Pseudomonas - protocol for follow up culture

[angelsmom]

My daughter finished 28 days on Tobi at the end of July. When the nurse called me with the culture results and instructions for Tobi/Cipro, I specifically asked when we should return for a repeat throat culture. The nurse told me to wait about a month, give them a call, and they would have us stop in for a culture.

I called the clinic today to verify this and to see what day would be best for us to come in at the end of August. I spoke with a different nurse, who had consulted the doctor, and she said that protocol is to re-check at the next routine clinic visit, which for us is the first week in October. I told this nurse what the other nurse had said, about coming in a month after she was off the meds. The second nurse was surprised to hear that the other nurse had told me this. I pushed the matter, stressing that I am trying to go along with the "aggressive" approach this clinic is known for and my thought is better to check sooner rather than later, in case this round of treatment didn't hit it hard enough. End result - We will be going at the end of August for the repeat culture.

I should mention that the first nurse said to wait about a month because it wouldn't make sense to test any earlier since the antibiotics would still be in the system working. It wouldn't give a true result. The second nurse gave me this same explanation, only she said that the antibiotics would still be having an effect up to three months later.

I am left to wonder why two nurses from the same clinic would give me such differing information if there is a "protocol" to follow? For those that have cultured PA and done Tobi/Cipro -- how soon after finishing do you repeat the culture?

Any insight would be greatly appreciated!

Sandra

 

[angelsmom]

My daughter finished 28 days on Tobi at the end of July. When the nurse called me with the culture results and instructions for Tobi/Cipro, I specifically asked when we should return for a repeat throat culture. The nurse told me to wait about a month, give them a call, and they would have us stop in for a culture.

I called the clinic today to verify this and to see what day would be best for us to come in at the end of August. I spoke with a different nurse, who had consulted the doctor, and she said that protocol is to re-check at the next routine clinic visit, which for us is the first week in October. I told this nurse what the other nurse had said, about coming in a month after she was off the meds. The second nurse was surprised to hear that the other nurse had told me this. I pushed the matter, stressing that I am trying to go along with the "aggressive" approach this clinic is known for and my thought is better to check sooner rather than later, in case this round of treatment didn't hit it hard enough. End result - We will be going at the end of August for the repeat culture.

I should mention that the first nurse said to wait about a month because it wouldn't make sense to test any earlier since the antibiotics would still be in the system working. It wouldn't give a true result. The second nurse gave me this same explanation, only she said that the antibiotics would still be having an effect up to three months later.

I am left to wonder why two nurses from the same clinic would give me such differing information if there is a "protocol" to follow? For those that have cultured PA and done Tobi/Cipro -- how soon after finishing do you repeat the culture?

Any insight would be greatly appreciated!

Sandra

 

[angelsmom]

My daughter finished 28 days on Tobi at the end of July. When the nurse called me with the culture results and instructions for Tobi/Cipro, I specifically asked when we should return for a repeat throat culture. The nurse told me to wait about a month, give them a call, and they would have us stop in for a culture.
<br />
<br />I called the clinic today to verify this and to see what day would be best for us to come in at the end of August. I spoke with a different nurse, who had consulted the doctor, and she said that protocol is to re-check at the next routine clinic visit, which for us is the first week in October. I told this nurse what the other nurse had said, about coming in a month after she was off the meds. The second nurse was surprised to hear that the other nurse had told me this. I pushed the matter, stressing that I am trying to go along with the "aggressive" approach this clinic is known for and my thought is better to check sooner rather than later, in case this round of treatment didn't hit it hard enough. End result - We will be going at the end of August for the repeat culture.
<br />
<br />I should mention that the first nurse said to wait about a month because it wouldn't make sense to test any earlier since the antibiotics would still be in the system working. It wouldn't give a true result. The second nurse gave me this same explanation, only she said that the antibiotics would still be having an effect up to three months later.
<br />
<br />I am left to wonder why two nurses from the same clinic would give me such differing information if there is a "protocol" to follow? For those that have cultured PA and done Tobi/Cipro -- how soon after finishing do you repeat the culture?
<br />
<br />Any insight would be greatly appreciated!
<br />
<br />Sandra

 

[websterhome]

I've been through nearly the same frustration with my daughter. We were so eager to get the result saying that she was free from PA. It seems like they were culturing her about monthly around that time to follow up on the treatment. The gray area was with how many coursesbof TOBI they wanted to put her through even though the PA was gone after one course. They ended up treating one month then a month off then a month on & done (so 2 months TOBI total, but only the initial 2 weeks or so of cipro). I hope this helps! As a nurse myself I know just how easy it is to get differing info from 2 nurses.., one may feel they "probably" know the answer & want to tell you something while another knows a bit more thoroughly - unfortunately it happens all too often. <img src="i/expressions/face-icon-small-sad.gif" border="0"> good luck with it all!!

 

[websterhome]

I've been through nearly the same frustration with my daughter. We were so eager to get the result saying that she was free from PA. It seems like they were culturing her about monthly around that time to follow up on the treatment. The gray area was with how many coursesbof TOBI they wanted to put her through even though the PA was gone after one course. They ended up treating one month then a month off then a month on & done (so 2 months TOBI total, but only the initial 2 weeks or so of cipro). I hope this helps! As a nurse myself I know just how easy it is to get differing info from 2 nurses.., one may feel they "probably" know the answer & want to tell you something while another knows a bit more thoroughly - unfortunately it happens all too often. <img src="i/expressions/face-icon-small-sad.gif" border="0"> good luck with it all!!

 

[websterhome]

I've been through nearly the same frustration with my daughter. We were so eager to get the result saying that she was free from PA. It seems like they were culturing her about monthly around that time to follow up on the treatment. The gray area was with how many coursesbof TOBI they wanted to put her through even though the PA was gone after one course. They ended up treating one month then a month off then a month on & done (so 2 months TOBI total, but only the initial 2 weeks or so of cipro). I hope this helps! As a nurse myself I know just how easy it is to get differing info from 2 nurses.., one may feel they "probably" know the answer & want to tell you something while another knows a bit more thoroughly - unfortunately it happens all too often. <img src="i/expressions/face-icon-small-sad.gif" border="0"> good luck with it all!!

 

[ymikhale]

my dd cultured PA when she was 15 mo. She did 3 courses of Tobi (with 2 weeks of Cipro in the beginning) even though it was gone after the first one (she had a very small colony of PA). While we were doing Tobi I was told by the doctor to do culture every month.

Even though we have finished Tobi long time ago ( a year) I still culture her once a month (we have a possibility to do it) b/c it makes sense that the longer you are without Tobi, the higher the probability that PA comes back.

Also I read on the European consensus report that ideally patients should be cultured every month, 3 months is really a minimum.

With all these arguments and some persistence I managed to convince my doctor to do monthly cultures (the nurse is still pissed off b/c she has to go look up the results..)

 

[ymikhale]

my dd cultured PA when she was 15 mo. She did 3 courses of Tobi (with 2 weeks of Cipro in the beginning) even though it was gone after the first one (she had a very small colony of PA). While we were doing Tobi I was told by the doctor to do culture every month.

Even though we have finished Tobi long time ago ( a year) I still culture her once a month (we have a possibility to do it) b/c it makes sense that the longer you are without Tobi, the higher the probability that PA comes back.

Also I read on the European consensus report that ideally patients should be cultured every month, 3 months is really a minimum.

With all these arguments and some persistence I managed to convince my doctor to do monthly cultures (the nurse is still pissed off b/c she has to go look up the results..)

 

[ymikhale]

my dd cultured PA when she was 15 mo. She did 3 courses of Tobi (with 2 weeks of Cipro in the beginning) even though it was gone after the first one (she had a very small colony of PA). While we were doing Tobi I was told by the doctor to do culture every month.
<br />
<br />Even though we have finished Tobi long time ago ( a year) I still culture her once a month (we have a possibility to do it) b/c it makes sense that the longer you are without Tobi, the higher the probability that PA comes back.
<br />
<br />Also I read on the European consensus report that ideally patients should be cultured every month, 3 months is really a minimum.
<br />
<br />With all these arguments and some persistence I managed to convince my doctor to do monthly cultures (the nurse is still pissed off b/c she has to go look up the results..)
<br />

 

[angelsmom]

Thank you both for your replies, they do help!

I have often wondered why we only culture every three months, especially if a culture comes back with something. I want to know more frequently than every three months . . to me, every two months would be a happy medium. Of course, that brings you into the clinic more often but it could be a quick "gag and go" as one CF mom I know calls it. I just hate the thought of waiting until October. I always thought the protocol was 28 days on then 28 days off and repeat if necessary . . . so to know whether we repeat, we need a culture sooner than October, right? I was trying to explain my thinking to the nurse and she acted like I was asking way too much, like this was a real stretch and way out the norm for them.


I really think the U.S. CF clinics need to ramp it up a bit and follow what is being done in Europe as far as the frequency of cultures. : )

 

[angelsmom]

Thank you both for your replies, they do help!

I have often wondered why we only culture every three months, especially if a culture comes back with something. I want to know more frequently than every three months . . to me, every two months would be a happy medium. Of course, that brings you into the clinic more often but it could be a quick "gag and go" as one CF mom I know calls it. I just hate the thought of waiting until October. I always thought the protocol was 28 days on then 28 days off and repeat if necessary . . . so to know whether we repeat, we need a culture sooner than October, right? I was trying to explain my thinking to the nurse and she acted like I was asking way too much, like this was a real stretch and way out the norm for them.


I really think the U.S. CF clinics need to ramp it up a bit and follow what is being done in Europe as far as the frequency of cultures. : )

 

[angelsmom]

Thank you both for your replies, they do help!
<br />
<br />I have often wondered why we only culture every three months, especially if a culture comes back with something. I want to know more frequently than every three months . . to me, every two months would be a happy medium. Of course, that brings you into the clinic more often but it could be a quick "gag and go" as one CF mom I know calls it. I just hate the thought of waiting until October. I always thought the protocol was 28 days on then 28 days off and repeat if necessary . . . so to know whether we repeat, we need a culture sooner than October, right? I was trying to explain my thinking to the nurse and she acted like I was asking way too much, like this was a real stretch and way out the norm for them.
<br />
<br />
<br />I really think the U.S. CF clinics need to ramp it up a bit and follow what is being done in Europe as far as the frequency of cultures. : )
<br />
<br />

 

[ymikhale]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>angelsmom</b></i>

Thank you both for your replies, they do help!



I have often wondered why we only culture every three months, especially if a culture comes back with something. I want to know more frequently than every three months . . to me, every two months would be a happy medium. Of course, that brings you into the clinic more often but it could be a quick "gag and go" as one CF mom I know calls it. I just hate the thought of waiting until October. I always thought the protocol was 28 days on then 28 days off and repeat if necessary . . . so to know whether we repeat, we need a culture sooner than October, right? I was trying to explain my thinking to the nurse and she acted like I was asking way too much, like this was a real stretch and way out the norm for them.





I really think the U.S. CF clinics need to ramp it up a bit and follow what is being done in Europe as far as the frequency of cultures. : )</end quote></div>


I am not sure the protocol is "repeat if necessary". I think there are several approches to this and none has been proven to be superior long term, even though I suppose if the culture comes back positive they will continue to the next cycle of Tobi. So in our case we were told to continue even though the first cycle seemingly eradicated the beast.

Unfortunately in europe, as in the US, the "norm" is 3 months as well. I had to really push for it, show the concensus report and make reference to a well known professor in Israel (whom I went to see prior to that) who sees and cultures his patients monthly. AFter all that, the nurse was still making such a big deal out of it that I had to work around her to get culture results!

 

[ymikhale]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>angelsmom</b></i>

Thank you both for your replies, they do help!



I have often wondered why we only culture every three months, especially if a culture comes back with something. I want to know more frequently than every three months . . to me, every two months would be a happy medium. Of course, that brings you into the clinic more often but it could be a quick "gag and go" as one CF mom I know calls it. I just hate the thought of waiting until October. I always thought the protocol was 28 days on then 28 days off and repeat if necessary . . . so to know whether we repeat, we need a culture sooner than October, right? I was trying to explain my thinking to the nurse and she acted like I was asking way too much, like this was a real stretch and way out the norm for them.





I really think the U.S. CF clinics need to ramp it up a bit and follow what is being done in Europe as far as the frequency of cultures. : )</end quote>


I am not sure the protocol is "repeat if necessary". I think there are several approches to this and none has been proven to be superior long term, even though I suppose if the culture comes back positive they will continue to the next cycle of Tobi. So in our case we were told to continue even though the first cycle seemingly eradicated the beast.

Unfortunately in europe, as in the US, the "norm" is 3 months as well. I had to really push for it, show the concensus report and make reference to a well known professor in Israel (whom I went to see prior to that) who sees and cultures his patients monthly. AFter all that, the nurse was still making such a big deal out of it that I had to work around her to get culture results!

 

[ymikhale]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>angelsmom</b></i>
<br />
<br />Thank you both for your replies, they do help!
<br />
<br />
<br />
<br />I have often wondered why we only culture every three months, especially if a culture comes back with something. I want to know more frequently than every three months . . to me, every two months would be a happy medium. Of course, that brings you into the clinic more often but it could be a quick "gag and go" as one CF mom I know calls it. I just hate the thought of waiting until October. I always thought the protocol was 28 days on then 28 days off and repeat if necessary . . . so to know whether we repeat, we need a culture sooner than October, right? I was trying to explain my thinking to the nurse and she acted like I was asking way too much, like this was a real stretch and way out the norm for them.
<br />
<br />
<br />
<br />
<br />
<br />I really think the U.S. CF clinics need to ramp it up a bit and follow what is being done in Europe as far as the frequency of cultures. : )</end quote>
<br />
<br />
<br />I am not sure the protocol is "repeat if necessary". I think there are several approches to this and none has been proven to be superior long term, even though I suppose if the culture comes back positive they will continue to the next cycle of Tobi. So in our case we were told to continue even though the first cycle seemingly eradicated the beast.
<br />
<br />Unfortunately in europe, as in the US, the "norm" is 3 months as well. I had to really push for it, show the concensus report and make reference to a well known professor in Israel (whom I went to see prior to that) who sees and cultures his patients monthly. AFter all that, the nurse was still making such a big deal out of it that I had to work around her to get culture results!
<br />

 

[BaylorCrew07]

This is really interesting. I've never heard of a follow-up culture, or gone to clinic just for a culture- at mine, they just do them at every 3 month visit.

Not that I'm complaining though, it's hard enough to get time off from work to go to clinic every 3 months, and a long drive...definitely could not do every month.

Similar to ymikhale, I have not cultured psuedo in a long time (1-2 years), but I'm on Cayston b/c they think it is probably still somewhere in my lungs even if it's not showing up on the culture...who knows.

 

[BaylorCrew07]

This is really interesting. I've never heard of a follow-up culture, or gone to clinic just for a culture- at mine, they just do them at every 3 month visit.

Not that I'm complaining though, it's hard enough to get time off from work to go to clinic every 3 months, and a long drive...definitely could not do every month.

Similar to ymikhale, I have not cultured psuedo in a long time (1-2 years), but I'm on Cayston b/c they think it is probably still somewhere in my lungs even if it's not showing up on the culture...who knows.

 

[BaylorCrew07]

This is really interesting. I've never heard of a follow-up culture, or gone to clinic just for a culture- at mine, they just do them at every 3 month visit.
<br />
<br />Not that I'm complaining though, it's hard enough to get time off from work to go to clinic every 3 months, and a long drive...definitely could not do every month.
<br />
<br />Similar to ymikhale, I have not cultured psuedo in a long time (1-2 years), but I'm on Cayston b/c they think it is probably still somewhere in my lungs even if it's not showing up on the culture...who knows.

 

[Mammahuff]

I don't know what the actual protocol is either. This is very interesting. Austin has cultured pseudo in the past. And was placed on cipro and tobi. about 6 months ago he cultured pseudo again and the doc did the cipro and tobi again but this time Austin is doing the tobi every other month indefinetly.

He only goes to clinic every 3 months also. On occassion when the doc wanted to make sure things were going well we would go back in two months. But as far as cultures go they just do them every three months at his normal clinic days. He is also doing the Tiger II Study and they do sputum cultures for that also so if something would show up i am sure they will let us know.

 

[Mammahuff]

I don't know what the actual protocol is either. This is very interesting. Austin has cultured pseudo in the past. And was placed on cipro and tobi. about 6 months ago he cultured pseudo again and the doc did the cipro and tobi again but this time Austin is doing the tobi every other month indefinetly.

He only goes to clinic every 3 months also. On occassion when the doc wanted to make sure things were going well we would go back in two months. But as far as cultures go they just do them every three months at his normal clinic days. He is also doing the Tiger II Study and they do sputum cultures for that also so if something would show up i am sure they will let us know.