T
TonyaH
Guest
<BR>I do apologize...after reading your post a second time I realized you have a daughter, not a son. Sorry!!
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WHAT WOULD YOU DO~help!
- Thread starter Mom2Brinly
- Start date
Mom2Brinly
New member
YOU GUYS ARE GENIUS!! I just had a light bulb moment- We DID have her IgE mold profile tested I just looked it up. She did test class IV 4.25 very high for aspergillius fumigatus. We did not have this test thru our cf clinic and i questioned it with the docs but i do not think it made a real connection until we started "treating the PS cough"(yes i hate spelling the Psuedonomas word)and it makes perfect sense that is why the cough is not going away! Gosh it has been going on for a year now- Do you know the treatment regime does it require the hospitalization? I will PM you TonyaH...thank you so much!
Blythe
Blythe
Mom2Brinly
New member
YOU GUYS ARE GENIUS!! I just had a light bulb moment- We DID have her IgE mold profile tested I just looked it up. She did test class IV 4.25 very high for aspergillius fumigatus. We did not have this test thru our cf clinic and i questioned it with the docs but i do not think it made a real connection until we started "treating the PS cough"(yes i hate spelling the Psuedonomas word)and it makes perfect sense that is why the cough is not going away! Gosh it has been going on for a year now- Do you know the treatment regime does it require the hospitalization? I will PM you TonyaH...thank you so much!
Blythe
Blythe
Mom2Brinly
New member
YOU GUYS ARE GENIUS!! I just had a light bulb moment- We DID have her IgE mold profile tested I just looked it up. She did test class IV 4.25 very high for aspergillius fumigatus. We did not have this test thru our cf clinic and i questioned it with the docs but i do not think it made a real connection until we started "treating the PS cough"(yes i hate spelling the Psuedonomas word)and it makes perfect sense that is why the cough is not going away! Gosh it has been going on for a year now- Do you know the treatment regime does it require the hospitalization? I will PM you TonyaH...thank you so much!
<br />Blythe
<br />Blythe
T
TonyaH
Guest
Andrew has always been treated with prednisone. As with any allergy, the only way to treat it is to either control the symptoms or remove the allergen.
Aspergillus is a fungus that can be treated with an anti-fungal medication. However, Andrew's doctor has not gone this route. They can be pretty hard on the liver. She is keeping them 'in her back pocket' for future use. She treats with prednisone, which reduces inflammation. We are taking the 'control the syptoms' approach.
Actually, Andrew has been off of prednisone for about 6 months since he started culturing mycobacterium abcessus. Apparently there is a link to long term prednisone use predisposing you to mycobacterium infections. So, we are off prednisone since the mycobacterium is more of an issue for him right now. However, aspergillus still shows up on every culture he has.
I will forwarn you..prednisone does a number on mood and behavior. Steriods really mess with you. If your doctor suggests this, be patient with your daughter. Oh, and another heads up..give the dose in the morning. Prednisone can cause night sweats so taking it in the morning instead of right before bed seems to help a bit.
Definitely talk to your doctor and see what he/she thinks. Treatment should not involve hospitilization, and it might be worth it to see if you notice a difference. If inflammation is the problem you should see some kind of improvement pretty quickly.
Good luck!
Aspergillus is a fungus that can be treated with an anti-fungal medication. However, Andrew's doctor has not gone this route. They can be pretty hard on the liver. She is keeping them 'in her back pocket' for future use. She treats with prednisone, which reduces inflammation. We are taking the 'control the syptoms' approach.
Actually, Andrew has been off of prednisone for about 6 months since he started culturing mycobacterium abcessus. Apparently there is a link to long term prednisone use predisposing you to mycobacterium infections. So, we are off prednisone since the mycobacterium is more of an issue for him right now. However, aspergillus still shows up on every culture he has.
I will forwarn you..prednisone does a number on mood and behavior. Steriods really mess with you. If your doctor suggests this, be patient with your daughter. Oh, and another heads up..give the dose in the morning. Prednisone can cause night sweats so taking it in the morning instead of right before bed seems to help a bit.
Definitely talk to your doctor and see what he/she thinks. Treatment should not involve hospitilization, and it might be worth it to see if you notice a difference. If inflammation is the problem you should see some kind of improvement pretty quickly.
Good luck!
T
TonyaH
Guest
Andrew has always been treated with prednisone. As with any allergy, the only way to treat it is to either control the symptoms or remove the allergen.
Aspergillus is a fungus that can be treated with an anti-fungal medication. However, Andrew's doctor has not gone this route. They can be pretty hard on the liver. She is keeping them 'in her back pocket' for future use. She treats with prednisone, which reduces inflammation. We are taking the 'control the syptoms' approach.
Actually, Andrew has been off of prednisone for about 6 months since he started culturing mycobacterium abcessus. Apparently there is a link to long term prednisone use predisposing you to mycobacterium infections. So, we are off prednisone since the mycobacterium is more of an issue for him right now. However, aspergillus still shows up on every culture he has.
I will forwarn you..prednisone does a number on mood and behavior. Steriods really mess with you. If your doctor suggests this, be patient with your daughter. Oh, and another heads up..give the dose in the morning. Prednisone can cause night sweats so taking it in the morning instead of right before bed seems to help a bit.
Definitely talk to your doctor and see what he/she thinks. Treatment should not involve hospitilization, and it might be worth it to see if you notice a difference. If inflammation is the problem you should see some kind of improvement pretty quickly.
Good luck!
Aspergillus is a fungus that can be treated with an anti-fungal medication. However, Andrew's doctor has not gone this route. They can be pretty hard on the liver. She is keeping them 'in her back pocket' for future use. She treats with prednisone, which reduces inflammation. We are taking the 'control the syptoms' approach.
Actually, Andrew has been off of prednisone for about 6 months since he started culturing mycobacterium abcessus. Apparently there is a link to long term prednisone use predisposing you to mycobacterium infections. So, we are off prednisone since the mycobacterium is more of an issue for him right now. However, aspergillus still shows up on every culture he has.
I will forwarn you..prednisone does a number on mood and behavior. Steriods really mess with you. If your doctor suggests this, be patient with your daughter. Oh, and another heads up..give the dose in the morning. Prednisone can cause night sweats so taking it in the morning instead of right before bed seems to help a bit.
Definitely talk to your doctor and see what he/she thinks. Treatment should not involve hospitilization, and it might be worth it to see if you notice a difference. If inflammation is the problem you should see some kind of improvement pretty quickly.
Good luck!
T
TonyaH
Guest
Andrew has always been treated with prednisone. As with any allergy, the only way to treat it is to either control the symptoms or remove the allergen.
<br />
<br />Aspergillus is a fungus that can be treated with an anti-fungal medication. However, Andrew's doctor has not gone this route. They can be pretty hard on the liver. She is keeping them 'in her back pocket' for future use. She treats with prednisone, which reduces inflammation. We are taking the 'control the syptoms' approach.
<br />
<br />Actually, Andrew has been off of prednisone for about 6 months since he started culturing mycobacterium abcessus. Apparently there is a link to long term prednisone use predisposing you to mycobacterium infections. So, we are off prednisone since the mycobacterium is more of an issue for him right now. However, aspergillus still shows up on every culture he has.
<br />
<br />I will forwarn you..prednisone does a number on mood and behavior. Steriods really mess with you. If your doctor suggests this, be patient with your daughter. Oh, and another heads up..give the dose in the morning. Prednisone can cause night sweats so taking it in the morning instead of right before bed seems to help a bit.
<br />
<br />Definitely talk to your doctor and see what he/she thinks. Treatment should not involve hospitilization, and it might be worth it to see if you notice a difference. If inflammation is the problem you should see some kind of improvement pretty quickly.
<br />
<br />Good luck!
<br />
<br />Aspergillus is a fungus that can be treated with an anti-fungal medication. However, Andrew's doctor has not gone this route. They can be pretty hard on the liver. She is keeping them 'in her back pocket' for future use. She treats with prednisone, which reduces inflammation. We are taking the 'control the syptoms' approach.
<br />
<br />Actually, Andrew has been off of prednisone for about 6 months since he started culturing mycobacterium abcessus. Apparently there is a link to long term prednisone use predisposing you to mycobacterium infections. So, we are off prednisone since the mycobacterium is more of an issue for him right now. However, aspergillus still shows up on every culture he has.
<br />
<br />I will forwarn you..prednisone does a number on mood and behavior. Steriods really mess with you. If your doctor suggests this, be patient with your daughter. Oh, and another heads up..give the dose in the morning. Prednisone can cause night sweats so taking it in the morning instead of right before bed seems to help a bit.
<br />
<br />Definitely talk to your doctor and see what he/she thinks. Treatment should not involve hospitilization, and it might be worth it to see if you notice a difference. If inflammation is the problem you should see some kind of improvement pretty quickly.
<br />
<br />Good luck!
Aspergillous isn't uncommon to see in a CF patent's lungs. As long as it doesn't colonize nothing to worry about. The Pseudomonas won't let it colonize. As for keeping her at home more packing her up into the hospital that's a personal call, as a kid and even an adult it takes me 6-8 weeks to get over anything in my lungs. Keep in mind I would only consider a hospital if I was unable to care for myself outside of it. Best thing I can tell you to help keep this along is keep up with the extra RT work provided its tolerated well. Till you see a marked recovery, this could also be the start of the baseline cough that most all CF patients have. You may also want to speak to your doctors about a potential antihistamine, idea here would be slow the body's mucuse production for a while. May help with emptying out the lungs if they don't fill quite so fast. A personal note on Pseudomonas, I ALWAYS get worse befor I get better on antibiotics with a Pseudomonas infection going. Seems like the antibiotics break it up and then I end up coughing up a bucket or two in as many days then I'm on the road to "recovory", still seems to take the 6-8 weeks tho to really clear things up.
Aspergillous isn't uncommon to see in a CF patent's lungs. As long as it doesn't colonize nothing to worry about. The Pseudomonas won't let it colonize. As for keeping her at home more packing her up into the hospital that's a personal call, as a kid and even an adult it takes me 6-8 weeks to get over anything in my lungs. Keep in mind I would only consider a hospital if I was unable to care for myself outside of it. Best thing I can tell you to help keep this along is keep up with the extra RT work provided its tolerated well. Till you see a marked recovery, this could also be the start of the baseline cough that most all CF patients have. You may also want to speak to your doctors about a potential antihistamine, idea here would be slow the body's mucuse production for a while. May help with emptying out the lungs if they don't fill quite so fast. A personal note on Pseudomonas, I ALWAYS get worse befor I get better on antibiotics with a Pseudomonas infection going. Seems like the antibiotics break it up and then I end up coughing up a bucket or two in as many days then I'm on the road to "recovory", still seems to take the 6-8 weeks tho to really clear things up.
Aspergillous isn't uncommon to see in a CF patent's lungs. As long as it doesn't colonize nothing to worry about. The Pseudomonas won't let it colonize. As for keeping her at home more packing her up into the hospital that's a personal call, as a kid and even an adult it takes me 6-8 weeks to get over anything in my lungs. Keep in mind I would only consider a hospital if I was unable to care for myself outside of it. Best thing I can tell you to help keep this along is keep up with the extra RT work provided its tolerated well. Till you see a marked recovery, this could also be the start of the baseline cough that most all CF patients have. You may also want to speak to your doctors about a potential antihistamine, idea here would be slow the body's mucuse production for a while. May help with emptying out the lungs if they don't fill quite so fast. A personal note on Pseudomonas, I ALWAYS get worse befor I get better on antibiotics with a Pseudomonas infection going. Seems like the antibiotics break it up and then I end up coughing up a bucket or two in as many days then I'm on the road to "recovory", still seems to take the 6-8 weeks tho to really clear things up.
Mom2Brinly
New member
Thank you for your replies! We went to the cf clinic today and will be checking into club med tomorrow. I am sad we have waited and wasted 2 months on cayston and tobi for nothing to change. I know this is our last resort. I just hope this helps? This is her 3rd hospital stay this year. Her x ray showed no inflammation overall but a little brochiasis in the same trouble spot she always had since birth. Her pfts were 88% and her o2 was 100% so again i feel so confused on why she is coughing? It is a deep wet cough so i know something is going on deep down inside- it just kills me that she will miss her first weeks of 2nd grade while she is jumping up and down doing cheers. ;-( The cf doc does not think it is ABPA becasuse of the high pfts? I will be pushing for more testing in the hospital! I do not see how this can't be a connection? She did have Aspergillous in her lungs and she is allergic to it? I am sorry i am venting just sad... i hate this disease!
Blythe
Blythe
Mom2Brinly
New member
Thank you for your replies! We went to the cf clinic today and will be checking into club med tomorrow. I am sad we have waited and wasted 2 months on cayston and tobi for nothing to change. I know this is our last resort. I just hope this helps? This is her 3rd hospital stay this year. Her x ray showed no inflammation overall but a little brochiasis in the same trouble spot she always had since birth. Her pfts were 88% and her o2 was 100% so again i feel so confused on why she is coughing? It is a deep wet cough so i know something is going on deep down inside- it just kills me that she will miss her first weeks of 2nd grade while she is jumping up and down doing cheers. ;-( The cf doc does not think it is ABPA becasuse of the high pfts? I will be pushing for more testing in the hospital! I do not see how this can't be a connection? She did have Aspergillous in her lungs and she is allergic to it? I am sorry i am venting just sad... i hate this disease!
Blythe
Blythe
Mom2Brinly
New member
Thank you for your replies! We went to the cf clinic today and will be checking into club med tomorrow. I am sad we have waited and wasted 2 months on cayston and tobi for nothing to change. I know this is our last resort. I just hope this helps? This is her 3rd hospital stay this year. Her x ray showed no inflammation overall but a little brochiasis in the same trouble spot she always had since birth. Her pfts were 88% and her o2 was 100% so again i feel so confused on why she is coughing? It is a deep wet cough so i know something is going on deep down inside- it just kills me that she will miss her first weeks of 2nd grade while she is jumping up and down doing cheers. ;-( The cf doc does not think it is ABPA becasuse of the high pfts? I will be pushing for more testing in the hospital! I do not see how this can't be a connection? She did have Aspergillous in her lungs and she is allergic to it? I am sorry i am venting just sad... i hate this disease!
<br />Blythe
<br />Blythe
T
TonyaH
Guest
<P>Hey Blythe,</P>
<P>When Andrew was diagnosed with ABPA his pfts were 100. The aspergillus may not be causing your current problems, but if you've been told there is an allergy to the aspergillus, then that IS ABPA. </P>
<P> </P>
<P>Best of luck! Please keep us posted!</P>
<P>When Andrew was diagnosed with ABPA his pfts were 100. The aspergillus may not be causing your current problems, but if you've been told there is an allergy to the aspergillus, then that IS ABPA. </P>
<P> </P>
<P>Best of luck! Please keep us posted!</P>
T
TonyaH
Guest
<P>Hey Blythe,</P>
<P>When Andrew was diagnosed with ABPA his pfts were 100. The aspergillus may not be causing your current problems, but if you've been told there is an allergy to the aspergillus, then that IS ABPA. </P>
<P></P>
<P>Best of luck! Please keep us posted!</P>
<P>When Andrew was diagnosed with ABPA his pfts were 100. The aspergillus may not be causing your current problems, but if you've been told there is an allergy to the aspergillus, then that IS ABPA. </P>
<P></P>
<P>Best of luck! Please keep us posted!</P>
T
TonyaH
Guest
<P>Hey Blythe,</P>
<P>When Andrew was diagnosed with ABPA his pfts were 100. The aspergillus may not be causing your current problems, but if you've been told there is an allergy to the aspergillus, then that IS ABPA. </P>
<P></P>
<P>Best of luck! Please keep us posted!<BR></P>
<P>When Andrew was diagnosed with ABPA his pfts were 100. The aspergillus may not be causing your current problems, but if you've been told there is an allergy to the aspergillus, then that IS ABPA. </P>
<P></P>
<P>Best of luck! Please keep us posted!<BR></P>
Mom2Brinly
New member
TonyaH- How do i pursure testing?? She is in the hospital right now i have given the docs her bloodwork results. When she was admited last Feb. they also tested her Ige and they are within "normal" range? So therefore this has lingered and the cf docs have done nothing for the aspergillus. Her Ige #s are not outside at all. Her numbers are 31.8 inside range showing no inflammation?? BUT my mommy instinct is feeling like it is the ABPA.
I do not understand why they will not treat it?!
Blythe
I do not understand why they will not treat it?!
Blythe
Mom2Brinly
New member
TonyaH- How do i pursure testing?? She is in the hospital right now i have given the docs her bloodwork results. When she was admited last Feb. they also tested her Ige and they are within "normal" range? So therefore this has lingered and the cf docs have done nothing for the aspergillus. Her Ige #s are not outside at all. Her numbers are 31.8 inside range showing no inflammation?? BUT my mommy instinct is feeling like it is the ABPA.
I do not understand why they will not treat it?!
Blythe
I do not understand why they will not treat it?!
Blythe
Mom2Brinly
New member
TonyaH- How do i pursure testing?? She is in the hospital right now i have given the docs her bloodwork results. When she was admited last Feb. they also tested her Ige and they are within "normal" range? So therefore this has lingered and the cf docs have done nothing for the aspergillus. Her Ige #s are not outside at all. Her numbers are 31.8 inside range showing no inflammation?? BUT my mommy instinct is feeling like it is the ABPA.
<br />I do not understand why they will not treat it?!
<br />Blythe
<br />I do not understand why they will not treat it?!
<br />Blythe
T
TonyaH
Guest
<P>Hi Blythe,</P>
<P>I am a bit confused. I thought you said earlier that her IgE levels were high and you had been told she had an allergy to the aspergillus. I think what you may have been told was that her aspergillus count was high. The lab classifies the infection by a count of how many bacteria or mold are found in a sample every time you have a culture run. Just because her count was high does not mean she is allergic. An IgE test is a test that detects an allergic response. So, you can have a high aspergillus count with a low IgE score, and you can also have a low aspergillus count with a high IgE score, depending on the severity of the allergic response. Am I making any sense?</P>
<P> </P>
<P>I would have your doctor clarify things for you. If the IgE level was within normal range, there may be no need to treat the aspergillus. </P>
<P> </P>
<P>I am all for mother's instinct, though. Just for peace of mind, the next time your daughter has a positive culture for aspergillus I might suggest requesting another IgE test.</P>
<P> </P>
<P>I hope she starts to improve very soon, and that you can get home quickly!</P>
<P>I am a bit confused. I thought you said earlier that her IgE levels were high and you had been told she had an allergy to the aspergillus. I think what you may have been told was that her aspergillus count was high. The lab classifies the infection by a count of how many bacteria or mold are found in a sample every time you have a culture run. Just because her count was high does not mean she is allergic. An IgE test is a test that detects an allergic response. So, you can have a high aspergillus count with a low IgE score, and you can also have a low aspergillus count with a high IgE score, depending on the severity of the allergic response. Am I making any sense?</P>
<P> </P>
<P>I would have your doctor clarify things for you. If the IgE level was within normal range, there may be no need to treat the aspergillus. </P>
<P> </P>
<P>I am all for mother's instinct, though. Just for peace of mind, the next time your daughter has a positive culture for aspergillus I might suggest requesting another IgE test.</P>
<P> </P>
<P>I hope she starts to improve very soon, and that you can get home quickly!</P>