be involved. Maybe there is something in the environment he's living in that is causing it. I assume he's been allergy tested. I agree, sounds like you're being aggressive and you're still working on it. I am sure you will find the answer. It definitely sounds like there is something else going on. Best of luck to you and your son--it'll get better.
 
W

welshwitch

Guest
ptmorley--

Thanks for the clarification. So it's not just the typical CF cough. That sounds really rough. The fact that it's non productive makes me wonder if allergies could be involved. Maybe there is something in the environment he's living in that is causing it. I assume he's been allergy tested. I agree, sounds like you're being aggressive and you're still working on it. I am sure you will find the answer. It definitely sounds like there is something else going on. Best of luck to you and your son--it'll get better.
 
W

welshwitch

Guest
ptmorley--
<br />
<br />Thanks for the clarification. So it's not just the typical CF cough. That sounds really rough. The fact that it's non productive makes me wonder if allergies could be involved. Maybe there is something in the environment he's living in that is causing it. I assume he's been allergy tested. I agree, sounds like you're being aggressive and you're still working on it. I am sure you will find the answer. It definitely sounds like there is something else going on. Best of luck to you and your son--it'll get better.
 
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