Tune up

[TestifyToLove]

We are very cautious about hospitalizations for M. In the past, it was nosicomal infections that nearly killed him. At one point, someone accessed his port without proper techniques and gave him a systemic infection of Staph, one that put him in DIC, started multi organ failure and spent over a week in the PICU fighting for his life.

M's CF doctor prefers to do IV antibiotics in-patient. We prefer to keep him home. The compromise is that we'll take him in for PICC insertion and to get things started, but then he's coming home. He does culture PA and as of 3 weeks ago its medication resistent to all oral antibiotic options.

If he continues to culture this strain, in the future we will likely have another port placed (the last was removed when it was infected) and do as much of his IV antibiotics at home as possible. We can increase his respiratory measures at home. We can manage IV antibiotics. We can transport him for tests if he's stable. All of that is better for him emotionally, developmentally and to reduce the risk of increased exposure to nasty bacteria that do not lurk in my house.

We just see first hand what happened when not so great doctors were given carte blanche with a CF child and had no accountability for their choices concerning him. Now that he's ours, its our responsiblity to assure that he is protect to the best of our abilities and keeping him home as much as possible is one of those responsibilities for us.

That doesn't mean we're unreasonable in this. M's actually done 2 hospializations this year. But, this last one was about getting him stabilized for surgery. We thought that was an easy task, and it turned out it was a very difficult task instead. But, once the goal was met, he was sprung home and we did the rest of his antibiotics at home, where he belonged.

But, we do have one very distinctive difference in our approach. There is a very strong probability that M is not a canidate for a new liver and is already in advanced liver disease. Longevity is very likely impossible to give him. Consequently, for us quality of life is paramount. Every decision we make for M involves weighing the cost to his quality of life. To not breath is horrible quality. But, to spend months in the hospial for nothing but IV antibiotics is also horrible quality for him. We look for the balance, because its truly all we can give him.

 

[TestifyToLove]

We are very cautious about hospitalizations for M. In the past, it was nosicomal infections that nearly killed him. At one point, someone accessed his port without proper techniques and gave him a systemic infection of Staph, one that put him in DIC, started multi organ failure and spent over a week in the PICU fighting for his life.

M's CF doctor prefers to do IV antibiotics in-patient. We prefer to keep him home. The compromise is that we'll take him in for PICC insertion and to get things started, but then he's coming home. He does culture PA and as of 3 weeks ago its medication resistent to all oral antibiotic options.

If he continues to culture this strain, in the future we will likely have another port placed (the last was removed when it was infected) and do as much of his IV antibiotics at home as possible. We can increase his respiratory measures at home. We can manage IV antibiotics. We can transport him for tests if he's stable. All of that is better for him emotionally, developmentally and to reduce the risk of increased exposure to nasty bacteria that do not lurk in my house.

We just see first hand what happened when not so great doctors were given carte blanche with a CF child and had no accountability for their choices concerning him. Now that he's ours, its our responsiblity to assure that he is protect to the best of our abilities and keeping him home as much as possible is one of those responsibilities for us.

That doesn't mean we're unreasonable in this. M's actually done 2 hospializations this year. But, this last one was about getting him stabilized for surgery. We thought that was an easy task, and it turned out it was a very difficult task instead. But, once the goal was met, he was sprung home and we did the rest of his antibiotics at home, where he belonged.

But, we do have one very distinctive difference in our approach. There is a very strong probability that M is not a canidate for a new liver and is already in advanced liver disease. Longevity is very likely impossible to give him. Consequently, for us quality of life is paramount. Every decision we make for M involves weighing the cost to his quality of life. To not breath is horrible quality. But, to spend months in the hospial for nothing but IV antibiotics is also horrible quality for him. We look for the balance, because its truly all we can give him.

 

[TestifyToLove]

We are very cautious about hospitalizations for M. In the past, it was nosicomal infections that nearly killed him. At one point, someone accessed his port without proper techniques and gave him a systemic infection of Staph, one that put him in DIC, started multi organ failure and spent over a week in the PICU fighting for his life.

M's CF doctor prefers to do IV antibiotics in-patient. We prefer to keep him home. The compromise is that we'll take him in for PICC insertion and to get things started, but then he's coming home. He does culture PA and as of 3 weeks ago its medication resistent to all oral antibiotic options.

If he continues to culture this strain, in the future we will likely have another port placed (the last was removed when it was infected) and do as much of his IV antibiotics at home as possible. We can increase his respiratory measures at home. We can manage IV antibiotics. We can transport him for tests if he's stable. All of that is better for him emotionally, developmentally and to reduce the risk of increased exposure to nasty bacteria that do not lurk in my house.

We just see first hand what happened when not so great doctors were given carte blanche with a CF child and had no accountability for their choices concerning him. Now that he's ours, its our responsiblity to assure that he is protect to the best of our abilities and keeping him home as much as possible is one of those responsibilities for us.

That doesn't mean we're unreasonable in this. M's actually done 2 hospializations this year. But, this last one was about getting him stabilized for surgery. We thought that was an easy task, and it turned out it was a very difficult task instead. But, once the goal was met, he was sprung home and we did the rest of his antibiotics at home, where he belonged.

But, we do have one very distinctive difference in our approach. There is a very strong probability that M is not a canidate for a new liver and is already in advanced liver disease. Longevity is very likely impossible to give him. Consequently, for us quality of life is paramount. Every decision we make for M involves weighing the cost to his quality of life. To not breath is horrible quality. But, to spend months in the hospial for nothing but IV antibiotics is also horrible quality for him. We look for the balance, because its truly all we can give him.

 

[TestifyToLove]

We are very cautious about hospitalizations for M. In the past, it was nosicomal infections that nearly killed him. At one point, someone accessed his port without proper techniques and gave him a systemic infection of Staph, one that put him in DIC, started multi organ failure and spent over a week in the PICU fighting for his life.

M's CF doctor prefers to do IV antibiotics in-patient. We prefer to keep him home. The compromise is that we'll take him in for PICC insertion and to get things started, but then he's coming home. He does culture PA and as of 3 weeks ago its medication resistent to all oral antibiotic options.

If he continues to culture this strain, in the future we will likely have another port placed (the last was removed when it was infected) and do as much of his IV antibiotics at home as possible. We can increase his respiratory measures at home. We can manage IV antibiotics. We can transport him for tests if he's stable. All of that is better for him emotionally, developmentally and to reduce the risk of increased exposure to nasty bacteria that do not lurk in my house.

We just see first hand what happened when not so great doctors were given carte blanche with a CF child and had no accountability for their choices concerning him. Now that he's ours, its our responsiblity to assure that he is protect to the best of our abilities and keeping him home as much as possible is one of those responsibilities for us.

That doesn't mean we're unreasonable in this. M's actually done 2 hospializations this year. But, this last one was about getting him stabilized for surgery. We thought that was an easy task, and it turned out it was a very difficult task instead. But, once the goal was met, he was sprung home and we did the rest of his antibiotics at home, where he belonged.

But, we do have one very distinctive difference in our approach. There is a very strong probability that M is not a canidate for a new liver and is already in advanced liver disease. Longevity is very likely impossible to give him. Consequently, for us quality of life is paramount. Every decision we make for M involves weighing the cost to his quality of life. To not breath is horrible quality. But, to spend months in the hospial for nothing but IV antibiotics is also horrible quality for him. We look for the balance, because its truly all we can give him.

 

[TestifyToLove]

We are very cautious about hospitalizations for M. In the past, it was nosicomal infections that nearly killed him. At one point, someone accessed his port without proper techniques and gave him a systemic infection of Staph, one that put him in DIC, started multi organ failure and spent over a week in the PICU fighting for his life.
<br />
<br />M's CF doctor prefers to do IV antibiotics in-patient. We prefer to keep him home. The compromise is that we'll take him in for PICC insertion and to get things started, but then he's coming home. He does culture PA and as of 3 weeks ago its medication resistent to all oral antibiotic options.
<br />
<br />If he continues to culture this strain, in the future we will likely have another port placed (the last was removed when it was infected) and do as much of his IV antibiotics at home as possible. We can increase his respiratory measures at home. We can manage IV antibiotics. We can transport him for tests if he's stable. All of that is better for him emotionally, developmentally and to reduce the risk of increased exposure to nasty bacteria that do not lurk in my house.
<br />
<br />We just see first hand what happened when not so great doctors were given carte blanche with a CF child and had no accountability for their choices concerning him. Now that he's ours, its our responsiblity to assure that he is protect to the best of our abilities and keeping him home as much as possible is one of those responsibilities for us.
<br />
<br />That doesn't mean we're unreasonable in this. M's actually done 2 hospializations this year. But, this last one was about getting him stabilized for surgery. We thought that was an easy task, and it turned out it was a very difficult task instead. But, once the goal was met, he was sprung home and we did the rest of his antibiotics at home, where he belonged.
<br />
<br />But, we do have one very distinctive difference in our approach. There is a very strong probability that M is not a canidate for a new liver and is already in advanced liver disease. Longevity is very likely impossible to give him. Consequently, for us quality of life is paramount. Every decision we make for M involves weighing the cost to his quality of life. To not breath is horrible quality. But, to spend months in the hospial for nothing but IV antibiotics is also horrible quality for him. We look for the balance, because its truly all we can give him.

 

[3gr8kids]

so here is the update! we went to Syracuse Friday..... and they think Kaley has an auto immune disease...she seems to be sick quite a bit lately but they say it is not cf. Dr Soultan says that her sweat isnt high enough for her to really be affected by cf...hmmm i think the more i go to appts the more lost i become...her sweat test i believe was 16 but she was diag by genetics then when they did her bronch it showed signs of stuff in her lungs....so we will see what the blood work reveals....again hmmm...and i do agree w/ the non tune up unless culturing something but then i read mneville (the netherlands) and i want to believe that maybe it would be best for someone like my son who always has crap in his lungs.......and if he gets a cold always requires abx

 

[3gr8kids]

so here is the update! we went to Syracuse Friday..... and they think Kaley has an auto immune disease...she seems to be sick quite a bit lately but they say it is not cf. Dr Soultan says that her sweat isnt high enough for her to really be affected by cf...hmmm i think the more i go to appts the more lost i become...her sweat test i believe was 16 but she was diag by genetics then when they did her bronch it showed signs of stuff in her lungs....so we will see what the blood work reveals....again hmmm...and i do agree w/ the non tune up unless culturing something but then i read mneville (the netherlands) and i want to believe that maybe it would be best for someone like my son who always has crap in his lungs.......and if he gets a cold always requires abx

 

[3gr8kids]

so here is the update! we went to Syracuse Friday..... and they think Kaley has an auto immune disease...she seems to be sick quite a bit lately but they say it is not cf. Dr Soultan says that her sweat isnt high enough for her to really be affected by cf...hmmm i think the more i go to appts the more lost i become...her sweat test i believe was 16 but she was diag by genetics then when they did her bronch it showed signs of stuff in her lungs....so we will see what the blood work reveals....again hmmm...and i do agree w/ the non tune up unless culturing something but then i read mneville (the netherlands) and i want to believe that maybe it would be best for someone like my son who always has crap in his lungs.......and if he gets a cold always requires abx

 

[3gr8kids]

so here is the update! we went to Syracuse Friday..... and they think Kaley has an auto immune disease...she seems to be sick quite a bit lately but they say it is not cf. Dr Soultan says that her sweat isnt high enough for her to really be affected by cf...hmmm i think the more i go to appts the more lost i become...her sweat test i believe was 16 but she was diag by genetics then when they did her bronch it showed signs of stuff in her lungs....so we will see what the blood work reveals....again hmmm...and i do agree w/ the non tune up unless culturing something but then i read mneville (the netherlands) and i want to believe that maybe it would be best for someone like my son who always has crap in his lungs.......and if he gets a cold always requires abx

 

[3gr8kids]

so here is the update! we went to Syracuse Friday..... and they think Kaley has an auto immune disease...she seems to be sick quite a bit lately but they say it is not cf. Dr Soultan says that her sweat isnt high enough for her to really be affected by cf...hmmm i think the more i go to appts the more lost i become...her sweat test i believe was 16 but she was diag by genetics then when they did her bronch it showed signs of stuff in her lungs....so we will see what the blood work reveals....again hmmm...and i do agree w/ the non tune up unless culturing something but then i read mneville (the netherlands) and i want to believe that maybe it would be best for someone like my son who always has crap in his lungs.......and if he gets a cold always requires abx

 

[grassisgreener]

The method is discussed in the 2008 conference videos on cff.org. It is interesting but I still don't like the idea of the hospital, especially when they have never been hospitalized.

 

[grassisgreener]

The method is discussed in the 2008 conference videos on cff.org. It is interesting but I still don't like the idea of the hospital, especially when they have never been hospitalized.

 

[grassisgreener]

The method is discussed in the 2008 conference videos on cff.org. It is interesting but I still don't like the idea of the hospital, especially when they have never been hospitalized.

 

[grassisgreener]

The method is discussed in the 2008 conference videos on cff.org. It is interesting but I still don't like the idea of the hospital, especially when they have never been hospitalized.

 

[grassisgreener]

The method is discussed in the 2008 conference videos on cff.org. It is interesting but I still don't like the idea of the hospital, especially when they have never been hospitalized.

 

[Nightwriter]

A quick search of the literature on-line shows that elective IV antibiotic therapy (IV's every 3 months) is not what it is cracked up to be. There are so many other factors. Cystic Fibrosis decreasing in the Netherlands may be due to increased genetic counseling and an influx of people with non-European descent who don't ususally get CF (according to one study I found).

Only some centers use the method of elective IV therapy. Many hospitals not only in the Netherlands, but in other countries as well have stopped this kind of treatment due to cross infection of patients, costing the hospital time, money, and resources. And it is reported that when they moved treatments to at home IV's, the level of anxiety of home care made also made this treatment less than ideal.

The other interesting factor is that with home treatment, centers gave patients strict educational counseling concerning cleaning up the home environments. This is something sorely lacking here. In other words, trying to reduce sources of inflammation that is the root of many exacerbations.

It is also hard to compare cultures since other factors include, environment, availablity and quality of medical resources, severity of mutations that can vary from population to population, compliance, differences in diet, and air pollution both in and out of the home.

I was not able to find any controlled studies of elective IV therapy as opposed to treatment as it's warranted.

I think it would be a lot easier to treat the asthma component of CF, and reduce the need for antibiotics at all. And I could only find an article written in the UK that said this method has never been proven in a controlled study. But this article may not be the most recent on this subject.

There are definetely proponents of this method, but there are other factors at work here also.

 

[Nightwriter]

A quick search of the literature on-line shows that elective IV antibiotic therapy (IV's every 3 months) is not what it is cracked up to be. There are so many other factors. Cystic Fibrosis decreasing in the Netherlands may be due to increased genetic counseling and an influx of people with non-European descent who don't ususally get CF (according to one study I found).

Only some centers use the method of elective IV therapy. Many hospitals not only in the Netherlands, but in other countries as well have stopped this kind of treatment due to cross infection of patients, costing the hospital time, money, and resources. And it is reported that when they moved treatments to at home IV's, the level of anxiety of home care made also made this treatment less than ideal.

The other interesting factor is that with home treatment, centers gave patients strict educational counseling concerning cleaning up the home environments. This is something sorely lacking here. In other words, trying to reduce sources of inflammation that is the root of many exacerbations.

It is also hard to compare cultures since other factors include, environment, availablity and quality of medical resources, severity of mutations that can vary from population to population, compliance, differences in diet, and air pollution both in and out of the home.

I was not able to find any controlled studies of elective IV therapy as opposed to treatment as it's warranted.

I think it would be a lot easier to treat the asthma component of CF, and reduce the need for antibiotics at all. And I could only find an article written in the UK that said this method has never been proven in a controlled study. But this article may not be the most recent on this subject.

There are definetely proponents of this method, but there are other factors at work here also.

 

[Nightwriter]

A quick search of the literature on-line shows that elective IV antibiotic therapy (IV's every 3 months) is not what it is cracked up to be. There are so many other factors. Cystic Fibrosis decreasing in the Netherlands may be due to increased genetic counseling and an influx of people with non-European descent who don't ususally get CF (according to one study I found).

Only some centers use the method of elective IV therapy. Many hospitals not only in the Netherlands, but in other countries as well have stopped this kind of treatment due to cross infection of patients, costing the hospital time, money, and resources. And it is reported that when they moved treatments to at home IV's, the level of anxiety of home care made also made this treatment less than ideal.

The other interesting factor is that with home treatment, centers gave patients strict educational counseling concerning cleaning up the home environments. This is something sorely lacking here. In other words, trying to reduce sources of inflammation that is the root of many exacerbations.

It is also hard to compare cultures since other factors include, environment, availablity and quality of medical resources, severity of mutations that can vary from population to population, compliance, differences in diet, and air pollution both in and out of the home.

I was not able to find any controlled studies of elective IV therapy as opposed to treatment as it's warranted.

I think it would be a lot easier to treat the asthma component of CF, and reduce the need for antibiotics at all. And I could only find an article written in the UK that said this method has never been proven in a controlled study. But this article may not be the most recent on this subject.

There are definetely proponents of this method, but there are other factors at work here also.

 

[Nightwriter]

A quick search of the literature on-line shows that elective IV antibiotic therapy (IV's every 3 months) is not what it is cracked up to be. There are so many other factors. Cystic Fibrosis decreasing in the Netherlands may be due to increased genetic counseling and an influx of people with non-European descent who don't ususally get CF (according to one study I found).

Only some centers use the method of elective IV therapy. Many hospitals not only in the Netherlands, but in other countries as well have stopped this kind of treatment due to cross infection of patients, costing the hospital time, money, and resources. And it is reported that when they moved treatments to at home IV's, the level of anxiety of home care made also made this treatment less than ideal.

The other interesting factor is that with home treatment, centers gave patients strict educational counseling concerning cleaning up the home environments. This is something sorely lacking here. In other words, trying to reduce sources of inflammation that is the root of many exacerbations.

It is also hard to compare cultures since other factors include, environment, availablity and quality of medical resources, severity of mutations that can vary from population to population, compliance, differences in diet, and air pollution both in and out of the home.

I was not able to find any controlled studies of elective IV therapy as opposed to treatment as it's warranted.

I think it would be a lot easier to treat the asthma component of CF, and reduce the need for antibiotics at all. And I could only find an article written in the UK that said this method has never been proven in a controlled study. But this article may not be the most recent on this subject.

There are definetely proponents of this method, but there are other factors at work here also.

 

[Nightwriter]

A quick search of the literature on-line shows that elective IV antibiotic therapy (IV's every 3 months) is not what it is cracked up to be. There are so many other factors. Cystic Fibrosis decreasing in the Netherlands may be due to increased genetic counseling and an influx of people with non-European descent who don't ususally get CF (according to one study I found).
<br />
<br />Only some centers use the method of elective IV therapy. Many hospitals not only in the Netherlands, but in other countries as well have stopped this kind of treatment due to cross infection of patients, costing the hospital time, money, and resources. And it is reported that when they moved treatments to at home IV's, the level of anxiety of home care made also made this treatment less than ideal.
<br />
<br />The other interesting factor is that with home treatment, centers gave patients strict educational counseling concerning cleaning up the home environments. This is something sorely lacking here. In other words, trying to reduce sources of inflammation that is the root of many exacerbations.
<br />
<br />It is also hard to compare cultures since other factors include, environment, availablity and quality of medical resources, severity of mutations that can vary from population to population, compliance, differences in diet, and air pollution both in and out of the home.
<br />
<br />I was not able to find any controlled studies of elective IV therapy as opposed to treatment as it's warranted.
<br />
<br />I think it would be a lot easier to treat the asthma component of CF, and reduce the need for antibiotics at all. And I could only find an article written in the UK that said this method has never been proven in a controlled study. But this article may not be the most recent on this subject.
<br />
<br />There are definetely proponents of this method, but there are other factors at work here also.