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Pseudo
- Thread starter anonymous
- Start date
Tobi is a very very difficult bug to get rid of. It's my understanding that with the non-mucoid and if caught at an early age -- before the age of 5 it can be erradicated with tobi. DS has been on tobi since 3 months and he'll be three this fall. He's nevre gotten rid of PA.
Tobi is a very very difficult bug to get rid of. It's my understanding that with the non-mucoid and if caught at an early age -- before the age of 5 it can be erradicated with tobi. DS has been on tobi since 3 months and he'll be three this fall. He's nevre gotten rid of PA.
thelizardqueen
New member
Pseudo can be erradicated with TOBI in children under 5, but ONLY if the pseduo has not colonized. If your child cultures Pseudo for a period of 26 months, then it has colonized and you won't get rid of it. Most CFer's do have pseduo, and that's fine. Its not a death sentence at all. I've cultured Pseudo off and on for about 16 years now. That being said, Pseudo can also go "dormat". This is where the bacteria will "go to sleep", and won't materialize itself sometimes. There are also 4 different strains of Pseudo. There's Pseudo 1, 2, 3, & +4. More often then not I culture Pseudo 2 & 4. The various strains simply mean various strengths. Pseudo +4 is a little bit harder to control then 2 we'll say, but again Pseudo is a normal bacteria that we CFer's catch. You can catch Pseudo pretty much anywhere. Just be very diligent with treatment and physio so that it won't spiral out of control. I've had it for 16 years and am still very healthy for a CF, and my pseudo is only really contained to my left lobe. Let me know if you have any other questions Charlotte!
thelizardqueen
New member
Pseudo can be erradicated with TOBI in children under 5, but ONLY if the pseduo has not colonized. If your child cultures Pseudo for a period of 26 months, then it has colonized and you won't get rid of it. Most CFer's do have pseduo, and that's fine. Its not a death sentence at all. I've cultured Pseudo off and on for about 16 years now. That being said, Pseudo can also go "dormat". This is where the bacteria will "go to sleep", and won't materialize itself sometimes. There are also 4 different strains of Pseudo. There's Pseudo 1, 2, 3, & +4. More often then not I culture Pseudo 2 & 4. The various strains simply mean various strengths. Pseudo +4 is a little bit harder to control then 2 we'll say, but again Pseudo is a normal bacteria that we CFer's catch. You can catch Pseudo pretty much anywhere. Just be very diligent with treatment and physio so that it won't spiral out of control. I've had it for 16 years and am still very healthy for a CF, and my pseudo is only really contained to my left lobe. Let me know if you have any other questions Charlotte!
Hi Liz - How does your doc treat the pseudo? My son has been positive twice once they treated with oral antibiotics and once with the TOBI. I know one kid that they do the TOBI 28 days on then 28 off continously. My son would hate that. That's one thing I never understood - It sounds like you can get that so easy that it just seems weird to try to treat it each time. But I don't understand it all either.
Mother of Tanner 9 wCF
Mother of Tanner 9 wCF
Hi Liz - How does your doc treat the pseudo? My son has been positive twice once they treated with oral antibiotics and once with the TOBI. I know one kid that they do the TOBI 28 days on then 28 off continously. My son would hate that. That's one thing I never understood - It sounds like you can get that so easy that it just seems weird to try to treat it each time. But I don't understand it all either.
Mother of Tanner 9 wCF
Mother of Tanner 9 wCF
DS was 3 months old when he cultured pa. Shows up as a 4+ nonmucoid -- rare. He's been on tobi ever since. His doctor indicated that once they culture PA and are put on tobi, they usually keep them on tobi for at least a year. Then if they don't culture it after a year, they don't have to be on it. DS has always cultured it.
DS was 3 months old when he cultured pa. Shows up as a 4+ nonmucoid -- rare. He's been on tobi ever since. His doctor indicated that once they culture PA and are put on tobi, they usually keep them on tobi for at least a year. Then if they don't culture it after a year, they don't have to be on it. DS has always cultured it.
Tanner is 9 this Friday. I think it was just this last year that it was detected. He was diagnosed at 6 months old. He cultured it then the next 3 mos it didn't show then I think it did again like 6 mos later. He was their feb 7th and they never called and said it showed anything. I was just curious what other doctors were doing to treat it. Tanner never really shows any signs of feeling worse. He never coughs or spits anything up - unless he has a cold - then he'll cough alittle. He always has lots of energy - hopefully that keeps going!! They tryed to show him the huff cough this last time.
Mother of Tanner 9wcf
Mother of Tanner 9wcf
Tanner is 9 this Friday. I think it was just this last year that it was detected. He was diagnosed at 6 months old. He cultured it then the next 3 mos it didn't show then I think it did again like 6 mos later. He was their feb 7th and they never called and said it showed anything. I was just curious what other doctors were doing to treat it. Tanner never really shows any signs of feeling worse. He never coughs or spits anything up - unless he has a cold - then he'll cough alittle. He always has lots of energy - hopefully that keeps going!! They tryed to show him the huff cough this last time.
Mother of Tanner 9wcf
Mother of Tanner 9wcf
sarabeth87
New member
i've cultured every time for the past 3 1/2 years, i'm 18 and on tobi, so i'll prolly never get rid of it.
sarabeth87
New member
i've cultured every time for the past 3 1/2 years, i'm 18 and on tobi, so i'll prolly never get rid of it.
thelizardqueen
New member
Sean - my doc did a bronch on me two years ago because I had severe hemoptysis, and said that the only damage he saw was on the left lobe, and when he did a culture this way, there was no pseudo present. Everytime I get infections, it is always the left lobe. With x-rays I have very MINUTE damage on my right lobe, that never seems to get worse or flair up.
Mother of Tanner - my doc usually has me on oral Cipro for 3 weeks when I culture Pseudo. I started the TOBI one month on, one off when I was 19 and did this for a year. The docs discontinued it when I didn't culture Pseudo for a period of 4 months. After that, the docs decided to put me on one month on, one off every other year as a maintenance. I was at one point on inhaled Colymycen 7 years ago, and it did the trick as well. At this point, my docs are considering putting me on TOBI again as I haven't been on it for about 2 years, because Cipro on its own did the trick. That's not the case right now, as I've been battling a lung infection of the past month that hasn't quite let up.
Mother of Tanner - my doc usually has me on oral Cipro for 3 weeks when I culture Pseudo. I started the TOBI one month on, one off when I was 19 and did this for a year. The docs discontinued it when I didn't culture Pseudo for a period of 4 months. After that, the docs decided to put me on one month on, one off every other year as a maintenance. I was at one point on inhaled Colymycen 7 years ago, and it did the trick as well. At this point, my docs are considering putting me on TOBI again as I haven't been on it for about 2 years, because Cipro on its own did the trick. That's not the case right now, as I've been battling a lung infection of the past month that hasn't quite let up.
thelizardqueen
New member
Sean - my doc did a bronch on me two years ago because I had severe hemoptysis, and said that the only damage he saw was on the left lobe, and when he did a culture this way, there was no pseudo present. Everytime I get infections, it is always the left lobe. With x-rays I have very MINUTE damage on my right lobe, that never seems to get worse or flair up.
Mother of Tanner - my doc usually has me on oral Cipro for 3 weeks when I culture Pseudo. I started the TOBI one month on, one off when I was 19 and did this for a year. The docs discontinued it when I didn't culture Pseudo for a period of 4 months. After that, the docs decided to put me on one month on, one off every other year as a maintenance. I was at one point on inhaled Colymycen 7 years ago, and it did the trick as well. At this point, my docs are considering putting me on TOBI again as I haven't been on it for about 2 years, because Cipro on its own did the trick. That's not the case right now, as I've been battling a lung infection of the past month that hasn't quite let up.
Mother of Tanner - my doc usually has me on oral Cipro for 3 weeks when I culture Pseudo. I started the TOBI one month on, one off when I was 19 and did this for a year. The docs discontinued it when I didn't culture Pseudo for a period of 4 months. After that, the docs decided to put me on one month on, one off every other year as a maintenance. I was at one point on inhaled Colymycen 7 years ago, and it did the trick as well. At this point, my docs are considering putting me on TOBI again as I haven't been on it for about 2 years, because Cipro on its own did the trick. That's not the case right now, as I've been battling a lung infection of the past month that hasn't quite let up.