Mysterious 20% drop in FEV1 over the last month

ClairesMom · Sep 13, 2009

My daughter Claire is 12 years old - diagnosed at birth, MRSA, pseudomonas, stenotrophamonus, Staph, aspergillus, CF Related Diabetes. She has quite a rough time with her CF and is hospitalized several times a year even though we are very thorough at home and she works hard to clear her airways and stay healthy. The last 2 years have been pretty tough - in the hospital about 5 times a year for 21 day tune ups. Back on August 7th she was admitted with a pretty bad exacerbation..FEV was about 53%, her best is 64%. She got the usual IV cocktail of 3 antibiotics, increased treatments, cholistin, etc..but instead of getting better, she actually dropped to 45%. Her doc sent us home with some new inhaled antibiotics, bactrim and increased treatments and asked that we come back in 10 days for a f/u. He had no answer for us but said that he can't really keep her there on antibiotics if it's not working so he was trying to change it up. When we went back, she had dropped again..she was at 43% and o2 was 94%. Still, no answer! We just readmitted today and had a bronch to look for any new bugs, but he came out of the procedure shaking his head saying she had an extreme amount of mucus and blocked airways..said it's pretty critical at this point. He hopes it isn't a "mycobacteria", will test the sample for that too. Has anyone had such a strange, acute situation that doesn't clear up with antibiotics? I wonder if all of a sudden she's resistant to Vanco, Ceftaz and Astreonim? Any ideas or experience? I'm starting to get very worried..thank you. Another parent suggested that I post on this forum to get any feedback from you guys.

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ClairesMom · Sep 13, 2009

My daughter Claire is 12 years old - diagnosed at birth, MRSA, pseudomonas, stenotrophamonus, Staph, aspergillus, CF Related Diabetes. She has quite a rough time with her CF and is hospitalized several times a year even though we are very thorough at home and she works hard to clear her airways and stay healthy. The last 2 years have been pretty tough - in the hospital about 5 times a year for 21 day tune ups. Back on August 7th she was admitted with a pretty bad exacerbation..FEV was about 53%, her best is 64%. She got the usual IV cocktail of 3 antibiotics, increased treatments, cholistin, etc..but instead of getting better, she actually dropped to 45%. Her doc sent us home with some new inhaled antibiotics, bactrim and increased treatments and asked that we come back in 10 days for a f/u. He had no answer for us but said that he can't really keep her there on antibiotics if it's not working so he was trying to change it up. When we went back, she had dropped again..she was at 43% and o2 was 94%. Still, no answer! We just readmitted today and had a bronch to look for any new bugs, but he came out of the procedure shaking his head saying she had an extreme amount of mucus and blocked airways..said it's pretty critical at this point. He hopes it isn't a "mycobacteria", will test the sample for that too. Has anyone had such a strange, acute situation that doesn't clear up with antibiotics? I wonder if all of a sudden she's resistant to Vanco, Ceftaz and Astreonim? Any ideas or experience? I'm starting to get very worried..thank you. Another parent suggested that I post on this forum to get any feedback from you guys.

-------------------------

ClairesMom · Sep 13, 2009

My daughter Claire is 12 years old - diagnosed at birth, MRSA, pseudomonas, stenotrophamonus, Staph, aspergillus, CF Related Diabetes. She has quite a rough time with her CF and is hospitalized several times a year even though we are very thorough at home and she works hard to clear her airways and stay healthy. The last 2 years have been pretty tough - in the hospital about 5 times a year for 21 day tune ups. Back on August 7th she was admitted with a pretty bad exacerbation..FEV was about 53%, her best is 64%. She got the usual IV cocktail of 3 antibiotics, increased treatments, cholistin, etc..but instead of getting better, she actually dropped to 45%. Her doc sent us home with some new inhaled antibiotics, bactrim and increased treatments and asked that we come back in 10 days for a f/u. He had no answer for us but said that he can't really keep her there on antibiotics if it's not working so he was trying to change it up. When we went back, she had dropped again..she was at 43% and o2 was 94%. Still, no answer! We just readmitted today and had a bronch to look for any new bugs, but he came out of the procedure shaking his head saying she had an extreme amount of mucus and blocked airways..said it's pretty critical at this point. He hopes it isn't a "mycobacteria", will test the sample for that too. Has anyone had such a strange, acute situation that doesn't clear up with antibiotics? I wonder if all of a sudden she's resistant to Vanco, Ceftaz and Astreonim? Any ideas or experience? I'm starting to get very worried..thank you. Another parent suggested that I post on this forum to get any feedback from you guys.

-------------------------

ClairesMom · Sep 13, 2009

My daughter Claire is 12 years old - diagnosed at birth, MRSA, pseudomonas, stenotrophamonus, Staph, aspergillus, CF Related Diabetes. She has quite a rough time with her CF and is hospitalized several times a year even though we are very thorough at home and she works hard to clear her airways and stay healthy. The last 2 years have been pretty tough - in the hospital about 5 times a year for 21 day tune ups. Back on August 7th she was admitted with a pretty bad exacerbation..FEV was about 53%, her best is 64%. She got the usual IV cocktail of 3 antibiotics, increased treatments, cholistin, etc..but instead of getting better, she actually dropped to 45%. Her doc sent us home with some new inhaled antibiotics, bactrim and increased treatments and asked that we come back in 10 days for a f/u. He had no answer for us but said that he can't really keep her there on antibiotics if it's not working so he was trying to change it up. When we went back, she had dropped again..she was at 43% and o2 was 94%. Still, no answer! We just readmitted today and had a bronch to look for any new bugs, but he came out of the procedure shaking his head saying she had an extreme amount of mucus and blocked airways..said it's pretty critical at this point. He hopes it isn't a "mycobacteria", will test the sample for that too. Has anyone had such a strange, acute situation that doesn't clear up with antibiotics? I wonder if all of a sudden she's resistant to Vanco, Ceftaz and Astreonim? Any ideas or experience? I'm starting to get very worried..thank you. Another parent suggested that I post on this forum to get any feedback from you guys.

-------------------------

ClairesMom · Sep 13, 2009

My daughter Claire is 12 years old - diagnosed at birth, MRSA, pseudomonas, stenotrophamonus, Staph, aspergillus, CF Related Diabetes. She has quite a rough time with her CF and is hospitalized several times a year even though we are very thorough at home and she works hard to clear her airways and stay healthy. The last 2 years have been pretty tough - in the hospital about 5 times a year for 21 day tune ups. Back on August 7th she was admitted with a pretty bad exacerbation..FEV was about 53%, her best is 64%. She got the usual IV cocktail of 3 antibiotics, increased treatments, cholistin, etc..but instead of getting better, she actually dropped to 45%. Her doc sent us home with some new inhaled antibiotics, bactrim and increased treatments and asked that we come back in 10 days for a f/u. He had no answer for us but said that he can't really keep her there on antibiotics if it's not working so he was trying to change it up. When we went back, she had dropped again..she was at 43% and o2 was 94%. Still, no answer! We just readmitted today and had a bronch to look for any new bugs, but he came out of the procedure shaking his head saying she had an extreme amount of mucus and blocked airways..said it's pretty critical at this point. He hopes it isn't a "mycobacteria", will test the sample for that too. Has anyone had such a strange, acute situation that doesn't clear up with antibiotics? I wonder if all of a sudden she's resistant to Vanco, Ceftaz and Astreonim? Any ideas or experience? I'm starting to get very worried..thank you. Another parent suggested that I post on this forum to get any feedback from you guys.
 
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Transplantmommy · Sep 13, 2009

So sorry to hear of your daughters troubles. Has she been tested for Cepacia? That's about the only bacteria that I know of that causes a huge drop in FEV1 so quickly. The only time that I started dropping like that and not coming back up is when it was time for transplant. I kept getting infections and the antibiotics slightly worked but then I would be back on them after a week of being off of them. My FEV1 dropped from 37% to 7% in just a year. I had my transplant in January 2007 when I was at 7 percent.

I hope that it doesn't come to transplant for you daughter and that the docs can figure out what it going on with her. Good luck with everything.

Transplantmommy · Sep 13, 2009

So sorry to hear of your daughters troubles. Has she been tested for Cepacia? That's about the only bacteria that I know of that causes a huge drop in FEV1 so quickly. The only time that I started dropping like that and not coming back up is when it was time for transplant. I kept getting infections and the antibiotics slightly worked but then I would be back on them after a week of being off of them. My FEV1 dropped from 37% to 7% in just a year. I had my transplant in January 2007 when I was at 7 percent.

I hope that it doesn't come to transplant for you daughter and that the docs can figure out what it going on with her. Good luck with everything.

Transplantmommy · Sep 13, 2009

So sorry to hear of your daughters troubles. Has she been tested for Cepacia? That's about the only bacteria that I know of that causes a huge drop in FEV1 so quickly. The only time that I started dropping like that and not coming back up is when it was time for transplant. I kept getting infections and the antibiotics slightly worked but then I would be back on them after a week of being off of them. My FEV1 dropped from 37% to 7% in just a year. I had my transplant in January 2007 when I was at 7 percent.

I hope that it doesn't come to transplant for you daughter and that the docs can figure out what it going on with her. Good luck with everything.

Transplantmommy · Sep 13, 2009

So sorry to hear of your daughters troubles. Has she been tested for Cepacia? That's about the only bacteria that I know of that causes a huge drop in FEV1 so quickly. The only time that I started dropping like that and not coming back up is when it was time for transplant. I kept getting infections and the antibiotics slightly worked but then I would be back on them after a week of being off of them. My FEV1 dropped from 37% to 7% in just a year. I had my transplant in January 2007 when I was at 7 percent.

I hope that it doesn't come to transplant for you daughter and that the docs can figure out what it going on with her. Good luck with everything.

Transplantmommy · Sep 13, 2009

So sorry to hear of your daughters troubles. Has she been tested for Cepacia? That's about the only bacteria that I know of that causes a huge drop in FEV1 so quickly. The only time that I started dropping like that and not coming back up is when it was time for transplant. I kept getting infections and the antibiotics slightly worked but then I would be back on them after a week of being off of them. My FEV1 dropped from 37% to 7% in just a year. I had my transplant in January 2007 when I was at 7 percent.
 
 I hope that it doesn't come to transplant for you daughter and that the docs can figure out what it going on with her. Good luck with everything.

coltsfan715 · Sep 13, 2009

I had a drop like that not as drastic as 20% in a month but an unexplained drop that meds couldn't seem to correct in the months before my transplant. I personally think I wasn't being treated for the bacteria that was causing my issues - but only came to that conclusion after my transplant. My transplant doctors took cultures from my old lungs and they ended up showing 2 bacteria that had never shown up on my prior cultures during hospital stays. 1 was S.maltophilia and the other was a form of myco just can't remember at this time.

I must say I commend your doc for taking the extra steps with the bronch to check for other bugs. Ya never know too if he cleaned out some of the mucus and blockages in her lungs that may help her get past some of this as well.

I hope that the final findings are not bad and that you guys are able to find something to treat her with effectively soon.

Lindsey

coltsfan715 · Sep 13, 2009

I had a drop like that not as drastic as 20% in a month but an unexplained drop that meds couldn't seem to correct in the months before my transplant. I personally think I wasn't being treated for the bacteria that was causing my issues - but only came to that conclusion after my transplant. My transplant doctors took cultures from my old lungs and they ended up showing 2 bacteria that had never shown up on my prior cultures during hospital stays. 1 was S.maltophilia and the other was a form of myco just can't remember at this time.

I must say I commend your doc for taking the extra steps with the bronch to check for other bugs. Ya never know too if he cleaned out some of the mucus and blockages in her lungs that may help her get past some of this as well.

I hope that the final findings are not bad and that you guys are able to find something to treat her with effectively soon.

Lindsey

coltsfan715 · Sep 13, 2009

I had a drop like that not as drastic as 20% in a month but an unexplained drop that meds couldn't seem to correct in the months before my transplant. I personally think I wasn't being treated for the bacteria that was causing my issues - but only came to that conclusion after my transplant. My transplant doctors took cultures from my old lungs and they ended up showing 2 bacteria that had never shown up on my prior cultures during hospital stays. 1 was S.maltophilia and the other was a form of myco just can't remember at this time.

I must say I commend your doc for taking the extra steps with the bronch to check for other bugs. Ya never know too if he cleaned out some of the mucus and blockages in her lungs that may help her get past some of this as well.

I hope that the final findings are not bad and that you guys are able to find something to treat her with effectively soon.

Lindsey

coltsfan715 · Sep 13, 2009

I had a drop like that not as drastic as 20% in a month but an unexplained drop that meds couldn't seem to correct in the months before my transplant. I personally think I wasn't being treated for the bacteria that was causing my issues - but only came to that conclusion after my transplant. My transplant doctors took cultures from my old lungs and they ended up showing 2 bacteria that had never shown up on my prior cultures during hospital stays. 1 was S.maltophilia and the other was a form of myco just can't remember at this time.

I must say I commend your doc for taking the extra steps with the bronch to check for other bugs. Ya never know too if he cleaned out some of the mucus and blockages in her lungs that may help her get past some of this as well.

I hope that the final findings are not bad and that you guys are able to find something to treat her with effectively soon.

Lindsey

coltsfan715 · Sep 13, 2009

I had a drop like that not as drastic as 20% in a month but an unexplained drop that meds couldn't seem to correct in the months before my transplant. I personally think I wasn't being treated for the bacteria that was causing my issues - but only came to that conclusion after my transplant. My transplant doctors took cultures from my old lungs and they ended up showing 2 bacteria that had never shown up on my prior cultures during hospital stays. 1 was S.maltophilia and the other was a form of myco just can't remember at this time.
 
 I must say I commend your doc for taking the extra steps with the bronch to check for other bugs. Ya never know too if he cleaned out some of the mucus and blockages in her lungs that may help her get past some of this as well.
 
 I hope that the final findings are not bad and that you guys are able to find something to treat her with effectively soon.
 
 Lindsey

CFreaky · Sep 13, 2009

Thank you both for your responses..this website is so helpful in that we don't feel so alone in all of this. We recently switched CF Clinics to Cedars Sinai in Los Angeles, they only have a few other patients so there's not a lot of chatting in the halls with the other parents like at Children's Hospital LA. So far, she's still the same today and now she's getting too exhausted to cough up any junk..looks a little sicker than normal, of course. Will keep you posted. Also, she signed on to this website and is interacting with other teens and preteens..loves the identification she's found. Her user name is "CFreaky" - thanks again.

CFreaky · Sep 13, 2009

Thank you both for your responses..this website is so helpful in that we don't feel so alone in all of this. We recently switched CF Clinics to Cedars Sinai in Los Angeles, they only have a few other patients so there's not a lot of chatting in the halls with the other parents like at Children's Hospital LA. So far, she's still the same today and now she's getting too exhausted to cough up any junk..looks a little sicker than normal, of course. Will keep you posted. Also, she signed on to this website and is interacting with other teens and preteens..loves the identification she's found. Her user name is "CFreaky" - thanks again.

CFreaky · Sep 13, 2009

Thank you both for your responses..this website is so helpful in that we don't feel so alone in all of this. We recently switched CF Clinics to Cedars Sinai in Los Angeles, they only have a few other patients so there's not a lot of chatting in the halls with the other parents like at Children's Hospital LA. So far, she's still the same today and now she's getting too exhausted to cough up any junk..looks a little sicker than normal, of course. Will keep you posted. Also, she signed on to this website and is interacting with other teens and preteens..loves the identification she's found. Her user name is "CFreaky" - thanks again.

CFreaky · Sep 13, 2009

Thank you both for your responses..this website is so helpful in that we don't feel so alone in all of this. We recently switched CF Clinics to Cedars Sinai in Los Angeles, they only have a few other patients so there's not a lot of chatting in the halls with the other parents like at Children's Hospital LA. So far, she's still the same today and now she's getting too exhausted to cough up any junk..looks a little sicker than normal, of course. Will keep you posted. Also, she signed on to this website and is interacting with other teens and preteens..loves the identification she's found. Her user name is "CFreaky" - thanks again.

CFreaky · Sep 13, 2009

Thank you both for your responses..this website is so helpful in that we don't feel so alone in all of this. We recently switched CF Clinics to Cedars Sinai in Los Angeles, they only have a few other patients so there's not a lot of chatting in the halls with the other parents like at Children's Hospital LA. So far, she's still the same today and now she's getting too exhausted to cough up any junk..looks a little sicker than normal, of course. Will keep you posted. Also, she signed on to this website and is interacting with other teens and preteens..loves the identification she's found. Her user name is "CFreaky" - thanks again.

Mysterious 20% drop in FEV1 over the last month

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