Pseudomonas is back

[juls]

I haven't posted for a while, we have been super busy with the start of school/activities! We found out last week that Isabella's pseudomonas aeriginosa (I'm sure I misspelled that!) is back. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Both girls were positive for it when they were first diagnosed last spring. Then in June (after cipro and TOBI) they were both negative. Now Isabella's is back. Taylor is still negative.

Isabella is back on cipro for 3 weeks and TOBI indefinitely. She is only 7 months old and it just breaks my heart that I have to give her such harsh medicines. She cries through the breathing treatments (unless she is super sleepy, then it puts her to sleep!) Sometimes she looks up at me with this look like, "why are you doing this to me mom?" She hasn't been sleeping well and has been coughing more since starting the cipro and TOBI again.

Is is common for the pseudomonas to come back so quickly? Does this mean it might not go away? I worry because she is already having problems with it at such a young age.

Julie

 

[juls]

I haven't posted for a while, we have been super busy with the start of school/activities! We found out last week that Isabella's pseudomonas aeriginosa (I'm sure I misspelled that!) is back. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Both girls were positive for it when they were first diagnosed last spring. Then in June (after cipro and TOBI) they were both negative. Now Isabella's is back. Taylor is still negative.

Isabella is back on cipro for 3 weeks and TOBI indefinitely. She is only 7 months old and it just breaks my heart that I have to give her such harsh medicines. She cries through the breathing treatments (unless she is super sleepy, then it puts her to sleep!) Sometimes she looks up at me with this look like, "why are you doing this to me mom?" She hasn't been sleeping well and has been coughing more since starting the cipro and TOBI again.

Is is common for the pseudomonas to come back so quickly? Does this mean it might not go away? I worry because she is already having problems with it at such a young age.

Julie

 

[juls]

I haven't posted for a while, we have been super busy with the start of school/activities! We found out last week that Isabella's pseudomonas aeriginosa (I'm sure I misspelled that!) is back. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Both girls were positive for it when they were first diagnosed last spring. Then in June (after cipro and TOBI) they were both negative. Now Isabella's is back. Taylor is still negative.

Isabella is back on cipro for 3 weeks and TOBI indefinitely. She is only 7 months old and it just breaks my heart that I have to give her such harsh medicines. She cries through the breathing treatments (unless she is super sleepy, then it puts her to sleep!) Sometimes she looks up at me with this look like, "why are you doing this to me mom?" She hasn't been sleeping well and has been coughing more since starting the cipro and TOBI again.

Is is common for the pseudomonas to come back so quickly? Does this mean it might not go away? I worry because she is already having problems with it at such a young age.

Julie

 

[juls]

I haven't posted for a while, we have been super busy with the start of school/activities! We found out last week that Isabella's pseudomonas aeriginosa (I'm sure I misspelled that!) is back. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Both girls were positive for it when they were first diagnosed last spring. Then in June (after cipro and TOBI) they were both negative. Now Isabella's is back. Taylor is still negative.

Isabella is back on cipro for 3 weeks and TOBI indefinitely. She is only 7 months old and it just breaks my heart that I have to give her such harsh medicines. She cries through the breathing treatments (unless she is super sleepy, then it puts her to sleep!) Sometimes she looks up at me with this look like, "why are you doing this to me mom?" She hasn't been sleeping well and has been coughing more since starting the cipro and TOBI again.

Is is common for the pseudomonas to come back so quickly? Does this mean it might not go away? I worry because she is already having problems with it at such a young age.

Julie

 

[juls]

I haven't posted for a while, we have been super busy with the start of school/activities! We found out last week that Isabella's pseudomonas aeriginosa (I'm sure I misspelled that!) is back. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Both girls were positive for it when they were first diagnosed last spring. Then in June (after cipro and TOBI) they were both negative. Now Isabella's is back. Taylor is still negative.

Isabella is back on cipro for 3 weeks and TOBI indefinitely. She is only 7 months old and it just breaks my heart that I have to give her such harsh medicines. She cries through the breathing treatments (unless she is super sleepy, then it puts her to sleep!) Sometimes she looks up at me with this look like, "why are you doing this to me mom?" She hasn't been sleeping well and has been coughing more since starting the cipro and TOBI again.

Is is common for the pseudomonas to come back so quickly? Does this mean it might not go away? I worry because she is already having problems with it at such a young age.

Julie

 

[purplemartin]

I am constantly wondering what is going through my little man's mind when I'm forcefully holding a mask over his face and squirting medicine left and right down his throat. It sucks!


As far as the pseudonomas, Briceton cultured it for the first time about 4 weeks ago. From my understanding, or what the docs told us, is that pseudonomas doesn't necessairly goes away. It remains in your lungs and decides when to show its ugly face by causing symptoms. Right now, at clinic, they are doing a clinical trial on this very thing, can't wait to find out there findings.


You probabley wanted more of an answer and hopefully one of the others can give you a better one. But I mainly wanted to let you know that I hope your little one soon gets to felling better!

 

[purplemartin]

I am constantly wondering what is going through my little man's mind when I'm forcefully holding a mask over his face and squirting medicine left and right down his throat. It sucks!


As far as the pseudonomas, Briceton cultured it for the first time about 4 weeks ago. From my understanding, or what the docs told us, is that pseudonomas doesn't necessairly goes away. It remains in your lungs and decides when to show its ugly face by causing symptoms. Right now, at clinic, they are doing a clinical trial on this very thing, can't wait to find out there findings.


You probabley wanted more of an answer and hopefully one of the others can give you a better one. But I mainly wanted to let you know that I hope your little one soon gets to felling better!

 

[purplemartin]

I am constantly wondering what is going through my little man's mind when I'm forcefully holding a mask over his face and squirting medicine left and right down his throat. It sucks!


As far as the pseudonomas, Briceton cultured it for the first time about 4 weeks ago. From my understanding, or what the docs told us, is that pseudonomas doesn't necessairly goes away. It remains in your lungs and decides when to show its ugly face by causing symptoms. Right now, at clinic, they are doing a clinical trial on this very thing, can't wait to find out there findings.


You probabley wanted more of an answer and hopefully one of the others can give you a better one. But I mainly wanted to let you know that I hope your little one soon gets to felling better!

 

[purplemartin]

I am constantly wondering what is going through my little man's mind when I'm forcefully holding a mask over his face and squirting medicine left and right down his throat. It sucks!


As far as the pseudonomas, Briceton cultured it for the first time about 4 weeks ago. From my understanding, or what the docs told us, is that pseudonomas doesn't necessairly goes away. It remains in your lungs and decides when to show its ugly face by causing symptoms. Right now, at clinic, they are doing a clinical trial on this very thing, can't wait to find out there findings.


You probabley wanted more of an answer and hopefully one of the others can give you a better one. But I mainly wanted to let you know that I hope your little one soon gets to felling better!

 

[purplemartin]

I am constantly wondering what is going through my little man's mind when I'm forcefully holding a mask over his face and squirting medicine left and right down his throat. It sucks!


As far as the pseudonomas, Briceton cultured it for the first time about 4 weeks ago. From my understanding, or what the docs told us, is that pseudonomas doesn't necessairly goes away. It remains in your lungs and decides when to show its ugly face by causing symptoms. Right now, at clinic, they are doing a clinical trial on this very thing, can't wait to find out there findings.


You probabley wanted more of an answer and hopefully one of the others can give you a better one. But I mainly wanted to let you know that I hope your little one soon gets to felling better!

 

[tammykrumrey]

I am actually going through this right now also. My older daughter, Kayla, has never cultured PA, although she in the past has tended to have more lung involvement.

My younger daughter, Hannah, cultured it for the first time last August/September. She had two rounds of Tobi and Cipro (or a placebo) because she is involved in the EPIC study (which is probably the one Sherry is talking about). She was clear after October last year. She did GREAT for almost a year, and then it popped back up at our last clinic appt about two and a half weeks ago. And now the kid is coughing like crazy. Breaks my heart when she is gagging from the cough.

She was on the Tobi and Cipro/Placebo for two weeks, and her cough has not gotten a lot better. So, we have put her on what we KNOW is Cipro, which she started last night, so I do hope she starts improving much more in the next few days. I really believe that maybe she was on the Placebo and not the real stuff, only because when Hannah took her Cipro last night she complained at how bad it tasted, and we didn't have that issue with the Cipro/Placebo that she was on for the last two weeks.

Our CF doctor has elluded to the fact that it is really hard to rid the lungs of these nasty things, like PA and MRSA. All we can do is knock them down for a while and then start the battle back up when they decide to come out of hiding. I, for one, really worry about that...not knowing what is lurking in your little ones lungs, causing damage, just bugs the heck out of me.

 

[tammykrumrey]

I am actually going through this right now also. My older daughter, Kayla, has never cultured PA, although she in the past has tended to have more lung involvement.

My younger daughter, Hannah, cultured it for the first time last August/September. She had two rounds of Tobi and Cipro (or a placebo) because she is involved in the EPIC study (which is probably the one Sherry is talking about). She was clear after October last year. She did GREAT for almost a year, and then it popped back up at our last clinic appt about two and a half weeks ago. And now the kid is coughing like crazy. Breaks my heart when she is gagging from the cough.

She was on the Tobi and Cipro/Placebo for two weeks, and her cough has not gotten a lot better. So, we have put her on what we KNOW is Cipro, which she started last night, so I do hope she starts improving much more in the next few days. I really believe that maybe she was on the Placebo and not the real stuff, only because when Hannah took her Cipro last night she complained at how bad it tasted, and we didn't have that issue with the Cipro/Placebo that she was on for the last two weeks.

Our CF doctor has elluded to the fact that it is really hard to rid the lungs of these nasty things, like PA and MRSA. All we can do is knock them down for a while and then start the battle back up when they decide to come out of hiding. I, for one, really worry about that...not knowing what is lurking in your little ones lungs, causing damage, just bugs the heck out of me.

 

[tammykrumrey]

I am actually going through this right now also. My older daughter, Kayla, has never cultured PA, although she in the past has tended to have more lung involvement.

My younger daughter, Hannah, cultured it for the first time last August/September. She had two rounds of Tobi and Cipro (or a placebo) because she is involved in the EPIC study (which is probably the one Sherry is talking about). She was clear after October last year. She did GREAT for almost a year, and then it popped back up at our last clinic appt about two and a half weeks ago. And now the kid is coughing like crazy. Breaks my heart when she is gagging from the cough.

She was on the Tobi and Cipro/Placebo for two weeks, and her cough has not gotten a lot better. So, we have put her on what we KNOW is Cipro, which she started last night, so I do hope she starts improving much more in the next few days. I really believe that maybe she was on the Placebo and not the real stuff, only because when Hannah took her Cipro last night she complained at how bad it tasted, and we didn't have that issue with the Cipro/Placebo that she was on for the last two weeks.

Our CF doctor has elluded to the fact that it is really hard to rid the lungs of these nasty things, like PA and MRSA. All we can do is knock them down for a while and then start the battle back up when they decide to come out of hiding. I, for one, really worry about that...not knowing what is lurking in your little ones lungs, causing damage, just bugs the heck out of me.

 

[tammykrumrey]

I am actually going through this right now also. My older daughter, Kayla, has never cultured PA, although she in the past has tended to have more lung involvement.

My younger daughter, Hannah, cultured it for the first time last August/September. She had two rounds of Tobi and Cipro (or a placebo) because she is involved in the EPIC study (which is probably the one Sherry is talking about). She was clear after October last year. She did GREAT for almost a year, and then it popped back up at our last clinic appt about two and a half weeks ago. And now the kid is coughing like crazy. Breaks my heart when she is gagging from the cough.

She was on the Tobi and Cipro/Placebo for two weeks, and her cough has not gotten a lot better. So, we have put her on what we KNOW is Cipro, which she started last night, so I do hope she starts improving much more in the next few days. I really believe that maybe she was on the Placebo and not the real stuff, only because when Hannah took her Cipro last night she complained at how bad it tasted, and we didn't have that issue with the Cipro/Placebo that she was on for the last two weeks.

Our CF doctor has elluded to the fact that it is really hard to rid the lungs of these nasty things, like PA and MRSA. All we can do is knock them down for a while and then start the battle back up when they decide to come out of hiding. I, for one, really worry about that...not knowing what is lurking in your little ones lungs, causing damage, just bugs the heck out of me.

 

[tammykrumrey]

I am actually going through this right now also. My older daughter, Kayla, has never cultured PA, although she in the past has tended to have more lung involvement.

My younger daughter, Hannah, cultured it for the first time last August/September. She had two rounds of Tobi and Cipro (or a placebo) because she is involved in the EPIC study (which is probably the one Sherry is talking about). She was clear after October last year. She did GREAT for almost a year, and then it popped back up at our last clinic appt about two and a half weeks ago. And now the kid is coughing like crazy. Breaks my heart when she is gagging from the cough.

She was on the Tobi and Cipro/Placebo for two weeks, and her cough has not gotten a lot better. So, we have put her on what we KNOW is Cipro, which she started last night, so I do hope she starts improving much more in the next few days. I really believe that maybe she was on the Placebo and not the real stuff, only because when Hannah took her Cipro last night she complained at how bad it tasted, and we didn't have that issue with the Cipro/Placebo that she was on for the last two weeks.

Our CF doctor has elluded to the fact that it is really hard to rid the lungs of these nasty things, like PA and MRSA. All we can do is knock them down for a while and then start the battle back up when they decide to come out of hiding. I, for one, really worry about that...not knowing what is lurking in your little ones lungs, causing damage, just bugs the heck out of me.

 

[Ratatosk]

DS first cultured Pseudo when he was 3 months old. Along with another bug -- enterbactor choclae (sp), which he apparently brought home from the NICU and which made him cough so hard, I'd hold him over sinks and floor drains after feeding him 'cuz he'd cough up his formula.

Seems as if the pseudo won't show up on cultures for 1-2 and then will make a surprise appearance just to remind us that DS has CF. Usually he hasn't shown any symptoms when he's cultured it. This summer he developed a little cough -- like he swallowed wrong -- turned out he cultured steno. malt.

So on top of the tobi every other month, they added septra. It bums me out when yet another med is added. But then I remind myself that this is what we need to do to keep him healthy. And DH does enjoy his cuddle time in the morning with DS when they do tobi and catch up on his cartoon watching before dinner in the evenings. <img src="i/expressions/face-icon-small-smile.gif" border="0">

One thing we DID notice was that when DS cultured pseudo, he usually had a sinus infection/head cold. So we wondered if maybe he was culturing it in his sinuses. The other thing we noticed is that he always cultured it when we went to the local CF clinic -- not when we went to his CF doctor in the City, nor when we went to see his local CF doctor for a well child peds visit. So we often wondered if there were some cross contamination issues going on with the cultures in the lab, etc. We no longer go to the local CF clinic, but visit two of his doctors at the main clinic instead.

 

[Ratatosk]

DS first cultured Pseudo when he was 3 months old. Along with another bug -- enterbactor choclae (sp), which he apparently brought home from the NICU and which made him cough so hard, I'd hold him over sinks and floor drains after feeding him 'cuz he'd cough up his formula.

Seems as if the pseudo won't show up on cultures for 1-2 and then will make a surprise appearance just to remind us that DS has CF. Usually he hasn't shown any symptoms when he's cultured it. This summer he developed a little cough -- like he swallowed wrong -- turned out he cultured steno. malt.

So on top of the tobi every other month, they added septra. It bums me out when yet another med is added. But then I remind myself that this is what we need to do to keep him healthy. And DH does enjoy his cuddle time in the morning with DS when they do tobi and catch up on his cartoon watching before dinner in the evenings. <img src="i/expressions/face-icon-small-smile.gif" border="0">

One thing we DID notice was that when DS cultured pseudo, he usually had a sinus infection/head cold. So we wondered if maybe he was culturing it in his sinuses. The other thing we noticed is that he always cultured it when we went to the local CF clinic -- not when we went to his CF doctor in the City, nor when we went to see his local CF doctor for a well child peds visit. So we often wondered if there were some cross contamination issues going on with the cultures in the lab, etc. We no longer go to the local CF clinic, but visit two of his doctors at the main clinic instead.

 

[Ratatosk]

DS first cultured Pseudo when he was 3 months old. Along with another bug -- enterbactor choclae (sp), which he apparently brought home from the NICU and which made him cough so hard, I'd hold him over sinks and floor drains after feeding him 'cuz he'd cough up his formula.

Seems as if the pseudo won't show up on cultures for 1-2 and then will make a surprise appearance just to remind us that DS has CF. Usually he hasn't shown any symptoms when he's cultured it. This summer he developed a little cough -- like he swallowed wrong -- turned out he cultured steno. malt.

So on top of the tobi every other month, they added septra. It bums me out when yet another med is added. But then I remind myself that this is what we need to do to keep him healthy. And DH does enjoy his cuddle time in the morning with DS when they do tobi and catch up on his cartoon watching before dinner in the evenings. <img src="i/expressions/face-icon-small-smile.gif" border="0">

One thing we DID notice was that when DS cultured pseudo, he usually had a sinus infection/head cold. So we wondered if maybe he was culturing it in his sinuses. The other thing we noticed is that he always cultured it when we went to the local CF clinic -- not when we went to his CF doctor in the City, nor when we went to see his local CF doctor for a well child peds visit. So we often wondered if there were some cross contamination issues going on with the cultures in the lab, etc. We no longer go to the local CF clinic, but visit two of his doctors at the main clinic instead.

 

[Ratatosk]

DS first cultured Pseudo when he was 3 months old. Along with another bug -- enterbactor choclae (sp), which he apparently brought home from the NICU and which made him cough so hard, I'd hold him over sinks and floor drains after feeding him 'cuz he'd cough up his formula.

Seems as if the pseudo won't show up on cultures for 1-2 and then will make a surprise appearance just to remind us that DS has CF. Usually he hasn't shown any symptoms when he's cultured it. This summer he developed a little cough -- like he swallowed wrong -- turned out he cultured steno. malt.

So on top of the tobi every other month, they added septra. It bums me out when yet another med is added. But then I remind myself that this is what we need to do to keep him healthy. And DH does enjoy his cuddle time in the morning with DS when they do tobi and catch up on his cartoon watching before dinner in the evenings. <img src="i/expressions/face-icon-small-smile.gif" border="0">

One thing we DID notice was that when DS cultured pseudo, he usually had a sinus infection/head cold. So we wondered if maybe he was culturing it in his sinuses. The other thing we noticed is that he always cultured it when we went to the local CF clinic -- not when we went to his CF doctor in the City, nor when we went to see his local CF doctor for a well child peds visit. So we often wondered if there were some cross contamination issues going on with the cultures in the lab, etc. We no longer go to the local CF clinic, but visit two of his doctors at the main clinic instead.

 

[Ratatosk]

DS first cultured Pseudo when he was 3 months old. Along with another bug -- enterbactor choclae (sp), which he apparently brought home from the NICU and which made him cough so hard, I'd hold him over sinks and floor drains after feeding him 'cuz he'd cough up his formula.

Seems as if the pseudo won't show up on cultures for 1-2 and then will make a surprise appearance just to remind us that DS has CF. Usually he hasn't shown any symptoms when he's cultured it. This summer he developed a little cough -- like he swallowed wrong -- turned out he cultured steno. malt.

So on top of the tobi every other month, they added septra. It bums me out when yet another med is added. But then I remind myself that this is what we need to do to keep him healthy. And DH does enjoy his cuddle time in the morning with DS when they do tobi and catch up on his cartoon watching before dinner in the evenings. <img src="i/expressions/face-icon-small-smile.gif" border="0">

One thing we DID notice was that when DS cultured pseudo, he usually had a sinus infection/head cold. So we wondered if maybe he was culturing it in his sinuses. The other thing we noticed is that he always cultured it when we went to the local CF clinic -- not when we went to his CF doctor in the City, nor when we went to see his local CF doctor for a well child peds visit. So we often wondered if there were some cross contamination issues going on with the cultures in the lab, etc. We no longer go to the local CF clinic, but visit two of his doctors at the main clinic instead.