ABPA?

tammykrumrey · Mar 11, 2009

Kayla had been sick and did a round of Cipro and Bactrim. Within a few days she was still coughing and not feeling great. She has been running fevers off and on, with no other symptoms. She has had a few days of chest tightness and a day in which she couldn't participate in PE b/c she was breathless.

Friday she had been coughing non stop all day long. We had nice weather here in St. Louis on Friday and she had spent some time outside, so I thought maybe allergies (although things are not blooming yet and we have had little to no rain-she is allergic to trees and molds). That night she had what I would think an asthma attack would sound like, although she doesn't have asthma (I should say has never been tested for it). She was very scared and couldn't breath and asked me to call her CF dr. She thought she was going to die<img src="i/expressions/face-icon-small-sad.gif" border="0"> Poor thing.

Well, she is on Vanc for MRSA and Tobra and Meropenem for the Cepacia. So far all virus's have come back negative.

She does have elevated IgE levels at 1034 and the RAST test (or whatever it is called) is high for Aspergillus F. specifcally.

I hope to get to speak with the drs. in the morning. For those of you who do have ABPA, are these findings/symptoms somewhat similiar to yours? What have been the treatments?

Thanks for all your help!!

tammykrumrey · Mar 11, 2009

Kayla had been sick and did a round of Cipro and Bactrim. Within a few days she was still coughing and not feeling great. She has been running fevers off and on, with no other symptoms. She has had a few days of chest tightness and a day in which she couldn't participate in PE b/c she was breathless.

Friday she had been coughing non stop all day long. We had nice weather here in St. Louis on Friday and she had spent some time outside, so I thought maybe allergies (although things are not blooming yet and we have had little to no rain-she is allergic to trees and molds). That night she had what I would think an asthma attack would sound like, although she doesn't have asthma (I should say has never been tested for it). She was very scared and couldn't breath and asked me to call her CF dr. She thought she was going to die<img src="i/expressions/face-icon-small-sad.gif" border="0"> Poor thing.

Well, she is on Vanc for MRSA and Tobra and Meropenem for the Cepacia. So far all virus's have come back negative.

She does have elevated IgE levels at 1034 and the RAST test (or whatever it is called) is high for Aspergillus F. specifcally.

I hope to get to speak with the drs. in the morning. For those of you who do have ABPA, are these findings/symptoms somewhat similiar to yours? What have been the treatments?

Thanks for all your help!!

tammykrumrey · Mar 11, 2009

Kayla had been sick and did a round of Cipro and Bactrim. Within a few days she was still coughing and not feeling great. She has been running fevers off and on, with no other symptoms. She has had a few days of chest tightness and a day in which she couldn't participate in PE b/c she was breathless.

Friday she had been coughing non stop all day long. We had nice weather here in St. Louis on Friday and she had spent some time outside, so I thought maybe allergies (although things are not blooming yet and we have had little to no rain-she is allergic to trees and molds). That night she had what I would think an asthma attack would sound like, although she doesn't have asthma (I should say has never been tested for it). She was very scared and couldn't breath and asked me to call her CF dr. She thought she was going to die<img src="i/expressions/face-icon-small-sad.gif" border="0"> Poor thing.

Well, she is on Vanc for MRSA and Tobra and Meropenem for the Cepacia. So far all virus's have come back negative.

She does have elevated IgE levels at 1034 and the RAST test (or whatever it is called) is high for Aspergillus F. specifcally.

I hope to get to speak with the drs. in the morning. For those of you who do have ABPA, are these findings/symptoms somewhat similiar to yours? What have been the treatments?

Thanks for all your help!!

tammykrumrey · Mar 11, 2009

Kayla had been sick and did a round of Cipro and Bactrim. Within a few days she was still coughing and not feeling great. She has been running fevers off and on, with no other symptoms. She has had a few days of chest tightness and a day in which she couldn't participate in PE b/c she was breathless.

Friday she had been coughing non stop all day long. We had nice weather here in St. Louis on Friday and she had spent some time outside, so I thought maybe allergies (although things are not blooming yet and we have had little to no rain-she is allergic to trees and molds). That night she had what I would think an asthma attack would sound like, although she doesn't have asthma (I should say has never been tested for it). She was very scared and couldn't breath and asked me to call her CF dr. She thought she was going to die<img src="i/expressions/face-icon-small-sad.gif" border="0"> Poor thing.

Well, she is on Vanc for MRSA and Tobra and Meropenem for the Cepacia. So far all virus's have come back negative.

She does have elevated IgE levels at 1034 and the RAST test (or whatever it is called) is high for Aspergillus F. specifcally.

I hope to get to speak with the drs. in the morning. For those of you who do have ABPA, are these findings/symptoms somewhat similiar to yours? What have been the treatments?

Thanks for all your help!!

tammykrumrey · Mar 11, 2009

Kayla had been sick and did a round of Cipro and Bactrim. Within a few days she was still coughing and not feeling great. She has been running fevers off and on, with no other symptoms. She has had a few days of chest tightness and a day in which she couldn't participate in PE b/c she was breathless.
 
 Friday she had been coughing non stop all day long. We had nice weather here in St. Louis on Friday and she had spent some time outside, so I thought maybe allergies (although things are not blooming yet and we have had little to no rain-she is allergic to trees and molds). That night she had what I would think an asthma attack would sound like, although she doesn't have asthma (I should say has never been tested for it). She was very scared and couldn't breath and asked me to call her CF dr. She thought she was going to die<img src="i/expressions/face-icon-small-sad.gif" border="0"> Poor thing.
 
 Well, she is on Vanc for MRSA and Tobra and Meropenem for the Cepacia. So far all virus's have come back negative.
 
 She does have elevated IgE levels at 1034 and the RAST test (or whatever it is called) is high for Aspergillus F. specifcally.
 
 I hope to get to speak with the drs. in the morning. For those of you who do have ABPA, are these findings/symptoms somewhat similiar to yours? What have been the treatments?
 
 Thanks for all your help!!

saveferris2009 · Mar 11, 2009

I went to Stanford for a 2nd opinion about possible ABPA and treatment advice.

You can check out my blog with those details if you'd like.

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/">http://noexcusesnoexcuses.blogspot.com/</a>

saveferris2009 · Mar 11, 2009

I went to Stanford for a 2nd opinion about possible ABPA and treatment advice.

You can check out my blog with those details if you'd like.

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/">http://noexcusesnoexcuses.blogspot.com/</a>

saveferris2009 · Mar 11, 2009

I went to Stanford for a 2nd opinion about possible ABPA and treatment advice.

You can check out my blog with those details if you'd like.

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/">http://noexcusesnoexcuses.blogspot.com/</a>

saveferris2009 · Mar 11, 2009

I went to Stanford for a 2nd opinion about possible ABPA and treatment advice.

You can check out my blog with those details if you'd like.

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/">http://noexcusesnoexcuses.blogspot.com/</a>

saveferris2009 · Mar 11, 2009

I went to Stanford for a 2nd opinion about possible ABPA and treatment advice.
 
 You can check out my blog with those details if you'd like.
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/">http://noexcusesnoexcuses.blogspot.com/</a>

TonyaH · Mar 11, 2009

Hey Tammy,

I'm sorry Kayla is having such a difficult time. We have experienced similar things with Andrew before he was diagnosed with ABPA. He had three admissions within a year and was being treated for PA, while also growing staph, HFlue, and aspergillus. Once he was actually diagnosed with ABPA and treated for that as well with prednisone, he has been so much better! In July we will be one year picc-free!

In Andrew's case, ABPA does seem to show up as allergy/asthma syptoms. I notice sometimes he gets winded easier when he's running around, and sometimes when he is playing on another level of the house I can hear him breathing heavily. I was just so happy to finally have the answer. Is Kayla on prednisone? We have not treated with an antifungal yet, but it's there if we ever need to. Please keep us posted!

TonyaH · Mar 11, 2009

Hey Tammy,

I'm sorry Kayla is having such a difficult time. We have experienced similar things with Andrew before he was diagnosed with ABPA. He had three admissions within a year and was being treated for PA, while also growing staph, HFlue, and aspergillus. Once he was actually diagnosed with ABPA and treated for that as well with prednisone, he has been so much better! In July we will be one year picc-free!

In Andrew's case, ABPA does seem to show up as allergy/asthma syptoms. I notice sometimes he gets winded easier when he's running around, and sometimes when he is playing on another level of the house I can hear him breathing heavily. I was just so happy to finally have the answer. Is Kayla on prednisone? We have not treated with an antifungal yet, but it's there if we ever need to. Please keep us posted!

TonyaH · Mar 11, 2009

Hey Tammy,

I'm sorry Kayla is having such a difficult time. We have experienced similar things with Andrew before he was diagnosed with ABPA. He had three admissions within a year and was being treated for PA, while also growing staph, HFlue, and aspergillus. Once he was actually diagnosed with ABPA and treated for that as well with prednisone, he has been so much better! In July we will be one year picc-free!

In Andrew's case, ABPA does seem to show up as allergy/asthma syptoms. I notice sometimes he gets winded easier when he's running around, and sometimes when he is playing on another level of the house I can hear him breathing heavily. I was just so happy to finally have the answer. Is Kayla on prednisone? We have not treated with an antifungal yet, but it's there if we ever need to. Please keep us posted!

TonyaH · Mar 11, 2009

Hey Tammy,

I'm sorry Kayla is having such a difficult time. We have experienced similar things with Andrew before he was diagnosed with ABPA. He had three admissions within a year and was being treated for PA, while also growing staph, HFlue, and aspergillus. Once he was actually diagnosed with ABPA and treated for that as well with prednisone, he has been so much better! In July we will be one year picc-free!

In Andrew's case, ABPA does seem to show up as allergy/asthma syptoms. I notice sometimes he gets winded easier when he's running around, and sometimes when he is playing on another level of the house I can hear him breathing heavily. I was just so happy to finally have the answer. Is Kayla on prednisone? We have not treated with an antifungal yet, but it's there if we ever need to. Please keep us posted!

TonyaH · Mar 11, 2009

Hey Tammy,
 
 I'm sorry Kayla is having such a difficult time. We have experienced similar things with Andrew before he was diagnosed with ABPA. He had three admissions within a year and was being treated for PA, while also growing staph, HFlue, and aspergillus. Once he was actually diagnosed with ABPA and treated for that as well with prednisone, he has been so much better! In July we will be one year picc-free!
 
 In Andrew's case, ABPA does seem to show up as allergy/asthma syptoms. I notice sometimes he gets winded easier when he's running around, and sometimes when he is playing on another level of the house I can hear him breathing heavily. I was just so happy to finally have the answer. Is Kayla on prednisone? We have not treated with an antifungal yet, but it's there if we ever need to. Please keep us posted!

Havoc · Mar 11, 2009

Yup, spot on with my symptoms too. 1034 is a considerable IgE as well (mine was around 400). With the elevated IgE and RAST that should be enough to Dx with ABPA although they may want a culture as well.

The standard treatment is high dose steroids and antifungals. Having said that, some docs don't start out with antifungals right away, they tend to be hard on the liver and most of the time the Aspergillus colonizes the mucus rather than invading the cells.

There is a lot of anecdotal info on here regarding high dose steroids. The cure can sometimes be worse than the disease. In my personal experience, I had quite a hard time with the steroids and ended up becoming insulin resistant, but it worked. The wheezing stopped and I went infection free (bacterial) for the period of time I was on the steroids. There are some new alternatives to steroid therapy, but from what I hear it's quite a lot of red tape, worth looking into though.

If she does end up doing steroid therapy, keep a close eye for signs of diabetes. I had a lot of issues going on and coming off, with a relatively smooth sail in the middle.

Good luck!

Havoc · Mar 11, 2009

Yup, spot on with my symptoms too. 1034 is a considerable IgE as well (mine was around 400). With the elevated IgE and RAST that should be enough to Dx with ABPA although they may want a culture as well.

The standard treatment is high dose steroids and antifungals. Having said that, some docs don't start out with antifungals right away, they tend to be hard on the liver and most of the time the Aspergillus colonizes the mucus rather than invading the cells.

There is a lot of anecdotal info on here regarding high dose steroids. The cure can sometimes be worse than the disease. In my personal experience, I had quite a hard time with the steroids and ended up becoming insulin resistant, but it worked. The wheezing stopped and I went infection free (bacterial) for the period of time I was on the steroids. There are some new alternatives to steroid therapy, but from what I hear it's quite a lot of red tape, worth looking into though.

If she does end up doing steroid therapy, keep a close eye for signs of diabetes. I had a lot of issues going on and coming off, with a relatively smooth sail in the middle.

Good luck!

Havoc · Mar 11, 2009

Yup, spot on with my symptoms too. 1034 is a considerable IgE as well (mine was around 400). With the elevated IgE and RAST that should be enough to Dx with ABPA although they may want a culture as well.

The standard treatment is high dose steroids and antifungals. Having said that, some docs don't start out with antifungals right away, they tend to be hard on the liver and most of the time the Aspergillus colonizes the mucus rather than invading the cells.

There is a lot of anecdotal info on here regarding high dose steroids. The cure can sometimes be worse than the disease. In my personal experience, I had quite a hard time with the steroids and ended up becoming insulin resistant, but it worked. The wheezing stopped and I went infection free (bacterial) for the period of time I was on the steroids. There are some new alternatives to steroid therapy, but from what I hear it's quite a lot of red tape, worth looking into though.

If she does end up doing steroid therapy, keep a close eye for signs of diabetes. I had a lot of issues going on and coming off, with a relatively smooth sail in the middle.

Good luck!

Havoc · Mar 11, 2009

Yup, spot on with my symptoms too. 1034 is a considerable IgE as well (mine was around 400). With the elevated IgE and RAST that should be enough to Dx with ABPA although they may want a culture as well.

The standard treatment is high dose steroids and antifungals. Having said that, some docs don't start out with antifungals right away, they tend to be hard on the liver and most of the time the Aspergillus colonizes the mucus rather than invading the cells.

There is a lot of anecdotal info on here regarding high dose steroids. The cure can sometimes be worse than the disease. In my personal experience, I had quite a hard time with the steroids and ended up becoming insulin resistant, but it worked. The wheezing stopped and I went infection free (bacterial) for the period of time I was on the steroids. There are some new alternatives to steroid therapy, but from what I hear it's quite a lot of red tape, worth looking into though.

If she does end up doing steroid therapy, keep a close eye for signs of diabetes. I had a lot of issues going on and coming off, with a relatively smooth sail in the middle.

Good luck!

Havoc · Mar 11, 2009

Yup, spot on with my symptoms too. 1034 is a considerable IgE as well (mine was around 400). With the elevated IgE and RAST that should be enough to Dx with ABPA although they may want a culture as well.
 
 The standard treatment is high dose steroids and antifungals. Having said that, some docs don't start out with antifungals right away, they tend to be hard on the liver and most of the time the Aspergillus colonizes the mucus rather than invading the cells.
 
 There is a lot of anecdotal info on here regarding high dose steroids. The cure can sometimes be worse than the disease. In my personal experience, I had quite a hard time with the steroids and ended up becoming insulin resistant, but it worked. The wheezing stopped and I went infection free (bacterial) for the period of time I was on the steroids. There are some new alternatives to steroid therapy, but from what I hear it's quite a lot of red tape, worth looking into though.
 
 If she does end up doing steroid therapy, keep a close eye for signs of diabetes. I had a lot of issues going on and coming off, with a relatively smooth sail in the middle.
 
 Good luck!

ABPA?

tammykrumrey

Guest

tammykrumrey

Guest

tammykrumrey

Guest

tammykrumrey

Guest

tammykrumrey

Guest

New member

New member

New member

New member

New member

TonyaH

Guest

TonyaH

Guest

TonyaH

Guest

TonyaH

Guest

TonyaH

Guest

New member

New member

New member

New member

New member