I NEED YOUR INPUT PLEASE

[cfpatience]

<P>My son (12 years old) had a culture 3 mo ago which showed pseudomonas for the first time in his life.  He took oral antibiotics and started tobi.  I am waiting for his culture from 2 weeks ago to see if it was clear.</P>
<P>The question is this.....once you get it, do you ever get rid of it?  Or will it reoccur over and over again the rest of your life?   They say you have to have 3 cultures showing it gone to stop taking tobi.  If it does not clear, does that mean you take tobi the rest of your life?  And if so, what would be the point if the tobi does not get rid of it?</P>
<P> </P>
<P>Second question.....another CF mom of an 18 mo old boy wants me to babysit for her.  I am scared since my son has the PA.  The clinic says you can get PA from anywhere, yet they say I should not babysit this child as he could get it from me.  I do not know if my son got it from me or not or if I even have it.  What is the difference between my friends child going to a day care full of unknown germs, or a non CF parent taking care of the baby that could have PA and me baby sitting and using all precauations to avoid any transfer????? </P>
<P> </P>
<P>Please help me with these questions, so I can understand PA better and because I need to let the other mom know if I will babysit. </P>
<P>Thanks.  Mary</P>

 

[cfpatience]

<P>My son (12 years old) had a culture 3 mo ago which showed pseudomonas for the first time in his life. He took oral antibiotics and started tobi. I am waiting for his culture from 2 weeks ago to see if it was clear.</P>
<P>The question is this.....once you get it, do you ever get rid of it? Or will it reoccur over and over again the rest of your life? They say you have to have 3 cultures showing it gone to stop taking tobi. If it does not clear, does that mean you take tobi the rest of your life? And if so, what would be the point if the tobi does not get rid of it?</P>
<P></P>
<P>Second question.....another CF mom of an 18 mo old boy wants me to babysit for her. I am scared since my son has the PA. The clinic says you can get PA from anywhere, yet they say I should not babysit this child as he could get it from me. I do not know if my son got it from me or not or if I even have it. What is the difference between my friends child going to a day care full of unknown germs, or a non CF parent taking care of the baby that could have PA and me baby sitting and using all precauations to avoid any transfer????? </P>
<P></P>
<P>Please help me with these questions, so I can understand PA better and because I need to let the other mom know if I will babysit. </P>
<P>Thanks. Mary</P>

 

[cfpatience]

<P>My son (12 years old) had a culture 3 mo ago which showed pseudomonas for the first time in his life. He took oral antibiotics and started tobi. I am waiting for his culture from 2 weeks ago to see if it was clear.</P>
<P><BR>The question is this.....once you get it, do you ever get rid of it? Or will it reoccur over and over again the rest of your life? They say you have to have 3 cultures showing it gone to stop taking tobi. If it does not clear, does that mean you take tobi the rest of your life? And if so, what would be the point if the tobi does not get rid of it?</P>
<P></P>
<P>Second question.....another CF mom of an 18 mo old boy wants me to babysit for her. I am scared since my son has the PA. The clinic says you can get PA from anywhere, yet they say I should not babysit this child as he could get it from me. I do not know if my son got it from me or not or if I even have it. What is the difference between my friends child going to a day care full of unknown germs, or a non CF parent taking care of the baby that could have PA and me baby sitting and using all precauations to avoid any transfer????? </P>
<P></P>
<P>Please help me with these questions, so I can understand PA better and because I need to let the other mom know if I will babysit. </P>
<P>Thanks. Mary<BR></P>

 

[just1more]

1) Yes, most likely once colonized with PA it will be around for the long-haul. The rule of 3 negatives = stopping TOBI is subjective at best, because you can never be sure it is gone, especially since normally you test what you bring up, not necessarily what is in the lungs.

2) Yes, many take TOBI conceivably forever, the reason is that it often controls the level of PA. It is very difficult to completely wipe it out; but you can control the level and keep it from getting overwhelming by using TOBI.

3) As for babysitting a CF'r, I personally would say no, as has your CF clinic given the age of the baby. You didn't give your son PA, it does not (normally) impact healthy individuals. It came from either the environment, or even possibly from clinic. A daycare w/o another CF'r is not going to be a risk of PA. Could they get it anyways, yep your son got it somewhere. Will their child get it if it spends enough time in your home, almost undoubtedly...so why take the risk with an 18mth old.

To clarify though, YOU are not the risk to the toddler, your son is. And any surface your son coughs or sneezes on or touches after doing those. Likewise, walking through the mall is fine up to the moment someone else with CF passes by and lets out a nice wet cough. But since you can't tell who might have it you avoid the known risks and just accept the others because you can't stop them.

Hope this helps.

 

[just1more]

1) Yes, most likely once colonized with PA it will be around for the long-haul. The rule of 3 negatives = stopping TOBI is subjective at best, because you can never be sure it is gone, especially since normally you test what you bring up, not necessarily what is in the lungs.

2) Yes, many take TOBI conceivably forever, the reason is that it often controls the level of PA. It is very difficult to completely wipe it out; but you can control the level and keep it from getting overwhelming by using TOBI.

3) As for babysitting a CF'r, I personally would say no, as has your CF clinic given the age of the baby. You didn't give your son PA, it does not (normally) impact healthy individuals. It came from either the environment, or even possibly from clinic. A daycare w/o another CF'r is not going to be a risk of PA. Could they get it anyways, yep your son got it somewhere. Will their child get it if it spends enough time in your home, almost undoubtedly...so why take the risk with an 18mth old.

To clarify though, YOU are not the risk to the toddler, your son is. And any surface your son coughs or sneezes on or touches after doing those. Likewise, walking through the mall is fine up to the moment someone else with CF passes by and lets out a nice wet cough. But since you can't tell who might have it you avoid the known risks and just accept the others because you can't stop them.

Hope this helps.

 

[just1more]

1) Yes, most likely once colonized with PA it will be around for the long-haul. The rule of 3 negatives = stopping TOBI is subjective at best, because you can never be sure it is gone, especially since normally you test what you bring up, not necessarily what is in the lungs.
<br />
<br />2) Yes, many take TOBI conceivably forever, the reason is that it often controls the level of PA. It is very difficult to completely wipe it out; but you can control the level and keep it from getting overwhelming by using TOBI.
<br />
<br />3) As for babysitting a CF'r, I personally would say no, as has your CF clinic given the age of the baby. You didn't give your son PA, it does not (normally) impact healthy individuals. It came from either the environment, or even possibly from clinic. A daycare w/o another CF'r is not going to be a risk of PA. Could they get it anyways, yep your son got it somewhere. Will their child get it if it spends enough time in your home, almost undoubtedly...so why take the risk with an 18mth old.
<br />
<br />To clarify though, YOU are not the risk to the toddler, your son is. And any surface your son coughs or sneezes on or touches after doing those. Likewise, walking through the mall is fine up to the moment someone else with CF passes by and lets out a nice wet cough. But since you can't tell who might have it you avoid the known risks and just accept the others because you can't stop them.
<br />
<br />Hope this helps.

 

[cfpatience]

Thanks Tom.  Your reply is appreciated and helps.  I do want to clarify to everyone thought that I would be babysitting at her house and not mine and that our children would not have contact with one another.  Does that change your answer?

 

[cfpatience]

Thanks Tom. Your reply is appreciated and helps. I do want to clarify to everyone thought that I would be babysitting at her house and not mine and that our children would not have contact with one another. Does that change your answer?

 

[cfpatience]

Thanks Tom. Your reply is appreciated and helps. I do want to clarify to everyone thought that I would be babysitting at her house and not mine and that our children would not have contact with one another. Does that change your answer?<BR>

 

[sunshine39656]

<P>I've had Psuedomonas for several years but never had problems with it, didn't even know I had it, until earlier this year when I caught a virus.  My body was so busy fighting the virus that the PA took over my body and I had to take IV antibiotics to get rid of it.  Still have some issues, but I take Tobi and Cayston and that seems to help.</P>
<P> </P>
<P>I've always been told that once you get it, you never get rid of it.  But at my CF center, I recently asked after my last bout with it and they told me that they had a CFer who had had PA and it eventually went away.  I think it just lies dormant and acts up when it gets a germ it doesn't like.  Just my experience.</P>

 

[sunshine39656]

<P>I've had Psuedomonas for several years but never had problems with it, didn't even know I had it, until earlier this year when I caught a virus. My body was so busy fighting the virus that the PA took over my bodyand I had to take IV antibiotics to get rid of it. Still have some issues, but I take Tobi and Cayston and that seems to help.</P>
<P></P>
<P>I've always been told that once you get it, you never get rid of it. But at my CF center, I recently asked after my last bout with it and they told me that they had a CFer who had had PA and it eventually went away. I think it just lies dormant and acts up when it gets a germ it doesn't like. Just my experience.</P>

 

[sunshine39656]

<P><BR>I've had Psuedomonas for several years but never had problems with it, didn't even know I had it, until earlier this year when I caught a virus. My body was so busy fighting the virus that the PA took over my bodyand I had to take IV antibiotics to get rid of it. Still have some issues, but I take Tobi and Cayston and that seems to help.</P>
<P></P>
<P>I've always been told that once you get it, you never get rid of it. But at my CF center, I recently asked after my last bout with it and they told me that they had a CFer who had had PA and it eventually went away. I think it just lies dormant and acts up when it gets a germ it doesn't like. Just my experience.</P>

 

[albino15]

I'm no expert but if the kids aren't going to be together at all, I wouldn't think it would be a problem. I mean I was always under the impression that two CFers being too close was the problem.
Then again maybe the worry is that you would bring your sons germs (not your germs) to the other kid.
Just thinking out loud.

 

[albino15]

I'm no expert but if the kids aren't going to be together at all, I wouldn't think it would be a problem. I mean I was always under the impression that two CFers being too close was the problem.
Then again maybe the worry is that you would bring your sons germs (not your germs) to the other kid.
Just thinking out loud.

 

[albino15]

I'm no expert but if the kids aren't going to be together at all, I wouldn't think it would be a problem. I mean I was always under the impression that two CFers being too close was the problem.
<br />Then again maybe the worry is that you would bring your sons germs (not your germs) to the other kid.
<br />Just thinking out loud.

 

[Printer]

I had cultured PS for many years, however over the past 8 years or so, the PS is no longer detectable. I'n allergic to Toby and Pulmizime so I credit the 7% Sailine.

Bill

 

[Printer]

I had cultured PS for many years, however over the past 8 years or so, the PS is no longer detectable. I'n allergic to Toby and Pulmizime so I credit the 7% Sailine.

Bill

 

[Printer]

I had cultured PS for many years, however over the past 8 years or so, the PS is no longer detectable. I'n allergic to Toby and Pulmizime so I credit the 7% Sailine.
<br />
<br />Bill

 

[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).

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.

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.

 

[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).

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.

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.