pseudomonas....elevated liver enzymes.advice??

C

crickit715

New member
my daughter is 13 months old and her throat culture came back with positive pseudomonas...they said it is the non-mucoid type for now, but they started her on tobi and cipro. i am totally devistated!! they said this will never truly go away and it is the number one cause of lung deterioration in cf. i feel like they just gave her a death sentence! am i reading too much into this?? what are the facts?? does anyone have anymore info or personal experience with contracting pa this early??? ...also her blood work came back with elevated liver enzymes...they are testing her again the end of this month because she is showing no signs or symptoms of liver disfunction...the doctor said it could be a "fluke" and they will retest. has anyone had this happen???
 
C

crickit715

New member
my daughter is 13 months old and her throat culture came back with positive pseudomonas...they said it is the non-mucoid type for now, but they started her on tobi and cipro. i am totally devistated!! they said this will never truly go away and it is the number one cause of lung deterioration in cf. i feel like they just gave her a death sentence! am i reading too much into this?? what are the facts?? does anyone have anymore info or personal experience with contracting pa this early??? ...also her blood work came back with elevated liver enzymes...they are testing her again the end of this month because she is showing no signs or symptoms of liver disfunction...the doctor said it could be a "fluke" and they will retest. has anyone had this happen???
 
C

crickit715

New member
my daughter is 13 months old and her throat culture came back with positive pseudomonas...they said it is the non-mucoid type for now, but they started her on tobi and cipro. i am totally devistated!! they said this will never truly go away and it is the number one cause of lung deterioration in cf. i feel like they just gave her a death sentence! am i reading too much into this?? what are the facts?? does anyone have anymore info or personal experience with contracting pa this early??? ...also her blood work came back with elevated liver enzymes...they are testing her again the end of this month because she is showing no signs or symptoms of liver disfunction...the doctor said it could be a "fluke" and they will retest. has anyone had this happen???
 
C

crickit715

New member
my daughter is 13 months old and her throat culture came back with positive pseudomonas...they said it is the non-mucoid type for now, but they started her on tobi and cipro. i am totally devistated!! they said this will never truly go away and it is the number one cause of lung deterioration in cf. i feel like they just gave her a death sentence! am i reading too much into this?? what are the facts?? does anyone have anymore info or personal experience with contracting pa this early??? ...also her blood work came back with elevated liver enzymes...they are testing her again the end of this month because she is showing no signs or symptoms of liver disfunction...the doctor said it could be a "fluke" and they will retest. has anyone had this happen???
 
C

crickit715

New member
my daughter is 13 months old and her throat culture came back with positive pseudomonas...they said it is the non-mucoid type for now, but they started her on tobi and cipro. i am totally devistated!! they said this will never truly go away and it is the number one cause of lung deterioration in cf. i feel like they just gave her a death sentence! am i reading too much into this?? what are the facts?? does anyone have anymore info or personal experience with contracting pa this early??? ...also her blood work came back with elevated liver enzymes...they are testing her again the end of this month because she is showing no signs or symptoms of liver disfunction...the doctor said it could be a "fluke" and they will retest. has anyone had this happen???
 
J

just1more

New member
First, just to clarify the two issues you mention are not related (outside of both being CF issues).

As for PA, some do culture very young, some make it longer; however, I think that most (if not all) ultimately culture it. It is part of the progression of CF. You can live for years with it, so don't panic. However, the fact still remains that CF ultimately always wins; so I'm glad to see your Dr's are being proactive. Doing so will limit/delay the impact as long as possible.

On the liver issue, did your daughter ever get TPN (feeding via IV)? It is often used when kids with CF have bowel surgery, and TPN causes elevated liver enzymes.

Either way, the levels being elevated does mean it needs monitored, but not necessarily treated. If so they can give meds to help if the follow-up test shows a level that is concerning.

Hope this helps,
 
J

just1more

New member
First, just to clarify the two issues you mention are not related (outside of both being CF issues).

As for PA, some do culture very young, some make it longer; however, I think that most (if not all) ultimately culture it. It is part of the progression of CF. You can live for years with it, so don't panic. However, the fact still remains that CF ultimately always wins; so I'm glad to see your Dr's are being proactive. Doing so will limit/delay the impact as long as possible.

On the liver issue, did your daughter ever get TPN (feeding via IV)? It is often used when kids with CF have bowel surgery, and TPN causes elevated liver enzymes.

Either way, the levels being elevated does mean it needs monitored, but not necessarily treated. If so they can give meds to help if the follow-up test shows a level that is concerning.

Hope this helps,
 
J

just1more

New member
First, just to clarify the two issues you mention are not related (outside of both being CF issues).

As for PA, some do culture very young, some make it longer; however, I think that most (if not all) ultimately culture it. It is part of the progression of CF. You can live for years with it, so don't panic. However, the fact still remains that CF ultimately always wins; so I'm glad to see your Dr's are being proactive. Doing so will limit/delay the impact as long as possible.

On the liver issue, did your daughter ever get TPN (feeding via IV)? It is often used when kids with CF have bowel surgery, and TPN causes elevated liver enzymes.

Either way, the levels being elevated does mean it needs monitored, but not necessarily treated. If so they can give meds to help if the follow-up test shows a level that is concerning.

Hope this helps,
 
J

just1more

New member
First, just to clarify the two issues you mention are not related (outside of both being CF issues).

As for PA, some do culture very young, some make it longer; however, I think that most (if not all) ultimately culture it. It is part of the progression of CF. You can live for years with it, so don't panic. However, the fact still remains that CF ultimately always wins; so I'm glad to see your Dr's are being proactive. Doing so will limit/delay the impact as long as possible.

On the liver issue, did your daughter ever get TPN (feeding via IV)? It is often used when kids with CF have bowel surgery, and TPN causes elevated liver enzymes.

Either way, the levels being elevated does mean it needs monitored, but not necessarily treated. If so they can give meds to help if the follow-up test shows a level that is concerning.

Hope this helps,
 
J

just1more

New member
First, just to clarify the two issues you mention are not related (outside of both being CF issues).
<br />
<br />As for PA, some do culture very young, some make it longer; however, I think that most (if not all) ultimately culture it. It is part of the progression of CF. You can live for years with it, so don't panic. However, the fact still remains that CF ultimately always wins; so I'm glad to see your Dr's are being proactive. Doing so will limit/delay the impact as long as possible.
<br />
<br />On the liver issue, did your daughter ever get TPN (feeding via IV)? It is often used when kids with CF have bowel surgery, and TPN causes elevated liver enzymes.
<br />
<br />Either way, the levels being elevated does mean it needs monitored, but not necessarily treated. If so they can give meds to help if the follow-up test shows a level that is concerning.
<br />
<br />Hope this helps,
<br />
 
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