Dr Appt Today

scrapper1264

New member
Ok, so DS5 has been on tobi for 3 1/2 wks and I asked the dr when they would do another throat culture to see if the bacteria is still there. He said people w/CF always have bacteria with the thick mucus in their lungs. He said DS would get throat cultures every 6 mos. He said if he got sick then they would put him back on the tobi because that means the bacteria is back. He said DS needs to continue his vest/pulmozyme to keep his mucus under control.

Does that sound like what other drs are saying?
 

scrapper1264

New member
Ok, so DS5 has been on tobi for 3 1/2 wks and I asked the dr when they would do another throat culture to see if the bacteria is still there. He said people w/CF always have bacteria with the thick mucus in their lungs. He said DS would get throat cultures every 6 mos. He said if he got sick then they would put him back on the tobi because that means the bacteria is back. He said DS needs to continue his vest/pulmozyme to keep his mucus under control.

Does that sound like what other drs are saying?
 

scrapper1264

New member
Ok, so DS5 has been on tobi for 3 1/2 wks and I asked the dr when they would do another throat culture to see if the bacteria is still there. He said people w/CF always have bacteria with the thick mucus in their lungs. He said DS would get throat cultures every 6 mos. He said if he got sick then they would put him back on the tobi because that means the bacteria is back. He said DS needs to continue his vest/pulmozyme to keep his mucus under control.

Does that sound like what other drs are saying?
 

scrapper1264

New member
Ok, so DS5 has been on tobi for 3 1/2 wks and I asked the dr when they would do another throat culture to see if the bacteria is still there. He said people w/CF always have bacteria with the thick mucus in their lungs. He said DS would get throat cultures every 6 mos. He said if he got sick then they would put him back on the tobi because that means the bacteria is back. He said DS needs to continue his vest/pulmozyme to keep his mucus under control.

Does that sound like what other drs are saying?
 

scrapper1264

New member
Ok, so DS5 has been on tobi for 3 1/2 wks and I asked the dr when they would do another throat culture to see if the bacteria is still there. He said people w/CF always have bacteria with the thick mucus in their lungs. He said DS would get throat cultures every 6 mos. He said if he got sick then they would put him back on the tobi because that means the bacteria is back. He said DS needs to continue his vest/pulmozyme to keep his mucus under control.

Does that sound like what other drs are saying?
 

Ratatosk

Administrator
Staff member
When DS first cultured pseudomonas and was put on tobi, the one clinic told us he needed to stay on it -- 4 weeks on, 4 weeks off for at least a year. The other local clinic told us he needed two clear cultures and at the time we went to their CF clinic every 4 months. And for us, it always seemed like he'd get a clear culture and then he'd culture it again. Now that he's older, they usually don't do throat cultures anymore -- the RT uses hypertonic saline, hooks him to the vest and has him try to hack up a big sputum sample.

Normally we do the vest/cpt three times a day, pulmozyme once a day. If he gets an upper respiratory infection, we increase the length of time using the vest and add an extra vest treatment or two.
 

Ratatosk

Administrator
Staff member
When DS first cultured pseudomonas and was put on tobi, the one clinic told us he needed to stay on it -- 4 weeks on, 4 weeks off for at least a year. The other local clinic told us he needed two clear cultures and at the time we went to their CF clinic every 4 months. And for us, it always seemed like he'd get a clear culture and then he'd culture it again. Now that he's older, they usually don't do throat cultures anymore -- the RT uses hypertonic saline, hooks him to the vest and has him try to hack up a big sputum sample.

Normally we do the vest/cpt three times a day, pulmozyme once a day. If he gets an upper respiratory infection, we increase the length of time using the vest and add an extra vest treatment or two.
 

Ratatosk

Administrator
Staff member
When DS first cultured pseudomonas and was put on tobi, the one clinic told us he needed to stay on it -- 4 weeks on, 4 weeks off for at least a year. The other local clinic told us he needed two clear cultures and at the time we went to their CF clinic every 4 months. And for us, it always seemed like he'd get a clear culture and then he'd culture it again. Now that he's older, they usually don't do throat cultures anymore -- the RT uses hypertonic saline, hooks him to the vest and has him try to hack up a big sputum sample.

Normally we do the vest/cpt three times a day, pulmozyme once a day. If he gets an upper respiratory infection, we increase the length of time using the vest and add an extra vest treatment or two.
 

Ratatosk

Administrator
Staff member
When DS first cultured pseudomonas and was put on tobi, the one clinic told us he needed to stay on it -- 4 weeks on, 4 weeks off for at least a year. The other local clinic told us he needed two clear cultures and at the time we went to their CF clinic every 4 months. And for us, it always seemed like he'd get a clear culture and then he'd culture it again. Now that he's older, they usually don't do throat cultures anymore -- the RT uses hypertonic saline, hooks him to the vest and has him try to hack up a big sputum sample.

Normally we do the vest/cpt three times a day, pulmozyme once a day. If he gets an upper respiratory infection, we increase the length of time using the vest and add an extra vest treatment or two.
 

Ratatosk

Administrator
Staff member
When DS first cultured pseudomonas and was put on tobi, the one clinic told us he needed to stay on it -- 4 weeks on, 4 weeks off for at least a year. The other local clinic told us he needed two clear cultures and at the time we went to their CF clinic every 4 months. And for us, it always seemed like he'd get a clear culture and then he'd culture it again. Now that he's older, they usually don't do throat cultures anymore -- the RT uses hypertonic saline, hooks him to the vest and has him try to hack up a big sputum sample.

Normally we do the vest/cpt three times a day, pulmozyme once a day. If he gets an upper respiratory infection, we increase the length of time using the vest and add an extra vest treatment or two.
 

AUradar

New member
when my daughter cultured PA she went on Tobi 28 days on, 28 days off. Its been a while. She's 4 and while we do deep throat cultures on each visit, the Dr doesn't put a lot of faith in them. She says at that age they aren't convinced they get good samples. Plus the fact the lab at the hosipital suxs. With older kids the cultures correlate very well to bronch samples.

I haven't heard of one time doses of Tobi, but then thats just me
 

AUradar

New member
when my daughter cultured PA she went on Tobi 28 days on, 28 days off. Its been a while. She's 4 and while we do deep throat cultures on each visit, the Dr doesn't put a lot of faith in them. She says at that age they aren't convinced they get good samples. Plus the fact the lab at the hosipital suxs. With older kids the cultures correlate very well to bronch samples.

I haven't heard of one time doses of Tobi, but then thats just me
 

AUradar

New member
when my daughter cultured PA she went on Tobi 28 days on, 28 days off. Its been a while. She's 4 and while we do deep throat cultures on each visit, the Dr doesn't put a lot of faith in them. She says at that age they aren't convinced they get good samples. Plus the fact the lab at the hosipital suxs. With older kids the cultures correlate very well to bronch samples.

I haven't heard of one time doses of Tobi, but then thats just me
 

AUradar

New member
when my daughter cultured PA she went on Tobi 28 days on, 28 days off. Its been a while. She's 4 and while we do deep throat cultures on each visit, the Dr doesn't put a lot of faith in them. She says at that age they aren't convinced they get good samples. Plus the fact the lab at the hosipital suxs. With older kids the cultures correlate very well to bronch samples.

I haven't heard of one time doses of Tobi, but then thats just me
 

AUradar

New member
when my daughter cultured PA she went on Tobi 28 days on, 28 days off. Its been a while. She's 4 and while we do deep throat cultures on each visit, the Dr doesn't put a lot of faith in them. She says at that age they aren't convinced they get good samples. Plus the fact the lab at the hosipital suxs. With older kids the cultures correlate very well to bronch samples.

I haven't heard of one time doses of Tobi, but then thats just me
 
T

TonyaH

Guest
Hi Sharon,

Cultures taken from throat swabs are not always accurate because unless your child has just had a productive cough, it is difficult to know you really got a good sample of what is in the lungs. When your child is a little older and can produce a sputum sample, that will make for much more accurate cultures.

That being said, it is still CFF protocol for affiiliated clinics to do cultures every 3 months, wether they are sputum samples or throat swabs. You may want to ask your doctor why they only run cultures every 6 months.

6 months give any new bugs a long time to colonize and become more difficult to fight. I think I would definitely talk about that at your next appt.

Good luck!
 
T

TonyaH

Guest
Hi Sharon,

Cultures taken from throat swabs are not always accurate because unless your child has just had a productive cough, it is difficult to know you really got a good sample of what is in the lungs. When your child is a little older and can produce a sputum sample, that will make for much more accurate cultures.

That being said, it is still CFF protocol for affiiliated clinics to do cultures every 3 months, wether they are sputum samples or throat swabs. You may want to ask your doctor why they only run cultures every 6 months.

6 months give any new bugs a long time to colonize and become more difficult to fight. I think I would definitely talk about that at your next appt.

Good luck!
 
T

TonyaH

Guest
Hi Sharon,

Cultures taken from throat swabs are not always accurate because unless your child has just had a productive cough, it is difficult to know you really got a good sample of what is in the lungs. When your child is a little older and can produce a sputum sample, that will make for much more accurate cultures.

That being said, it is still CFF protocol for affiiliated clinics to do cultures every 3 months, wether they are sputum samples or throat swabs. You may want to ask your doctor why they only run cultures every 6 months.

6 months give any new bugs a long time to colonize and become more difficult to fight. I think I would definitely talk about that at your next appt.

Good luck!
 
T

TonyaH

Guest
Hi Sharon,

Cultures taken from throat swabs are not always accurate because unless your child has just had a productive cough, it is difficult to know you really got a good sample of what is in the lungs. When your child is a little older and can produce a sputum sample, that will make for much more accurate cultures.

That being said, it is still CFF protocol for affiiliated clinics to do cultures every 3 months, wether they are sputum samples or throat swabs. You may want to ask your doctor why they only run cultures every 6 months.

6 months give any new bugs a long time to colonize and become more difficult to fight. I think I would definitely talk about that at your next appt.

Good luck!
 
T

TonyaH

Guest
Hi Sharon,

Cultures taken from throat swabs are not always accurate because unless your child has just had a productive cough, it is difficult to know you really got a good sample of what is in the lungs. When your child is a little older and can produce a sputum sample, that will make for much more accurate cultures.

That being said, it is still CFF protocol for affiiliated clinics to do cultures every 3 months, wether they are sputum samples or throat swabs. You may want to ask your doctor why they only run cultures every 6 months.

6 months give any new bugs a long time to colonize and become more difficult to fight. I think I would definitely talk about that at your next appt.

Good luck!
 
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