Pseudomonas is back

U

usedtobeinca

Guest
I'm so sorry to hear that you little one's PA has returned. It is tough to accept that our little one's need to be on such harsh meds. I've read, and our CF docs have indicated, that a 'scorched earth' approach is effective to eradicate early PA cultures and delay the time that it permanently sets up shop. Thomas picked up PA in the hospital at 1.5mo old (he hadn't yet been home following birth) and we were one day away from coming home when we found out he'd cultured PA. The docs were taken aback by this and put him on 2wks of in-hospital IV antibiotics + 6wks of TOBI. Though it was a heavy handed approach the PA has been gone for over a year now and will hopefully remain so (though our stomachs clinch with each cough).

So I think it's tough but if it eradicates the PA it is worth it - though bombarding your infant w/heavy medications is a tough thing to swallow.

Hang in there!
 
U

usedtobeinca

Guest
I'm so sorry to hear that you little one's PA has returned. It is tough to accept that our little one's need to be on such harsh meds. I've read, and our CF docs have indicated, that a 'scorched earth' approach is effective to eradicate early PA cultures and delay the time that it permanently sets up shop. Thomas picked up PA in the hospital at 1.5mo old (he hadn't yet been home following birth) and we were one day away from coming home when we found out he'd cultured PA. The docs were taken aback by this and put him on 2wks of in-hospital IV antibiotics + 6wks of TOBI. Though it was a heavy handed approach the PA has been gone for over a year now and will hopefully remain so (though our stomachs clinch with each cough).

So I think it's tough but if it eradicates the PA it is worth it - though bombarding your infant w/heavy medications is a tough thing to swallow.

Hang in there!
 
U

usedtobeinca

Guest
I'm so sorry to hear that you little one's PA has returned. It is tough to accept that our little one's need to be on such harsh meds. I've read, and our CF docs have indicated, that a 'scorched earth' approach is effective to eradicate early PA cultures and delay the time that it permanently sets up shop. Thomas picked up PA in the hospital at 1.5mo old (he hadn't yet been home following birth) and we were one day away from coming home when we found out he'd cultured PA. The docs were taken aback by this and put him on 2wks of in-hospital IV antibiotics + 6wks of TOBI. Though it was a heavy handed approach the PA has been gone for over a year now and will hopefully remain so (though our stomachs clinch with each cough).

So I think it's tough but if it eradicates the PA it is worth it - though bombarding your infant w/heavy medications is a tough thing to swallow.

Hang in there!
 
U

usedtobeinca

Guest
I'm so sorry to hear that you little one's PA has returned. It is tough to accept that our little one's need to be on such harsh meds. I've read, and our CF docs have indicated, that a 'scorched earth' approach is effective to eradicate early PA cultures and delay the time that it permanently sets up shop. Thomas picked up PA in the hospital at 1.5mo old (he hadn't yet been home following birth) and we were one day away from coming home when we found out he'd cultured PA. The docs were taken aback by this and put him on 2wks of in-hospital IV antibiotics + 6wks of TOBI. Though it was a heavy handed approach the PA has been gone for over a year now and will hopefully remain so (though our stomachs clinch with each cough).

So I think it's tough but if it eradicates the PA it is worth it - though bombarding your infant w/heavy medications is a tough thing to swallow.

Hang in there!
 
U

usedtobeinca

Guest
I'm so sorry to hear that you little one's PA has returned. It is tough to accept that our little one's need to be on such harsh meds. I've read, and our CF docs have indicated, that a 'scorched earth' approach is effective to eradicate early PA cultures and delay the time that it permanently sets up shop. Thomas picked up PA in the hospital at 1.5mo old (he hadn't yet been home following birth) and we were one day away from coming home when we found out he'd cultured PA. The docs were taken aback by this and put him on 2wks of in-hospital IV antibiotics + 6wks of TOBI. Though it was a heavy handed approach the PA has been gone for over a year now and will hopefully remain so (though our stomachs clinch with each cough).

So I think it's tough but if it eradicates the PA it is worth it - though bombarding your infant w/heavy medications is a tough thing to swallow.

Hang in there!
 
K

ktsmom

New member
I'm sorry Isabella cultured PA again, but like others have said (and our own doc indicated) I think it is just an eventuality for all CFers. It is just everywhere! Please try to take hope in the fact that this round of TOBI and Cipro will knock it back again, and she will go back to clear cultures.

I guess we belong to a 'scorched earth' doc as well, because when Katy cultured PA in September of 2006, we did TOBI and Cipro for 3 months. We are now on TOBI one month on and one month off forever. Every culture since has been clear!

I remember posting here, back then, my concerns about Katy being on TOBI "forever". Now I don't even question it. My how we evolve and change as CF moms! Hang in there Julie, and little Isabella and Taylor too!
 
K

ktsmom

New member
I'm sorry Isabella cultured PA again, but like others have said (and our own doc indicated) I think it is just an eventuality for all CFers. It is just everywhere! Please try to take hope in the fact that this round of TOBI and Cipro will knock it back again, and she will go back to clear cultures.

I guess we belong to a 'scorched earth' doc as well, because when Katy cultured PA in September of 2006, we did TOBI and Cipro for 3 months. We are now on TOBI one month on and one month off forever. Every culture since has been clear!

I remember posting here, back then, my concerns about Katy being on TOBI "forever". Now I don't even question it. My how we evolve and change as CF moms! Hang in there Julie, and little Isabella and Taylor too!
 
K

ktsmom

New member
I'm sorry Isabella cultured PA again, but like others have said (and our own doc indicated) I think it is just an eventuality for all CFers. It is just everywhere! Please try to take hope in the fact that this round of TOBI and Cipro will knock it back again, and she will go back to clear cultures.

I guess we belong to a 'scorched earth' doc as well, because when Katy cultured PA in September of 2006, we did TOBI and Cipro for 3 months. We are now on TOBI one month on and one month off forever. Every culture since has been clear!

I remember posting here, back then, my concerns about Katy being on TOBI "forever". Now I don't even question it. My how we evolve and change as CF moms! Hang in there Julie, and little Isabella and Taylor too!
 
K

ktsmom

New member
I'm sorry Isabella cultured PA again, but like others have said (and our own doc indicated) I think it is just an eventuality for all CFers. It is just everywhere! Please try to take hope in the fact that this round of TOBI and Cipro will knock it back again, and she will go back to clear cultures.

I guess we belong to a 'scorched earth' doc as well, because when Katy cultured PA in September of 2006, we did TOBI and Cipro for 3 months. We are now on TOBI one month on and one month off forever. Every culture since has been clear!

I remember posting here, back then, my concerns about Katy being on TOBI "forever". Now I don't even question it. My how we evolve and change as CF moms! Hang in there Julie, and little Isabella and Taylor too!
 
K

ktsmom

New member
I'm sorry Isabella cultured PA again, but like others have said (and our own doc indicated) I think it is just an eventuality for all CFers. It is just everywhere! Please try to take hope in the fact that this round of TOBI and Cipro will knock it back again, and she will go back to clear cultures.

I guess we belong to a 'scorched earth' doc as well, because when Katy cultured PA in September of 2006, we did TOBI and Cipro for 3 months. We are now on TOBI one month on and one month off forever. Every culture since has been clear!

I remember posting here, back then, my concerns about Katy being on TOBI "forever". Now I don't even question it. My how we evolve and change as CF moms! Hang in there Julie, and little Isabella and Taylor too!
 
M

MYBOY

New member
My son has cultured pseudo on and off since he was about 7 yrs old. They've only put him on TOBI about 3 different times for 1 month. Now he usually cultures staph or pseudo - they say that it is such a mild strain and he doesn't have symptoms so they don't treat. I like it that way - but I'm wondering if this is good enough or not. My son gets so depressed when he has to do TOBI and get up early and he always looses his voice. So I guess I'm not going to question it since he's been doing so good. He does albuteral and pulmozyme everyday - plus the vest. Just curious what everyones take is on TOBI?
 
M

MYBOY

New member
My son has cultured pseudo on and off since he was about 7 yrs old. They've only put him on TOBI about 3 different times for 1 month. Now he usually cultures staph or pseudo - they say that it is such a mild strain and he doesn't have symptoms so they don't treat. I like it that way - but I'm wondering if this is good enough or not. My son gets so depressed when he has to do TOBI and get up early and he always looses his voice. So I guess I'm not going to question it since he's been doing so good. He does albuteral and pulmozyme everyday - plus the vest. Just curious what everyones take is on TOBI?
 
M

MYBOY

New member
My son has cultured pseudo on and off since he was about 7 yrs old. They've only put him on TOBI about 3 different times for 1 month. Now he usually cultures staph or pseudo - they say that it is such a mild strain and he doesn't have symptoms so they don't treat. I like it that way - but I'm wondering if this is good enough or not. My son gets so depressed when he has to do TOBI and get up early and he always looses his voice. So I guess I'm not going to question it since he's been doing so good. He does albuteral and pulmozyme everyday - plus the vest. Just curious what everyones take is on TOBI?
 
M

MYBOY

New member
My son has cultured pseudo on and off since he was about 7 yrs old. They've only put him on TOBI about 3 different times for 1 month. Now he usually cultures staph or pseudo - they say that it is such a mild strain and he doesn't have symptoms so they don't treat. I like it that way - but I'm wondering if this is good enough or not. My son gets so depressed when he has to do TOBI and get up early and he always looses his voice. So I guess I'm not going to question it since he's been doing so good. He does albuteral and pulmozyme everyday - plus the vest. Just curious what everyones take is on TOBI?
 
M

MYBOY

New member
My son has cultured pseudo on and off since he was about 7 yrs old. They've only put him on TOBI about 3 different times for 1 month. Now he usually cultures staph or pseudo - they say that it is such a mild strain and he doesn't have symptoms so they don't treat. I like it that way - but I'm wondering if this is good enough or not. My son gets so depressed when he has to do TOBI and get up early and he always looses his voice. So I guess I'm not going to question it since he's been doing so good. He does albuteral and pulmozyme everyday - plus the vest. Just curious what everyones take is on TOBI?
 
R

Ratatosk

Administrator
Staff member
Ds has been on Tobi every other month, twice a day since he was 3 months old. Orginally they told us that if he had clear cultures after a year, he could be taken off of it. Think there are more issues with antibiotic resistance if one goes off and on it for a shorter period of time... Just guessing, seem to recall a conversation regarding that in the Adult topic area...

He was once put on Cipro when he got a nasty cough about a year ago and that seemed to take care of it after a few days.

As far as his nebbed drugs he's on atrovent & albuterol 3 times a day, pulmozyme once a day.
 
R

Ratatosk

Administrator
Staff member
Ds has been on Tobi every other month, twice a day since he was 3 months old. Orginally they told us that if he had clear cultures after a year, he could be taken off of it. Think there are more issues with antibiotic resistance if one goes off and on it for a shorter period of time... Just guessing, seem to recall a conversation regarding that in the Adult topic area...

He was once put on Cipro when he got a nasty cough about a year ago and that seemed to take care of it after a few days.

As far as his nebbed drugs he's on atrovent & albuterol 3 times a day, pulmozyme once a day.
 
R

Ratatosk

Administrator
Staff member
Ds has been on Tobi every other month, twice a day since he was 3 months old. Orginally they told us that if he had clear cultures after a year, he could be taken off of it. Think there are more issues with antibiotic resistance if one goes off and on it for a shorter period of time... Just guessing, seem to recall a conversation regarding that in the Adult topic area...

He was once put on Cipro when he got a nasty cough about a year ago and that seemed to take care of it after a few days.

As far as his nebbed drugs he's on atrovent & albuterol 3 times a day, pulmozyme once a day.
 
R

Ratatosk

Administrator
Staff member
Ds has been on Tobi every other month, twice a day since he was 3 months old. Orginally they told us that if he had clear cultures after a year, he could be taken off of it. Think there are more issues with antibiotic resistance if one goes off and on it for a shorter period of time... Just guessing, seem to recall a conversation regarding that in the Adult topic area...

He was once put on Cipro when he got a nasty cough about a year ago and that seemed to take care of it after a few days.

As far as his nebbed drugs he's on atrovent & albuterol 3 times a day, pulmozyme once a day.
 
R

Ratatosk

Administrator
Staff member
Ds has been on Tobi every other month, twice a day since he was 3 months old. Orginally they told us that if he had clear cultures after a year, he could be taken off of it. Think there are more issues with antibiotic resistance if one goes off and on it for a shorter period of time... Just guessing, seem to recall a conversation regarding that in the Adult topic area...

He was once put on Cipro when he got a nasty cough about a year ago and that seemed to take care of it after a few days.

As far as his nebbed drugs he's on atrovent & albuterol 3 times a day, pulmozyme once a day.
 
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