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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Question for Parents
- Thread starter JennifersHope
- Start date
Katy cultured PA on her first CF doc visit in August 2006. We were on TOBI for 3 months straight, and are now doing the 28 on/28 off. She is cultured every 2 months, and we have had 3 clear cultures since then. With our doc, I don't know that we will ever come off of it. His take on it is that if she does culture PA, it is already too late (i.e. lung damage could already have been done, mucoid strain developed, etc.).
I worry about side effects from long-term (or LIFE) use, but right now I'm still learning so I haven't challenged him (yet........). It was interesting to hear Melissa's take on this.
I worry about side effects from long-term (or LIFE) use, but right now I'm still learning so I haven't challenged him (yet........). It was interesting to hear Melissa's take on this.
Katy cultured PA on her first CF doc visit in August 2006. We were on TOBI for 3 months straight, and are now doing the 28 on/28 off. She is cultured every 2 months, and we have had 3 clear cultures since then. With our doc, I don't know that we will ever come off of it. His take on it is that if she does culture PA, it is already too late (i.e. lung damage could already have been done, mucoid strain developed, etc.).
I worry about side effects from long-term (or LIFE) use, but right now I'm still learning so I haven't challenged him (yet........). It was interesting to hear Melissa's take on this.
I worry about side effects from long-term (or LIFE) use, but right now I'm still learning so I haven't challenged him (yet........). It was interesting to hear Melissa's take on this.
Katy cultured PA on her first CF doc visit in August 2006. We were on TOBI for 3 months straight, and are now doing the 28 on/28 off. She is cultured every 2 months, and we have had 3 clear cultures since then. With our doc, I don't know that we will ever come off of it. His take on it is that if she does culture PA, it is already too late (i.e. lung damage could already have been done, mucoid strain developed, etc.).
I worry about side effects from long-term (or LIFE) use, but right now I'm still learning so I haven't challenged him (yet........). It was interesting to hear Melissa's take on this.
I worry about side effects from long-term (or LIFE) use, but right now I'm still learning so I haven't challenged him (yet........). It was interesting to hear Melissa's take on this.
T
tammykrumrey
Guest
My oldest daughter has not cultured PA, and she does not regulary take Tobi. She only culures MRSA and staph. But, she has been on Tobi about three times in the past four years. basically during the times that she hasn't gotten better on oral antibiotics, we have moved on to Tobi just in case she has PA, but we may not be catching it in the culture.
My youngest has cultured PA, and is in the EPIC study. The 'path' that she was given in the course of the study is to take Tobi only when she is culturing positive for PA, not one month on one month off like others. She has had two positive PA cultures, and her last culture was clear of it. She is going back tomorrow, and I am hoping for a clear one, but not holding my breath!
My youngest has cultured PA, and is in the EPIC study. The 'path' that she was given in the course of the study is to take Tobi only when she is culturing positive for PA, not one month on one month off like others. She has had two positive PA cultures, and her last culture was clear of it. She is going back tomorrow, and I am hoping for a clear one, but not holding my breath!
T
tammykrumrey
Guest
My oldest daughter has not cultured PA, and she does not regulary take Tobi. She only culures MRSA and staph. But, she has been on Tobi about three times in the past four years. basically during the times that she hasn't gotten better on oral antibiotics, we have moved on to Tobi just in case she has PA, but we may not be catching it in the culture.
My youngest has cultured PA, and is in the EPIC study. The 'path' that she was given in the course of the study is to take Tobi only when she is culturing positive for PA, not one month on one month off like others. She has had two positive PA cultures, and her last culture was clear of it. She is going back tomorrow, and I am hoping for a clear one, but not holding my breath!
My youngest has cultured PA, and is in the EPIC study. The 'path' that she was given in the course of the study is to take Tobi only when she is culturing positive for PA, not one month on one month off like others. She has had two positive PA cultures, and her last culture was clear of it. She is going back tomorrow, and I am hoping for a clear one, but not holding my breath!
T
tammykrumrey
Guest
My oldest daughter has not cultured PA, and she does not regulary take Tobi. She only culures MRSA and staph. But, she has been on Tobi about three times in the past four years. basically during the times that she hasn't gotten better on oral antibiotics, we have moved on to Tobi just in case she has PA, but we may not be catching it in the culture.
My youngest has cultured PA, and is in the EPIC study. The 'path' that she was given in the course of the study is to take Tobi only when she is culturing positive for PA, not one month on one month off like others. She has had two positive PA cultures, and her last culture was clear of it. She is going back tomorrow, and I am hoping for a clear one, but not holding my breath!
My youngest has cultured PA, and is in the EPIC study. The 'path' that she was given in the course of the study is to take Tobi only when she is culturing positive for PA, not one month on one month off like others. She has had two positive PA cultures, and her last culture was clear of it. She is going back tomorrow, and I am hoping for a clear one, but not holding my breath!
Our clinic doctors do not recommend TOBI as preventative treatment, although they do treat aggressively for first cultures or if someone continues to culture PA they do the 28 on 28 off. They said they feel carefully chose antibiotic therapy is more effective than a blanket approach for many reasons including the potential for resistance strains, weakened immune system from constant antibiotic usage, and chronic yeast issues and poor gut ecology (risk mostly with oral prophylactics I believe). They feel (as does DR. Warwick) lung clearance is what is most important to lung health...if the mucus is moving and thin it doesn't give bacteria a chance to set up shop.
Ben cultured PA once, was treated with inhaled TOBI for 28 days. Upon subsequent reculturing he has been free of it ever since (going on over a year now).
In addition to 2x daily vest and CPT, we also chose to do GSH therapy to provide the lungs with antioxident protection and keep mucus thin. He started several months after his first PA culture on inhaled and occasionally oral (though he doens't seem to require oral at this time). I firmly believe this is what has helped him stay clear among other things. THis is personal decision however as the CFF has been slow to support appropriate studies on oral and inhaled GSH. THere were 2006 studies listed and now they have dropped off the site with no information about whether they were continued or not.
This has been our experience...we continue to keep our eyes open to other therapies.
Ben cultured PA once, was treated with inhaled TOBI for 28 days. Upon subsequent reculturing he has been free of it ever since (going on over a year now).
In addition to 2x daily vest and CPT, we also chose to do GSH therapy to provide the lungs with antioxident protection and keep mucus thin. He started several months after his first PA culture on inhaled and occasionally oral (though he doens't seem to require oral at this time). I firmly believe this is what has helped him stay clear among other things. THis is personal decision however as the CFF has been slow to support appropriate studies on oral and inhaled GSH. THere were 2006 studies listed and now they have dropped off the site with no information about whether they were continued or not.
This has been our experience...we continue to keep our eyes open to other therapies.
Our clinic doctors do not recommend TOBI as preventative treatment, although they do treat aggressively for first cultures or if someone continues to culture PA they do the 28 on 28 off. They said they feel carefully chose antibiotic therapy is more effective than a blanket approach for many reasons including the potential for resistance strains, weakened immune system from constant antibiotic usage, and chronic yeast issues and poor gut ecology (risk mostly with oral prophylactics I believe). They feel (as does DR. Warwick) lung clearance is what is most important to lung health...if the mucus is moving and thin it doesn't give bacteria a chance to set up shop.
Ben cultured PA once, was treated with inhaled TOBI for 28 days. Upon subsequent reculturing he has been free of it ever since (going on over a year now).
In addition to 2x daily vest and CPT, we also chose to do GSH therapy to provide the lungs with antioxident protection and keep mucus thin. He started several months after his first PA culture on inhaled and occasionally oral (though he doens't seem to require oral at this time). I firmly believe this is what has helped him stay clear among other things. THis is personal decision however as the CFF has been slow to support appropriate studies on oral and inhaled GSH. THere were 2006 studies listed and now they have dropped off the site with no information about whether they were continued or not.
This has been our experience...we continue to keep our eyes open to other therapies.
Ben cultured PA once, was treated with inhaled TOBI for 28 days. Upon subsequent reculturing he has been free of it ever since (going on over a year now).
In addition to 2x daily vest and CPT, we also chose to do GSH therapy to provide the lungs with antioxident protection and keep mucus thin. He started several months after his first PA culture on inhaled and occasionally oral (though he doens't seem to require oral at this time). I firmly believe this is what has helped him stay clear among other things. THis is personal decision however as the CFF has been slow to support appropriate studies on oral and inhaled GSH. THere were 2006 studies listed and now they have dropped off the site with no information about whether they were continued or not.
This has been our experience...we continue to keep our eyes open to other therapies.
Our clinic doctors do not recommend TOBI as preventative treatment, although they do treat aggressively for first cultures or if someone continues to culture PA they do the 28 on 28 off. They said they feel carefully chose antibiotic therapy is more effective than a blanket approach for many reasons including the potential for resistance strains, weakened immune system from constant antibiotic usage, and chronic yeast issues and poor gut ecology (risk mostly with oral prophylactics I believe). They feel (as does DR. Warwick) lung clearance is what is most important to lung health...if the mucus is moving and thin it doesn't give bacteria a chance to set up shop.
Ben cultured PA once, was treated with inhaled TOBI for 28 days. Upon subsequent reculturing he has been free of it ever since (going on over a year now).
In addition to 2x daily vest and CPT, we also chose to do GSH therapy to provide the lungs with antioxident protection and keep mucus thin. He started several months after his first PA culture on inhaled and occasionally oral (though he doens't seem to require oral at this time). I firmly believe this is what has helped him stay clear among other things. THis is personal decision however as the CFF has been slow to support appropriate studies on oral and inhaled GSH. THere were 2006 studies listed and now they have dropped off the site with no information about whether they were continued or not.
This has been our experience...we continue to keep our eyes open to other therapies.
Ben cultured PA once, was treated with inhaled TOBI for 28 days. Upon subsequent reculturing he has been free of it ever since (going on over a year now).
In addition to 2x daily vest and CPT, we also chose to do GSH therapy to provide the lungs with antioxident protection and keep mucus thin. He started several months after his first PA culture on inhaled and occasionally oral (though he doens't seem to require oral at this time). I firmly believe this is what has helped him stay clear among other things. THis is personal decision however as the CFF has been slow to support appropriate studies on oral and inhaled GSH. THere were 2006 studies listed and now they have dropped off the site with no information about whether they were continued or not.
This has been our experience...we continue to keep our eyes open to other therapies.
2
2perfectboys
Guest
I have never heard of TObi as preventative???? Seems to go against the whole antibiotics only when needed, but not saying it could not work. Could it keep PA away, of if u r doing TObi and get PA then would Tobi not be effective?
2
2perfectboys
Guest
I have never heard of TObi as preventative???? Seems to go against the whole antibiotics only when needed, but not saying it could not work. Could it keep PA away, of if u r doing TObi and get PA then would Tobi not be effective?
2
2perfectboys
Guest
I have never heard of TObi as preventative???? Seems to go against the whole antibiotics only when needed, but not saying it could not work. Could it keep PA away, of if u r doing TObi and get PA then would Tobi not be effective?