First Culture of Pseudomonas?

[ktsmom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SadiesMom</b></i>
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<br />The doctor said that they've been finding that 2 months in a row of Tobi works just as effectively as a year.</end quote>
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<br />I have not heard of this, and I wish I knew if this was an example of different centers with different treatment protocols versus a well-researched position that will become the new standard of care.
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<br /><div class="FTQUOTE"><begin quote>
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<br />She's asymptomatic, and the doctor said that years ago they wouldn't have even treated her if she wasn't expressing any symptoms of PA.</end quote>
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<br />Yes, but I'm not sure why your doc thinks that is a relevant statement to make to you. The fact is that they are being more agressive with treating PA, which is perhaps part of the reason that people are living longer?
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<br />My bottom line is that I continue to be frustrated with differing treatment standards from accredited centers. How are parents and patients supposed to make sure they are receiving the best care? I hope you don't mind my venting on your thread. Maybe some others will chime in with their most recent experiences. In the mean time we are still cycling TOBI over 3 years since DD's first and only PA culture.

 

[SadiesMom]

I don't mind at all. From everything I've read here, it sounded like a strange thing to say and like maybe we were being lazy about treating her. This is still so new to me, that sometimes I have trouble not blindly trusting whatever the doctor says. They have an appointment this wednesday, so I'm going to ask her more questions then. On the one hand, I hate pumping Sadie fulls of meds but on the other, I don't want it to become a problem later on. *sigh*

 

[SadiesMom]

I don't mind at all. From everything I've read here, it sounded like a strange thing to say and like maybe we were being lazy about treating her. This is still so new to me, that sometimes I have trouble not blindly trusting whatever the doctor says. They have an appointment this wednesday, so I'm going to ask her more questions then. On the one hand, I hate pumping Sadie fulls of meds but on the other, I don't want it to become a problem later on. *sigh*

 

[SadiesMom]

I don't mind at all. From everything I've read here, it sounded like a strange thing to say and like maybe we were being lazy about treating her. This is still so new to me, that sometimes I have trouble not blindly trusting whatever the doctor says. They have an appointment this wednesday, so I'm going to ask her more questions then. On the one hand, I hate pumping Sadie fulls of meds but on the other, I don't want it to become a problem later on. *sigh*

 

[ktsmom]

I know, it should be okay to trust our docs! <img src="i/expressions/face-icon-small-smile.gif" border="0">

It is good to be as informed as possible, but that can lead to frustration for you and also for your doc if you question them. I admire you for seeking additional information. Maybe at your next appointment they can point you to some studies or other info that supports their position.

 

[ktsmom]

I know, it should be okay to trust our docs! <img src="i/expressions/face-icon-small-smile.gif" border="0">

It is good to be as informed as possible, but that can lead to frustration for you and also for your doc if you question them. I admire you for seeking additional information. Maybe at your next appointment they can point you to some studies or other info that supports their position.

 

[ktsmom]

I know, it should be okay to trust our docs! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />It is good to be as informed as possible, but that can lead to frustration for you and also for your doc if you question them. I admire you for seeking additional information. Maybe at your next appointment they can point you to some studies or other info that supports their position.

 

[ymikhale]

Since I posted in this thread in response to your question, my dd has cultured PA again. She was also assymptomatic.

Last year when she had PA for the first time, we did culture her every month, just after finishing the first round of TOBI and on off months as well(she did 3 rounds). Shortly after I went to consult with a well known professor in Israel and he said that it was important to culture often, 3 months is really a minimum, they do it monthly.

Since then I cultured her every month and I am glad I did: she did not have any PA in her 11/08 culture, but had 10^3 in her 11/30 culture.

As to treating vs not treating, from what I read even though the best treatment plan has not been officially adopted, there is a concensus that treating is better than leaving it alone when it comes to reinfection. There is a ppt presentation from 2009 NACFC on the subject(sorry, don't have the link but you can google it)that presents the data from key studies.

 

[ymikhale]

Since I posted in this thread in response to your question, my dd has cultured PA again. She was also assymptomatic.

Last year when she had PA for the first time, we did culture her every month, just after finishing the first round of TOBI and on off months as well(she did 3 rounds). Shortly after I went to consult with a well known professor in Israel and he said that it was important to culture often, 3 months is really a minimum, they do it monthly.

Since then I cultured her every month and I am glad I did: she did not have any PA in her 11/08 culture, but had 10^3 in her 11/30 culture.

As to treating vs not treating, from what I read even though the best treatment plan has not been officially adopted, there is a concensus that treating is better than leaving it alone when it comes to reinfection. There is a ppt presentation from 2009 NACFC on the subject(sorry, don't have the link but you can google it)that presents the data from key studies.

 

[ymikhale]

Since I posted in this thread in response to your question, my dd has cultured PA again. She was also assymptomatic.
<br />
<br />Last year when she had PA for the first time, we did culture her every month, just after finishing the first round of TOBI and on off months as well(she did 3 rounds). Shortly after I went to consult with a well known professor in Israel and he said that it was important to culture often, 3 months is really a minimum, they do it monthly.
<br />
<br />Since then I cultured her every month and I am glad I did: she did not have any PA in her 11/08 culture, but had 10^3 in her 11/30 culture.
<br />
<br />As to treating vs not treating, from what I read even though the best treatment plan has not been officially adopted, there is a concensus that treating is better than leaving it alone when it comes to reinfection. There is a ppt presentation from 2009 NACFC on the subject(sorry, don't have the link but you can google it)that presents the data from key studies.