How aggressive are your CF doctors?

[rosesixtyfive]

Hello, all,
I talked to one of the CF doctors from my clinic today. I asked him if Sam will ever get back to 28 days on, 28 days off, and he said, no, he'll always be on something. He said that the CF center is one of the most aggressive in the country, and that he is the most aggressive with treatment of the doctors at the clinic. He adopts the philosophy I believe they use in Denmark? They just don't let kids come off the antibiotics hopefully to avoid that drop in FEV that occurs after going off of them. I had read before that Denmark had incredible treatment for CF kids and their life expectancy was way higher than anywhere else. So Sam will alternate Cayston and Tobi continuously and have an IV antibiotic at least once a year after culturing pseudomonas twice. They will do a bronchoscopy (his second one) and then probably also put him on Zithromax. Does anyone have experience with being treated so aggressively? I'm for it if it preserves his lung fuction. My only fear is - what if it doesn't work...to be so aggressive from the get-go gives you nothing to hope in if things are not going well. You can't try anything because you're already on it all. Are their any adults with CF out there who have benefited from such aggressive care or wish your CF docs had adopted this philosophy when you were younger?
Thanks,
rosesixtyfive, mother of Sam (7 months) ddf508, and Robin (4 years old) no CF

 

[rosesixtyfive]

Hello, all,
I talked to one of the CF doctors from my clinic today. I asked him if Sam will ever get back to 28 days on, 28 days off, and he said, no, he'll always be on something. He said that the CF center is one of the most aggressive in the country, and that he is the most aggressive with treatment of the doctors at the clinic. He adopts the philosophy I believe they use in Denmark? They just don't let kids come off the antibiotics hopefully to avoid that drop in FEV that occurs after going off of them. I had read before that Denmark had incredible treatment for CF kids and their life expectancy was way higher than anywhere else. So Sam will alternate Cayston and Tobi continuously and have an IV antibiotic at least once a year after culturing pseudomonas twice. They will do a bronchoscopy (his second one) and then probably also put him on Zithromax. Does anyone have experience with being treated so aggressively? I'm for it if it preserves his lung fuction. My only fear is - what if it doesn't work...to be so aggressive from the get-go gives you nothing to hope in if things are not going well. You can't try anything because you're already on it all. Are their any adults with CF out there who have benefited from such aggressive care or wish your CF docs had adopted this philosophy when you were younger?
Thanks,
rosesixtyfive, mother of Sam (7 months) ddf508, and Robin (4 years old) no CF

 

[rosesixtyfive]

Hello, all,
I talked to one of the CF doctors from my clinic today. I asked him if Sam will ever get back to 28 days on, 28 days off, and he said, no, he'll always be on something. He said that the CF center is one of the most aggressive in the country, and that he is the most aggressive with treatment of the doctors at the clinic. He adopts the philosophy I believe they use in Denmark? They just don't let kids come off the antibiotics hopefully to avoid that drop in FEV that occurs after going off of them. I had read before that Denmark had incredible treatment for CF kids and their life expectancy was way higher than anywhere else. So Sam will alternate Cayston and Tobi continuously and have an IV antibiotic at least once a year after culturing pseudomonas twice. They will do a bronchoscopy (his second one) and then probably also put him on Zithromax. Does anyone have experience with being treated so aggressively? I'm for it if it preserves his lung fuction. My only fear is - what if it doesn't work...to be so aggressive from the get-go gives you nothing to hope in if things are not going well. You can't try anything because you're already on it all. Are their any adults with CF out there who have benefited from such aggressive care or wish your CF docs had adopted this philosophy when you were younger?
Thanks,
rosesixtyfive, mother of Sam (7 months) ddf508, and Robin (4 years old) no CF

 

[rosesixtyfive]

Hello, all,
I talked to one of the CF doctors from my clinic today. I asked him if Sam will ever get back to 28 days on, 28 days off, and he said, no, he'll always be on something. He said that the CF center is one of the most aggressive in the country, and that he is the most aggressive with treatment of the doctors at the clinic. He adopts the philosophy I believe they use in Denmark? They just don't let kids come off the antibiotics hopefully to avoid that drop in FEV that occurs after going off of them. I had read before that Denmark had incredible treatment for CF kids and their life expectancy was way higher than anywhere else. So Sam will alternate Cayston and Tobi continuously and have an IV antibiotic at least once a year after culturing pseudomonas twice. They will do a bronchoscopy (his second one) and then probably also put him on Zithromax. Does anyone have experience with being treated so aggressively? I'm for it if it preserves his lung fuction. My only fear is - what if it doesn't work...to be so aggressive from the get-go gives you nothing to hope in if things are not going well. You can't try anything because you're already on it all. Are their any adults with CF out there who have benefited from such aggressive care or wish your CF docs had adopted this philosophy when you were younger?
Thanks,
rosesixtyfive, mother of Sam (7 months) ddf508, and Robin (4 years old) no CF

 

[rosesixtyfive]

Hello, all,
<br />I talked to one of the CF doctors from my clinic today. I asked him if Sam will ever get back to 28 days on, 28 days off, and he said, no, he'll always be on something. He said that the CF center is one of the most aggressive in the country, and that he is the most aggressive with treatment of the doctors at the clinic. He adopts the philosophy I believe they use in Denmark? They just don't let kids come off the antibiotics hopefully to avoid that drop in FEV that occurs after going off of them. I had read before that Denmark had incredible treatment for CF kids and their life expectancy was way higher than anywhere else. So Sam will alternate Cayston and Tobi continuously and have an IV antibiotic at least once a year after culturing pseudomonas twice. They will do a bronchoscopy (his second one) and then probably also put him on Zithromax. Does anyone have experience with being treated so aggressively? I'm for it if it preserves his lung fuction. My only fear is - what if it doesn't work...to be so aggressive from the get-go gives you nothing to hope in if things are not going well. You can't try anything because you're already on it all. Are their any adults with CF out there who have benefited from such aggressive care or wish your CF docs had adopted this philosophy when you were younger?
<br />Thanks,
<br />rosesixtyfive, mother of Sam (7 months) ddf508, and Robin (4 years old) no CF

 

[Ratatosk]

DS' doctors are similarly aggressive. DS has been on tobi since he was 3 months old, he's now almost 7. Zithromax since age 2 1/2. He's had a couple lung and CT scans... I don't have fears in terms of being too aggressive because I guess I've seen the other side of it locally in which kids aren't getting treated proactively. When we'd go to the local cf clinic I'd hear that tell tale cough, see the stereotypically sickly, pale cf child.

I do get a bit saddened, overwhelmed when yet another medication gets added to the mix. It's a bit of an adjustment at first, but soon it becomes routine.

Also, I don't ever want to look back with regret that we didn't do something we should've.

 

[Ratatosk]

DS' doctors are similarly aggressive. DS has been on tobi since he was 3 months old, he's now almost 7. Zithromax since age 2 1/2. He's had a couple lung and CT scans... I don't have fears in terms of being too aggressive because I guess I've seen the other side of it locally in which kids aren't getting treated proactively. When we'd go to the local cf clinic I'd hear that tell tale cough, see the stereotypically sickly, pale cf child.

I do get a bit saddened, overwhelmed when yet another medication gets added to the mix. It's a bit of an adjustment at first, but soon it becomes routine.

Also, I don't ever want to look back with regret that we didn't do something we should've.

 

[Ratatosk]

DS' doctors are similarly aggressive. DS has been on tobi since he was 3 months old, he's now almost 7. Zithromax since age 2 1/2. He's had a couple lung and CT scans... I don't have fears in terms of being too aggressive because I guess I've seen the other side of it locally in which kids aren't getting treated proactively. When we'd go to the local cf clinic I'd hear that tell tale cough, see the stereotypically sickly, pale cf child.

I do get a bit saddened, overwhelmed when yet another medication gets added to the mix. It's a bit of an adjustment at first, but soon it becomes routine.

Also, I don't ever want to look back with regret that we didn't do something we should've.

 

[Ratatosk]

DS' doctors are similarly aggressive. DS has been on tobi since he was 3 months old, he's now almost 7. Zithromax since age 2 1/2. He's had a couple lung and CT scans... I don't have fears in terms of being too aggressive because I guess I've seen the other side of it locally in which kids aren't getting treated proactively. When we'd go to the local cf clinic I'd hear that tell tale cough, see the stereotypically sickly, pale cf child.

I do get a bit saddened, overwhelmed when yet another medication gets added to the mix. It's a bit of an adjustment at first, but soon it becomes routine.

Also, I don't ever want to look back with regret that we didn't do something we should've.

 

[Ratatosk]

DS' doctors are similarly aggressive. DS has been on tobi since he was 3 months old, he's now almost 7. Zithromax since age 2 1/2. He's had a couple lung and CT scans... I don't have fears in terms of being too aggressive because I guess I've seen the other side of it locally in which kids aren't getting treated proactively. When we'd go to the local cf clinic I'd hear that tell tale cough, see the stereotypically sickly, pale cf child.
<br />
<br />I do get a bit saddened, overwhelmed when yet another medication gets added to the mix. It's a bit of an adjustment at first, but soon it becomes routine.
<br />
<br />Also, I don't ever want to look back with regret that we didn't do something we should've.

 

[ymikhale]

If I am not mistaken in Denmark they are not constantly on antibiotics. Once they culture PA, they have IVs every 3 months. I realise being aggressive is important, but I would be incomfortable if my dd was constantly on antibiotics if she is not culturing anything. As you said, what will they do if the child gets really sick and is resistant to everything

 

[ymikhale]

If I am not mistaken in Denmark they are not constantly on antibiotics. Once they culture PA, they have IVs every 3 months. I realise being aggressive is important, but I would be incomfortable if my dd was constantly on antibiotics if she is not culturing anything. As you said, what will they do if the child gets really sick and is resistant to everything

 

[ymikhale]

If I am not mistaken in Denmark they are not constantly on antibiotics. Once they culture PA, they have IVs every 3 months. I realise being aggressive is important, but I would be incomfortable if my dd was constantly on antibiotics if she is not culturing anything. As you said, what will they do if the child gets really sick and is resistant to everything

 

[ymikhale]

If I am not mistaken in Denmark they are not constantly on antibiotics. Once they culture PA, they have IVs every 3 months. I realise being aggressive is important, but I would be incomfortable if my dd was constantly on antibiotics if she is not culturing anything. As you said, what will they do if the child gets really sick and is resistant to everything

 

[ymikhale]

If I am not mistaken in Denmark they are not constantly on antibiotics. Once they culture PA, they have IVs every 3 months. I realise being aggressive is important, but I would be incomfortable if my dd was constantly on antibiotics if she is not culturing anything. As you said, what will they do if the child gets really sick and is resistant to everything

 

[hmw]

Our clinic is pretty proactive w/ various types of treatments. Abx are a tool but not the only one, if that makes sense.

We have a good sick plan and her clinic is VERY proactive about extra treatments as a 'first-line defense' ...increasing them at the first sign of congestion or subtle sign of illness (not even waiting for a cough). They want treatments, and to keep up the extra treatments until Emily has been back to baseline for several days.

They also look for inflammation/asthma, do allergy testing... ask a huge list of questions at every clinic visit (want to know about environmental exposure, irritants, any subtle change in her baseline, etc... they take a very thorough hx.) They do chest ct's every other year now; until last yr it was annual xrays. They start Pulmazyme on just about everyone by age 6 (younger if respiratory symptoms indicate it.) Many kids are also on HTS. They use Zithromax m/w/f here, but not as an abx- it's as an anti-inflammatory. Generally it's for kids once they've cultured PA, but occasionally otherwise. So they will actively work with you and customize treatment to fit each kid. I can't comment specifically on exact PA protocol since we haven't gotten there yet. I do know IV's are saved for use on an as-needed basis.

I strongly agree being proactive is important. All that said, as ymikhale says I'd be uncomfortable too with CONSTANT use of multiple abx all the time without symptoms. I'd expect the typical 28 days on/off of something like Tobi or Cayston once Emily cultures PA (to my knowledge, this is what they do here.) But I'd want to save more options for later, when they are needed for more severe bugs or if resistance becomes an issue.

 

[hmw]

Our clinic is pretty proactive w/ various types of treatments. Abx are a tool but not the only one, if that makes sense.

We have a good sick plan and her clinic is VERY proactive about extra treatments as a 'first-line defense' ...increasing them at the first sign of congestion or subtle sign of illness (not even waiting for a cough). They want treatments, and to keep up the extra treatments until Emily has been back to baseline for several days.

They also look for inflammation/asthma, do allergy testing... ask a huge list of questions at every clinic visit (want to know about environmental exposure, irritants, any subtle change in her baseline, etc... they take a very thorough hx.) They do chest ct's every other year now; until last yr it was annual xrays. They start Pulmazyme on just about everyone by age 6 (younger if respiratory symptoms indicate it.) Many kids are also on HTS. They use Zithromax m/w/f here, but not as an abx- it's as an anti-inflammatory. Generally it's for kids once they've cultured PA, but occasionally otherwise. So they will actively work with you and customize treatment to fit each kid. I can't comment specifically on exact PA protocol since we haven't gotten there yet. I do know IV's are saved for use on an as-needed basis.

I strongly agree being proactive is important. All that said, as ymikhale says I'd be uncomfortable too with CONSTANT use of multiple abx all the time without symptoms. I'd expect the typical 28 days on/off of something like Tobi or Cayston once Emily cultures PA (to my knowledge, this is what they do here.) But I'd want to save more options for later, when they are needed for more severe bugs or if resistance becomes an issue.

 

[hmw]

Our clinic is pretty proactive w/ various types of treatments. Abx are a tool but not the only one, if that makes sense.

We have a good sick plan and her clinic is VERY proactive about extra treatments as a 'first-line defense' ...increasing them at the first sign of congestion or subtle sign of illness (not even waiting for a cough). They want treatments, and to keep up the extra treatments until Emily has been back to baseline for several days.

They also look for inflammation/asthma, do allergy testing... ask a huge list of questions at every clinic visit (want to know about environmental exposure, irritants, any subtle change in her baseline, etc... they take a very thorough hx.) They do chest ct's every other year now; until last yr it was annual xrays. They start Pulmazyme on just about everyone by age 6 (younger if respiratory symptoms indicate it.) Many kids are also on HTS. They use Zithromax m/w/f here, but not as an abx- it's as an anti-inflammatory. Generally it's for kids once they've cultured PA, but occasionally otherwise. So they will actively work with you and customize treatment to fit each kid. I can't comment specifically on exact PA protocol since we haven't gotten there yet. I do know IV's are saved for use on an as-needed basis.

I strongly agree being proactive is important. All that said, as ymikhale says I'd be uncomfortable too with CONSTANT use of multiple abx all the time without symptoms. I'd expect the typical 28 days on/off of something like Tobi or Cayston once Emily cultures PA (to my knowledge, this is what they do here.) But I'd want to save more options for later, when they are needed for more severe bugs or if resistance becomes an issue.

 

[hmw]

Our clinic is pretty proactive w/ various types of treatments. Abx are a tool but not the only one, if that makes sense.

We have a good sick plan and her clinic is VERY proactive about extra treatments as a 'first-line defense' ...increasing them at the first sign of congestion or subtle sign of illness (not even waiting for a cough). They want treatments, and to keep up the extra treatments until Emily has been back to baseline for several days.

They also look for inflammation/asthma, do allergy testing... ask a huge list of questions at every clinic visit (want to know about environmental exposure, irritants, any subtle change in her baseline, etc... they take a very thorough hx.) They do chest ct's every other year now; until last yr it was annual xrays. They start Pulmazyme on just about everyone by age 6 (younger if respiratory symptoms indicate it.) Many kids are also on HTS. They use Zithromax m/w/f here, but not as an abx- it's as an anti-inflammatory. Generally it's for kids once they've cultured PA, but occasionally otherwise. So they will actively work with you and customize treatment to fit each kid. I can't comment specifically on exact PA protocol since we haven't gotten there yet. I do know IV's are saved for use on an as-needed basis.

I strongly agree being proactive is important. All that said, as ymikhale says I'd be uncomfortable too with CONSTANT use of multiple abx all the time without symptoms. I'd expect the typical 28 days on/off of something like Tobi or Cayston once Emily cultures PA (to my knowledge, this is what they do here.) But I'd want to save more options for later, when they are needed for more severe bugs or if resistance becomes an issue.

 

[hmw]

Our clinic is pretty proactive w/ various types of treatments. Abx are a tool but not the only one, if that makes sense.
<br />
<br />We have a good sick plan and her clinic is VERY proactive about extra treatments as a 'first-line defense' ...increasing them at the first sign of congestion or subtle sign of illness (not even waiting for a cough). They want treatments, and to keep up the extra treatments until Emily has been back to baseline for several days.
<br />
<br />They also look for inflammation/asthma, do allergy testing... ask a huge list of questions at every clinic visit (want to know about environmental exposure, irritants, any subtle change in her baseline, etc... they take a very thorough hx.) They do chest ct's every other year now; until last yr it was annual xrays. They start Pulmazyme on just about everyone by age 6 (younger if respiratory symptoms indicate it.) Many kids are also on HTS. They use Zithromax m/w/f here, but not as an abx- it's as an anti-inflammatory. Generally it's for kids once they've cultured PA, but occasionally otherwise. So they will actively work with you and customize treatment to fit each kid. I can't comment specifically on exact PA protocol since we haven't gotten there yet. I do know IV's are saved for use on an as-needed basis.
<br />
<br />I strongly agree being proactive is important. All that said, as ymikhale says I'd be uncomfortable too with CONSTANT use of multiple abx all the time without symptoms. I'd expect the typical 28 days on/off of something like Tobi or Cayston once Emily cultures PA (to my knowledge, this is what they do here.) But I'd want to save more options for later, when they are needed for more severe bugs or if resistance becomes an issue.