pseudomonas diagnosis

R

rosesixtyfive

New member
Hello, all,
Since Sam's PA diagnosis, we have started the Tobi, and will visit the clinic on Wednesday to discuss possible hospitalization. I'm just not sure what to expect now. I had just gotten adjusted to the idea that he had CF, and now I have to wrap my mind around PA. I need words of hope. Tell me about your children who have PA, but are doing great. Tell me about people who have had PA for a very long time, but are still going strong. It sure doesn't feel like the end, because my child looks and feels good. He is gaining weight and laughs all of the time. Tell me how to fight this for him aside from being 110% compliant.
Thank you,
rosesixtyfive, mother of Sam (ddf508, 4 months), and Robin (no CF, 4 years old)
 
R

rosesixtyfive

New member
Hello, all,
Since Sam's PA diagnosis, we have started the Tobi, and will visit the clinic on Wednesday to discuss possible hospitalization. I'm just not sure what to expect now. I had just gotten adjusted to the idea that he had CF, and now I have to wrap my mind around PA. I need words of hope. Tell me about your children who have PA, but are doing great. Tell me about people who have had PA for a very long time, but are still going strong. It sure doesn't feel like the end, because my child looks and feels good. He is gaining weight and laughs all of the time. Tell me how to fight this for him aside from being 110% compliant.
Thank you,
rosesixtyfive, mother of Sam (ddf508, 4 months), and Robin (no CF, 4 years old)
 
R

rosesixtyfive

New member
Hello, all,
Since Sam's PA diagnosis, we have started the Tobi, and will visit the clinic on Wednesday to discuss possible hospitalization. I'm just not sure what to expect now. I had just gotten adjusted to the idea that he had CF, and now I have to wrap my mind around PA. I need words of hope. Tell me about your children who have PA, but are doing great. Tell me about people who have had PA for a very long time, but are still going strong. It sure doesn't feel like the end, because my child looks and feels good. He is gaining weight and laughs all of the time. Tell me how to fight this for him aside from being 110% compliant.
Thank you,
rosesixtyfive, mother of Sam (ddf508, 4 months), and Robin (no CF, 4 years old)
 
R

rosesixtyfive

New member
Hello, all,
Since Sam's PA diagnosis, we have started the Tobi, and will visit the clinic on Wednesday to discuss possible hospitalization. I'm just not sure what to expect now. I had just gotten adjusted to the idea that he had CF, and now I have to wrap my mind around PA. I need words of hope. Tell me about your children who have PA, but are doing great. Tell me about people who have had PA for a very long time, but are still going strong. It sure doesn't feel like the end, because my child looks and feels good. He is gaining weight and laughs all of the time. Tell me how to fight this for him aside from being 110% compliant.
Thank you,
rosesixtyfive, mother of Sam (ddf508, 4 months), and Robin (no CF, 4 years old)
 
R

rosesixtyfive

New member
Hello, all,
<br />Since Sam's PA diagnosis, we have started the Tobi, and will visit the clinic on Wednesday to discuss possible hospitalization. I'm just not sure what to expect now. I had just gotten adjusted to the idea that he had CF, and now I have to wrap my mind around PA. I need words of hope. Tell me about your children who have PA, but are doing great. Tell me about people who have had PA for a very long time, but are still going strong. It sure doesn't feel like the end, because my child looks and feels good. He is gaining weight and laughs all of the time. Tell me how to fight this for him aside from being 110% compliant.
<br />Thank you,
<br />rosesixtyfive, mother of Sam (ddf508, 4 months), and Robin (no CF, 4 years old)
 
K

kfw1963

Guest
I've cultured PA(3 strains mucoid and non) for as many years as I can remember. My Pft's are still great(fev1 high 80's)and the PA does not seem to have had any negative impact on me. The only issue I have had is resistance to some of the inhaled abx. I no longer do inhaled tobi as I have resistance to it. So I switched to another med. I would not freak out over this as it is fairly common for CFers to culture PA.
 
K

kfw1963

Guest
I've cultured PA(3 strains mucoid and non) for as many years as I can remember. My Pft's are still great(fev1 high 80's)and the PA does not seem to have had any negative impact on me. The only issue I have had is resistance to some of the inhaled abx. I no longer do inhaled tobi as I have resistance to it. So I switched to another med. I would not freak out over this as it is fairly common for CFers to culture PA.
 
K

kfw1963

Guest
I've cultured PA(3 strains mucoid and non) for as many years as I can remember. My Pft's are still great(fev1 high 80's)and the PA does not seem to have had any negative impact on me. The only issue I have had is resistance to some of the inhaled abx. I no longer do inhaled tobi as I have resistance to it. So I switched to another med. I would not freak out over this as it is fairly common for CFers to culture PA.
 
K

kfw1963

Guest
I've cultured PA(3 strains mucoid and non) for as many years as I can remember. My Pft's are still great(fev1 high 80's)and the PA does not seem to have had any negative impact on me. The only issue I have had is resistance to some of the inhaled abx. I no longer do inhaled tobi as I have resistance to it. So I switched to another med. I would not freak out over this as it is fairly common for CFers to culture PA.
 
K

kfw1963

Guest
I've cultured PA(3 strains mucoid and non) for as many years as I can remember. My Pft's are still great(fev1 high 80's)and the PA does not seem to have had any negative impact on me. The only issue I have had is resistance to some of the inhaled abx. I no longer do inhaled tobi as I have resistance to it. So I switched to another med. I would not freak out over this as it is fairly common for CFers to culture PA.
 
N

NYCLawGirl

New member
just remember, MOST cfers culture PA. not all, sure, but it's much more common than not. i'm sure this is terrifying fr you as a mother, but it's not new to your cf doctor, and it's something clinics are very adept at handling in cf patients.

also, culturing PA doesn't necessarily mean your son will colonize it right away, or maybe even ever. aggressive treatment now could make all the difference. your son may well be placed on TOBI now or in the near future, however -- this is a really common addition to the routine after culturing PA.

I have cultured PA since i was a very young child. i know it might seem scary for you to hear that, but remember that when i was a little kid TOBI hadn't come into use yet (we mixed our own tobra nebs), DNase hadn't been developed, we didn't know about the benefits of HTS...and yet i stayed really quite healthy even with the PA. i had lung function in the high 80s well into college, even without the benefit of all of today's treatments. (i think DNase and TOBI came about when i was still relatively young - like pre-teen years, and i added HTS sometime in late high school/early college.) the three biggest factors in this were, without a doubt: parents who stressed health as a top priority for me, amazing and proactive medical care, and staying really active.

i would say the major change to expect is that your child will most likely be on antibiotics more frequently, though not by any means will this necessarily mean hospitalizations or IVs. doctors are often very aggressive in using abx to control the bugs once a child cultures PA, as they should be in my opinion.
 
N

NYCLawGirl

New member
just remember, MOST cfers culture PA. not all, sure, but it's much more common than not. i'm sure this is terrifying fr you as a mother, but it's not new to your cf doctor, and it's something clinics are very adept at handling in cf patients.

also, culturing PA doesn't necessarily mean your son will colonize it right away, or maybe even ever. aggressive treatment now could make all the difference. your son may well be placed on TOBI now or in the near future, however -- this is a really common addition to the routine after culturing PA.

I have cultured PA since i was a very young child. i know it might seem scary for you to hear that, but remember that when i was a little kid TOBI hadn't come into use yet (we mixed our own tobra nebs), DNase hadn't been developed, we didn't know about the benefits of HTS...and yet i stayed really quite healthy even with the PA. i had lung function in the high 80s well into college, even without the benefit of all of today's treatments. (i think DNase and TOBI came about when i was still relatively young - like pre-teen years, and i added HTS sometime in late high school/early college.) the three biggest factors in this were, without a doubt: parents who stressed health as a top priority for me, amazing and proactive medical care, and staying really active.

i would say the major change to expect is that your child will most likely be on antibiotics more frequently, though not by any means will this necessarily mean hospitalizations or IVs. doctors are often very aggressive in using abx to control the bugs once a child cultures PA, as they should be in my opinion.
 
N

NYCLawGirl

New member
just remember, MOST cfers culture PA. not all, sure, but it's much more common than not. i'm sure this is terrifying fr you as a mother, but it's not new to your cf doctor, and it's something clinics are very adept at handling in cf patients.

also, culturing PA doesn't necessarily mean your son will colonize it right away, or maybe even ever. aggressive treatment now could make all the difference. your son may well be placed on TOBI now or in the near future, however -- this is a really common addition to the routine after culturing PA.

I have cultured PA since i was a very young child. i know it might seem scary for you to hear that, but remember that when i was a little kid TOBI hadn't come into use yet (we mixed our own tobra nebs), DNase hadn't been developed, we didn't know about the benefits of HTS...and yet i stayed really quite healthy even with the PA. i had lung function in the high 80s well into college, even without the benefit of all of today's treatments. (i think DNase and TOBI came about when i was still relatively young - like pre-teen years, and i added HTS sometime in late high school/early college.) the three biggest factors in this were, without a doubt: parents who stressed health as a top priority for me, amazing and proactive medical care, and staying really active.

i would say the major change to expect is that your child will most likely be on antibiotics more frequently, though not by any means will this necessarily mean hospitalizations or IVs. doctors are often very aggressive in using abx to control the bugs once a child cultures PA, as they should be in my opinion.
 
N

NYCLawGirl

New member
just remember, MOST cfers culture PA. not all, sure, but it's much more common than not. i'm sure this is terrifying fr you as a mother, but it's not new to your cf doctor, and it's something clinics are very adept at handling in cf patients.

also, culturing PA doesn't necessarily mean your son will colonize it right away, or maybe even ever. aggressive treatment now could make all the difference. your son may well be placed on TOBI now or in the near future, however -- this is a really common addition to the routine after culturing PA.

I have cultured PA since i was a very young child. i know it might seem scary for you to hear that, but remember that when i was a little kid TOBI hadn't come into use yet (we mixed our own tobra nebs), DNase hadn't been developed, we didn't know about the benefits of HTS...and yet i stayed really quite healthy even with the PA. i had lung function in the high 80s well into college, even without the benefit of all of today's treatments. (i think DNase and TOBI came about when i was still relatively young - like pre-teen years, and i added HTS sometime in late high school/early college.) the three biggest factors in this were, without a doubt: parents who stressed health as a top priority for me, amazing and proactive medical care, and staying really active.

i would say the major change to expect is that your child will most likely be on antibiotics more frequently, though not by any means will this necessarily mean hospitalizations or IVs. doctors are often very aggressive in using abx to control the bugs once a child cultures PA, as they should be in my opinion.
 
N

NYCLawGirl

New member
just remember, MOST cfers culture PA. not all, sure, but it's much more common than not. i'm sure this is terrifying fr you as a mother, but it's not new to your cf doctor, and it's something clinics are very adept at handling in cf patients.
<br />
<br />also, culturing PA doesn't necessarily mean your son will colonize it right away, or maybe even ever. aggressive treatment now could make all the difference. your son may well be placed on TOBI now or in the near future, however -- this is a really common addition to the routine after culturing PA.
<br />
<br />I have cultured PA since i was a very young child. i know it might seem scary for you to hear that, but remember that when i was a little kid TOBI hadn't come into use yet (we mixed our own tobra nebs), DNase hadn't been developed, we didn't know about the benefits of HTS...and yet i stayed really quite healthy even with the PA. i had lung function in the high 80s well into college, even without the benefit of all of today's treatments. (i think DNase and TOBI came about when i was still relatively young - like pre-teen years, and i added HTS sometime in late high school/early college.) the three biggest factors in this were, without a doubt: parents who stressed health as a top priority for me, amazing and proactive medical care, and staying really active.
<br />
<br />i would say the major change to expect is that your child will most likely be on antibiotics more frequently, though not by any means will this necessarily mean hospitalizations or IVs. doctors are often very aggressive in using abx to control the bugs once a child cultures PA, as they should be in my opinion.
 
R

rosesixtyfive

New member
Thank you Piper and Kevin. I feel like I can breathe again. I know each case of CF is different. You never know how it will effect each individual. I just want to keep my son as healthy as possible until some of these new drugs can hopefully come out. Hope gives us the energy to do everything that needs to be done, and then some. Harriet told me how to post a picture, so I am posting a picture for the first time. You can see this child is full of life and energy and all things good and new. If anyone else has more words of hope to share or knowledge about life with pseudomonas, I'd love to hear your thoughts.
rosesixtyfive, mother of Sam (ddf508, 4 months) and Robin (no CF, 4 years old)
<img src="http://i791.photobucket.com/albums/yy191/nengle_2010/Christmas2009078.jpg">
 
R

rosesixtyfive

New member
Thank you Piper and Kevin. I feel like I can breathe again. I know each case of CF is different. You never know how it will effect each individual. I just want to keep my son as healthy as possible until some of these new drugs can hopefully come out. Hope gives us the energy to do everything that needs to be done, and then some. Harriet told me how to post a picture, so I am posting a picture for the first time. You can see this child is full of life and energy and all things good and new. If anyone else has more words of hope to share or knowledge about life with pseudomonas, I'd love to hear your thoughts.
rosesixtyfive, mother of Sam (ddf508, 4 months) and Robin (no CF, 4 years old)
<img src="http://i791.photobucket.com/albums/yy191/nengle_2010/Christmas2009078.jpg">
 
R

rosesixtyfive

New member
Thank you Piper and Kevin. I feel like I can breathe again. I know each case of CF is different. You never know how it will effect each individual. I just want to keep my son as healthy as possible until some of these new drugs can hopefully come out. Hope gives us the energy to do everything that needs to be done, and then some. Harriet told me how to post a picture, so I am posting a picture for the first time. You can see this child is full of life and energy and all things good and new. If anyone else has more words of hope to share or knowledge about life with pseudomonas, I'd love to hear your thoughts.
rosesixtyfive, mother of Sam (ddf508, 4 months) and Robin (no CF, 4 years old)
<img src="http://i791.photobucket.com/albums/yy191/nengle_2010/Christmas2009078.jpg">
 
R

rosesixtyfive

New member
Thank you Piper and Kevin. I feel like I can breathe again. I know each case of CF is different. You never know how it will effect each individual. I just want to keep my son as healthy as possible until some of these new drugs can hopefully come out. Hope gives us the energy to do everything that needs to be done, and then some. Harriet told me how to post a picture, so I am posting a picture for the first time. You can see this child is full of life and energy and all things good and new. If anyone else has more words of hope to share or knowledge about life with pseudomonas, I'd love to hear your thoughts.
rosesixtyfive, mother of Sam (ddf508, 4 months) and Robin (no CF, 4 years old)
<img src="http://i791.photobucket.com/albums/yy191/nengle_2010/Christmas2009078.jpg">
 
R

rosesixtyfive

New member
Thank you Piper and Kevin. I feel like I can breathe again. I know each case of CF is different. You never know how it will effect each individual. I just want to keep my son as healthy as possible until some of these new drugs can hopefully come out. Hope gives us the energy to do everything that needs to be done, and then some. Harriet told me how to post a picture, so I am posting a picture for the first time. You can see this child is full of life and energy and all things good and new. If anyone else has more words of hope to share or knowledge about life with pseudomonas, I'd love to hear your thoughts.
<br />rosesixtyfive, mother of Sam (ddf508, 4 months) and Robin (no CF, 4 years old)
<br /><img src="http://i791.photobucket.com/albums/yy191/nengle_2010/Christmas2009078.jpg">
 
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