I NEED YOUR INPUT PLEASE

[Kristen]

I can respond to your first question by sharing my story: I cultured PA for the first time about 10 years ago. The doctor prescribed three months of Cipro and Tobi. It didn't get rid of the PA (but it did give me C. diff!). I continued to do Tobi every other month for a year, then I moved and my new CF doctor took me off Tobi because my lung function was "too high" (I now disagree with that). Then I moved again a year later, and my new doctor put me on Colistin. I was on Colistin (every other month) for years. Then I stopped culturing PA, but my doctor kept me on Colistin for another year, until I got pregnant. I didn't culture PA again until this past spring, when I got a nasty virus that developed into bronchitis. During the time I wasn't culturing PA, I cultured either Staph or normal flora. Now I'm on Cayston and my last two cultures showed normal flora (no PA).
<br />
<br />So, it was like this: PA for 7 years, no PA for three years, PA again, and now no PA again. However, I am getting skeptical of my cultures and discussed this with my doc at clinic last week. I am not a big sputum producer, so my cultures are always throat swabs. EXCEPT the time I got sick this spring and coughed something up in the office - And then PA showed up! So I'm wondering if I really ever got rid of PA. My doctor agrees enough that he is interested in doing a bronch if my ENT wants to do a sinus surgery soon. I took some cups home with me so that I can drive them into his office the next time I cough something up.
<br />
<br />So, to answer your question, I know that PA is hard to get rid of. I'm not sure if you can. My cultures suggest maybe you can, but I am getting skeptical. IF the cultures are correct and I did get rid of it, I can say that I think it happened around the time I started hypertonic saline.

 

[imported_Momto2]

Hi Mary. I cultured PA for years, then it inexplicably went away with no tobi or antibiotics. Been gone for decades.

I hate to say it, but I would not babysit. As a mom, I wouldnt take a chance. I'd go out of my way to help her find someone, but I wouldnt risk exposing my child to PA that might have resistances.

 

[imported_Momto2]

Hi Mary. I cultured PA for years, then it inexplicably went away with no tobi or antibiotics. Been gone for decades.

I hate to say it, but I would not babysit. As a mom, I wouldnt take a chance. I'd go out of my way to help her find someone, but I wouldnt risk exposing my child to PA that might have resistances.

 

[imported_Momto2]

Hi Mary. I cultured PA for years, then it inexplicably went away with no tobi or antibiotics. Been gone for decades.
<br />
<br /> I hate to say it, but I would not babysit. As a mom, I wouldnt take a chance. I'd go out of my way to help her find someone, but I wouldnt risk exposing my child to PA that might have resistances.

 

[cfpatience]

<P>Thanks to all of you who have responded.  I got a call from the clinic today that my sons culture 2 weeks ago does not show PA anymore.  We have 2 more to go.    The culture that he did when the PA first showed was from stuff he caughed up and could have been stuff from his sinuses draining.  The last culture was a swab.  Maybe the swab is more accurate for the lung than caughing???</P>
<P> </P>
<P>The clinic can not seem to give me an answer as to why my germs would be any worse than that of all the children and adults at a day care.  They too could pass PA or worse onto the child.  Any thoughts to that???</P>
<P> </P>
<P>Thank you so much.  Mary</P>

 

[cfpatience]

<P>Thanks to all of you who have responded. I got a call from the clinic today that my sons culture 2 weeks ago does not show PA anymore. We have 2 more to go. The culture that he did when the PA first showed was from stuff he caughed up and could have been stuff from his sinuses draining. The last culture was a swab. Maybe the swab is more accurate for the lung than caughing???</P>
<P></P>
<P>The clinic can not seem to give me an answer as to why my germs would be any worse than that of all the children and adults at a day care. They too could pass PA or worse onto the child. Any thoughts to that???</P>
<P></P>
<P>Thank you so much. Mary</P>

 

[cfpatience]

<P>Thanks to all of you who have responded. I got a call from the clinic today that my sons culture 2 weeks ago does not show PA anymore. We have 2 more to go. The culture that he did when the PA first showed was from stuff he caughed up and could have been stuff from his sinuses draining. The last culture was a swab. Maybe the swab is more accurate for the lung than caughing???</P>
<P></P>
<P>The clinic can not seem to give me an answer as to why my germs would be any worse than that of all the children and adults at a day care. They too could pass PA or worse onto the child. Any thoughts to that???</P>
<P></P>
<P>Thank you so much. Mary<BR></P>

 

[pencf]

That is wonderful your son has never cultured PA!  There is a lot of work going on right now to try to off set the onset of PA in our population and I am glad to hear that it is working.<br><br>Always follow your CF Teams advise and teachings about the disease.  If they say it is considered clear after 3 neg sputum cultures in a row, then that must be correct.<br><br>PA is everywhere, and if the CF airways is off balance because of the CF gene defect then really thinking that a CF patient will NEVER culture PA is, in my opinion, unrealistic.  Your child has already enjoyed over a decade with no visible PA culture, and that means, that decade has keep his airway from being scared by the constant inflammation PA will cause.  That is wonderful.  If he cultures PA has he continues to grow up, there are many antibiotics both inhaled and oral that can keep it back and keep it from affecting the airway in a negative way.  Don't get too caught up on the Reality of PA existing in the airway, just be comforted by the fact that we can treat PA to keep its lasting damage down to the minimum.<br><br>As for watching another CF child I would recommend, DO NOT.  Just because someone doesn't culture a bug, doesn't mean it doesn't live in the airway.  Just the right cough, at the right time, can cross infect another with CF....a chance this Mom would never take.  Plus, I have a child who cultures a few things, and I would never want to feel like I was responsible for infecting another CF patient with her bugs.  There is an argument that Bugs that culture in the CF airway, may be less harmful to one host over another.  Meaning, just because our bug is ours and we do ok with it, doesn't mean that if you get our bug, it might react in a much different fashion.  Just too high a risk in my opinion.<br><br>Good Luck!<br>

 

[pencf]

That is wonderful your son has never cultured PA! There is a lot of work going on right now to try to off set the onset of PA in our population and I am glad to hear that it is working.<br><br>Always follow your CF Teams advise and teachings about the disease. If they say it is considered clear after 3 neg sputum cultures in a row, then that must be correct.<br><br>PA is everywhere, and if the CF airways is off balance because of the CF gene defect then really thinking that a CF patient will NEVER culture PA is, in my opinion, unrealistic. Your child has already enjoyed over a decade with no visible PA culture, and that means, that decade has keep his airway from being scared by the constant inflammation PA will cause. That is wonderful. If he cultures PA has he continues to grow up, there are many antibiotics both inhaled and oral that can keep it back and keep it from affecting the airway in a negative way. Don't get too caught up on the Reality of PA existing in the airway, just be comforted by the fact that we can treat PA to keep its lasting damage down to the minimum.<br><br>As for watching another CF child I would recommend, DO NOT. Just because someone doesn't culture a bug, doesn't mean it doesn't live in the airway. Just the right cough, at the right time, can cross infect another with CF....a chance this Mom would never take. Plus, I have a child who cultures a few things, and I would never want to feel like I was responsible for infecting another CF patient with her bugs. There is an argument that Bugs that culture in the CF airway, may be less harmful to one host over another. Meaning, just because our bug is ours and we do ok with it, doesn't mean that if you get our bug, it might react in a much different fashion. Just too high a risk in my opinion.<br><br>Good Luck!<br>

 

[pencf]

That is wonderful your son has never cultured PA! There is a lot of work going on right now to try to off set the onset of PA in our population and I am glad to hear that it is working.<br><br>Always follow your CF Teams advise and teachings about the disease. If they say it is considered clear after 3 neg sputum cultures in a row, then that must be correct.<br><br>PA is everywhere, and if the CF airways is off balance because of the CF gene defect then really thinking that a CF patient will NEVER culture PA is, in my opinion, unrealistic. Your child has already enjoyed over a decade with no visible PA culture, and that means, that decade has keep his airway from being scared by the constant inflammation PA will cause. That is wonderful. If he cultures PA has he continues to grow up, there are many antibiotics both inhaled and oral that can keep it back and keep it from affecting the airway in a negative way. Don't get too caught up on the Reality of PA existing in the airway, just be comforted by the fact that we can treat PA to keep its lasting damage down to the minimum.<br><br>As for watching another CF child I would recommend, DO NOT. Just because someone doesn't culture a bug, doesn't mean it doesn't live in the airway. Just the right cough, at the right time, can cross infect another with CF....a chance this Mom would never take. Plus, I have a child who cultures a few things, and I would never want to feel like I was responsible for infecting another CF patient with her bugs. There is an argument that Bugs that culture in the CF airway, may be less harmful to one host over another. Meaning, just because our bug is ours and we do ok with it, doesn't mean that if you get our bug, it might react in a much different fashion. Just too high a risk in my opinion.<br><br>Good Luck!<br>

 

[dledwith]

Hey i got pseudomonas around the same time (age 11) for the first time in my life as well. I'm 19 now and still have PA. The trick is to take antibiotics that the specific kind of PA is susceptible to. I'm currently in the hospital for a tune up taking zosyn and ceftazidime for the first time ever. i used to always take tobi, but as it turns out the PA in my system is resistant to tobi. so hopefully i can get rid of this stuff this time. hope this helps.

dan

 

[dledwith]

Hey i got pseudomonas around the same time (age 11) for the first time in my life as well. I'm 19 now and still have PA. The trick is to take antibiotics that the specific kind of PA is susceptible to. I'm currently in the hospital for a tune up taking zosyn and ceftazidime for the first time ever. i used to always take tobi, but as it turns out the PA in my system is resistant to tobi. so hopefully i can get rid of this stuff this time. hope this helps.

dan

 

[dledwith]

Hey i got pseudomonas around the same time (age 11) for the first time in my life as well. I'm 19 now and still have PA. The trick is to take antibiotics that the specific kind of PA is susceptible to. I'm currently in the hospital for a tune up taking zosyn and ceftazidime for the first time ever. i used to always take tobi, but as it turns out the PA in my system is resistant to tobi. so hopefully i can get rid of this stuff this time. hope this helps.
<br />
<br />dan

 

[robocoastie]

my daughter had pseudomonas and put on TOBI once. Since then she has just had recurring staff infections. When it shows up once they don't treat it but when there again at next checkup they antibiotic her. I just wish they'd check her again after antibiotics to see if its gone. I guess I could take her to her normal pediatrician vs. clinic for that part if I wanted. But she never seems sick when she has had it.

 

[robocoastie]

my daughter had pseudomonas and put on TOBI once. Since then she has just had recurring staff infections. When it shows up once they don't treat it but when there again at next checkup they antibiotic her. I just wish they'd check her again after antibiotics to see if its gone. I guess I could take her to her normal pediatrician vs. clinic for that part if I wanted. But she never seems sick when she has had it.

 

[robocoastie]

my daughter had pseudomonas and put on TOBI once. Since then she has just had recurring staff infections. When it shows up once they don't treat it but when there again at next checkup they antibiotic her. I just wish they'd check her again after antibiotics to see if its gone. I guess I could take her to her normal pediatrician vs. clinic for that part if I wanted. But she never seems sick when she has had it.

 

[ymikhale]

my dd (3 y/o) cultured PA twice, once a year so far more or less. I think we eliminated it with TOBI given that it was small count. I think in babies, who have not yet been colonized by PA, you have a pretty good chance of eliminating it as long as you are agressive (meaning reating it regardless of symptoms)

 

[ymikhale]

my dd (3 y/o) cultured PA twice, once a year so far more or less. I think we eliminated it with TOBI given that it was small count. I think in babies, who have not yet been colonized by PA, you have a pretty good chance of eliminating it as long as you are agressive (meaning reating it regardless of symptoms)

 

[ymikhale]

my dd (3 y/o) cultured PA twice, once a year so far more or less. I think we eliminated it with TOBI given that it was small count. I think in babies, who have not yet been colonized by PA, you have a pretty good chance of eliminating it as long as you are agressive (meaning reating it regardless of symptoms)

 

[Hardak]

Sadly the Pseudomonas is likely to be around for the long hall. The doc's are likely looking at the tobi as a month on month off kinda of thing. they also may consider it a one shot deal. The matter of 3 rounds then off provided the lab work comes back looking peachy really is subjective. CF patents tend to get and retain at least small pockets/levels of infection in there system there entire life.

As to where your little one picked up the Pseudomonas its hard to say. In this case its so prevalent in the environment that you can't test an air sample and not find at least some level of Pseudomonas in it.

As to the baby sitting.. her house would likely be ok. And I wouldn't put the two kids together for long at all. Anybody with an active Pseudomonas infection is likely to have a higher level of Pseudomonas around them in the air. After all I would expect they are exhaling Pseudomonas spores with every breath.

On the up side, Pseudomonas generally don't do vary well growth wise in the body. I've cultured nearly strait Pseudomonas all my life and most of my life hit antibiotics once a year. Or at least as I can recall though my teens & adult hood. Biggest thing is get the kid producing phlegm and spitting it. Watch for changes in his cough/phlegm. His phlegm will likely thicken before he shows other signs of infection with a reoccurrence.