Frustrated with PFTs - Need Suggestions.

M

myfanwy

New member
My 10 year old daughter's PFTs have always hovered in the 80s and 90s. She's never had a lung infection but in the last year her PFTs have dropped dramatically into the 50s. Our doctors can't determine a reason. She's tested negatively for all of the following:


Nontuberculous mycobacteria

Pseudomonas aeruginosa

Candida

Burkholderia cepacia

S. maltophilia

Haemophilus influenzaef


She did test positive for Staphylococcus aureus but that was treated and allergic bronchopulmonary aspergillosis. She started on prednisone about a month ago but her PFTs have not changed. In fact they dipped to 47. Has anyone had a similar experience or have any ideas? I'm getting frustrated as the doctors don't seem to have an alternate course.


thanks,


Andrew
 
M

myfanwy

New member
My 10 year old daughter's PFTs have always hovered in the 80s and 90s. She's never had a lung infection but in the last year her PFTs have dropped dramatically into the 50s. Our doctors can't determine a reason. She's tested negatively for all of the following:


Nontuberculous mycobacteria

Pseudomonas aeruginosa

Candida

Burkholderia cepacia

S. maltophilia

Haemophilus influenzaef


She did test positive for Staphylococcus aureus but that was treated and allergic bronchopulmonary aspergillosis. She started on prednisone about a month ago but her PFTs have not changed. In fact they dipped to 47. Has anyone had a similar experience or have any ideas? I'm getting frustrated as the doctors don't seem to have an alternate course.


thanks,


Andrew
 
M

myfanwy

New member
My 10 year old daughter's PFTs have always hovered in the 80s and 90s. She's never had a lung infection but in the last year her PFTs have dropped dramatically into the 50s. Our doctors can't determine a reason. She's tested negatively for all of the following:


Nontuberculous mycobacteria

Pseudomonas aeruginosa

Candida

Burkholderia cepacia

S. maltophilia

Haemophilus influenzaef


She did test positive for Staphylococcus aureus but that was treated and allergic bronchopulmonary aspergillosis. She started on prednisone about a month ago but her PFTs have not changed. In fact they dipped to 47. Has anyone had a similar experience or have any ideas? I'm getting frustrated as the doctors don't seem to have an alternate course.


thanks,


Andrew
 
M

myfanwy

New member
My 10 year old daughter's PFTs have always hovered in the 80s and 90s. She's never had a lung infection but in the last year her PFTs have dropped dramatically into the 50s. Our doctors can't determine a reason. She's tested negatively for all of the following:


Nontuberculous mycobacteria

Pseudomonas aeruginosa

Candida

Burkholderia cepacia

S. maltophilia

Haemophilus influenzaef


She did test positive for Staphylococcus aureus but that was treated and allergic bronchopulmonary aspergillosis. She started on prednisone about a month ago but her PFTs have not changed. In fact they dipped to 47. Has anyone had a similar experience or have any ideas? I'm getting frustrated as the doctors don't seem to have an alternate course.


thanks,


Andrew
 
M

myfanwy

New member
My 10 year old daughter's PFTs have always hovered in the 80s and 90s. She's never had a lung infection but in the last year her PFTs have dropped dramatically into the 50s. Our doctors can't determine a reason. She's tested negatively for all of the following:
<br />
<br />
<br />Nontuberculous mycobacteria
<br />
<br />Pseudomonas aeruginosa
<br />
<br />Candida
<br />
<br />Burkholderia cepacia
<br />
<br />S. maltophilia
<br />
<br />Haemophilus influenzaef
<br />
<br />
<br />She did test positive for Staphylococcus aureus but that was treated and allergic bronchopulmonary aspergillosis. She started on prednisone about a month ago but her PFTs have not changed. In fact they dipped to 47. Has anyone had a similar experience or have any ideas? I'm getting frustrated as the doctors don't seem to have an alternate course.
<br />
<br />
<br />thanks,
<br />
<br />
<br />Andrew
 
A

AnD

New member
Have they put her on IV's for anything? That big of a dip would alarm me too. Have they done a bronch to look and see what is going on in her lungs, and make sure that they have good and accurate samples to test (sometimes the "cough and spit" doesn't show all the bugs)? I don't know a lot about aspergillosis, except that I have that allergy, but not the aspergillus. How are they treating it? Is prednisone the only treatment they are using right now?
A little more info might help people who know about it help you more <img src="i/expressions/face-icon-small-wink.gif" border="0"> . I hope you get to the bottom of it soon, and her pft's come up better than ever.

Oh also, if you don't mind sharing her daily meds/nebs/pt, that might help with some suggestions too <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
 
A

AnD

New member
Have they put her on IV's for anything? That big of a dip would alarm me too. Have they done a bronch to look and see what is going on in her lungs, and make sure that they have good and accurate samples to test (sometimes the "cough and spit" doesn't show all the bugs)? I don't know a lot about aspergillosis, except that I have that allergy, but not the aspergillus. How are they treating it? Is prednisone the only treatment they are using right now?
A little more info might help people who know about it help you more <img src="i/expressions/face-icon-small-wink.gif" border="0"> . I hope you get to the bottom of it soon, and her pft's come up better than ever.

Oh also, if you don't mind sharing her daily meds/nebs/pt, that might help with some suggestions too <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
 
A

AnD

New member
Have they put her on IV's for anything? That big of a dip would alarm me too. Have they done a bronch to look and see what is going on in her lungs, and make sure that they have good and accurate samples to test (sometimes the "cough and spit" doesn't show all the bugs)? I don't know a lot about aspergillosis, except that I have that allergy, but not the aspergillus. How are they treating it? Is prednisone the only treatment they are using right now?
A little more info might help people who know about it help you more <img src="i/expressions/face-icon-small-wink.gif" border="0"> . I hope you get to the bottom of it soon, and her pft's come up better than ever.

Oh also, if you don't mind sharing her daily meds/nebs/pt, that might help with some suggestions too <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
 
A

AnD

New member
Have they put her on IV's for anything? That big of a dip would alarm me too. Have they done a bronch to look and see what is going on in her lungs, and make sure that they have good and accurate samples to test (sometimes the "cough and spit" doesn't show all the bugs)? I don't know a lot about aspergillosis, except that I have that allergy, but not the aspergillus. How are they treating it? Is prednisone the only treatment they are using right now?
A little more info might help people who know about it help you more <img src="i/expressions/face-icon-small-wink.gif" border="0"> . I hope you get to the bottom of it soon, and her pft's come up better than ever.

Oh also, if you don't mind sharing her daily meds/nebs/pt, that might help with some suggestions too <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
 
A

AnD

New member
Have they put her on IV's for anything? That big of a dip would alarm me too. Have they done a bronch to look and see what is going on in her lungs, and make sure that they have good and accurate samples to test (sometimes the "cough and spit" doesn't show all the bugs)? I don't know a lot about aspergillosis, except that I have that allergy, but not the aspergillus. How are they treating it? Is prednisone the only treatment they are using right now?
<br /> A little more info might help people who know about it help you more <img src="i/expressions/face-icon-small-wink.gif" border="0"> . I hope you get to the bottom of it soon, and her pft's come up better than ever.
<br />
<br />Oh also, if you don't mind sharing her daily meds/nebs/pt, that might help with some suggestions too <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
 
P

pjspiegle

New member
Hi,

I am sorry you are going threw this I understand your frustration.

My son went through something similar in that he seemed to be ok, wasn't growing anything, but needed a tune-up every 3 to 4 months with no real explanantion.

Fianlly, his doctor allowd me to take him off ALL his antibiotic for two weeks before his Oct admission and set up a sputum induction BEFORE they started any IV's or antibiotics. This worked, maybe too well, he grew out several "new" to him things: psedo, myco bacterium abscessus, stenotrophomonas, yeast, and then his standard staph, aspergillis, and one that grew in special cultures done at Boulder that he grew prevatella, plus he grew a couple more that I can't remember what they are called at the moment. This time it was more of a shorter list of what he doesn't have verses what he had. The antibiotics were just enough to cover up everything but not enough to get rid of it.

I would recommend this technique of stopping ALL antibiotics 2 weeks prior to a sputum culture, perferablly an induced sputum culture. The antibiotics include all of them including zithro MWF (if she is on that maintenance), any inhaled ones (tobi, aztreonam, colistim, etc.), and any other orals that she may be on. Sometimes they are just enough to cover things up but not enough to really make her better or get rid of the junk.

By the way, his x-rays and chest scans always look great. They did do a bronch in the April admit prior to the Oct admit but they did it after he had been on IV's for a week so it was not helpful other than it did show his left lower lobe opening was collapsing, not the lung the opening to that section was out of shape, may be a better description.

If you try this, I hope you have success,but not as much as we had as far as growing everything and then some.

Let us know what happens and as the prior person said, this is based off of our experience and more information might be helpful for more suggestions or a better one.
 
P

pjspiegle

New member
Hi,

I am sorry you are going threw this I understand your frustration.

My son went through something similar in that he seemed to be ok, wasn't growing anything, but needed a tune-up every 3 to 4 months with no real explanantion.

Fianlly, his doctor allowd me to take him off ALL his antibiotic for two weeks before his Oct admission and set up a sputum induction BEFORE they started any IV's or antibiotics. This worked, maybe too well, he grew out several "new" to him things: psedo, myco bacterium abscessus, stenotrophomonas, yeast, and then his standard staph, aspergillis, and one that grew in special cultures done at Boulder that he grew prevatella, plus he grew a couple more that I can't remember what they are called at the moment. This time it was more of a shorter list of what he doesn't have verses what he had. The antibiotics were just enough to cover up everything but not enough to get rid of it.

I would recommend this technique of stopping ALL antibiotics 2 weeks prior to a sputum culture, perferablly an induced sputum culture. The antibiotics include all of them including zithro MWF (if she is on that maintenance), any inhaled ones (tobi, aztreonam, colistim, etc.), and any other orals that she may be on. Sometimes they are just enough to cover things up but not enough to really make her better or get rid of the junk.

By the way, his x-rays and chest scans always look great. They did do a bronch in the April admit prior to the Oct admit but they did it after he had been on IV's for a week so it was not helpful other than it did show his left lower lobe opening was collapsing, not the lung the opening to that section was out of shape, may be a better description.

If you try this, I hope you have success,but not as much as we had as far as growing everything and then some.

Let us know what happens and as the prior person said, this is based off of our experience and more information might be helpful for more suggestions or a better one.
 
P

pjspiegle

New member
Hi,

I am sorry you are going threw this I understand your frustration.

My son went through something similar in that he seemed to be ok, wasn't growing anything, but needed a tune-up every 3 to 4 months with no real explanantion.

Fianlly, his doctor allowd me to take him off ALL his antibiotic for two weeks before his Oct admission and set up a sputum induction BEFORE they started any IV's or antibiotics. This worked, maybe too well, he grew out several "new" to him things: psedo, myco bacterium abscessus, stenotrophomonas, yeast, and then his standard staph, aspergillis, and one that grew in special cultures done at Boulder that he grew prevatella, plus he grew a couple more that I can't remember what they are called at the moment. This time it was more of a shorter list of what he doesn't have verses what he had. The antibiotics were just enough to cover up everything but not enough to get rid of it.

I would recommend this technique of stopping ALL antibiotics 2 weeks prior to a sputum culture, perferablly an induced sputum culture. The antibiotics include all of them including zithro MWF (if she is on that maintenance), any inhaled ones (tobi, aztreonam, colistim, etc.), and any other orals that she may be on. Sometimes they are just enough to cover things up but not enough to really make her better or get rid of the junk.

By the way, his x-rays and chest scans always look great. They did do a bronch in the April admit prior to the Oct admit but they did it after he had been on IV's for a week so it was not helpful other than it did show his left lower lobe opening was collapsing, not the lung the opening to that section was out of shape, may be a better description.

If you try this, I hope you have success,but not as much as we had as far as growing everything and then some.

Let us know what happens and as the prior person said, this is based off of our experience and more information might be helpful for more suggestions or a better one.
 
P

pjspiegle

New member
Hi,

I am sorry you are going threw this I understand your frustration.

My son went through something similar in that he seemed to be ok, wasn't growing anything, but needed a tune-up every 3 to 4 months with no real explanantion.

Fianlly, his doctor allowd me to take him off ALL his antibiotic for two weeks before his Oct admission and set up a sputum induction BEFORE they started any IV's or antibiotics. This worked, maybe too well, he grew out several "new" to him things: psedo, myco bacterium abscessus, stenotrophomonas, yeast, and then his standard staph, aspergillis, and one that grew in special cultures done at Boulder that he grew prevatella, plus he grew a couple more that I can't remember what they are called at the moment. This time it was more of a shorter list of what he doesn't have verses what he had. The antibiotics were just enough to cover up everything but not enough to get rid of it.

I would recommend this technique of stopping ALL antibiotics 2 weeks prior to a sputum culture, perferablly an induced sputum culture. The antibiotics include all of them including zithro MWF (if she is on that maintenance), any inhaled ones (tobi, aztreonam, colistim, etc.), and any other orals that she may be on. Sometimes they are just enough to cover things up but not enough to really make her better or get rid of the junk.

By the way, his x-rays and chest scans always look great. They did do a bronch in the April admit prior to the Oct admit but they did it after he had been on IV's for a week so it was not helpful other than it did show his left lower lobe opening was collapsing, not the lung the opening to that section was out of shape, may be a better description.

If you try this, I hope you have success,but not as much as we had as far as growing everything and then some.

Let us know what happens and as the prior person said, this is based off of our experience and more information might be helpful for more suggestions or a better one.
 
P

pjspiegle

New member
Hi,
<br />
<br />I am sorry you are going threw this I understand your frustration.
<br />
<br />My son went through something similar in that he seemed to be ok, wasn't growing anything, but needed a tune-up every 3 to 4 months with no real explanantion.
<br />
<br />Fianlly, his doctor allowd me to take him off ALL his antibiotic for two weeks before his Oct admission and set up a sputum induction BEFORE they started any IV's or antibiotics. This worked, maybe too well, he grew out several "new" to him things: psedo, myco bacterium abscessus, stenotrophomonas, yeast, and then his standard staph, aspergillis, and one that grew in special cultures done at Boulder that he grew prevatella, plus he grew a couple more that I can't remember what they are called at the moment. This time it was more of a shorter list of what he doesn't have verses what he had. The antibiotics were just enough to cover up everything but not enough to get rid of it.
<br />
<br />I would recommend this technique of stopping ALL antibiotics 2 weeks prior to a sputum culture, perferablly an induced sputum culture. The antibiotics include all of them including zithro MWF (if she is on that maintenance), any inhaled ones (tobi, aztreonam, colistim, etc.), and any other orals that she may be on. Sometimes they are just enough to cover things up but not enough to really make her better or get rid of the junk.
<br />
<br />By the way, his x-rays and chest scans always look great. They did do a bronch in the April admit prior to the Oct admit but they did it after he had been on IV's for a week so it was not helpful other than it did show his left lower lobe opening was collapsing, not the lung the opening to that section was out of shape, may be a better description.
<br />
<br />If you try this, I hope you have success,but not as much as we had as far as growing everything and then some.
<br />
<br />Let us know what happens and as the prior person said, this is based off of our experience and more information might be helpful for more suggestions or a better one.
 
M

myfanwy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnD</b></i>
Oh also, if you don't mind sharing her daily meds/nebs/pt, that might help with some suggestions too <img src="i/expressions/face-icon-small-wink.gif" border="0"> .</end quote></div>


Thank you for the quick response! She has done two bronchs over the last year and the results were negative for everything but the aspergillus allergy and staph aureus. They treated her with IV antibiotics for the staph but she's had reoccurring staph for years and it's previously been treated with oral meds successfully. It's only prednisone that they are using for the aspergillus allergy and there has been no effect after a month of 60mg prednisone daily.


PT: She does physio with a PEP mask three times daily with a salbutamol puffer - 200cfc

MEDS: Twelve 5mg pills equaling (60mg) prednisone(with Vitamin D and 2000 mg Calcium, ADEK), 50mcg of Fluticasone - two sprays in each nostril twice daily,

NEB: 1.5ml Saline mixed with 2ml Pulmicort and .5ml of Ventolin twice daily
 
M

myfanwy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnD</b></i>
Oh also, if you don't mind sharing her daily meds/nebs/pt, that might help with some suggestions too <img src="i/expressions/face-icon-small-wink.gif" border="0"> .</end quote></div>


Thank you for the quick response! She has done two bronchs over the last year and the results were negative for everything but the aspergillus allergy and staph aureus. They treated her with IV antibiotics for the staph but she's had reoccurring staph for years and it's previously been treated with oral meds successfully. It's only prednisone that they are using for the aspergillus allergy and there has been no effect after a month of 60mg prednisone daily.


PT: She does physio with a PEP mask three times daily with a salbutamol puffer - 200cfc

MEDS: Twelve 5mg pills equaling (60mg) prednisone(with Vitamin D and 2000 mg Calcium, ADEK), 50mcg of Fluticasone - two sprays in each nostril twice daily,

NEB: 1.5ml Saline mixed with 2ml Pulmicort and .5ml of Ventolin twice daily
 
M

myfanwy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnD</b></i>
Oh also, if you don't mind sharing her daily meds/nebs/pt, that might help with some suggestions too <img src="i/expressions/face-icon-small-wink.gif" border="0"> .</end quote></div>


Thank you for the quick response! She has done two bronchs over the last year and the results were negative for everything but the aspergillus allergy and staph aureus. They treated her with IV antibiotics for the staph but she's had reoccurring staph for years and it's previously been treated with oral meds successfully. It's only prednisone that they are using for the aspergillus allergy and there has been no effect after a month of 60mg prednisone daily.


PT: She does physio with a PEP mask three times daily with a salbutamol puffer - 200cfc

MEDS: Twelve 5mg pills equaling (60mg) prednisone(with Vitamin D and 2000 mg Calcium, ADEK), 50mcg of Fluticasone - two sprays in each nostril twice daily,

NEB: 1.5ml Saline mixed with 2ml Pulmicort and .5ml of Ventolin twice daily
 
M

myfanwy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnD</b></i>
Oh also, if you don't mind sharing her daily meds/nebs/pt, that might help with some suggestions too <img src="i/expressions/face-icon-small-wink.gif" border="0"> .</end quote>


Thank you for the quick response! She has done two bronchs over the last year and the results were negative for everything but the aspergillus allergy and staph aureus. They treated her with IV antibiotics for the staph but she's had reoccurring staph for years and it's previously been treated with oral meds successfully. It's only prednisone that they are using for the aspergillus allergy and there has been no effect after a month of 60mg prednisone daily.


PT: She does physio with a PEP mask three times daily with a salbutamol puffer - 200cfc

MEDS: Twelve 5mg pills equaling (60mg) prednisone(with Vitamin D and 2000 mg Calcium, ADEK), 50mcg of Fluticasone - two sprays in each nostril twice daily,

NEB: 1.5ml Saline mixed with 2ml Pulmicort and .5ml of Ventolin twice daily
 
M

myfanwy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnD</b></i>
<br />Oh also, if you don't mind sharing her daily meds/nebs/pt, that might help with some suggestions too <img src="i/expressions/face-icon-small-wink.gif" border="0"> .</end quote>
<br />
<br />
<br />Thank you for the quick response! She has done two bronchs over the last year and the results were negative for everything but the aspergillus allergy and staph aureus. They treated her with IV antibiotics for the staph but she's had reoccurring staph for years and it's previously been treated with oral meds successfully. It's only prednisone that they are using for the aspergillus allergy and there has been no effect after a month of 60mg prednisone daily.
<br />
<br />
<br />PT: She does physio with a PEP mask three times daily with a salbutamol puffer - 200cfc
<br />
<br />MEDS: Twelve 5mg pills equaling (60mg) prednisone(with Vitamin D and 2000 mg Calcium, ADEK), 50mcg of Fluticasone - two sprays in each nostril twice daily,
<br />
<br />NEB: 1.5ml Saline mixed with 2ml Pulmicort and .5ml of Ventolin twice daily
<br />
<br />
 
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