Can anyone translate doctor speak?

[RebekahsMom]

It was either the end of 2006, or the beginning of 2007, when Bek cultured mucoid and non-mucoid pseudo. She was put on tobi and was doing it every single day for about a year and a half. They finally ordered it 28 on/off, and while she was in the hospital this last time, it was determined to stop it altogether. Her doc actually came in and asked me when she went on it, and if she had cultured pseudo. They couldn't find anything in her records regarding it. When we went to her last appointment, her culture came back normal flora, so nothing at the moment. And Bek's doc WON'T do a bronch unless she cultures something that abt's aren't taking care of.

 

[RebekahsMom]

It was either the end of 2006, or the beginning of 2007, when Bek cultured mucoid and non-mucoid pseudo. She was put on tobi and was doing it every single day for about a year and a half. They finally ordered it 28 on/off, and while she was in the hospital this last time, it was determined to stop it altogether. Her doc actually came in and asked me when she went on it, and if she had cultured pseudo. They couldn't find anything in her records regarding it. When we went to her last appointment, her culture came back normal flora, so nothing at the moment. And Bek's doc WON'T do a bronch unless she cultures something that abt's aren't taking care of.

 

[RebekahsMom]

It was either the end of 2006, or the beginning of 2007, when Bek cultured mucoid and non-mucoid pseudo. She was put on tobi and was doing it every single day for about a year and a half. They finally ordered it 28 on/off, and while she was in the hospital this last time, it was determined to stop it altogether. Her doc actually came in and asked me when she went on it, and if she had cultured pseudo. They couldn't find anything in her records regarding it. When we went to her last appointment, her culture came back normal flora, so nothing at the moment. And Bek's doc WON'T do a bronch unless she cultures something that abt's aren't taking care of.

 

[RebekahsMom]

It was either the end of 2006, or the beginning of 2007, when Bek cultured mucoid and non-mucoid pseudo. She was put on tobi and was doing it every single day for about a year and a half. They finally ordered it 28 on/off, and while she was in the hospital this last time, it was determined to stop it altogether. Her doc actually came in and asked me when she went on it, and if she had cultured pseudo. They couldn't find anything in her records regarding it. When we went to her last appointment, her culture came back normal flora, so nothing at the moment. And Bek's doc WON'T do a bronch unless she cultures something that abt's aren't taking care of.

 

[RebekahsMom]

It was either the end of 2006, or the beginning of 2007, when Bek cultured mucoid and non-mucoid pseudo. She was put on tobi and was doing it every single day for about a year and a half. They finally ordered it 28 on/off, and while she was in the hospital this last time, it was determined to stop it altogether. Her doc actually came in and asked me when she went on it, and if she had cultured pseudo. They couldn't find anything in her records regarding it. When we went to her last appointment, her culture came back normal flora, so nothing at the moment. And Bek's doc WON'T do a bronch unless she cultures something that abt's aren't taking care of.

 

[NYCLawGirl]

I'm sure everyone knows this already, but negative cultures don't mean that bacteria is gone, necessarily. A bronch is a better (albeit risky) way to check, but even then the bacteria can sometimes "hide" in a part of the lungs that doesn't really get sampled. It's really tough to eradicate PA altogether, which isn't to say that it can't be done, just that it's not easy.

As for the treatment options, alternating abx isn't uncommon. I'm not sure how often it's done in a younger child who is asymptomatic, but it's a fairly common routine among older CFers to try and keep the flare-ups/exacerbations as few and far between as possible. I know a lot of CFers who have been alternating TOBI and colistin and who will likely now swap out one or the other for the new Cayston. Inhaled abx are slightly different than IV compounds or orals when it comes to resistance (there's less concern about that) so your doctor might think this is the best way to avoid an exacerbation that would require stronger drugs. You should definitely talk to him/her if you're uncomfortable with or have questions about the plan.

The oral cipro is every other month or all the time? I have to admit that sounds a little strange to me -- I rarely hear of cipro being used all the time. Even I don't do that, and I have some pretty severe infection cycles.

 

[NYCLawGirl]

I'm sure everyone knows this already, but negative cultures don't mean that bacteria is gone, necessarily. A bronch is a better (albeit risky) way to check, but even then the bacteria can sometimes "hide" in a part of the lungs that doesn't really get sampled. It's really tough to eradicate PA altogether, which isn't to say that it can't be done, just that it's not easy.

As for the treatment options, alternating abx isn't uncommon. I'm not sure how often it's done in a younger child who is asymptomatic, but it's a fairly common routine among older CFers to try and keep the flare-ups/exacerbations as few and far between as possible. I know a lot of CFers who have been alternating TOBI and colistin and who will likely now swap out one or the other for the new Cayston. Inhaled abx are slightly different than IV compounds or orals when it comes to resistance (there's less concern about that) so your doctor might think this is the best way to avoid an exacerbation that would require stronger drugs. You should definitely talk to him/her if you're uncomfortable with or have questions about the plan.

The oral cipro is every other month or all the time? I have to admit that sounds a little strange to me -- I rarely hear of cipro being used all the time. Even I don't do that, and I have some pretty severe infection cycles.

 

[NYCLawGirl]

I'm sure everyone knows this already, but negative cultures don't mean that bacteria is gone, necessarily. A bronch is a better (albeit risky) way to check, but even then the bacteria can sometimes "hide" in a part of the lungs that doesn't really get sampled. It's really tough to eradicate PA altogether, which isn't to say that it can't be done, just that it's not easy.

As for the treatment options, alternating abx isn't uncommon. I'm not sure how often it's done in a younger child who is asymptomatic, but it's a fairly common routine among older CFers to try and keep the flare-ups/exacerbations as few and far between as possible. I know a lot of CFers who have been alternating TOBI and colistin and who will likely now swap out one or the other for the new Cayston. Inhaled abx are slightly different than IV compounds or orals when it comes to resistance (there's less concern about that) so your doctor might think this is the best way to avoid an exacerbation that would require stronger drugs. You should definitely talk to him/her if you're uncomfortable with or have questions about the plan.

The oral cipro is every other month or all the time? I have to admit that sounds a little strange to me -- I rarely hear of cipro being used all the time. Even I don't do that, and I have some pretty severe infection cycles.

 

[NYCLawGirl]

I'm sure everyone knows this already, but negative cultures don't mean that bacteria is gone, necessarily. A bronch is a better (albeit risky) way to check, but even then the bacteria can sometimes "hide" in a part of the lungs that doesn't really get sampled. It's really tough to eradicate PA altogether, which isn't to say that it can't be done, just that it's not easy.

As for the treatment options, alternating abx isn't uncommon. I'm not sure how often it's done in a younger child who is asymptomatic, but it's a fairly common routine among older CFers to try and keep the flare-ups/exacerbations as few and far between as possible. I know a lot of CFers who have been alternating TOBI and colistin and who will likely now swap out one or the other for the new Cayston. Inhaled abx are slightly different than IV compounds or orals when it comes to resistance (there's less concern about that) so your doctor might think this is the best way to avoid an exacerbation that would require stronger drugs. You should definitely talk to him/her if you're uncomfortable with or have questions about the plan.

The oral cipro is every other month or all the time? I have to admit that sounds a little strange to me -- I rarely hear of cipro being used all the time. Even I don't do that, and I have some pretty severe infection cycles.

 

[NYCLawGirl]

I'm sure everyone knows this already, but negative cultures don't mean that bacteria is gone, necessarily. A bronch is a better (albeit risky) way to check, but even then the bacteria can sometimes "hide" in a part of the lungs that doesn't really get sampled. It's really tough to eradicate PA altogether, which isn't to say that it can't be done, just that it's not easy.
<br />
<br />As for the treatment options, alternating abx isn't uncommon. I'm not sure how often it's done in a younger child who is asymptomatic, but it's a fairly common routine among older CFers to try and keep the flare-ups/exacerbations as few and far between as possible. I know a lot of CFers who have been alternating TOBI and colistin and who will likely now swap out one or the other for the new Cayston. Inhaled abx are slightly different than IV compounds or orals when it comes to resistance (there's less concern about that) so your doctor might think this is the best way to avoid an exacerbation that would require stronger drugs. You should definitely talk to him/her if you're uncomfortable with or have questions about the plan.
<br />
<br />The oral cipro is every other month or all the time? I have to admit that sounds a little strange to me -- I rarely hear of cipro being used all the time. Even I don't do that, and I have some pretty severe infection cycles.

 

[Ratatosk]

Good point, Piper. DS has never, ever been able to provide a sputum sample. So they still do a throat swab if he can't hack up something for them.

He's pretty much been on Tobi every other month since he was 3 months old.

 

[Ratatosk]

Good point, Piper. DS has never, ever been able to provide a sputum sample. So they still do a throat swab if he can't hack up something for them.

He's pretty much been on Tobi every other month since he was 3 months old.

 

[Ratatosk]

Good point, Piper. DS has never, ever been able to provide a sputum sample. So they still do a throat swab if he can't hack up something for them.

He's pretty much been on Tobi every other month since he was 3 months old.

 

[Ratatosk]

Good point, Piper. DS has never, ever been able to provide a sputum sample. So they still do a throat swab if he can't hack up something for them.

He's pretty much been on Tobi every other month since he was 3 months old.

 

[Ratatosk]

Good point, Piper. DS has never, ever been able to provide a sputum sample. So they still do a throat swab if he can't hack up something for them.
<br />
<br />He's pretty much been on Tobi every other month since he was 3 months old.

 

[rosesixtyfive]

Hello, all,
Thanks for responding to my post. Sam is just on the Cipro for 10 days,and then they are talking about alternating Cayston and Tobi for a very long time. We go to talk to them again on Thursday. Sam goes to a certified CF clinic and there are several pulmonologists that rotate there. There is one pulmonologist in particular who we really like, but we don't always get to see him and he is not the one who made the comment. Sometimes you ask for clarification, and you just don't understand the response. Doctors forget to look at things from parents' eyes sometimes.
Thanks again!
rosesixtyfive

 

[rosesixtyfive]

Hello, all,
Thanks for responding to my post. Sam is just on the Cipro for 10 days,and then they are talking about alternating Cayston and Tobi for a very long time. We go to talk to them again on Thursday. Sam goes to a certified CF clinic and there are several pulmonologists that rotate there. There is one pulmonologist in particular who we really like, but we don't always get to see him and he is not the one who made the comment. Sometimes you ask for clarification, and you just don't understand the response. Doctors forget to look at things from parents' eyes sometimes.
Thanks again!
rosesixtyfive

 

[rosesixtyfive]

Hello, all,
Thanks for responding to my post. Sam is just on the Cipro for 10 days,and then they are talking about alternating Cayston and Tobi for a very long time. We go to talk to them again on Thursday. Sam goes to a certified CF clinic and there are several pulmonologists that rotate there. There is one pulmonologist in particular who we really like, but we don't always get to see him and he is not the one who made the comment. Sometimes you ask for clarification, and you just don't understand the response. Doctors forget to look at things from parents' eyes sometimes.
Thanks again!
rosesixtyfive

 

[rosesixtyfive]

Hello, all,
Thanks for responding to my post. Sam is just on the Cipro for 10 days,and then they are talking about alternating Cayston and Tobi for a very long time. We go to talk to them again on Thursday. Sam goes to a certified CF clinic and there are several pulmonologists that rotate there. There is one pulmonologist in particular who we really like, but we don't always get to see him and he is not the one who made the comment. Sometimes you ask for clarification, and you just don't understand the response. Doctors forget to look at things from parents' eyes sometimes.
Thanks again!
rosesixtyfive

 

[rosesixtyfive]

Hello, all,
<br />Thanks for responding to my post. Sam is just on the Cipro for 10 days,and then they are talking about alternating Cayston and Tobi for a very long time. We go to talk to them again on Thursday. Sam goes to a certified CF clinic and there are several pulmonologists that rotate there. There is one pulmonologist in particular who we really like, but we don't always get to see him and he is not the one who made the comment. Sometimes you ask for clarification, and you just don't understand the response. Doctors forget to look at things from parents' eyes sometimes.
<br />Thanks again!
<br />rosesixtyfive