Late diagnosis - Pseudomonas colonization

A

aljrbella

New member
Hello

I was wondering. My son was diagnosed with CF when he was 12 (now 20). He colonized pseudomonas at 14. For those of you with a late diagnosis, were you testing positive for pseudomonas from the beginning, or after diagnosis?

I am wondering if he could have been colonized as a result of the nebulizer therapy or other cf-related care?

Thanks for your thoughts.
AJ
 
A

aljrbella

New member
Hello

I was wondering. My son was diagnosed with CF when he was 12 (now 20). He colonized pseudomonas at 14. For those of you with a late diagnosis, were you testing positive for pseudomonas from the beginning, or after diagnosis?

I am wondering if he could have been colonized as a result of the nebulizer therapy or other cf-related care?

Thanks for your thoughts.
AJ
 
A

aljrbella

New member
Hello
<br />
<br />I was wondering. My son was diagnosed with CF when he was 12 (now 20). He colonized pseudomonas at 14. For those of you with a late diagnosis, were you testing positive for pseudomonas from the beginning, or after diagnosis?
<br />
<br />I am wondering if he could have been colonized as a result of the nebulizer therapy or other cf-related care?
<br />
<br />Thanks for your thoughts.
<br />AJ
 
T

tacos99

New member
Hi AJ, My daughter was diagnosed at age 9, she is 10 now. Prior to diagnosis she had not had a sick day. No bronchitis, pneumonia, asthma, growth problems, nothing. She had a sinus infection that appeared to be fungal and an xray and CT were done. Both were crystal clear. Suspected fungal sinus infections immediately call for a sweat test and here we are. At her first CF visit we were told she had psuedomonas (not colonized). It has been killed and come back but still not mucoid. Now her CT and Xray look very bad. I have often wondered if the neb therapy had anything to do with this. I know this is not a real answer but I wanted to let you know others have your same questions.
 
T

tacos99

New member
Hi AJ, My daughter was diagnosed at age 9, she is 10 now. Prior to diagnosis she had not had a sick day. No bronchitis, pneumonia, asthma, growth problems, nothing. She had a sinus infection that appeared to be fungal and an xray and CT were done. Both were crystal clear. Suspected fungal sinus infections immediately call for a sweat test and here we are. At her first CF visit we were told she had psuedomonas (not colonized). It has been killed and come back but still not mucoid. Now her CT and Xray look very bad. I have often wondered if the neb therapy had anything to do with this. I know this is not a real answer but I wanted to let you know others have your same questions.
 
T

tacos99

New member
Hi AJ, My daughter was diagnosed at age 9, she is 10 now. Prior to diagnosis she had not had a sick day. No bronchitis, pneumonia, asthma, growth problems, nothing. She had a sinus infection that appeared to be fungal and an xray and CT were done. Both were crystal clear. Suspected fungal sinus infections immediately call for a sweat test and here we are. At her first CF visit we were told she had psuedomonas (not colonized). It has been killed and come back but still not mucoid. Now her CT and Xray look very bad. I have often wondered if the neb therapy had anything to do with this. I know this is not a real answer but I wanted to let you know others have your same questions.
 
K

kmaried

New member
Hey AJ,

I wasn't a late diagnosis. I was diagnosed at 3 weeks old... but it was 1982. I didn't colonize pseudomonas until around age 12. At that point, I had never done a nebulizer in my life. Back then they weren't quite as aggressive w/ preventative treatment... all I had were antibiotics when I got sick.

Kris
 
K

kmaried

New member
Hey AJ,

I wasn't a late diagnosis. I was diagnosed at 3 weeks old... but it was 1982. I didn't colonize pseudomonas until around age 12. At that point, I had never done a nebulizer in my life. Back then they weren't quite as aggressive w/ preventative treatment... all I had were antibiotics when I got sick.

Kris
 
K

kmaried

New member
Hey AJ,
<br />
<br />I wasn't a late diagnosis. I was diagnosed at 3 weeks old... but it was 1982. I didn't colonize pseudomonas until around age 12. At that point, I had never done a nebulizer in my life. Back then they weren't quite as aggressive w/ preventative treatment... all I had were antibiotics when I got sick.
<br />
<br />Kris
 
P

pencf

Guest
AJ,

Psuedomonas can be colonized long before it will show in a culture. By the time it shows up on a culture, it might have been there for a bit of time, and just got high enough in the airway to be in the sputum. I am sure that is not what you want to hear, but remember PA is in the environment...most likely we breath it in daily depending on where we live and what our activities are....CF airways can't clear it out like a non-CF airway.
If you are worried about possibly have gotten it by treatments the only way I think that is possible would be in sanitizing the nebs....if they aren't cleaned and dried correctly it could grow in the nebs and in turn infect the airway.
Most PA responds beautifully to antibiotics>>>use them to ease your worry about the colonization...if you can keep it down, it doesn't seem to have as much effect.

BA
Mom of 15 yr old with CF
 
P

pencf

Guest
AJ,

Psuedomonas can be colonized long before it will show in a culture. By the time it shows up on a culture, it might have been there for a bit of time, and just got high enough in the airway to be in the sputum. I am sure that is not what you want to hear, but remember PA is in the environment...most likely we breath it in daily depending on where we live and what our activities are....CF airways can't clear it out like a non-CF airway.
If you are worried about possibly have gotten it by treatments the only way I think that is possible would be in sanitizing the nebs....if they aren't cleaned and dried correctly it could grow in the nebs and in turn infect the airway.
Most PA responds beautifully to antibiotics>>>use them to ease your worry about the colonization...if you can keep it down, it doesn't seem to have as much effect.

BA
Mom of 15 yr old with CF
 
P

pencf

Guest
AJ,
<br />
<br />Psuedomonas can be colonized long before it will show in a culture. By the time it shows up on a culture, it might have been there for a bit of time, and just got high enough in the airway to be in the sputum. I am sure that is not what you want to hear, but remember PA is in the environment...most likely we breath it in daily depending on where we live and what our activities are....CF airways can't clear it out like a non-CF airway.
<br />If you are worried about possibly have gotten it by treatments the only way I think that is possible would be in sanitizing the nebs....if they aren't cleaned and dried correctly it could grow in the nebs and in turn infect the airway.
<br />Most PA responds beautifully to antibiotics>>>use them to ease your worry about the colonization...if you can keep it down, it doesn't seem to have as much effect.
<br />
<br />BA
<br />Mom of 15 yr old with CF
 
J

jdubbs

New member
AJ - Pseudomonas is ubiquitous, so don't worry about where it came from. It was going to happen at some point, in all probability. Honestly, I don't even know exactly when I started culturing it - but I know it's been at least 12 years now. I'm 34, dx at 3.
 
J

jdubbs

New member
AJ - Pseudomonas is ubiquitous, so don't worry about where it came from. It was going to happen at some point, in all probability. Honestly, I don't even know exactly when I started culturing it - but I know it's been at least 12 years now. I'm 34, dx at 3.
 
J

jdubbs

New member
AJ - Pseudomonas is ubiquitous, so don't worry about where it came from. It was going to happen at some point, in all probability. Honestly, I don't even know exactly when I started culturing it - but I know it's been at least 12 years now. I'm 34, dx at 3.
 
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