pseudomonas

[jaybird]

My son tested + for non-mucoid PA as soon as he was diagnosed at 8 months old. We were on TOBI (2x/d) and cipro for a month. then a month off, then three months of TOBI (1x/d). then one month off (i think) then one month of cipro and Colimycin (nebbed 2x/d). whew, then he was clear !! doc said if he wasn't clear after all that, we would've gone in for IV's. he was clear for 6 months, then + again, so one more month of TOBI and cipro. then clear for 1 1/2 years, fingers crossed right now becuase he just had a throat culture last week.

my advice would be to up his vest #/d and length of time. when he went from clear to +, we had just started the vest and we only did what they recommended 2x/d for 20 minutes each. NOT ENOUGH!! We now do three times a day for 25 min each and albuterol before every neb treatment. Derek nebs Pulmozyme every day during his vest and hypertonic saline (awesome) three times a week.

i just reread your post that your son is only 19 months old--if you don't have the vest you should push for it. Derek was off the growth charts but still got approved for his vest at 18 months old.

Best of luck, our pulm just told us all kinds of good stuff is on the way that he heard about at the annual CF conference last week. We are really inspired!!

 

[jaybird]

My son tested + for non-mucoid PA as soon as he was diagnosed at 8 months old. We were on TOBI (2x/d) and cipro for a month. then a month off, then three months of TOBI (1x/d). then one month off (i think) then one month of cipro and Colimycin (nebbed 2x/d). whew, then he was clear !! doc said if he wasn't clear after all that, we would've gone in for IV's. he was clear for 6 months, then + again, so one more month of TOBI and cipro. then clear for 1 1/2 years, fingers crossed right now becuase he just had a throat culture last week.

my advice would be to up his vest #/d and length of time. when he went from clear to +, we had just started the vest and we only did what they recommended 2x/d for 20 minutes each. NOT ENOUGH!! We now do three times a day for 25 min each and albuterol before every neb treatment. Derek nebs Pulmozyme every day during his vest and hypertonic saline (awesome) three times a week.

i just reread your post that your son is only 19 months old--if you don't have the vest you should push for it. Derek was off the growth charts but still got approved for his vest at 18 months old.

Best of luck, our pulm just told us all kinds of good stuff is on the way that he heard about at the annual CF conference last week. We are really inspired!!

 

[jaybird]

My son tested + for non-mucoid PA as soon as he was diagnosed at 8 months old. We were on TOBI (2x/d) and cipro for a month. then a month off, then three months of TOBI (1x/d). then one month off (i think) then one month of cipro and Colimycin (nebbed 2x/d). whew, then he was clear !! doc said if he wasn't clear after all that, we would've gone in for IV's. he was clear for 6 months, then + again, so one more month of TOBI and cipro. then clear for 1 1/2 years, fingers crossed right now becuase he just had a throat culture last week.

my advice would be to up his vest #/d and length of time. when he went from clear to +, we had just started the vest and we only did what they recommended 2x/d for 20 minutes each. NOT ENOUGH!! We now do three times a day for 25 min each and albuterol before every neb treatment. Derek nebs Pulmozyme every day during his vest and hypertonic saline (awesome) three times a week.

i just reread your post that your son is only 19 months old--if you don't have the vest you should push for it. Derek was off the growth charts but still got approved for his vest at 18 months old.

Best of luck, our pulm just told us all kinds of good stuff is on the way that he heard about at the annual CF conference last week. We are really inspired!!

 

[jaybird]

My son tested + for non-mucoid PA as soon as he was diagnosed at 8 months old. We were on TOBI (2x/d) and cipro for a month. then a month off, then three months of TOBI (1x/d). then one month off (i think) then one month of cipro and Colimycin (nebbed 2x/d). whew, then he was clear !! doc said if he wasn't clear after all that, we would've gone in for IV's. he was clear for 6 months, then + again, so one more month of TOBI and cipro. then clear for 1 1/2 years, fingers crossed right now becuase he just had a throat culture last week.

my advice would be to up his vest #/d and length of time. when he went from clear to +, we had just started the vest and we only did what they recommended 2x/d for 20 minutes each. NOT ENOUGH!! We now do three times a day for 25 min each and albuterol before every neb treatment. Derek nebs Pulmozyme every day during his vest and hypertonic saline (awesome) three times a week.

i just reread your post that your son is only 19 months old--if you don't have the vest you should push for it. Derek was off the growth charts but still got approved for his vest at 18 months old.

Best of luck, our pulm just told us all kinds of good stuff is on the way that he heard about at the annual CF conference last week. We are really inspired!!

 

[jaybird]

My son tested + for non-mucoid PA as soon as he was diagnosed at 8 months old. We were on TOBI (2x/d) and cipro for a month. then a month off, then three months of TOBI (1x/d). then one month off (i think) then one month of cipro and Colimycin (nebbed 2x/d). whew, then he was clear !! doc said if he wasn't clear after all that, we would've gone in for IV's. he was clear for 6 months, then + again, so one more month of TOBI and cipro. then clear for 1 1/2 years, fingers crossed right now becuase he just had a throat culture last week.

my advice would be to up his vest #/d and length of time. when he went from clear to +, we had just started the vest and we only did what they recommended 2x/d for 20 minutes each. NOT ENOUGH!! We now do three times a day for 25 min each and albuterol before every neb treatment. Derek nebs Pulmozyme every day during his vest and hypertonic saline (awesome) three times a week.

i just reread your post that your son is only 19 months old--if you don't have the vest you should push for it. Derek was off the growth charts but still got approved for his vest at 18 months old.

Best of luck, our pulm just told us all kinds of good stuff is on the way that he heard about at the annual CF conference last week. We are really inspired!!

 

[Alyssa]

My daughter was able to clear non-mucoid PA a couple of years ago with tobi and cipro for just one month. she has never cultured it again yet.

 

[Alyssa]

My daughter was able to clear non-mucoid PA a couple of years ago with tobi and cipro for just one month. she has never cultured it again yet.

 

[Alyssa]

My daughter was able to clear non-mucoid PA a couple of years ago with tobi and cipro for just one month. she has never cultured it again yet.

 

[Alyssa]

My daughter was able to clear non-mucoid PA a couple of years ago with tobi and cipro for just one month. she has never cultured it again yet.

 

[Alyssa]

My daughter was able to clear non-mucoid PA a couple of years ago with tobi and cipro for just one month. she has never cultured it again yet.

 

[mpax]

My son was born Aug 27 and was diagnosed at birth (testing at OBGYN discovered our carrier status). On his first culture they found PA. The doctor put him on a month of TOBI one time a day and said if it doesn't work we are going straight to IV antibiotics in hospital. We went to a second CF center for a 2nd analysis they stated that they would have him on the TOBI twice a day but would not admitt him after the first month they would do the 1 month off and one month on and hold off on the IV. We have to choose a course of action (by choosing a doctor) we do not know what to do? The first doctor is in a CF satelite office that sees about 100+ patients, the second doctor is at Johns Hopkins CF center in Baltimore and sees about 400+ patients. We were wondering if experience was key? Does anyone have any suggestions or experiences to share.

 

[mpax]

My son was born Aug 27 and was diagnosed at birth (testing at OBGYN discovered our carrier status). On his first culture they found PA. The doctor put him on a month of TOBI one time a day and said if it doesn't work we are going straight to IV antibiotics in hospital. We went to a second CF center for a 2nd analysis they stated that they would have him on the TOBI twice a day but would not admitt him after the first month they would do the 1 month off and one month on and hold off on the IV. We have to choose a course of action (by choosing a doctor) we do not know what to do? The first doctor is in a CF satelite office that sees about 100+ patients, the second doctor is at Johns Hopkins CF center in Baltimore and sees about 400+ patients. We were wondering if experience was key? Does anyone have any suggestions or experiences to share.

 

[mpax]

My son was born Aug 27 and was diagnosed at birth (testing at OBGYN discovered our carrier status). On his first culture they found PA. The doctor put him on a month of TOBI one time a day and said if it doesn't work we are going straight to IV antibiotics in hospital. We went to a second CF center for a 2nd analysis they stated that they would have him on the TOBI twice a day but would not admitt him after the first month they would do the 1 month off and one month on and hold off on the IV. We have to choose a course of action (by choosing a doctor) we do not know what to do? The first doctor is in a CF satelite office that sees about 100+ patients, the second doctor is at Johns Hopkins CF center in Baltimore and sees about 400+ patients. We were wondering if experience was key? Does anyone have any suggestions or experiences to share.

 

[mpax]

My son was born Aug 27 and was diagnosed at birth (testing at OBGYN discovered our carrier status). On his first culture they found PA. The doctor put him on a month of TOBI one time a day and said if it doesn't work we are going straight to IV antibiotics in hospital. We went to a second CF center for a 2nd analysis they stated that they would have him on the TOBI twice a day but would not admitt him after the first month they would do the 1 month off and one month on and hold off on the IV. We have to choose a course of action (by choosing a doctor) we do not know what to do? The first doctor is in a CF satelite office that sees about 100+ patients, the second doctor is at Johns Hopkins CF center in Baltimore and sees about 400+ patients. We were wondering if experience was key? Does anyone have any suggestions or experiences to share.

 

[mpax]

My son was born Aug 27 and was diagnosed at birth (testing at OBGYN discovered our carrier status). On his first culture they found PA. The doctor put him on a month of TOBI one time a day and said if it doesn't work we are going straight to IV antibiotics in hospital. We went to a second CF center for a 2nd analysis they stated that they would have him on the TOBI twice a day but would not admitt him after the first month they would do the 1 month off and one month on and hold off on the IV. We have to choose a course of action (by choosing a doctor) we do not know what to do? The first doctor is in a CF satelite office that sees about 100+ patients, the second doctor is at Johns Hopkins CF center in Baltimore and sees about 400+ patients. We were wondering if experience was key? Does anyone have any suggestions or experiences to share.

 

[froggymama]

Michael, I could be wrong, but our doc said the most common protocal now for pseudomonas (my daughter just tested positive a week ago) was to do 2 months of Tobi, and then for the next six months, Tobi every other month. And of course at every appointment, they keep culturing to see if it works. They also put my daughter on the oral antibiotic, Cipro for 28 days. So hopefully between the two, we'll beat it! Good luck.

 

[froggymama]

Michael, I could be wrong, but our doc said the most common protocal now for pseudomonas (my daughter just tested positive a week ago) was to do 2 months of Tobi, and then for the next six months, Tobi every other month. And of course at every appointment, they keep culturing to see if it works. They also put my daughter on the oral antibiotic, Cipro for 28 days. So hopefully between the two, we'll beat it! Good luck.

 

[froggymama]

Michael, I could be wrong, but our doc said the most common protocal now for pseudomonas (my daughter just tested positive a week ago) was to do 2 months of Tobi, and then for the next six months, Tobi every other month. And of course at every appointment, they keep culturing to see if it works. They also put my daughter on the oral antibiotic, Cipro for 28 days. So hopefully between the two, we'll beat it! Good luck.

 

[froggymama]

Michael, I could be wrong, but our doc said the most common protocal now for pseudomonas (my daughter just tested positive a week ago) was to do 2 months of Tobi, and then for the next six months, Tobi every other month. And of course at every appointment, they keep culturing to see if it works. They also put my daughter on the oral antibiotic, Cipro for 28 days. So hopefully between the two, we'll beat it! Good luck.

 

[froggymama]

Michael, I could be wrong, but our doc said the most common protocal now for pseudomonas (my daughter just tested positive a week ago) was to do 2 months of Tobi, and then for the next six months, Tobi every other month. And of course at every appointment, they keep culturing to see if it works. They also put my daughter on the oral antibiotic, Cipro for 28 days. So hopefully between the two, we'll beat it! Good luck.