Son with CF

[JustDucky]

The only thing I know about Pandorea is that it is similar to B. cepacia as far as growing it out in a laboratory goes. It is sometimes confused with B. cepacia, and vice versa as well...it is similar on a cellular level. As Tom said, Pandorea can be pretty resistant. Do you know if your son's strain is sensitive to any antibiotics? If he is, that is helpful. I am not sure how easy it is to treat Pandorea as far as getting rid of it or how much it affects the lungs of a CF'er as compared to other bugs. As for his FEV drop, I think that is significant, it seems to be staying in that range...I hope that the docs get the right meds on board and that those numbers increase. This all must be frustrating for him as well as for you.
Keeping you guys in my thoughts and prayers.
Jenn

 

[JustDucky]

The only thing I know about Pandorea is that it is similar to B. cepacia as far as growing it out in a laboratory goes. It is sometimes confused with B. cepacia, and vice versa as well...it is similar on a cellular level. As Tom said, Pandorea can be pretty resistant. Do you know if your son's strain is sensitive to any antibiotics? If he is, that is helpful. I am not sure how easy it is to treat Pandorea as far as getting rid of it or how much it affects the lungs of a CF'er as compared to other bugs. As for his FEV drop, I think that is significant, it seems to be staying in that range...I hope that the docs get the right meds on board and that those numbers increase. This all must be frustrating for him as well as for you.
Keeping you guys in my thoughts and prayers.
Jenn

 

[JustDucky]

The only thing I know about Pandorea is that it is similar to B. cepacia as far as growing it out in a laboratory goes. It is sometimes confused with B. cepacia, and vice versa as well...it is similar on a cellular level. As Tom said, Pandorea can be pretty resistant. Do you know if your son's strain is sensitive to any antibiotics? If he is, that is helpful. I am not sure how easy it is to treat Pandorea as far as getting rid of it or how much it affects the lungs of a CF'er as compared to other bugs. As for his FEV drop, I think that is significant, it seems to be staying in that range...I hope that the docs get the right meds on board and that those numbers increase. This all must be frustrating for him as well as for you.
Keeping you guys in my thoughts and prayers.
Jenn

 

[JustDucky]

The only thing I know about Pandorea is that it is similar to B. cepacia as far as growing it out in a laboratory goes. It is sometimes confused with B. cepacia, and vice versa as well...it is similar on a cellular level. As Tom said, Pandorea can be pretty resistant. Do you know if your son's strain is sensitive to any antibiotics? If he is, that is helpful. I am not sure how easy it is to treat Pandorea as far as getting rid of it or how much it affects the lungs of a CF'er as compared to other bugs. As for his FEV drop, I think that is significant, it seems to be staying in that range...I hope that the docs get the right meds on board and that those numbers increase. This all must be frustrating for him as well as for you.
Keeping you guys in my thoughts and prayers.
Jenn

 

[JustDucky]

The only thing I know about Pandorea is that it is similar to B. cepacia as far as growing it out in a laboratory goes. It is sometimes confused with B. cepacia, and vice versa as well...it is similar on a cellular level. As Tom said, Pandorea can be pretty resistant. Do you know if your son's strain is sensitive to any antibiotics? If he is, that is helpful. I am not sure how easy it is to treat Pandorea as far as getting rid of it or how much it affects the lungs of a CF'er as compared to other bugs. As for his FEV drop, I think that is significant, it seems to be staying in that range...I hope that the docs get the right meds on board and that those numbers increase. This all must be frustrating for him as well as for you.
<br />Keeping you guys in my thoughts and prayers.
<br />Jenn

 

[nchandler]

Thanks, all.

The drop was from a consistent baseline of 50 to about 34 in May, and now the best his FEV1 numbers ever get are 37 - 39%. 39% was for a short time. In fact, on one of his summer visits, he went in the hospital with a 39 and came home with a 37! We are frustrated mainly because the two 3-week visits this summer, both started with the same drug regimen and then on week 3, when the results were not different, they changed his meds. This happened both times. Both times his numbers barely increased by the end of three weeks and his returns back to the hospital were within 4 and 6 weeks. I just have to think its the pandorea because before that, he had a really good year with only 2 hospital visits in his freshman year in college. Mostly we feel frustrated because our Drs. seemed really concerned about it earlier in the year, and now the topic isn't addressed at all and when he is in the hospital, it just all seems to be routine. He is in transition from Children's Hospital to the adult hospital, and I feel the transition has caused a big gap in communication between the "team". I think our frustration stems more from that, than anything. Are there others who have had this breakdown in communication with their Drs.?

 

[nchandler]

Thanks, all.

The drop was from a consistent baseline of 50 to about 34 in May, and now the best his FEV1 numbers ever get are 37 - 39%. 39% was for a short time. In fact, on one of his summer visits, he went in the hospital with a 39 and came home with a 37! We are frustrated mainly because the two 3-week visits this summer, both started with the same drug regimen and then on week 3, when the results were not different, they changed his meds. This happened both times. Both times his numbers barely increased by the end of three weeks and his returns back to the hospital were within 4 and 6 weeks. I just have to think its the pandorea because before that, he had a really good year with only 2 hospital visits in his freshman year in college. Mostly we feel frustrated because our Drs. seemed really concerned about it earlier in the year, and now the topic isn't addressed at all and when he is in the hospital, it just all seems to be routine. He is in transition from Children's Hospital to the adult hospital, and I feel the transition has caused a big gap in communication between the "team". I think our frustration stems more from that, than anything. Are there others who have had this breakdown in communication with their Drs.?

 

[nchandler]

Thanks, all.

The drop was from a consistent baseline of 50 to about 34 in May, and now the best his FEV1 numbers ever get are 37 - 39%. 39% was for a short time. In fact, on one of his summer visits, he went in the hospital with a 39 and came home with a 37! We are frustrated mainly because the two 3-week visits this summer, both started with the same drug regimen and then on week 3, when the results were not different, they changed his meds. This happened both times. Both times his numbers barely increased by the end of three weeks and his returns back to the hospital were within 4 and 6 weeks. I just have to think its the pandorea because before that, he had a really good year with only 2 hospital visits in his freshman year in college. Mostly we feel frustrated because our Drs. seemed really concerned about it earlier in the year, and now the topic isn't addressed at all and when he is in the hospital, it just all seems to be routine. He is in transition from Children's Hospital to the adult hospital, and I feel the transition has caused a big gap in communication between the "team". I think our frustration stems more from that, than anything. Are there others who have had this breakdown in communication with their Drs.?

 

[nchandler]

Thanks, all.

The drop was from a consistent baseline of 50 to about 34 in May, and now the best his FEV1 numbers ever get are 37 - 39%. 39% was for a short time. In fact, on one of his summer visits, he went in the hospital with a 39 and came home with a 37! We are frustrated mainly because the two 3-week visits this summer, both started with the same drug regimen and then on week 3, when the results were not different, they changed his meds. This happened both times. Both times his numbers barely increased by the end of three weeks and his returns back to the hospital were within 4 and 6 weeks. I just have to think its the pandorea because before that, he had a really good year with only 2 hospital visits in his freshman year in college. Mostly we feel frustrated because our Drs. seemed really concerned about it earlier in the year, and now the topic isn't addressed at all and when he is in the hospital, it just all seems to be routine. He is in transition from Children's Hospital to the adult hospital, and I feel the transition has caused a big gap in communication between the "team". I think our frustration stems more from that, than anything. Are there others who have had this breakdown in communication with their Drs.?

 

[nchandler]

Thanks, all.
<br />
<br />The drop was from a consistent baseline of 50 to about 34 in May, and now the best his FEV1 numbers ever get are 37 - 39%. 39% was for a short time. In fact, on one of his summer visits, he went in the hospital with a 39 and came home with a 37! We are frustrated mainly because the two 3-week visits this summer, both started with the same drug regimen and then on week 3, when the results were not different, they changed his meds. This happened both times. Both times his numbers barely increased by the end of three weeks and his returns back to the hospital were within 4 and 6 weeks. I just have to think its the pandorea because before that, he had a really good year with only 2 hospital visits in his freshman year in college. Mostly we feel frustrated because our Drs. seemed really concerned about it earlier in the year, and now the topic isn't addressed at all and when he is in the hospital, it just all seems to be routine. He is in transition from Children's Hospital to the adult hospital, and I feel the transition has caused a big gap in communication between the "team". I think our frustration stems more from that, than anything. Are there others who have had this breakdown in communication with their Drs.?