TOBI Question

ashton2005

New member
I was wondering how long do you continue the TOBI cycle after you get a clear culture. Ashtons last culture came back clear of PA and his 1st one only had small amounts of PA.. im just wondering what everyone else dr does.. thanks
 

ashton2005

New member
I was wondering how long do you continue the TOBI cycle after you get a clear culture. Ashtons last culture came back clear of PA and his 1st one only had small amounts of PA.. im just wondering what everyone else dr does.. thanks
 

ashton2005

New member
I was wondering how long do you continue the TOBI cycle after you get a clear culture. Ashtons last culture came back clear of PA and his 1st one only had small amounts of PA.. im just wondering what everyone else dr does.. thanks
 

blopunky

New member
blopunky  was dx at about 20 months old but did not grow PA
until august of 2004. This is when his dr. put him on tobi. His
next throat culture 6months later was clear. She kept him on the
tobi-28/on, 28/off cycle through the winter and spring. His next
culture was also clear so she let him "off" for the
summer. She continued with this up until april of this year because
he grew the PA again. His last check up was in october and he was
clear again, so I'm pretty sure he will get no more
summers"off". So I don't know if this is a good cycle to
do or not, but that's what happened with us.  Good Luck<img src="i/expressions/face-icon-small-smile.gif" border="0"><br>
Blopunky's mom
 

blopunky

New member
blopunky  was dx at about 20 months old but did not grow PA
until august of 2004. This is when his dr. put him on tobi. His
next throat culture 6months later was clear. She kept him on the
tobi-28/on, 28/off cycle through the winter and spring. His next
culture was also clear so she let him "off" for the
summer. She continued with this up until april of this year because
he grew the PA again. His last check up was in october and he was
clear again, so I'm pretty sure he will get no more
summers"off". So I don't know if this is a good cycle to
do or not, but that's what happened with us.  Good Luck<img src="i/expressions/face-icon-small-smile.gif" border="0"><br>
Blopunky's mom
 

blopunky

New member
blopunky  was dx at about 20 months old but did not grow PA
until august of 2004. This is when his dr. put him on tobi. His
next throat culture 6months later was clear. She kept him on the
tobi-28/on, 28/off cycle through the winter and spring. His next
culture was also clear so she let him "off" for the
summer. She continued with this up until april of this year because
he grew the PA again. His last check up was in october and he was
clear again, so I'm pretty sure he will get no more
summers"off". So I don't know if this is a good cycle to
do or not, but that's what happened with us.  Good Luck<img src="i/expressions/face-icon-small-smile.gif" border="0"><br>
Blopunky's mom
 

Ratatosk

Administrator
Staff member
When DS first cultured pseudo, we were told a year. Unfortunately, he cultured it shortly before the year was up and then his doctor wanted him on over the winter.
 

Ratatosk

Administrator
Staff member
When DS first cultured pseudo, we were told a year. Unfortunately, he cultured it shortly before the year was up and then his doctor wanted him on over the winter.
 

Ratatosk

Administrator
Staff member
When DS first cultured pseudo, we were told a year. Unfortunately, he cultured it shortly before the year was up and then his doctor wanted him on over the winter.
 

ktsmom

New member
When Katy cultured PA she was put on a 3 month solid TOBI regimen; during this, her next culture was clear. But once our 3 months is up I'm told that we will be on a 28 on/28 off cycle; and everytime I even TRY to hint that we might ever be able to quit it, after some number of clear cultures, I get nothing.

So we'll cycle it forever, as far as I can tell, at least with this doc. Not complaining; just curious, like you, what others do.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 

ktsmom

New member
When Katy cultured PA she was put on a 3 month solid TOBI regimen; during this, her next culture was clear. But once our 3 months is up I'm told that we will be on a 28 on/28 off cycle; and everytime I even TRY to hint that we might ever be able to quit it, after some number of clear cultures, I get nothing.

So we'll cycle it forever, as far as I can tell, at least with this doc. Not complaining; just curious, like you, what others do.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 

ktsmom

New member
When Katy cultured PA she was put on a 3 month solid TOBI regimen; during this, her next culture was clear. But once our 3 months is up I'm told that we will be on a 28 on/28 off cycle; and everytime I even TRY to hint that we might ever be able to quit it, after some number of clear cultures, I get nothing.

So we'll cycle it forever, as far as I can tell, at least with this doc. Not complaining; just curious, like you, what others do.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 

folione

New member
The last time my son cultured PsA he did home IV antibiotics. After they were finished, a bronchoscopy was done and culture was taken and he started Tobi while waiting for culture results. The results came back clear and the Dr. said finish the current 28 days of Tobi then stop.
 

folione

New member
The last time my son cultured PsA he did home IV antibiotics. After they were finished, a bronchoscopy was done and culture was taken and he started Tobi while waiting for culture results. The results came back clear and the Dr. said finish the current 28 days of Tobi then stop.
 

folione

New member
The last time my son cultured PsA he did home IV antibiotics. After they were finished, a bronchoscopy was done and culture was taken and he started Tobi while waiting for culture results. The results came back clear and the Dr. said finish the current 28 days of Tobi then stop.
 

sweetwhite30

New member
<img src="i/expressions/clock.gif" border="0"> When my son was 1 yr old he had a small amount and they put him on the tobi for 28 days and when the culture came back clear they gave him oral antibiotics for precautions and he has been pa free since and he is 4 now.Every doctor is different and each one has their own style of med regimen for children living with c.f
 

sweetwhite30

New member
<img src="i/expressions/clock.gif" border="0"> When my son was 1 yr old he had a small amount and they put him on the tobi for 28 days and when the culture came back clear they gave him oral antibiotics for precautions and he has been pa free since and he is 4 now.Every doctor is different and each one has their own style of med regimen for children living with c.f
 

sweetwhite30

New member
<img src="i/expressions/clock.gif" border="0"> When my son was 1 yr old he had a small amount and they put him on the tobi for 28 days and when the culture came back clear they gave him oral antibiotics for precautions and he has been pa free since and he is 4 now.Every doctor is different and each one has their own style of med regimen for children living with c.f
 

izemmom

New member
Emily cultured PA at her very first clinic visit after leaving the NICU. We did two cycles (28on/28off) before getting a clean culture. We were told we needed two clean cultures in a row before going off TOBI and we continued 28/28 for two more cycles. We were due to start a cycle when she was swabbed for the 2nd clean clture, so we did the cycle for "good measure." That was in July, she's cukltured clean ever since.
 

izemmom

New member
Emily cultured PA at her very first clinic visit after leaving the NICU. We did two cycles (28on/28off) before getting a clean culture. We were told we needed two clean cultures in a row before going off TOBI and we continued 28/28 for two more cycles. We were due to start a cycle when she was swabbed for the 2nd clean clture, so we did the cycle for "good measure." That was in July, she's cukltured clean ever since.
 
Top