Grrr!, good for a cfer reminds me of the time the CF doctor at the local clinic brushed aside my concerns about ds's cough when he was 3 months old -- told me he has CF, that's what they do. His primary CF doctor in the City was furious -- ds had Bronchitis. Go with your gut. Need to be proactive with your son's care.
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Unidentified Bacteria
- Thread starter pjspiegle
- Start date
Grrr!, good for a cfer reminds me of the time the CF doctor at the local clinic brushed aside my concerns about ds's cough when he was 3 months old -- told me he has CF, that's what they do. His primary CF doctor in the City was furious -- ds had Bronchitis. Go with your gut. Need to be proactive with your son's care.
We have done a bronch and are waiting for some results from National Jewish & Boulder labs. The cultures the clinic ran came back with nothing. We did find out that his left lower lobe is where all the issues are which is what was expected. The problem is that when they did the bronch he had already been on the IV's for 12 days and since we already suspect that the IV's are just working enough to cover stuff up, nothing may grow at any of the labs. Thanks for responding! It helps to see others understanding the frustrations.
We have done a bronch and are waiting for some results from National Jewish & Boulder labs. The cultures the clinic ran came back with nothing. We did find out that his left lower lobe is where all the issues are which is what was expected. The problem is that when they did the bronch he had already been on the IV's for 12 days and since we already suspect that the IV's are just working enough to cover stuff up, nothing may grow at any of the labs. Thanks for responding! It helps to see others understanding the frustrations.
We have done a bronch and are waiting for some results from National Jewish & Boulder labs. The cultures the clinic ran came back with nothing. We did find out that his left lower lobe is where all the issues are which is what was expected. The problem is that when they did the bronch he had already been on the IV's for 12 days and since we already suspect that the IV's are just working enough to cover stuff up, nothing may grow at any of the labs. Thanks for responding! It helps to see others understanding the frustrations.
We have done a bronch and are waiting for some results from National Jewish & Boulder labs. The cultures the clinic ran came back with nothing. We did find out that his left lower lobe is where all the issues are which is what was expected. The problem is that when they did the bronch he had already been on the IV's for 12 days and since we already suspect that the IV's are just working enough to cover stuff up, nothing may grow at any of the labs. Thanks for responding! It helps to see others understanding the frustrations.
We have done a bronch and are waiting for some results from National Jewish & Boulder labs. The cultures the clinic ran came back with nothing. We did find out that his left lower lobe is where all the issues are which is what was expected. The problem is that when they did the bronch he had already been on the IV's for 12 days and since we already suspect that the IV's are just working enough to cover stuff up, nothing may grow at any of the labs. Thanks for responding! It helps to see others understanding the frustrations.
We have done a bronch and are waiting for some results from National Jewish & Boulder labs. The cultures the clinic ran came back with nothing. We did find out that his left lower lobe is where all the issues are which is what was expected. The problem is that when they did the bronch he had already been on the IV's for 12 days and since we already suspect that the IV's are just working enough to cover stuff up, nothing may grow at any of the labs. Thanks for responding! It helps to see others understanding the frustrations.
Yes we do see a doc in a CF center, actually, he is suppose to be one of the very best CF docs there is. I did find out that he is going out of town to find out about some new inhaled meds that are suppose to be safer and promising. I am hoping that he is just delaying things until he can get more info on some new meds and then will have a new treatment plan. I am really considering a second opinion, I just do not know where to get one. We are in Colorado so there are not any other centers near by that I know of.
Yes we do see a doc in a CF center, actually, he is suppose to be one of the very best CF docs there is. I did find out that he is going out of town to find out about some new inhaled meds that are suppose to be safer and promising. I am hoping that he is just delaying things until he can get more info on some new meds and then will have a new treatment plan. I am really considering a second opinion, I just do not know where to get one. We are in Colorado so there are not any other centers near by that I know of.
Yes we do see a doc in a CF center, actually, he is suppose to be one of the very best CF docs there is. I did find out that he is going out of town to find out about some new inhaled meds that are suppose to be safer and promising. I am hoping that he is just delaying things until he can get more info on some new meds and then will have a new treatment plan. I am really considering a second opinion, I just do not know where to get one. We are in Colorado so there are not any other centers near by that I know of.
Yes we do see a doc in a CF center, actually, he is suppose to be one of the very best CF docs there is. I did find out that he is going out of town to find out about some new inhaled meds that are suppose to be safer and promising. I am hoping that he is just delaying things until he can get more info on some new meds and then will have a new treatment plan. I am really considering a second opinion, I just do not know where to get one. We are in Colorado so there are not any other centers near by that I know of.
Yes we do see a doc in a CF center, actually, he is suppose to be one of the very best CF docs there is. I did find out that he is going out of town to find out about some new inhaled meds that are suppose to be safer and promising. I am hoping that he is just delaying things until he can get more info on some new meds and then will have a new treatment plan. I am really considering a second opinion, I just do not know where to get one. We are in Colorado so there are not any other centers near by that I know of.
Yes we do see a doc in a CF center, actually, he is suppose to be one of the very best CF docs there is. I did find out that he is going out of town to find out about some new inhaled meds that are suppose to be safer and promising. I am hoping that he is just delaying things until he can get more info on some new meds and then will have a new treatment plan. I am really considering a second opinion, I just do not know where to get one. We are in Colorado so there are not any other centers near by that I know of.
Yes we have done IGE levels and they are very normal and we are treating the aspergillis with itraconazole.
Thanks to you and all of those who are encouraging me to follow my instincts. It is so easy to fall into the trap of second guessing yourself when you know that something isn't right but everyone else is trying to convience you that it is. It really helps just knowing that we are not alone, that there are other people who know and understand what we are talking about and where we are coming from. I am glad I finally found this site, it is a real help!
Patty
Thanks to you and all of those who are encouraging me to follow my instincts. It is so easy to fall into the trap of second guessing yourself when you know that something isn't right but everyone else is trying to convience you that it is. It really helps just knowing that we are not alone, that there are other people who know and understand what we are talking about and where we are coming from. I am glad I finally found this site, it is a real help!
Patty
Yes we have done IGE levels and they are very normal and we are treating the aspergillis with itraconazole.
Thanks to you and all of those who are encouraging me to follow my instincts. It is so easy to fall into the trap of second guessing yourself when you know that something isn't right but everyone else is trying to convience you that it is. It really helps just knowing that we are not alone, that there are other people who know and understand what we are talking about and where we are coming from. I am glad I finally found this site, it is a real help!
Patty
Thanks to you and all of those who are encouraging me to follow my instincts. It is so easy to fall into the trap of second guessing yourself when you know that something isn't right but everyone else is trying to convience you that it is. It really helps just knowing that we are not alone, that there are other people who know and understand what we are talking about and where we are coming from. I am glad I finally found this site, it is a real help!
Patty
Yes we have done IGE levels and they are very normal and we are treating the aspergillis with itraconazole.
Thanks to you and all of those who are encouraging me to follow my instincts. It is so easy to fall into the trap of second guessing yourself when you know that something isn't right but everyone else is trying to convience you that it is. It really helps just knowing that we are not alone, that there are other people who know and understand what we are talking about and where we are coming from. I am glad I finally found this site, it is a real help!
Patty
Thanks to you and all of those who are encouraging me to follow my instincts. It is so easy to fall into the trap of second guessing yourself when you know that something isn't right but everyone else is trying to convience you that it is. It really helps just knowing that we are not alone, that there are other people who know and understand what we are talking about and where we are coming from. I am glad I finally found this site, it is a real help!
Patty
Yes we have done IGE levels and they are very normal and we are treating the aspergillis with itraconazole.
Thanks to you and all of those who are encouraging me to follow my instincts. It is so easy to fall into the trap of second guessing yourself when you know that something isn't right but everyone else is trying to convience you that it is. It really helps just knowing that we are not alone, that there are other people who know and understand what we are talking about and where we are coming from. I am glad I finally found this site, it is a real help!
Patty
Thanks to you and all of those who are encouraging me to follow my instincts. It is so easy to fall into the trap of second guessing yourself when you know that something isn't right but everyone else is trying to convience you that it is. It really helps just knowing that we are not alone, that there are other people who know and understand what we are talking about and where we are coming from. I am glad I finally found this site, it is a real help!
Patty
Yes we have done IGE levels and they are very normal and we are treating the aspergillis with itraconazole.
Thanks to you and all of those who are encouraging me to follow my instincts. It is so easy to fall into the trap of second guessing yourself when you know that something isn't right but everyone else is trying to convience you that it is. It really helps just knowing that we are not alone, that there are other people who know and understand what we are talking about and where we are coming from. I am glad I finally found this site, it is a real help!
Patty
Thanks to you and all of those who are encouraging me to follow my instincts. It is so easy to fall into the trap of second guessing yourself when you know that something isn't right but everyone else is trying to convience you that it is. It really helps just knowing that we are not alone, that there are other people who know and understand what we are talking about and where we are coming from. I am glad I finally found this site, it is a real help!
Patty
Yes we have done IGE levels and they are very normal and we are treating the aspergillis with itraconazole.
Thanks to you and all of those who are encouraging me to follow my instincts. It is so easy to fall into the trap of second guessing yourself when you know that something isn't right but everyone else is trying to convience you that it is. It really helps just knowing that we are not alone, that there are other people who know and understand what we are talking about and where we are coming from. I am glad I finally found this site, it is a real help!
Patty
Thanks to you and all of those who are encouraging me to follow my instincts. It is so easy to fall into the trap of second guessing yourself when you know that something isn't right but everyone else is trying to convience you that it is. It really helps just knowing that we are not alone, that there are other people who know and understand what we are talking about and where we are coming from. I am glad I finally found this site, it is a real help!
Patty