I NEED YOUR INPUT PLEASE

Hardak

New member
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.
 

Hardak

New member
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.
<br />
<br />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.
<br />
<br />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.
<br />
<br />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.
 
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patrish22

Guest
It definately varies with the individual. Both my daughters (age 26) cultured on and off for PA for years. My son (24) still has not cultured PA, but has cultured Burkholderia Cepecia, (which the girls have not) and they all lived together.  Go figure. I think it would be great if you could help your friend. What a comfort for her to know someone who understands CF, the meds and equipment will be taking care if her child. Bless you!
 
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patrish22

Guest
It definately varies with the individual. Both my daughters (age 26)cultured on and offfor PA for years. My son (24)still has not cultured PA, but has cultured Burkholderia Cepecia, (which the girls have not) and they all lived together. Go figure. I think it would be great if you could help your friend. What a comfort for herto know someone who understands CF, the meds and equipment will be taking care if her child. Bless you!
 
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patrish22

Guest
<BR>It definately varies with the individual. Both my daughters (age 26)cultured on and offfor PA for years. My son (24)still has not cultured PA, but has cultured Burkholderia Cepecia, (which the girls have not) and they all lived together. Go figure. I think it would be great if you could help your friend. What a comfort for herto know someone who understands CF, the meds and equipment will be taking care if her child. Bless you!
 

Kristen

New member
My understanding is that PA is hard to get rid of because it forms a sticky matrix that is hard for antibiotics to thoroughly penetrate. I think that the thought is, if you catch it early enough, you may be able to get rid of it by giving antibiotics before the matrix is formed.

According to my CF clinic, a swab is less accurate that than something that is cough up. I also read a study that showed that a negative throat swab can often be a false negative (but a positive throat swab is usually correct), and that something coughed up is more accurate.
 

Kristen

New member
My understanding is that PA is hard to get rid of because it forms a sticky matrix that is hard for antibiotics to thoroughly penetrate. I think that the thought is, if you catch it early enough, you may be able to get rid of it by giving antibiotics before the matrix is formed.

According to my CF clinic, a swab is less accurate that than something that is cough up. I also read a study that showed that a negative throat swab can often be a false negative (but a positive throat swab is usually correct), and that something coughed up is more accurate.
 

Kristen

New member
My understanding is that PA is hard to get rid of because it forms a sticky matrix that is hard for antibiotics to thoroughly penetrate. I think that the thought is, if you catch it early enough, you may be able to get rid of it by giving antibiotics before the matrix is formed.
<br />
<br />According to my CF clinic, a swab is less accurate that than something that is cough up. I also read a study that showed that a negative throat swab can often be a false negative (but a positive throat swab is usually correct), and that something coughed up is more accurate.
 

Jeanette40

New member
Hi x that's great news that your son got a negative swab.  I know a lot of people are saying it's here for the long haul, but don't despair. I got PA in 2001 - took 9 months to clear but then didn't get it back until Jan 2010.  Then I was given 2 IV drugs for 2 weeks, and nebulized colymicin and oral cipro for 3 months, did the job, no PA since.  I think once it colonises you are in a bit more trouble, as what has been already said it forms a protective layer around itself and hides from your immune system and antibiotics.<div>Good luck xx<br><div><br></div><div><br></div></div>
 

Jeanette40

New member
Hi x that's great news that your son got a negative swab. I know a lot of people are saying it's here for the long haul, but don't despair. I got PA in 2001 - took 9 months to clear but then didn't get it back until Jan 2010. Then I was given 2 IV drugs for 2 weeks, and nebulized colymicin and oral cipro for 3 months, did the job, no PA since. I think once it colonises you are in a bit more trouble, as what has been already said it forms a protective layer around itself and hides from your immune system and antibiotics.Good luck xx<br><br><br>
 

Jeanette40

New member
Hi x that's great news that your son got a negative swab. I know a lot of people are saying it's here for the long haul, but don't despair. I got PA in 2001 - took 9 months to clear but then didn't get it back until Jan 2010. Then I was given 2 IV drugs for 2 weeks, and nebulized colymicin and oral cipro for 3 months, did the job, no PA since. I think once it colonises you are in a bit more trouble, as what has been already said it forms a protective layer around itself and hides from your immune system and antibiotics.Good luck xx<br><br><br>
 

dolphinswim

New member
<P>Hello, my name is Jared.  I am 11 and I also started culturing PA last december when I turned 11. For a little while last spring, I had a break from PA, but then I began culturing it again. So to answer your question, it can come and go.  It is vital that you can do all the therapy that is possible. Also, my CF team has been treating this bacteria aggressivly, and it can help.  I am glad that your son stopped culturing PA.</P>
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<P>Life is great, don't waste it.</P>
 

dolphinswim

New member
<P>Hello,my name is Jared. I am 11 and I also startedculturing PA last december when I turned 11. For a little while last spring, I had a break from PA, but then Ibegan culturing it again. So to answer your question, it can come and go. It is vital that you can do all the therapy that is possible.Also, my CF team has been treating this bacteria aggressivly, and it can help.I am glad that your son stopped culturing PA.</P>
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<P>Life is great, don't waste it.</P>
 

dolphinswim

New member
<P>Hello,my name is Jared. I am 11 and I also startedculturing PA last december when I turned 11. For a little while last spring, I had a break from PA, but then Ibegan culturing it again. So to answer your question, it can come and go. It is vital that you can do all the therapy that is possible.Also, my CF team has been treating this bacteria aggressivly, and it can help.I am glad that your son stopped culturing PA.</P>
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<P>Life is great, don't waste it.<BR></P>
 

maryiris

New member
Ok. I have had PA for years. There is no getting rid of it. It does not go away. My CF specialist explained the culture/growth/antibiotic to me like this.

I cough up mucus. It is cultured and shows sensitive to tobi. He uses tobi to treat it. Next culture shows a resistance to tobi - next one a sensitivity to tobi. This is why. The PA develops many strains of itself in your lungs. Each time you cough up a sample, there is no saying where it came from. So that means that whatever it grows, and whatever it shows a sensitivity to, the drugs will have an affect on that area. So Doc's thoughts are - we will never get a sample of every strain that is taking up residence in your lung - we do the culture - we determine that antibiotic "x" will work on this sample - we use it to kill however much of that strain is hanging out.

Make sense?

We treat the PA based on what my sputum sample showed a sensitivity to...which could change the next time based on where the sample comes from in the lung.

So you could test negative a few times in a row - that only says that the particular sample tested that time - came from an area of the lung that was still PA free. The PA could..and probably is...still hanging out like it does - just wasn't a part of that sample produced for culture.

Hope that helps.
 

maryiris

New member
Ok. I have had PA for years. There is no getting rid of it. It does not go away. My CF specialist explained the culture/growth/antibiotic to me like this.

I cough up mucus. It is cultured and shows sensitive to tobi. He uses tobi to treat it. Next culture shows a resistance to tobi - next one a sensitivity to tobi. This is why. The PA develops many strains of itself in your lungs. Each time you cough up a sample, there is no saying where it came from. So that means that whatever it grows, and whatever it shows a sensitivity to, the drugs will have an affect on that area. So Doc's thoughts are - we will never get a sample of every strain that is taking up residence in your lung - we do the culture - we determine that antibiotic "x" will work on this sample - we use it to kill however much of that strain is hanging out.

Make sense?

We treat the PA based on what my sputum sample showed a sensitivity to...which could change the next time based on where the sample comes from in the lung.

So you could test negative a few times in a row - that only says that the particular sample tested that time - came from an area of the lung that was still PA free. The PA could..and probably is...still hanging out like it does - just wasn't a part of that sample produced for culture.

Hope that helps.
 

maryiris

New member
Ok. I have had PA for years. There is no getting rid of it. It does not go away. My CF specialist explained the culture/growth/antibiotic to me like this.
<br />
<br />I cough up mucus. It is cultured and shows sensitive to tobi. He uses tobi to treat it. Next culture shows a resistance to tobi - next one a sensitivity to tobi. This is why. The PA develops many strains of itself in your lungs. Each time you cough up a sample, there is no saying where it came from. So that means that whatever it grows, and whatever it shows a sensitivity to, the drugs will have an affect on that area. So Doc's thoughts are - we will never get a sample of every strain that is taking up residence in your lung - we do the culture - we determine that antibiotic "x" will work on this sample - we use it to kill however much of that strain is hanging out.
<br />
<br />Make sense?
<br />
<br />We treat the PA based on what my sputum sample showed a sensitivity to...which could change the next time based on where the sample comes from in the lung.
<br />
<br />So you could test negative a few times in a row - that only says that the particular sample tested that time - came from an area of the lung that was still PA free. The PA could..and probably is...still hanging out like it does - just wasn't a part of that sample produced for culture.
<br />
<br />Hope that helps.
 
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