Question for Parents

J

JennifersHope

New member
Hi,

Just a quick question that came up in chat tonight.. I do not culture PA but I am on inhaled Tobi.. 28 days on 28 days off schedule... My doctor put me on it so that in the event I am exposed to PA I will be covered.. and to prevent me from getting it all together....I have been on it for a few years now and I was just wondering if anyone else has their kids on Tobi that do not culture PA on a regular basis??

So far it is working for me but some might argue that it is pointless to do it if I don't culture PA... IF YOU ARE IN THIS SITUATION.... please tell me what you are doing if anything??

Thanks so much

Jennifer
 
J

JennifersHope

New member
Hi,

Just a quick question that came up in chat tonight.. I do not culture PA but I am on inhaled Tobi.. 28 days on 28 days off schedule... My doctor put me on it so that in the event I am exposed to PA I will be covered.. and to prevent me from getting it all together....I have been on it for a few years now and I was just wondering if anyone else has their kids on Tobi that do not culture PA on a regular basis??

So far it is working for me but some might argue that it is pointless to do it if I don't culture PA... IF YOU ARE IN THIS SITUATION.... please tell me what you are doing if anything??

Thanks so much

Jennifer
 
J

JennifersHope

New member
Hi,

Just a quick question that came up in chat tonight.. I do not culture PA but I am on inhaled Tobi.. 28 days on 28 days off schedule... My doctor put me on it so that in the event I am exposed to PA I will be covered.. and to prevent me from getting it all together....I have been on it for a few years now and I was just wondering if anyone else has their kids on Tobi that do not culture PA on a regular basis??

So far it is working for me but some might argue that it is pointless to do it if I don't culture PA... IF YOU ARE IN THIS SITUATION.... please tell me what you are doing if anything??

Thanks so much

Jennifer
 
A

AnD

New member
I didn't realize that that was the reason for the 28 on, 28 off. I just do it if I start to get sick... I'm interested in the answers to this too<img src="i/expressions/face-icon-small-wink.gif" border="0"> .
 
A

AnD

New member
I didn't realize that that was the reason for the 28 on, 28 off. I just do it if I start to get sick... I'm interested in the answers to this too<img src="i/expressions/face-icon-small-wink.gif" border="0"> .
 
A

AnD

New member
I didn't realize that that was the reason for the 28 on, 28 off. I just do it if I start to get sick... I'm interested in the answers to this too<img src="i/expressions/face-icon-small-wink.gif" border="0"> .
 
2

2005CFmom

Super Moderator
So far Sarah has only cultured Staph, no PA. She is not on TOBI to prevent PA infection. We are only about 18 months into her diagnosis so I'm still learning, trying to sort out what treatments to push for.

At first when I read your post I thought it sounded like a good idea, being on TOBI to prevent PA in the first place. But the more I thought about it I don't think it would be a good idea for Sarah. I would be worried about side effects...how many years would her body tolerate the TOBI. I have read of people having hearing problems (I know mainly from IV though, but also with TOBI) so I guess I don't want to use up her "time" on TOBI when it is not really needed.

So for now I think I will just push for frequent cultures to hopefully diagnose PA as soon as possible and then treat aggressively from there.

I will definately have to think about this some more.
 
2

2005CFmom

Super Moderator
So far Sarah has only cultured Staph, no PA. She is not on TOBI to prevent PA infection. We are only about 18 months into her diagnosis so I'm still learning, trying to sort out what treatments to push for.

At first when I read your post I thought it sounded like a good idea, being on TOBI to prevent PA in the first place. But the more I thought about it I don't think it would be a good idea for Sarah. I would be worried about side effects...how many years would her body tolerate the TOBI. I have read of people having hearing problems (I know mainly from IV though, but also with TOBI) so I guess I don't want to use up her "time" on TOBI when it is not really needed.

So for now I think I will just push for frequent cultures to hopefully diagnose PA as soon as possible and then treat aggressively from there.

I will definately have to think about this some more.
 
2

2005CFmom

Super Moderator
So far Sarah has only cultured Staph, no PA. She is not on TOBI to prevent PA infection. We are only about 18 months into her diagnosis so I'm still learning, trying to sort out what treatments to push for.

At first when I read your post I thought it sounded like a good idea, being on TOBI to prevent PA in the first place. But the more I thought about it I don't think it would be a good idea for Sarah. I would be worried about side effects...how many years would her body tolerate the TOBI. I have read of people having hearing problems (I know mainly from IV though, but also with TOBI) so I guess I don't want to use up her "time" on TOBI when it is not really needed.

So for now I think I will just push for frequent cultures to hopefully diagnose PA as soon as possible and then treat aggressively from there.

I will definately have to think about this some more.
 
J

JazzysMom

New member
I had cultured PA for years before TObi was out. IF it was available when I was a youngster and it could/would have prevented or delayed my culturing PA....you better believe I would have used it. Of course this is in hind sight. Side affects and all.........I would rather lose my hearing then not breath if I truly had to choose from the two!
 
J

JazzysMom

New member
I had cultured PA for years before TObi was out. IF it was available when I was a youngster and it could/would have prevented or delayed my culturing PA....you better believe I would have used it. Of course this is in hind sight. Side affects and all.........I would rather lose my hearing then not breath if I truly had to choose from the two!
 
J

JazzysMom

New member
I had cultured PA for years before TObi was out. IF it was available when I was a youngster and it could/would have prevented or delayed my culturing PA....you better believe I would have used it. Of course this is in hind sight. Side affects and all.........I would rather lose my hearing then not breath if I truly had to choose from the two!
 
R

Rebjane

Super Moderator
Hi Jennifer,

My daughter is 4 with CF, she has not yet cultured pseudo(knock on wood) but she regularly cultures MRSA. We are not on TOBI either. I think doing more cultures like the previous poster said is a great idea, we are due for a clinic visit next week so I'll ask for a culture. I think airway clearance is very important. My daughter does VEST 3 times a day plus alb/pulmicort and pulmozyme. My daughter's CF doc I doubt would do prophylactic TOBI, that's my guess.
 
R

Rebjane

Super Moderator
Hi Jennifer,

My daughter is 4 with CF, she has not yet cultured pseudo(knock on wood) but she regularly cultures MRSA. We are not on TOBI either. I think doing more cultures like the previous poster said is a great idea, we are due for a clinic visit next week so I'll ask for a culture. I think airway clearance is very important. My daughter does VEST 3 times a day plus alb/pulmicort and pulmozyme. My daughter's CF doc I doubt would do prophylactic TOBI, that's my guess.
 
R

Rebjane

Super Moderator
Hi Jennifer,

My daughter is 4 with CF, she has not yet cultured pseudo(knock on wood) but she regularly cultures MRSA. We are not on TOBI either. I think doing more cultures like the previous poster said is a great idea, we are due for a clinic visit next week so I'll ask for a culture. I think airway clearance is very important. My daughter does VEST 3 times a day plus alb/pulmicort and pulmozyme. My daughter's CF doc I doubt would do prophylactic TOBI, that's my guess.
 
R

Ratatosk

Administrator
Staff member
When DS was 3 months old he cultured something he apparently brought home from the NICU -- enterbactor cholae and had a horrible cough, so his ID doctor put him on Tobi. Then following month his CF clinic culture showed PA. Those doctors and didn't afterwards. The local CF doctors take patients off tobi after they don't culture it two times in a row; however, the ID doctor said -- he usually keeps his patients on it for a year after the first culture shows up. After a year, he didn't culture it, but the ID doctor said he'd like him on it thru the winter -- so 6 months longer.
 
R

Ratatosk

Administrator
Staff member
When DS was 3 months old he cultured something he apparently brought home from the NICU -- enterbactor cholae and had a horrible cough, so his ID doctor put him on Tobi. Then following month his CF clinic culture showed PA. Those doctors and didn't afterwards. The local CF doctors take patients off tobi after they don't culture it two times in a row; however, the ID doctor said -- he usually keeps his patients on it for a year after the first culture shows up. After a year, he didn't culture it, but the ID doctor said he'd like him on it thru the winter -- so 6 months longer.
 
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