Allergic Bronchopulmonary aspergillosis (sp?) ABPA

B

brewz2

Guest
Hi Everyone...

I was curious if anyone out there also has ABPA in addition to the CF. My daughter, who is six, has asthma along with CF. Her IGE levels seem to be going up, right now they're 752. One doctor had mentioned ABPA, but the doctor we saw two days ago said he would do another IGE test on her in six months and see what they are then. He thinks that if it reaches 1,000, that he would go ahead and do a CAT scan on her. They did do an allergy test on her, and she's allergic to cats, molds and dust mites. Does it sound normal to wait until it reaches 1,000? I'm somewhat confused b/c we had one doctor (who actually was a resident and is getting ready to leave) that was really concerned and trying to pinpoint it, and then we have another doctor, who is more like the head doctor with a lot more experience, and he's not as concerned...any info on this would be greatly appreciated...

Tracey, mom to Sydney (6) and Seth (2) both with CF DF508
 
B

brewz2

Guest
Hi Everyone...

I was curious if anyone out there also has ABPA in addition to the CF. My daughter, who is six, has asthma along with CF. Her IGE levels seem to be going up, right now they're 752. One doctor had mentioned ABPA, but the doctor we saw two days ago said he would do another IGE test on her in six months and see what they are then. He thinks that if it reaches 1,000, that he would go ahead and do a CAT scan on her. They did do an allergy test on her, and she's allergic to cats, molds and dust mites. Does it sound normal to wait until it reaches 1,000? I'm somewhat confused b/c we had one doctor (who actually was a resident and is getting ready to leave) that was really concerned and trying to pinpoint it, and then we have another doctor, who is more like the head doctor with a lot more experience, and he's not as concerned...any info on this would be greatly appreciated...

Tracey, mom to Sydney (6) and Seth (2) both with CF DF508
 
B

brewz2

Guest
Hi Everyone...

I was curious if anyone out there also has ABPA in addition to the CF. My daughter, who is six, has asthma along with CF. Her IGE levels seem to be going up, right now they're 752. One doctor had mentioned ABPA, but the doctor we saw two days ago said he would do another IGE test on her in six months and see what they are then. He thinks that if it reaches 1,000, that he would go ahead and do a CAT scan on her. They did do an allergy test on her, and she's allergic to cats, molds and dust mites. Does it sound normal to wait until it reaches 1,000? I'm somewhat confused b/c we had one doctor (who actually was a resident and is getting ready to leave) that was really concerned and trying to pinpoint it, and then we have another doctor, who is more like the head doctor with a lot more experience, and he's not as concerned...any info on this would be greatly appreciated...

Tracey, mom to Sydney (6) and Seth (2) both with CF DF508
 
B

brewz2

Guest
Hi Everyone...

I was curious if anyone out there also has ABPA in addition to the CF. My daughter, who is six, has asthma along with CF. Her IGE levels seem to be going up, right now they're 752. One doctor had mentioned ABPA, but the doctor we saw two days ago said he would do another IGE test on her in six months and see what they are then. He thinks that if it reaches 1,000, that he would go ahead and do a CAT scan on her. They did do an allergy test on her, and she's allergic to cats, molds and dust mites. Does it sound normal to wait until it reaches 1,000? I'm somewhat confused b/c we had one doctor (who actually was a resident and is getting ready to leave) that was really concerned and trying to pinpoint it, and then we have another doctor, who is more like the head doctor with a lot more experience, and he's not as concerned...any info on this would be greatly appreciated...

Tracey, mom to Sydney (6) and Seth (2) both with CF DF508
 
B

brewz2

Guest
Hi Everyone...

I was curious if anyone out there also has ABPA in addition to the CF. My daughter, who is six, has asthma along with CF. Her IGE levels seem to be going up, right now they're 752. One doctor had mentioned ABPA, but the doctor we saw two days ago said he would do another IGE test on her in six months and see what they are then. He thinks that if it reaches 1,000, that he would go ahead and do a CAT scan on her. They did do an allergy test on her, and she's allergic to cats, molds and dust mites. Does it sound normal to wait until it reaches 1,000? I'm somewhat confused b/c we had one doctor (who actually was a resident and is getting ready to leave) that was really concerned and trying to pinpoint it, and then we have another doctor, who is more like the head doctor with a lot more experience, and he's not as concerned...any info on this would be greatly appreciated...

Tracey, mom to Sydney (6) and Seth (2) both with CF DF508
 
P

pjspiegle

New member
My son has ABPA, it is aspergillus, has she cultured aspergillus? We have been trying to get rid of it for over 2 years now. It is a very, very common mold spore and is hard to get rid of. My friends daughter also cultured for aspergillus but have not re-grown it in over a year now. If she has aspergillus she will need a spornox, Itraconazole, and probably a month to 3 months of predisone. Let me know if you have any specific questions that I may be able to answer, but I would start by asking if she has cultrued aspergillus or not.
 
P

pjspiegle

New member
My son has ABPA, it is aspergillus, has she cultured aspergillus? We have been trying to get rid of it for over 2 years now. It is a very, very common mold spore and is hard to get rid of. My friends daughter also cultured for aspergillus but have not re-grown it in over a year now. If she has aspergillus she will need a spornox, Itraconazole, and probably a month to 3 months of predisone. Let me know if you have any specific questions that I may be able to answer, but I would start by asking if she has cultrued aspergillus or not.
 
P

pjspiegle

New member
My son has ABPA, it is aspergillus, has she cultured aspergillus? We have been trying to get rid of it for over 2 years now. It is a very, very common mold spore and is hard to get rid of. My friends daughter also cultured for aspergillus but have not re-grown it in over a year now. If she has aspergillus she will need a spornox, Itraconazole, and probably a month to 3 months of predisone. Let me know if you have any specific questions that I may be able to answer, but I would start by asking if she has cultrued aspergillus or not.
 
P

pjspiegle

New member
My son has ABPA, it is aspergillus, has she cultured aspergillus? We have been trying to get rid of it for over 2 years now. It is a very, very common mold spore and is hard to get rid of. My friends daughter also cultured for aspergillus but have not re-grown it in over a year now. If she has aspergillus she will need a spornox, Itraconazole, and probably a month to 3 months of predisone. Let me know if you have any specific questions that I may be able to answer, but I would start by asking if she has cultrued aspergillus or not.
 
P

pjspiegle

New member
My son has ABPA, it is aspergillus, has she cultured aspergillus? We have been trying to get rid of it for over 2 years now. It is a very, very common mold spore and is hard to get rid of. My friends daughter also cultured for aspergillus but have not re-grown it in over a year now. If she has aspergillus she will need a spornox, Itraconazole, and probably a month to 3 months of predisone. Let me know if you have any specific questions that I may be able to answer, but I would start by asking if she has cultrued aspergillus or not.
 
B

brewz2

Guest
No, she hasn't cultured it. I just know that they've done an IGG test and the IGE test...the igg was ok, but the ige was high. When they talk to me about it, it gets so confusing. My thinking is that if a cat scan or bronchoscopy can rule out abpa, why not just do them to know for sure.

They told me that there are few different criterias to meet before actually diagnosing it, and I guess she falls into a couple of them b/c she has had a little trouble controling her asthma, she is allergic to mold, and her IGE levels were high. how did they diagnose it in your son? was it just from the sputum culture?
 
B

brewz2

Guest
No, she hasn't cultured it. I just know that they've done an IGG test and the IGE test...the igg was ok, but the ige was high. When they talk to me about it, it gets so confusing. My thinking is that if a cat scan or bronchoscopy can rule out abpa, why not just do them to know for sure.

They told me that there are few different criterias to meet before actually diagnosing it, and I guess she falls into a couple of them b/c she has had a little trouble controling her asthma, she is allergic to mold, and her IGE levels were high. how did they diagnose it in your son? was it just from the sputum culture?
 
B

brewz2

Guest
No, she hasn't cultured it. I just know that they've done an IGG test and the IGE test...the igg was ok, but the ige was high. When they talk to me about it, it gets so confusing. My thinking is that if a cat scan or bronchoscopy can rule out abpa, why not just do them to know for sure.

They told me that there are few different criterias to meet before actually diagnosing it, and I guess she falls into a couple of them b/c she has had a little trouble controling her asthma, she is allergic to mold, and her IGE levels were high. how did they diagnose it in your son? was it just from the sputum culture?
 
B

brewz2

Guest
No, she hasn't cultured it. I just know that they've done an IGG test and the IGE test...the igg was ok, but the ige was high. When they talk to me about it, it gets so confusing. My thinking is that if a cat scan or bronchoscopy can rule out abpa, why not just do them to know for sure.

They told me that there are few different criterias to meet before actually diagnosing it, and I guess she falls into a couple of them b/c she has had a little trouble controling her asthma, she is allergic to mold, and her IGE levels were high. how did they diagnose it in your son? was it just from the sputum culture?
 
B

brewz2

Guest
No, she hasn't cultured it. I just know that they've done an IGG test and the IGE test...the igg was ok, but the ige was high. When they talk to me about it, it gets so confusing. My thinking is that if a cat scan or bronchoscopy can rule out abpa, why not just do them to know for sure.

They told me that there are few different criterias to meet before actually diagnosing it, and I guess she falls into a couple of them b/c she has had a little trouble controling her asthma, she is allergic to mold, and her IGE levels were high. how did they diagnose it in your son? was it just from the sputum culture?
 
P

pjspiegle

New member
He was diagnosed from a sputum culture and his symptoms, asthma like ones and his IGE levels. I am pretty sure that they cannot rule out ABPA with a scan, if so, they would say he doesn't have it because his scan is good. I think I would push for a induced sputum culture before a scan, plus the sputum is less dangerous than the scan. I know these kids get scans all the time but we need to remember that we increase their chances of lung cancer by about 10% for every scan that is done, they are necessary, are simple enough, but not always the best choice, besides the fact that I am pretty sure a scan is not going to help with a diagnosis, at least if it is ABPA. Plus, this is not really a big deal, at least it isn't one of the "big ones" and can be treated, even if the treatment is long.

I always say to follow your instincts and listen to your gut! For the ABPA, I would ask if she has ever grown it and then ask if they could do an induced sputum and if you still don't get answers perhaps a Bronch with really good cultures would be most helpful. The more experienced doc maybe avoiding the scan knowing that it won't give the answers that are being looked for, just a thought.

By the way, I just remembered there being some kind of skin test that can be done to diagnose it as well. I am not sure because he grew it in cultures we did not need to do the skin test. You might ask about it as well. I am not sure what all it entails for sure either.
 
P

pjspiegle

New member
He was diagnosed from a sputum culture and his symptoms, asthma like ones and his IGE levels. I am pretty sure that they cannot rule out ABPA with a scan, if so, they would say he doesn't have it because his scan is good. I think I would push for a induced sputum culture before a scan, plus the sputum is less dangerous than the scan. I know these kids get scans all the time but we need to remember that we increase their chances of lung cancer by about 10% for every scan that is done, they are necessary, are simple enough, but not always the best choice, besides the fact that I am pretty sure a scan is not going to help with a diagnosis, at least if it is ABPA. Plus, this is not really a big deal, at least it isn't one of the "big ones" and can be treated, even if the treatment is long.

I always say to follow your instincts and listen to your gut! For the ABPA, I would ask if she has ever grown it and then ask if they could do an induced sputum and if you still don't get answers perhaps a Bronch with really good cultures would be most helpful. The more experienced doc maybe avoiding the scan knowing that it won't give the answers that are being looked for, just a thought.

By the way, I just remembered there being some kind of skin test that can be done to diagnose it as well. I am not sure because he grew it in cultures we did not need to do the skin test. You might ask about it as well. I am not sure what all it entails for sure either.
 
P

pjspiegle

New member
He was diagnosed from a sputum culture and his symptoms, asthma like ones and his IGE levels. I am pretty sure that they cannot rule out ABPA with a scan, if so, they would say he doesn't have it because his scan is good. I think I would push for a induced sputum culture before a scan, plus the sputum is less dangerous than the scan. I know these kids get scans all the time but we need to remember that we increase their chances of lung cancer by about 10% for every scan that is done, they are necessary, are simple enough, but not always the best choice, besides the fact that I am pretty sure a scan is not going to help with a diagnosis, at least if it is ABPA. Plus, this is not really a big deal, at least it isn't one of the "big ones" and can be treated, even if the treatment is long.

I always say to follow your instincts and listen to your gut! For the ABPA, I would ask if she has ever grown it and then ask if they could do an induced sputum and if you still don't get answers perhaps a Bronch with really good cultures would be most helpful. The more experienced doc maybe avoiding the scan knowing that it won't give the answers that are being looked for, just a thought.

By the way, I just remembered there being some kind of skin test that can be done to diagnose it as well. I am not sure because he grew it in cultures we did not need to do the skin test. You might ask about it as well. I am not sure what all it entails for sure either.
 
P

pjspiegle

New member
He was diagnosed from a sputum culture and his symptoms, asthma like ones and his IGE levels. I am pretty sure that they cannot rule out ABPA with a scan, if so, they would say he doesn't have it because his scan is good. I think I would push for a induced sputum culture before a scan, plus the sputum is less dangerous than the scan. I know these kids get scans all the time but we need to remember that we increase their chances of lung cancer by about 10% for every scan that is done, they are necessary, are simple enough, but not always the best choice, besides the fact that I am pretty sure a scan is not going to help with a diagnosis, at least if it is ABPA. Plus, this is not really a big deal, at least it isn't one of the "big ones" and can be treated, even if the treatment is long.

I always say to follow your instincts and listen to your gut! For the ABPA, I would ask if she has ever grown it and then ask if they could do an induced sputum and if you still don't get answers perhaps a Bronch with really good cultures would be most helpful. The more experienced doc maybe avoiding the scan knowing that it won't give the answers that are being looked for, just a thought.

By the way, I just remembered there being some kind of skin test that can be done to diagnose it as well. I am not sure because he grew it in cultures we did not need to do the skin test. You might ask about it as well. I am not sure what all it entails for sure either.
 
P

pjspiegle

New member
He was diagnosed from a sputum culture and his symptoms, asthma like ones and his IGE levels. I am pretty sure that they cannot rule out ABPA with a scan, if so, they would say he doesn't have it because his scan is good. I think I would push for a induced sputum culture before a scan, plus the sputum is less dangerous than the scan. I know these kids get scans all the time but we need to remember that we increase their chances of lung cancer by about 10% for every scan that is done, they are necessary, are simple enough, but not always the best choice, besides the fact that I am pretty sure a scan is not going to help with a diagnosis, at least if it is ABPA. Plus, this is not really a big deal, at least it isn't one of the "big ones" and can be treated, even if the treatment is long.

I always say to follow your instincts and listen to your gut! For the ABPA, I would ask if she has ever grown it and then ask if they could do an induced sputum and if you still don't get answers perhaps a Bronch with really good cultures would be most helpful. The more experienced doc maybe avoiding the scan knowing that it won't give the answers that are being looked for, just a thought.

By the way, I just remembered there being some kind of skin test that can be done to diagnose it as well. I am not sure because he grew it in cultures we did not need to do the skin test. You might ask about it as well. I am not sure what all it entails for sure either.
 
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