cultured our first PA

OperaMama

New member
Hi, Francis just cultured his first PA as the docs are all heading out of town for the conference! They gave us Cipro and TOBI, but the local CF moms imply that IVs are more aggressive/successful at clearing it out. Obviously I'll talk to the docs more when they're back, but I wondered about the experiences and insights any of you might have?

Thanks, M'nell, mother of Francis, age 6 CF, and Roz 4 no cf
 

OperaMama

New member
Hi, Francis just cultured his first PA as the docs are all heading out of town for the conference! They gave us Cipro and TOBI, but the local CF moms imply that IVs are more aggressive/successful at clearing it out. Obviously I'll talk to the docs more when they're back, but I wondered about the experiences and insights any of you might have?

Thanks, M'nell, mother of Francis, age 6 CF, and Roz 4 no cf
 

OperaMama

New member
Hi, Francis just cultured his first PA as the docs are all heading out of town for the conference! They gave us Cipro and TOBI, but the local CF moms imply that IVs are more aggressive/successful at clearing it out. Obviously I'll talk to the docs more when they're back, but I wondered about the experiences and insights any of you might have?

Thanks, M'nell, mother of Francis, age 6 CF, and Roz 4 no cf
 

OperaMama

New member
Hi, Francis just cultured his first PA as the docs are all heading out of town for the conference! They gave us Cipro and TOBI, but the local CF moms imply that IVs are more aggressive/successful at clearing it out. Obviously I'll talk to the docs more when they're back, but I wondered about the experiences and insights any of you might have?

Thanks, M'nell, mother of Francis, age 6 CF, and Roz 4 no cf
 

OperaMama

New member
Hi, Francis just cultured his first PA as the docs are all heading out of town for the conference! They gave us Cipro and TOBI, but the local CF moms imply that IVs are more aggressive/successful at clearing it out. Obviously I'll talk to the docs more when they're back, but I wondered about the experiences and insights any of you might have?

Thanks, M'nell, mother of Francis, age 6 CF, and Roz 4 no cf
 

rcq925

New member
Great that you got to age 6 with no PA! I would insist on the IV's. They are the most agressive approach and the one I took when Hayley cultured PA at 2 years old. Then follow up with at least 6 months of Tobi off and on every month. The IV's kept PA at bay for 2 years! She just cultured it again after 2 years and we did IV's again!

Good Luck!!!
 

rcq925

New member
Great that you got to age 6 with no PA! I would insist on the IV's. They are the most agressive approach and the one I took when Hayley cultured PA at 2 years old. Then follow up with at least 6 months of Tobi off and on every month. The IV's kept PA at bay for 2 years! She just cultured it again after 2 years and we did IV's again!

Good Luck!!!
 

rcq925

New member
Great that you got to age 6 with no PA! I would insist on the IV's. They are the most agressive approach and the one I took when Hayley cultured PA at 2 years old. Then follow up with at least 6 months of Tobi off and on every month. The IV's kept PA at bay for 2 years! She just cultured it again after 2 years and we did IV's again!

Good Luck!!!
 

rcq925

New member
Great that you got to age 6 with no PA! I would insist on the IV's. They are the most agressive approach and the one I took when Hayley cultured PA at 2 years old. Then follow up with at least 6 months of Tobi off and on every month. The IV's kept PA at bay for 2 years! She just cultured it again after 2 years and we did IV's again!

Good Luck!!!
 

rcq925

New member
Great that you got to age 6 with no PA! I would insist on the IV's. They are the most agressive approach and the one I took when Hayley cultured PA at 2 years old. Then follow up with at least 6 months of Tobi off and on every month. The IV's kept PA at bay for 2 years! She just cultured it again after 2 years and we did IV's again!
<br />
<br />Good Luck!!!
 
T

TonyaH

Guest
You are probably going to hear many different experiences on this subject. The first thing you might want to do to make an informed decision is talk to your clinic about the type of PA cultured, what (if anything) it is resitant to, and how much of it grew in the culture. Is your son symptomatic? Some hospitals don't treat everything that grows out in cultures as long as the patient is asymptomatic and has not had a decrease in PFTs. Since this is the first time culturing PA, there is a good chance that it can be eradicated with orals and nebs.

My son grew PA for the first time when he was 12 months old. We did one month of TOBI, and he never cultured it again until he was 6. Again, it was eradicated with TOBI. Not until last November did he begin culturing it again and it has now decided it doesn't want to go away. One year later, it's still showing up on bronchs and sputum samples. He has been treated three times in the last year with IVs and it comes back stronger each time. We just heard Monday that it has now turned mucoid, but we are treating it at home with cipro and TOBI because his PFTs were in the 90s last week!!! We can't complain about that!

So, there are many different things docs look at when deciding how to treat. You will feel better when your doctor is back and you can ask his/her oppinion on ivs, and why they are choosing orals/nebs. PA is the easiest to eradicate the first couple of times it shows up. I hope the cipro and TOBI work for you!
 
T

TonyaH

Guest
You are probably going to hear many different experiences on this subject. The first thing you might want to do to make an informed decision is talk to your clinic about the type of PA cultured, what (if anything) it is resitant to, and how much of it grew in the culture. Is your son symptomatic? Some hospitals don't treat everything that grows out in cultures as long as the patient is asymptomatic and has not had a decrease in PFTs. Since this is the first time culturing PA, there is a good chance that it can be eradicated with orals and nebs.

My son grew PA for the first time when he was 12 months old. We did one month of TOBI, and he never cultured it again until he was 6. Again, it was eradicated with TOBI. Not until last November did he begin culturing it again and it has now decided it doesn't want to go away. One year later, it's still showing up on bronchs and sputum samples. He has been treated three times in the last year with IVs and it comes back stronger each time. We just heard Monday that it has now turned mucoid, but we are treating it at home with cipro and TOBI because his PFTs were in the 90s last week!!! We can't complain about that!

So, there are many different things docs look at when deciding how to treat. You will feel better when your doctor is back and you can ask his/her oppinion on ivs, and why they are choosing orals/nebs. PA is the easiest to eradicate the first couple of times it shows up. I hope the cipro and TOBI work for you!
 
T

TonyaH

Guest
You are probably going to hear many different experiences on this subject. The first thing you might want to do to make an informed decision is talk to your clinic about the type of PA cultured, what (if anything) it is resitant to, and how much of it grew in the culture. Is your son symptomatic? Some hospitals don't treat everything that grows out in cultures as long as the patient is asymptomatic and has not had a decrease in PFTs. Since this is the first time culturing PA, there is a good chance that it can be eradicated with orals and nebs.

My son grew PA for the first time when he was 12 months old. We did one month of TOBI, and he never cultured it again until he was 6. Again, it was eradicated with TOBI. Not until last November did he begin culturing it again and it has now decided it doesn't want to go away. One year later, it's still showing up on bronchs and sputum samples. He has been treated three times in the last year with IVs and it comes back stronger each time. We just heard Monday that it has now turned mucoid, but we are treating it at home with cipro and TOBI because his PFTs were in the 90s last week!!! We can't complain about that!

So, there are many different things docs look at when deciding how to treat. You will feel better when your doctor is back and you can ask his/her oppinion on ivs, and why they are choosing orals/nebs. PA is the easiest to eradicate the first couple of times it shows up. I hope the cipro and TOBI work for you!
 
T

TonyaH

Guest
You are probably going to hear many different experiences on this subject. The first thing you might want to do to make an informed decision is talk to your clinic about the type of PA cultured, what (if anything) it is resitant to, and how much of it grew in the culture. Is your son symptomatic? Some hospitals don't treat everything that grows out in cultures as long as the patient is asymptomatic and has not had a decrease in PFTs. Since this is the first time culturing PA, there is a good chance that it can be eradicated with orals and nebs.

My son grew PA for the first time when he was 12 months old. We did one month of TOBI, and he never cultured it again until he was 6. Again, it was eradicated with TOBI. Not until last November did he begin culturing it again and it has now decided it doesn't want to go away. One year later, it's still showing up on bronchs and sputum samples. He has been treated three times in the last year with IVs and it comes back stronger each time. We just heard Monday that it has now turned mucoid, but we are treating it at home with cipro and TOBI because his PFTs were in the 90s last week!!! We can't complain about that!

So, there are many different things docs look at when deciding how to treat. You will feel better when your doctor is back and you can ask his/her oppinion on ivs, and why they are choosing orals/nebs. PA is the easiest to eradicate the first couple of times it shows up. I hope the cipro and TOBI work for you!
 
T

TonyaH

Guest
You are probably going to hear many different experiences on this subject. The first thing you might want to do to make an informed decision is talk to your clinic about the type of PA cultured, what (if anything) it is resitant to, and how much of it grew in the culture. Is your son symptomatic? Some hospitals don't treat everything that grows out in cultures as long as the patient is asymptomatic and has not had a decrease in PFTs. Since this is the first time culturing PA, there is a good chance that it can be eradicated with orals and nebs.
<br />
<br />My son grew PA for the first time when he was 12 months old. We did one month of TOBI, and he never cultured it again until he was 6. Again, it was eradicated with TOBI. Not until last November did he begin culturing it again and it has now decided it doesn't want to go away. One year later, it's still showing up on bronchs and sputum samples. He has been treated three times in the last year with IVs and it comes back stronger each time. We just heard Monday that it has now turned mucoid, but we are treating it at home with cipro and TOBI because his PFTs were in the 90s last week!!! We can't complain about that!
<br />
<br />So, there are many different things docs look at when deciding how to treat. You will feel better when your doctor is back and you can ask his/her oppinion on ivs, and why they are choosing orals/nebs. PA is the easiest to eradicate the first couple of times it shows up. I hope the cipro and TOBI work for you!
<br />
 
B

brewz2

Guest
I agree, IV Tobi is the way to go from what I've learned - especially with the first culture of PA
 
B

brewz2

Guest
I agree, IV Tobi is the way to go from what I've learned - especially with the first culture of PA
 
B

brewz2

Guest
I agree, IV Tobi is the way to go from what I've learned - especially with the first culture of PA
 
B

brewz2

Guest
I agree, IV Tobi is the way to go from what I've learned - especially with the first culture of PA
 
B

brewz2

Guest
I agree, IV Tobi is the way to go from what I've learned - especially with the first culture of PA
 
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