Son with CF

[nchandler]

Hi all. I am new to this forum. My son, Joe, is 19 years old and is in the hospital as we speak. His health seems to have gotten much worse this year. He was in the hospital in the Spring, 2 weeks, twice this summer, 3 weeks each visit, October 2 weeks, and again now. He is going to go home on an iv this time in order to take exams next week. He is in college. Recently (last hospital visit) his Drs told us his sputum sample came back showing pandorea. I cannot find a lot about this particular bacteria, but his FEV1 is staying around 37 - 39 at best since late summer. Has anyone else been diagnosed with this particular bacteria? His functions were around 50 last year and in January.

 

[nchandler]

Hi all. I am new to this forum. My son, Joe, is 19 years old and is in the hospital as we speak. His health seems to have gotten much worse this year. He was in the hospital in the Spring, 2 weeks, twice this summer, 3 weeks each visit, October 2 weeks, and again now. He is going to go home on an iv this time in order to take exams next week. He is in college. Recently (last hospital visit) his Drs told us his sputum sample came back showing pandorea. I cannot find a lot about this particular bacteria, but his FEV1 is staying around 37 - 39 at best since late summer. Has anyone else been diagnosed with this particular bacteria? His functions were around 50 last year and in January.

 

[nchandler]

Hi all. I am new to this forum. My son, Joe, is 19 years old and is in the hospital as we speak. His health seems to have gotten much worse this year. He was in the hospital in the Spring, 2 weeks, twice this summer, 3 weeks each visit, October 2 weeks, and again now. He is going to go home on an iv this time in order to take exams next week. He is in college. Recently (last hospital visit) his Drs told us his sputum sample came back showing pandorea. I cannot find a lot about this particular bacteria, but his FEV1 is staying around 37 - 39 at best since late summer. Has anyone else been diagnosed with this particular bacteria? His functions were around 50 last year and in January.

 

[nchandler]

Hi all. I am new to this forum. My son, Joe, is 19 years old and is in the hospital as we speak. His health seems to have gotten much worse this year. He was in the hospital in the Spring, 2 weeks, twice this summer, 3 weeks each visit, October 2 weeks, and again now. He is going to go home on an iv this time in order to take exams next week. He is in college. Recently (last hospital visit) his Drs told us his sputum sample came back showing pandorea. I cannot find a lot about this particular bacteria, but his FEV1 is staying around 37 - 39 at best since late summer. Has anyone else been diagnosed with this particular bacteria? His functions were around 50 last year and in January.

 

[nchandler]

Hi all. I am new to this forum. My son, Joe, is 19 years old and is in the hospital as we speak. His health seems to have gotten much worse this year. He was in the hospital in the Spring, 2 weeks, twice this summer, 3 weeks each visit, October 2 weeks, and again now. He is going to go home on an iv this time in order to take exams next week. He is in college. Recently (last hospital visit) his Drs told us his sputum sample came back showing pandorea. I cannot find a lot about this particular bacteria, but his FEV1 is staying around 37 - 39 at best since late summer. Has anyone else been diagnosed with this particular bacteria? His functions were around 50 last year and in January.

 

[just1more]

First of all, welcome to the site. Sorry to hear about your son's struggles but you will find a great group of both parents and adults w/CF on this site.

As for Pandorea, I agree there is not much out there but here is what I found in a couple of sources (sorry it is not the most positive):

1) formal name: Pandorea pnomenusa
2) it appears to be fairly rare overall but found in the environment/soil
3) biologically it is closely related to B. Cepacia
4) Some strains can prove to be highly abx-resistant but is treatable successfully with the right abx

 

[just1more]

First of all, welcome to the site. Sorry to hear about your son's struggles but you will find a great group of both parents and adults w/CF on this site.

As for Pandorea, I agree there is not much out there but here is what I found in a couple of sources (sorry it is not the most positive):

1) formal name: Pandorea pnomenusa
2) it appears to be fairly rare overall but found in the environment/soil
3) biologically it is closely related to B. Cepacia
4) Some strains can prove to be highly abx-resistant but is treatable successfully with the right abx

 

[just1more]

First of all, welcome to the site. Sorry to hear about your son's struggles but you will find a great group of both parents and adults w/CF on this site.

As for Pandorea, I agree there is not much out there but here is what I found in a couple of sources (sorry it is not the most positive):

1) formal name: Pandorea pnomenusa
2) it appears to be fairly rare overall but found in the environment/soil
3) biologically it is closely related to B. Cepacia
4) Some strains can prove to be highly abx-resistant but is treatable successfully with the right abx

 

[just1more]

First of all, welcome to the site. Sorry to hear about your son's struggles but you will find a great group of both parents and adults w/CF on this site.

As for Pandorea, I agree there is not much out there but here is what I found in a couple of sources (sorry it is not the most positive):

1) formal name: Pandorea pnomenusa
2) it appears to be fairly rare overall but found in the environment/soil
3) biologically it is closely related to B. Cepacia
4) Some strains can prove to be highly abx-resistant but is treatable successfully with the right abx

 

[just1more]

First of all, welcome to the site. Sorry to hear about your son's struggles but you will find a great group of both parents and adults w/CF on this site.
<br />
<br />As for Pandorea, I agree there is not much out there but here is what I found in a couple of sources (sorry it is not the most positive):
<br />
<br />1) formal name: Pandorea pnomenusa
<br />2) it appears to be fairly rare overall but found in the environment/soil
<br />3) biologically it is closely related to B. Cepacia
<br />4) Some strains can prove to be highly abx-resistant but is treatable successfully with the right abx

 

[nchandler]

Thanks, Tom.

That confirms what I have found, but unfortunately, I don't think our Drs. have found the right abx yet. I find that accumulating as much information as possible is always helpful. Joe had non-tuberculosis micobacteria about 5 years ago, also found in the environment/soil, and after a year of IV antibiotics as well as inhaled, he has tested negative for the past 4 years and his functions came back up.

Nora

 

[nchandler]

Thanks, Tom.

That confirms what I have found, but unfortunately, I don't think our Drs. have found the right abx yet. I find that accumulating as much information as possible is always helpful. Joe had non-tuberculosis micobacteria about 5 years ago, also found in the environment/soil, and after a year of IV antibiotics as well as inhaled, he has tested negative for the past 4 years and his functions came back up.

Nora

 

[nchandler]

Thanks, Tom.

That confirms what I have found, but unfortunately, I don't think our Drs. have found the right abx yet. I find that accumulating as much information as possible is always helpful. Joe had non-tuberculosis micobacteria about 5 years ago, also found in the environment/soil, and after a year of IV antibiotics as well as inhaled, he has tested negative for the past 4 years and his functions came back up.

Nora

 

[nchandler]

Thanks, Tom.

That confirms what I have found, but unfortunately, I don't think our Drs. have found the right abx yet. I find that accumulating as much information as possible is always helpful. Joe had non-tuberculosis micobacteria about 5 years ago, also found in the environment/soil, and after a year of IV antibiotics as well as inhaled, he has tested negative for the past 4 years and his functions came back up.

Nora

 

[nchandler]

Thanks, Tom.
<br />
<br />That confirms what I have found, but unfortunately, I don't think our Drs. have found the right abx yet. I find that accumulating as much information as possible is always helpful. Joe had non-tuberculosis micobacteria about 5 years ago, also found in the environment/soil, and after a year of IV antibiotics as well as inhaled, he has tested negative for the past 4 years and his functions came back up.
<br />
<br />Nora

 

[LouLou]

A drop in FEV1 from 50 to 39% is not a big drop. One could easily see this sort of drop with a simple cold gone into the lungs. Although if he is remaining in the 30s it is now time to start researching and getting evaluated for transplant.

I do not know anything about Pandorea. Have you searched on the site for it?

 

[LouLou]

A drop in FEV1 from 50 to 39% is not a big drop. One could easily see this sort of drop with a simple cold gone into the lungs. Although if he is remaining in the 30s it is now time to start researching and getting evaluated for transplant.

I do not know anything about Pandorea. Have you searched on the site for it?

 

[LouLou]

A drop in FEV1 from 50 to 39% is not a big drop. One could easily see this sort of drop with a simple cold gone into the lungs. Although if he is remaining in the 30s it is now time to start researching and getting evaluated for transplant.

I do not know anything about Pandorea. Have you searched on the site for it?

 

[LouLou]

A drop in FEV1 from 50 to 39% is not a big drop. One could easily see this sort of drop with a simple cold gone into the lungs. Although if he is remaining in the 30s it is now time to start researching and getting evaluated for transplant.

I do not know anything about Pandorea. Have you searched on the site for it?

 

[LouLou]

A drop in FEV1 from 50 to 39% is not a big drop. One could easily see this sort of drop with a simple cold gone into the lungs. Although if he is remaining in the 30s it is now time to start researching and getting evaluated for transplant.
<br />
<br />I do not know anything about Pandorea. Have you searched on the site for it?