At what age did your child

[NanaOf8Girls]

Has any of your children been on ABX for pseudo on and off for days at a time? At what age did they start this? Has anyones child colonized this? And how do they know if your child has colonized it? Does your doctor treat this aggressively? Sorry for all the questions but i don't think we are getting all the answers from the clinic drs.

 

[NanaOf8Girls]

Has any of your children been on ABX for pseudo on and off for days at a time? At what age did they start this? Has anyones child colonized this? And how do they know if your child has colonized it? Does your doctor treat this aggressively? Sorry for all the questions but i don't think we are getting all the answers from the clinic drs.

 

[NanaOf8Girls]

Has any of your children been on ABX for pseudo on and off for days at a time? At what age did they start this? Has anyones child colonized this? And how do they know if your child has colonized it? Does your doctor treat this aggressively? Sorry for all the questions but i don't think we are getting all the answers from the clinic drs.

 

[NanaOf8Girls]

Has any of your children been on ABX for pseudo on and off for days at a time? At what age did they start this? Has anyones child colonized this? And how do they know if your child has colonized it? Does your doctor treat this aggressively? Sorry for all the questions but i don't think we are getting all the answers from the clinic drs.

 

[NanaOf8Girls]

Has any of your children been on ABX for pseudo on and off for days at a time? At what age did they start this? Has anyones child colonized this? And how do they know if your child has colonized it? Does your doctor treat this aggressively? Sorry for all the questions but i don't think we are getting all the answers from the clinic drs.

 

[JazzysMom]

The nebulized med called Tobi (nebulized form of iv form tobramyacin) is done one month off/one month on as a rule. Sometimes they used nebbed colistin on the months that Tobi isnt being used.

I am not aware of any orals being used like that tho.

I think most CFers who culture pseudomonas start the tobi, but I am not 100% sure if age factors into it.

Colonized means that the "levels" in the sputum are never gone completely. When PA (pseudomonas) is caught early enough you can often erradicate it with aggressive treatment. It does by no means have to stay away tho. I believe that at some point anyone who has cultured PA will eventually become colonized with it.

This means that all sputum cultures will show certain amounts of it. The treatments vary depending on the patient, the symptoms, the levels of the culture & the doctors involved.

I believe I was colonized with PA long before my diagnosis at 7 years old so I never had a chance to erradicate it.

I know you are still freaked & upset about the delay in treating Graysons pseudomonas. I do believe they should be kicking butt with treatment tho. The earlier they erradicate or control it, the less scar tissue/lung damage left behind.

HUGS

 

[JazzysMom]

The nebulized med called Tobi (nebulized form of iv form tobramyacin) is done one month off/one month on as a rule. Sometimes they used nebbed colistin on the months that Tobi isnt being used.

I am not aware of any orals being used like that tho.

I think most CFers who culture pseudomonas start the tobi, but I am not 100% sure if age factors into it.

Colonized means that the "levels" in the sputum are never gone completely. When PA (pseudomonas) is caught early enough you can often erradicate it with aggressive treatment. It does by no means have to stay away tho. I believe that at some point anyone who has cultured PA will eventually become colonized with it.

This means that all sputum cultures will show certain amounts of it. The treatments vary depending on the patient, the symptoms, the levels of the culture & the doctors involved.

I believe I was colonized with PA long before my diagnosis at 7 years old so I never had a chance to erradicate it.

I know you are still freaked & upset about the delay in treating Graysons pseudomonas. I do believe they should be kicking butt with treatment tho. The earlier they erradicate or control it, the less scar tissue/lung damage left behind.

HUGS

 

[JazzysMom]

The nebulized med called Tobi (nebulized form of iv form tobramyacin) is done one month off/one month on as a rule. Sometimes they used nebbed colistin on the months that Tobi isnt being used.

I am not aware of any orals being used like that tho.

I think most CFers who culture pseudomonas start the tobi, but I am not 100% sure if age factors into it.

Colonized means that the "levels" in the sputum are never gone completely. When PA (pseudomonas) is caught early enough you can often erradicate it with aggressive treatment. It does by no means have to stay away tho. I believe that at some point anyone who has cultured PA will eventually become colonized with it.

This means that all sputum cultures will show certain amounts of it. The treatments vary depending on the patient, the symptoms, the levels of the culture & the doctors involved.

I believe I was colonized with PA long before my diagnosis at 7 years old so I never had a chance to erradicate it.

I know you are still freaked & upset about the delay in treating Graysons pseudomonas. I do believe they should be kicking butt with treatment tho. The earlier they erradicate or control it, the less scar tissue/lung damage left behind.

HUGS

 

[JazzysMom]

The nebulized med called Tobi (nebulized form of iv form tobramyacin) is done one month off/one month on as a rule. Sometimes they used nebbed colistin on the months that Tobi isnt being used.

I am not aware of any orals being used like that tho.

I think most CFers who culture pseudomonas start the tobi, but I am not 100% sure if age factors into it.

Colonized means that the "levels" in the sputum are never gone completely. When PA (pseudomonas) is caught early enough you can often erradicate it with aggressive treatment. It does by no means have to stay away tho. I believe that at some point anyone who has cultured PA will eventually become colonized with it.

This means that all sputum cultures will show certain amounts of it. The treatments vary depending on the patient, the symptoms, the levels of the culture & the doctors involved.

I believe I was colonized with PA long before my diagnosis at 7 years old so I never had a chance to erradicate it.

I know you are still freaked & upset about the delay in treating Graysons pseudomonas. I do believe they should be kicking butt with treatment tho. The earlier they erradicate or control it, the less scar tissue/lung damage left behind.

HUGS

 

[JazzysMom]

The nebulized med called Tobi (nebulized form of iv form tobramyacin) is done one month off/one month on as a rule. Sometimes they used nebbed colistin on the months that Tobi isnt being used.
<br />
<br />I am not aware of any orals being used like that tho.
<br />
<br />I think most CFers who culture pseudomonas start the tobi, but I am not 100% sure if age factors into it.
<br />
<br />Colonized means that the "levels" in the sputum are never gone completely. When PA (pseudomonas) is caught early enough you can often erradicate it with aggressive treatment. It does by no means have to stay away tho. I believe that at some point anyone who has cultured PA will eventually become colonized with it.
<br />
<br />This means that all sputum cultures will show certain amounts of it. The treatments vary depending on the patient, the symptoms, the levels of the culture & the doctors involved.
<br />
<br />I believe I was colonized with PA long before my diagnosis at 7 years old so I never had a chance to erradicate it.
<br />
<br />I know you are still freaked & upset about the delay in treating Graysons pseudomonas. I do believe they should be kicking butt with treatment tho. The earlier they erradicate or control it, the less scar tissue/lung damage left behind.
<br />
<br />HUGS

 

[NYCLawGirl]

In response to Mel's post, orals can be used this way as well. I culture PA and have been doing the TOBI/Colistin combo for years. My doctor put me on one month of levaquin alternated with one month of cipro in college. This was in addition to my constant zithro and the inhaled antibiotics. I think it helped b/c while I was in college doing that regimine I was only needing IVs 1-2 a year. Now it's much higher, but I have lost some abx sensitivity so we don't do the orals as much.

 

[NYCLawGirl]

In response to Mel's post, orals can be used this way as well. I culture PA and have been doing the TOBI/Colistin combo for years. My doctor put me on one month of levaquin alternated with one month of cipro in college. This was in addition to my constant zithro and the inhaled antibiotics. I think it helped b/c while I was in college doing that regimine I was only needing IVs 1-2 a year. Now it's much higher, but I have lost some abx sensitivity so we don't do the orals as much.

 

[NYCLawGirl]

In response to Mel's post, orals can be used this way as well. I culture PA and have been doing the TOBI/Colistin combo for years. My doctor put me on one month of levaquin alternated with one month of cipro in college. This was in addition to my constant zithro and the inhaled antibiotics. I think it helped b/c while I was in college doing that regimine I was only needing IVs 1-2 a year. Now it's much higher, but I have lost some abx sensitivity so we don't do the orals as much.

 

[NYCLawGirl]

In response to Mel's post, orals can be used this way as well. I culture PA and have been doing the TOBI/Colistin combo for years. My doctor put me on one month of levaquin alternated with one month of cipro in college. This was in addition to my constant zithro and the inhaled antibiotics. I think it helped b/c while I was in college doing that regimine I was only needing IVs 1-2 a year. Now it's much higher, but I have lost some abx sensitivity so we don't do the orals as much.

 

[NYCLawGirl]

In response to Mel's post, orals can be used this way as well. I culture PA and have been doing the TOBI/Colistin combo for years. My doctor put me on one month of levaquin alternated with one month of cipro in college. This was in addition to my constant zithro and the inhaled antibiotics. I think it helped b/c while I was in college doing that regimine I was only needing IVs 1-2 a year. Now it's much higher, but I have lost some abx sensitivity so we don't do the orals as much.

 

[Ratatosk]

DS was put on tobi, nebulized twice a day for 28 days, then off when he was 3 months old and cultured nonmucoid pseudomonas. We were told that if he had a clear culture after 6 months, he could go off it. He really didn't have any symptoms -- sometimes a boogery nose, but didn't have a cough the times he cultured it again.

At first it seemed VERY overwhelming -- the copay, the extra time to nebulize it -- of course we didn't know our compressor was faulty and the treatments should've taken only 25 minutes instead of 45-50. But we figured we'd do whatever we could to keep his lungs healthy. DH enjoys and extra half hour of snuggle time in the mornings and DS, likes that he can play an extra video game or two before supper while doing his nebs.

And I STILL get a little overwhelmed when a new drug is added to the mix. Zithromax once a day when DS turned 2 1/2 and another oral abx when he cultured yet another bug a year or so ago.

 

[Ratatosk]

DS was put on tobi, nebulized twice a day for 28 days, then off when he was 3 months old and cultured nonmucoid pseudomonas. We were told that if he had a clear culture after 6 months, he could go off it. He really didn't have any symptoms -- sometimes a boogery nose, but didn't have a cough the times he cultured it again.

At first it seemed VERY overwhelming -- the copay, the extra time to nebulize it -- of course we didn't know our compressor was faulty and the treatments should've taken only 25 minutes instead of 45-50. But we figured we'd do whatever we could to keep his lungs healthy. DH enjoys and extra half hour of snuggle time in the mornings and DS, likes that he can play an extra video game or two before supper while doing his nebs.

And I STILL get a little overwhelmed when a new drug is added to the mix. Zithromax once a day when DS turned 2 1/2 and another oral abx when he cultured yet another bug a year or so ago.

 

[Ratatosk]

DS was put on tobi, nebulized twice a day for 28 days, then off when he was 3 months old and cultured nonmucoid pseudomonas. We were told that if he had a clear culture after 6 months, he could go off it. He really didn't have any symptoms -- sometimes a boogery nose, but didn't have a cough the times he cultured it again.

At first it seemed VERY overwhelming -- the copay, the extra time to nebulize it -- of course we didn't know our compressor was faulty and the treatments should've taken only 25 minutes instead of 45-50. But we figured we'd do whatever we could to keep his lungs healthy. DH enjoys and extra half hour of snuggle time in the mornings and DS, likes that he can play an extra video game or two before supper while doing his nebs.

And I STILL get a little overwhelmed when a new drug is added to the mix. Zithromax once a day when DS turned 2 1/2 and another oral abx when he cultured yet another bug a year or so ago.

 

[Ratatosk]

DS was put on tobi, nebulized twice a day for 28 days, then off when he was 3 months old and cultured nonmucoid pseudomonas. We were told that if he had a clear culture after 6 months, he could go off it. He really didn't have any symptoms -- sometimes a boogery nose, but didn't have a cough the times he cultured it again.

At first it seemed VERY overwhelming -- the copay, the extra time to nebulize it -- of course we didn't know our compressor was faulty and the treatments should've taken only 25 minutes instead of 45-50. But we figured we'd do whatever we could to keep his lungs healthy. DH enjoys and extra half hour of snuggle time in the mornings and DS, likes that he can play an extra video game or two before supper while doing his nebs.

And I STILL get a little overwhelmed when a new drug is added to the mix. Zithromax once a day when DS turned 2 1/2 and another oral abx when he cultured yet another bug a year or so ago.

 

[Ratatosk]

DS was put on tobi, nebulized twice a day for 28 days, then off when he was 3 months old and cultured nonmucoid pseudomonas. We were told that if he had a clear culture after 6 months, he could go off it. He really didn't have any symptoms -- sometimes a boogery nose, but didn't have a cough the times he cultured it again.
<br />
<br />At first it seemed VERY overwhelming -- the copay, the extra time to nebulize it -- of course we didn't know our compressor was faulty and the treatments should've taken only 25 minutes instead of 45-50. But we figured we'd do whatever we could to keep his lungs healthy. DH enjoys and extra half hour of snuggle time in the mornings and DS, likes that he can play an extra video game or two before supper while doing his nebs.
<br />
<br />And I STILL get a little overwhelmed when a new drug is added to the mix. Zithromax once a day when DS turned 2 1/2 and another oral abx when he cultured yet another bug a year or so ago.