My son Jake is in the process of being diagnosed with ABPA or ruling it out. He is 10 now, but was 9 when his IgE came been extremely elevated, in the 7,000s. He is on prednisone right now. His last IgE was in the 4,000s. I am waiting for the results of some more testing for ABPA.
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ABPA - allergic reaction to aspergillus (in a nutshell!)
- Thread starter camperscove
- Start date
camperscove
New member
As it turns out, my sons IgE was only barely elevated. . . 2 steps forward, 1 step back in our quest to get rid of this lingering cough. I'm so glad to have stumbled on all of this ABPA info because now it's on my radar especially since it's more common in boys!
Very interested in Sporonox! It's nice to know there will be an alternative to the constant and dreaded Pred!
Very interested in Sporonox! It's nice to know there will be an alternative to the constant and dreaded Pred!
camperscove
New member
As it turns out, my sons IgE was only barely elevated. . . 2 steps forward, 1 step back in our quest to get rid of this lingering cough. I'm so glad to have stumbled on all of this ABPA info because now it's on my radar especially since it's more common in boys!
Very interested in Sporonox! It's nice to know there will be an alternative to the constant and dreaded Pred!
Very interested in Sporonox! It's nice to know there will be an alternative to the constant and dreaded Pred!
camperscove
New member
As it turns out, my sons IgE was only barely elevated. . . 2 steps forward, 1 step back in our quest to get rid of this lingering cough. I'm so glad to have stumbled on all of this ABPA info because now it's on my radar especially since it's more common in boys!
<br />Very interested in Sporonox! It's nice to know there will be an alternative to the constant and dreaded Pred!
<br />Very interested in Sporonox! It's nice to know there will be an alternative to the constant and dreaded Pred!
My 10 year suffers quite badly from ABPA diagnosed at age 5 with IGe levels of over 18,000 highest our CF doc had ever seen. Last year his lung function dropped from 82% to 52% because of ABPA, he was hospitalised for 4 weeks straight and he went on Sporonax (pink and blue pills) 4 pills daily ever since. We are hoping to get off them in the next couple of months, but his levels are monitored really closely. He is is fact mid way in a another tune up due to his ABPA.
We are very conscious with what he does in terms of keeping him free of Aspergillious as it seems (obviously) to really affect him.
We are very conscious with what he does in terms of keeping him free of Aspergillious as it seems (obviously) to really affect him.
My 10 year suffers quite badly from ABPA diagnosed at age 5 with IGe levels of over 18,000 highest our CF doc had ever seen. Last year his lung function dropped from 82% to 52% because of ABPA, he was hospitalised for 4 weeks straight and he went on Sporonax (pink and blue pills) 4 pills daily ever since. We are hoping to get off them in the next couple of months, but his levels are monitored really closely. He is is fact mid way in a another tune up due to his ABPA.
We are very conscious with what he does in terms of keeping him free of Aspergillious as it seems (obviously) to really affect him.
We are very conscious with what he does in terms of keeping him free of Aspergillious as it seems (obviously) to really affect him.
My 10 year suffers quite badly from ABPA diagnosed at age 5 with IGe levels of over 18,000 highest our CF doc had ever seen. Last year his lung function dropped from 82% to 52% because of ABPA, he was hospitalised for 4 weeks straight and he went on Sporonax (pink and blue pills) 4 pills daily ever since. We are hoping to get off them in the next couple of months, but his levels are monitored really closely. He is is fact mid way in a another tune up due to his ABPA.
<br />
<br />We are very conscious with what he does in terms of keeping him free of Aspergillious as it seems (obviously) to really affect him.
<br />
<br />We are very conscious with what he does in terms of keeping him free of Aspergillious as it seems (obviously) to really affect him.
S
sdelorenzo
Guest
My son's pfts fell at age 6 from 110 to 65% because of ABPA. He was wheezing. His doctor suspected ABPA during that
time because everything else had been ruled out. IV's didn't help, etc. My son didn't culture
Aspergillus until they finally did a bronch after 18 months. His ige levels were never very high
-around 200-700. But ABPA took a toll on him. After he started itraconozole and monthly
IV steroids, his pft's rose to 100 and IGE dropped to 100. After ending all treatments for ABPA 5 months ago,
he is now in the hospital with lung issues we think due to ABPA. But his lung function is 103. He just has a bad
X-ray, ige around 1000 and fevers. That is his experience.
Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 3 and Paige, 1 both without CF
time because everything else had been ruled out. IV's didn't help, etc. My son didn't culture
Aspergillus until they finally did a bronch after 18 months. His ige levels were never very high
-around 200-700. But ABPA took a toll on him. After he started itraconozole and monthly
IV steroids, his pft's rose to 100 and IGE dropped to 100. After ending all treatments for ABPA 5 months ago,
he is now in the hospital with lung issues we think due to ABPA. But his lung function is 103. He just has a bad
X-ray, ige around 1000 and fevers. That is his experience.
Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 3 and Paige, 1 both without CF
S
sdelorenzo
Guest
My son's pfts fell at age 6 from 110 to 65% because of ABPA. He was wheezing. His doctor suspected ABPA during that
time because everything else had been ruled out. IV's didn't help, etc. My son didn't culture
Aspergillus until they finally did a bronch after 18 months. His ige levels were never very high
-around 200-700. But ABPA took a toll on him. After he started itraconozole and monthly
IV steroids, his pft's rose to 100 and IGE dropped to 100. After ending all treatments for ABPA 5 months ago,
he is now in the hospital with lung issues we think due to ABPA. But his lung function is 103. He just has a bad
X-ray, ige around 1000 and fevers. That is his experience.
Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 3 and Paige, 1 both without CF
time because everything else had been ruled out. IV's didn't help, etc. My son didn't culture
Aspergillus until they finally did a bronch after 18 months. His ige levels were never very high
-around 200-700. But ABPA took a toll on him. After he started itraconozole and monthly
IV steroids, his pft's rose to 100 and IGE dropped to 100. After ending all treatments for ABPA 5 months ago,
he is now in the hospital with lung issues we think due to ABPA. But his lung function is 103. He just has a bad
X-ray, ige around 1000 and fevers. That is his experience.
Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 3 and Paige, 1 both without CF
T
tammykrumrey
Guest
My older daughter has ABPA, and was dx with it at 12 years old. It did really wicked things to her FEV1!! Poor thing was so scared, because she could tell that 'something just wasn't right'! I was out of town at the time, and she dropped from 98% FEV down to 37% FEV! She called me from her doctor appt, with both her and my mom crying! I was freaking out!! But her doctor was so sweet and handle them both very well<img src="i/expressions/face-icon-small-smile.gif" border="0">
We had suspected ABPA for several years, because her ige levels kept creeping up. But since she had always responding to IV meds, it was thought the ABPA was not causing her the problems, but rather her MRSA or Cepacia. It wasn't until this incident that she was treated for it. Her cough was different, and she was wheezing so badly. She was coughing almost NON-STOP! Literally!! Her ige levels have went up into the 12,000 range!!
She has been on Prednisone three times since then. And she has been on VFend since then as well. She was on VFend for a year, without it helping much. Then during her last hosptial stay, blood work showed that the levels of it were low, so they tripled the dose. And now, she is doing fantastic with it!! We are not looking to stop the VFend anytime in the near future. I am anxious to see her ige levels now that we have upped the VFend<img src="i/expressions/face-icon-small-smile.gif" border="0">
We had suspected ABPA for several years, because her ige levels kept creeping up. But since she had always responding to IV meds, it was thought the ABPA was not causing her the problems, but rather her MRSA or Cepacia. It wasn't until this incident that she was treated for it. Her cough was different, and she was wheezing so badly. She was coughing almost NON-STOP! Literally!! Her ige levels have went up into the 12,000 range!!
She has been on Prednisone three times since then. And she has been on VFend since then as well. She was on VFend for a year, without it helping much. Then during her last hosptial stay, blood work showed that the levels of it were low, so they tripled the dose. And now, she is doing fantastic with it!! We are not looking to stop the VFend anytime in the near future. I am anxious to see her ige levels now that we have upped the VFend<img src="i/expressions/face-icon-small-smile.gif" border="0">
T
tammykrumrey
Guest
My older daughter has ABPA, and was dx with it at 12 years old. It did really wicked things to her FEV1!! Poor thing was so scared, because she could tell that 'something just wasn't right'! I was out of town at the time, and she dropped from 98% FEV down to 37% FEV! She called me from her doctor appt, with both her and my mom crying! I was freaking out!! But her doctor was so sweet and handle them both very well<img src="i/expressions/face-icon-small-smile.gif" border="0">
We had suspected ABPA for several years, because her ige levels kept creeping up. But since she had always responding to IV meds, it was thought the ABPA was not causing her the problems, but rather her MRSA or Cepacia. It wasn't until this incident that she was treated for it. Her cough was different, and she was wheezing so badly. She was coughing almost NON-STOP! Literally!! Her ige levels have went up into the 12,000 range!!
She has been on Prednisone three times since then. And she has been on VFend since then as well. She was on VFend for a year, without it helping much. Then during her last hosptial stay, blood work showed that the levels of it were low, so they tripled the dose. And now, she is doing fantastic with it!! We are not looking to stop the VFend anytime in the near future. I am anxious to see her ige levels now that we have upped the VFend<img src="i/expressions/face-icon-small-smile.gif" border="0">
We had suspected ABPA for several years, because her ige levels kept creeping up. But since she had always responding to IV meds, it was thought the ABPA was not causing her the problems, but rather her MRSA or Cepacia. It wasn't until this incident that she was treated for it. Her cough was different, and she was wheezing so badly. She was coughing almost NON-STOP! Literally!! Her ige levels have went up into the 12,000 range!!
She has been on Prednisone three times since then. And she has been on VFend since then as well. She was on VFend for a year, without it helping much. Then during her last hosptial stay, blood work showed that the levels of it were low, so they tripled the dose. And now, she is doing fantastic with it!! We are not looking to stop the VFend anytime in the near future. I am anxious to see her ige levels now that we have upped the VFend<img src="i/expressions/face-icon-small-smile.gif" border="0">