cultured our first PA

Terry · Oct 25, 2008

In my opinion, these kids are poked, prodded, and stuck enough when they are well. I would worry that giving a baby iv's for 4 weeks without trying anything else first could do more harm than good.

I was so worried the whole time Riss was on iv's for her ear infection. It was necessary as all attempts orally were failing and the bacteria was growing out of control. But I think the iv's themselves in little kids pose a risk as an entrance for other bacterias.

I definitely wouldn't refuse an iv if oral means weren't working, but as the first line of defense, I think Tobi nebs and cipro are pretty aggressive.

Good luck!
Terry

Terry · Oct 25, 2008

In my opinion, these kids are poked, prodded, and stuck enough when they are well. I would worry that giving a baby iv's for 4 weeks without trying anything else first could do more harm than good.

I was so worried the whole time Riss was on iv's for her ear infection. It was necessary as all attempts orally were failing and the bacteria was growing out of control. But I think the iv's themselves in little kids pose a risk as an entrance for other bacterias.

I definitely wouldn't refuse an iv if oral means weren't working, but as the first line of defense, I think Tobi nebs and cipro are pretty aggressive.

Good luck!
Terry

Terry · Oct 25, 2008

In my opinion, these kids are poked, prodded, and stuck enough when they are well. I would worry that giving a baby iv's for 4 weeks without trying anything else first could do more harm than good.

I was so worried the whole time Riss was on iv's for her ear infection. It was necessary as all attempts orally were failing and the bacteria was growing out of control. But I think the iv's themselves in little kids pose a risk as an entrance for other bacterias.

I definitely wouldn't refuse an iv if oral means weren't working, but as the first line of defense, I think Tobi nebs and cipro are pretty aggressive.

Good luck!
Terry

Terry · Oct 25, 2008

In my opinion, these kids are poked, prodded, and stuck enough when they are well. I would worry that giving a baby iv's for 4 weeks without trying anything else first could do more harm than good.

I was so worried the whole time Riss was on iv's for her ear infection. It was necessary as all attempts orally were failing and the bacteria was growing out of control. But I think the iv's themselves in little kids pose a risk as an entrance for other bacterias.

I definitely wouldn't refuse an iv if oral means weren't working, but as the first line of defense, I think Tobi nebs and cipro are pretty aggressive.

Good luck!
Terry

Terry · Oct 25, 2008

In my opinion, these kids are poked, prodded, and stuck enough when they are well. I would worry that giving a baby iv's for 4 weeks without trying anything else first could do more harm than good.
 
 I was so worried the whole time Riss was on iv's for her ear infection. It was necessary as all attempts orally were failing and the bacteria was growing out of control. But I think the iv's themselves in little kids pose a risk as an entrance for other bacterias.
 
 I definitely wouldn't refuse an iv if oral means weren't working, but as the first line of defense, I think Tobi nebs and cipro are pretty aggressive.
 
 Good luck!
 Terry

Marjolein · Oct 25, 2008

I agree with the TOBI Cipro combination I think. After reading that statistics have shown that just as effective.
I read a comment stating that being on IV's would mean going into the hospital (specially when it's IV's for the first time) and that that is a risk in itself. That is just what I was thinking. I have had I think 80% or more of my IV's at home, started them at home too. Just because of the risk of infection when being in the hospital. You just don't need some other bug hanging around in your lungs.

When I was young and cultured Pseudo for the first time we didn't have TOBI yet. I don't know what they did for me but I would guess I had IV's and after that I know I was put on Colimycine (up until my transplant years later).

Agree with the comment on the 4 week course of IV Tobramycine that PedsNP2007 made. I would think that's really aggressive. My doctors have always said that I couldn't have Tobra IV's for more then 3 weeks (and I wasn't a small baby anymore). That would be dangerous for my body (kidneys, hearing) and also they have always told me that when 3 weeks of Tobra didn't work, 4 weeks wouldn't either...

Marjolein · Oct 25, 2008

I agree with the TOBI Cipro combination I think. After reading that statistics have shown that just as effective.
I read a comment stating that being on IV's would mean going into the hospital (specially when it's IV's for the first time) and that that is a risk in itself. That is just what I was thinking. I have had I think 80% or more of my IV's at home, started them at home too. Just because of the risk of infection when being in the hospital. You just don't need some other bug hanging around in your lungs.

When I was young and cultured Pseudo for the first time we didn't have TOBI yet. I don't know what they did for me but I would guess I had IV's and after that I know I was put on Colimycine (up until my transplant years later).

Agree with the comment on the 4 week course of IV Tobramycine that PedsNP2007 made. I would think that's really aggressive. My doctors have always said that I couldn't have Tobra IV's for more then 3 weeks (and I wasn't a small baby anymore). That would be dangerous for my body (kidneys, hearing) and also they have always told me that when 3 weeks of Tobra didn't work, 4 weeks wouldn't either...

Marjolein · Oct 25, 2008

I agree with the TOBI Cipro combination I think. After reading that statistics have shown that just as effective.
I read a comment stating that being on IV's would mean going into the hospital (specially when it's IV's for the first time) and that that is a risk in itself. That is just what I was thinking. I have had I think 80% or more of my IV's at home, started them at home too. Just because of the risk of infection when being in the hospital. You just don't need some other bug hanging around in your lungs.

When I was young and cultured Pseudo for the first time we didn't have TOBI yet. I don't know what they did for me but I would guess I had IV's and after that I know I was put on Colimycine (up until my transplant years later).

Agree with the comment on the 4 week course of IV Tobramycine that PedsNP2007 made. I would think that's really aggressive. My doctors have always said that I couldn't have Tobra IV's for more then 3 weeks (and I wasn't a small baby anymore). That would be dangerous for my body (kidneys, hearing) and also they have always told me that when 3 weeks of Tobra didn't work, 4 weeks wouldn't either...

Marjolein · Oct 25, 2008

I agree with the TOBI Cipro combination I think. After reading that statistics have shown that just as effective.
I read a comment stating that being on IV's would mean going into the hospital (specially when it's IV's for the first time) and that that is a risk in itself. That is just what I was thinking. I have had I think 80% or more of my IV's at home, started them at home too. Just because of the risk of infection when being in the hospital. You just don't need some other bug hanging around in your lungs.

When I was young and cultured Pseudo for the first time we didn't have TOBI yet. I don't know what they did for me but I would guess I had IV's and after that I know I was put on Colimycine (up until my transplant years later).

Agree with the comment on the 4 week course of IV Tobramycine that PedsNP2007 made. I would think that's really aggressive. My doctors have always said that I couldn't have Tobra IV's for more then 3 weeks (and I wasn't a small baby anymore). That would be dangerous for my body (kidneys, hearing) and also they have always told me that when 3 weeks of Tobra didn't work, 4 weeks wouldn't either...

Marjolein · Oct 25, 2008

I agree with the TOBI Cipro combination I think. After reading that statistics have shown that just as effective.
 I read a comment stating that being on IV's would mean going into the hospital (specially when it's IV's for the first time) and that that is a risk in itself. That is just what I was thinking. I have had I think 80% or more of my IV's at home, started them at home too. Just because of the risk of infection when being in the hospital. You just don't need some other bug hanging around in your lungs.
 
 When I was young and cultured Pseudo for the first time we didn't have TOBI yet. I don't know what they did for me but I would guess I had IV's and after that I know I was put on Colimycine (up until my transplant years later).
 
 Agree with the comment on the 4 week course of IV Tobramycine that PedsNP2007 made. I would think that's really aggressive. My doctors have always said that I couldn't have Tobra IV's for more then 3 weeks (and I wasn't a small baby anymore). That would be dangerous for my body (kidneys, hearing) and also they have always told me that when 3 weeks of Tobra didn't work, 4 weeks wouldn't either...

TestifyToLove · Oct 26, 2008

M came home 2 years after starting TOBI for PA. He was never put on the Cipro/TOBI protocal. When he first cultured PA he was simply started in inhaled TOBI. And, it never did ANYTHNG to control his PA.

Consequently, he came home in March with his PA out of control and 2 strains of MSSA just for kicks and giggles growing in there. He was coughing horrifically, and in the 8 months it took him to get home, we were able to report to his doctors that he always 'had a cold' according to fostermom.

He went in the hospital for 1 week, got a PICC line inserted and started on Timentin and Tobramycin IV. He then came home and continued those IV meds for a total of 3 weeks. He then went straight into a new TOBI cycle month (was only off TOBI for 2 weeks).

However, he is STILL culturing PA. He has never not cultured it since it showed up. And, I think it has a LOT to do with no one being aggressive when he first cultured t. I supposed that's what we should expect from a CF clinic that doesn't bother with masks nor isolating CF patients from each other. But, his CF doctors here are very fustrated that aggressive treatment wasn't followed when he first cultured this. They believe in M's case, he should have been on IV antibiotics when he first cultured it.

Now that flu and cold season has started, he's having flare-ups all over again. He just did Cipro last month for the PA that he's still culturing. That worked for 3 weeks and the cough came back so now he's on oral Levaquin. (He got another cold and sure enough the cough didn't disappear when the cold did.) We strongly suspect we're heading towards another hospitalization for IV antibiotics. And yes, we'll yet again argue for PICC line insertion and home IVs. His CF doctor doesn't like to go that route. But, I'm an RN and we have a Hemophiliac son with a port. We're much more comfortable both for nosocomial infections and for attachment issues if we can get M out of the hospital ASAP and do his IV's at home.

Still, I don't now if you are better with oral Cipro and TOBI or IVs. But, personally I'd probably prefer IVs at home for a first PA culture. That said, my opinion is colored by the fact that M's case was mismanaged horrifically and clearly he should have had those antibiotics.

TestifyToLove · Oct 26, 2008

M came home 2 years after starting TOBI for PA. He was never put on the Cipro/TOBI protocal. When he first cultured PA he was simply started in inhaled TOBI. And, it never did ANYTHNG to control his PA.

Consequently, he came home in March with his PA out of control and 2 strains of MSSA just for kicks and giggles growing in there. He was coughing horrifically, and in the 8 months it took him to get home, we were able to report to his doctors that he always 'had a cold' according to fostermom.

He went in the hospital for 1 week, got a PICC line inserted and started on Timentin and Tobramycin IV. He then came home and continued those IV meds for a total of 3 weeks. He then went straight into a new TOBI cycle month (was only off TOBI for 2 weeks).

However, he is STILL culturing PA. He has never not cultured it since it showed up. And, I think it has a LOT to do with no one being aggressive when he first cultured t. I supposed that's what we should expect from a CF clinic that doesn't bother with masks nor isolating CF patients from each other. But, his CF doctors here are very fustrated that aggressive treatment wasn't followed when he first cultured this. They believe in M's case, he should have been on IV antibiotics when he first cultured it.

Now that flu and cold season has started, he's having flare-ups all over again. He just did Cipro last month for the PA that he's still culturing. That worked for 3 weeks and the cough came back so now he's on oral Levaquin. (He got another cold and sure enough the cough didn't disappear when the cold did.) We strongly suspect we're heading towards another hospitalization for IV antibiotics. And yes, we'll yet again argue for PICC line insertion and home IVs. His CF doctor doesn't like to go that route. But, I'm an RN and we have a Hemophiliac son with a port. We're much more comfortable both for nosocomial infections and for attachment issues if we can get M out of the hospital ASAP and do his IV's at home.

Still, I don't now if you are better with oral Cipro and TOBI or IVs. But, personally I'd probably prefer IVs at home for a first PA culture. That said, my opinion is colored by the fact that M's case was mismanaged horrifically and clearly he should have had those antibiotics.

TestifyToLove · Oct 26, 2008

M came home 2 years after starting TOBI for PA. He was never put on the Cipro/TOBI protocal. When he first cultured PA he was simply started in inhaled TOBI. And, it never did ANYTHNG to control his PA.

Consequently, he came home in March with his PA out of control and 2 strains of MSSA just for kicks and giggles growing in there. He was coughing horrifically, and in the 8 months it took him to get home, we were able to report to his doctors that he always 'had a cold' according to fostermom.

He went in the hospital for 1 week, got a PICC line inserted and started on Timentin and Tobramycin IV. He then came home and continued those IV meds for a total of 3 weeks. He then went straight into a new TOBI cycle month (was only off TOBI for 2 weeks).

However, he is STILL culturing PA. He has never not cultured it since it showed up. And, I think it has a LOT to do with no one being aggressive when he first cultured t. I supposed that's what we should expect from a CF clinic that doesn't bother with masks nor isolating CF patients from each other. But, his CF doctors here are very fustrated that aggressive treatment wasn't followed when he first cultured this. They believe in M's case, he should have been on IV antibiotics when he first cultured it.

Now that flu and cold season has started, he's having flare-ups all over again. He just did Cipro last month for the PA that he's still culturing. That worked for 3 weeks and the cough came back so now he's on oral Levaquin. (He got another cold and sure enough the cough didn't disappear when the cold did.) We strongly suspect we're heading towards another hospitalization for IV antibiotics. And yes, we'll yet again argue for PICC line insertion and home IVs. His CF doctor doesn't like to go that route. But, I'm an RN and we have a Hemophiliac son with a port. We're much more comfortable both for nosocomial infections and for attachment issues if we can get M out of the hospital ASAP and do his IV's at home.

Still, I don't now if you are better with oral Cipro and TOBI or IVs. But, personally I'd probably prefer IVs at home for a first PA culture. That said, my opinion is colored by the fact that M's case was mismanaged horrifically and clearly he should have had those antibiotics.

TestifyToLove · Oct 26, 2008

M came home 2 years after starting TOBI for PA. He was never put on the Cipro/TOBI protocal. When he first cultured PA he was simply started in inhaled TOBI. And, it never did ANYTHNG to control his PA.

Consequently, he came home in March with his PA out of control and 2 strains of MSSA just for kicks and giggles growing in there. He was coughing horrifically, and in the 8 months it took him to get home, we were able to report to his doctors that he always 'had a cold' according to fostermom.

He went in the hospital for 1 week, got a PICC line inserted and started on Timentin and Tobramycin IV. He then came home and continued those IV meds for a total of 3 weeks. He then went straight into a new TOBI cycle month (was only off TOBI for 2 weeks).

However, he is STILL culturing PA. He has never not cultured it since it showed up. And, I think it has a LOT to do with no one being aggressive when he first cultured t. I supposed that's what we should expect from a CF clinic that doesn't bother with masks nor isolating CF patients from each other. But, his CF doctors here are very fustrated that aggressive treatment wasn't followed when he first cultured this. They believe in M's case, he should have been on IV antibiotics when he first cultured it.

Now that flu and cold season has started, he's having flare-ups all over again. He just did Cipro last month for the PA that he's still culturing. That worked for 3 weeks and the cough came back so now he's on oral Levaquin. (He got another cold and sure enough the cough didn't disappear when the cold did.) We strongly suspect we're heading towards another hospitalization for IV antibiotics. And yes, we'll yet again argue for PICC line insertion and home IVs. His CF doctor doesn't like to go that route. But, I'm an RN and we have a Hemophiliac son with a port. We're much more comfortable both for nosocomial infections and for attachment issues if we can get M out of the hospital ASAP and do his IV's at home.

Still, I don't now if you are better with oral Cipro and TOBI or IVs. But, personally I'd probably prefer IVs at home for a first PA culture. That said, my opinion is colored by the fact that M's case was mismanaged horrifically and clearly he should have had those antibiotics.

TestifyToLove · Oct 26, 2008

M came home 2 years after starting TOBI for PA. He was never put on the Cipro/TOBI protocal. When he first cultured PA he was simply started in inhaled TOBI. And, it never did ANYTHNG to control his PA.
 
 Consequently, he came home in March with his PA out of control and 2 strains of MSSA just for kicks and giggles growing in there. He was coughing horrifically, and in the 8 months it took him to get home, we were able to report to his doctors that he always 'had a cold' according to fostermom.
 
 He went in the hospital for 1 week, got a PICC line inserted and started on Timentin and Tobramycin IV. He then came home and continued those IV meds for a total of 3 weeks. He then went straight into a new TOBI cycle month (was only off TOBI for 2 weeks).
 
 However, he is STILL culturing PA. He has never not cultured it since it showed up. And, I think it has a LOT to do with no one being aggressive when he first cultured t. I supposed that's what we should expect from a CF clinic that doesn't bother with masks nor isolating CF patients from each other. But, his CF doctors here are very fustrated that aggressive treatment wasn't followed when he first cultured this. They believe in M's case, he should have been on IV antibiotics when he first cultured it.
 
 Now that flu and cold season has started, he's having flare-ups all over again. He just did Cipro last month for the PA that he's still culturing. That worked for 3 weeks and the cough came back so now he's on oral Levaquin. (He got another cold and sure enough the cough didn't disappear when the cold did.) We strongly suspect we're heading towards another hospitalization for IV antibiotics. And yes, we'll yet again argue for PICC line insertion and home IVs. His CF doctor doesn't like to go that route. But, I'm an RN and we have a Hemophiliac son with a port. We're much more comfortable both for nosocomial infections and for attachment issues if we can get M out of the hospital ASAP and do his IV's at home.
 
 Still, I don't now if you are better with oral Cipro and TOBI or IVs. But, personally I'd probably prefer IVs at home for a first PA culture. That said, my opinion is colored by the fact that M's case was mismanaged horrifically and clearly he should have had those antibiotics.

kathiel · Oct 26, 2008