Frustrated with PFTs - Need Suggestions.

M

myfanwy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>pjspiegle</b></i>
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.</end quote></div>

A sputum induction isn't something I've heard of before..how interesting. The thing is that she's not on any antibiotics other than prednisone right now. We also had a slight collapse on the left lingula(sp?) last year which was around the time the pfts started to go down. I'm not familiary with some of the bugs you mentioned but I'll bring them up to her doctors. thanks, Andrew!
 
M

myfanwy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>pjspiegle</b></i>
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.</end quote></div>

A sputum induction isn't something I've heard of before..how interesting. The thing is that she's not on any antibiotics other than prednisone right now. We also had a slight collapse on the left lingula(sp?) last year which was around the time the pfts started to go down. I'm not familiary with some of the bugs you mentioned but I'll bring them up to her doctors. thanks, Andrew!
 
M

myfanwy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>pjspiegle</b></i>
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.</end quote></div>

A sputum induction isn't something I've heard of before..how interesting. The thing is that she's not on any antibiotics other than prednisone right now. We also had a slight collapse on the left lingula(sp?) last year which was around the time the pfts started to go down. I'm not familiary with some of the bugs you mentioned but I'll bring them up to her doctors. thanks, Andrew!
 
M

myfanwy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>pjspiegle</b></i>
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.</end quote>

A sputum induction isn't something I've heard of before..how interesting. The thing is that she's not on any antibiotics other than prednisone right now. We also had a slight collapse on the left lingula(sp?) last year which was around the time the pfts started to go down. I'm not familiary with some of the bugs you mentioned but I'll bring them up to her doctors. thanks, Andrew!
 
M

myfanwy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>pjspiegle</b></i>
<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.</end quote>
<br />
<br />A sputum induction isn't something I've heard of before..how interesting. The thing is that she's not on any antibiotics other than prednisone right now. We also had a slight collapse on the left lingula(sp?) last year which was around the time the pfts started to go down. I'm not familiary with some of the bugs you mentioned but I'll bring them up to her doctors. thanks, Andrew!
<br />
<br />
 
P

pjspiegle

New member
Do you know why they don't have her on an anti-fungal such as sporonox for the aspergillis? It seems odd to me that they have her on pred without the spornox or fluconazole to treat the aspergillis. Predisone is not an antibiotic and I am pretty sure you are not going to get rid of the aspergillis without spornox or fluconazole along with the Predisone.

Again, just my experience, but no wonder she is having issues with her PFT's. I would think that in your case, you might ask about the sporonox and something like Doxy for the staph. In our case, we were covering things up because we were on several antibiotics but maybe in your case you need some antibiotics. Untreated staph and aspergillis is enough to lower PFT's even if she isn't really having any other "symptoms" for the two things.

I think if I were in your shoes I would really question why you are not on any antibiotics. You can research the web for Aspergillis in Cystic Fibrosis and it will tell you the treatment is 3 or more months, usually with the first 3 months of pred w/spornox or fluconazole and then another 3 months of spronox or fluconazole, sometimes 3 months is enough other times it takes longer as in our case we have been treating it for almost 2 years now. Just an FYI, I was told by an adult CF patient that it needs to be the liquid form of the spornox or fluconazole to get the best results because they don't absorb the pill as well as the liquid.

I know that if I am persistant and ask for things for my son I often get further than if I wait for them to decide maybe they should treat it with something.

An induced sputum is very effective for some patients. They do hypertonic nebs followed with huff coughs with the RT for 15-30 minutes with a special nebulizer that helps get junk up even with those who do not normally produce any sputum. Nathan does not always produce sputum but he does every time with the induction method.

Again, Keep us posted, hope this helps some,

Patty
 
P

pjspiegle

New member
Do you know why they don't have her on an anti-fungal such as sporonox for the aspergillis? It seems odd to me that they have her on pred without the spornox or fluconazole to treat the aspergillis. Predisone is not an antibiotic and I am pretty sure you are not going to get rid of the aspergillis without spornox or fluconazole along with the Predisone.

Again, just my experience, but no wonder she is having issues with her PFT's. I would think that in your case, you might ask about the sporonox and something like Doxy for the staph. In our case, we were covering things up because we were on several antibiotics but maybe in your case you need some antibiotics. Untreated staph and aspergillis is enough to lower PFT's even if she isn't really having any other "symptoms" for the two things.

I think if I were in your shoes I would really question why you are not on any antibiotics. You can research the web for Aspergillis in Cystic Fibrosis and it will tell you the treatment is 3 or more months, usually with the first 3 months of pred w/spornox or fluconazole and then another 3 months of spronox or fluconazole, sometimes 3 months is enough other times it takes longer as in our case we have been treating it for almost 2 years now. Just an FYI, I was told by an adult CF patient that it needs to be the liquid form of the spornox or fluconazole to get the best results because they don't absorb the pill as well as the liquid.

I know that if I am persistant and ask for things for my son I often get further than if I wait for them to decide maybe they should treat it with something.

An induced sputum is very effective for some patients. They do hypertonic nebs followed with huff coughs with the RT for 15-30 minutes with a special nebulizer that helps get junk up even with those who do not normally produce any sputum. Nathan does not always produce sputum but he does every time with the induction method.

Again, Keep us posted, hope this helps some,

Patty
 
P

pjspiegle

New member
Do you know why they don't have her on an anti-fungal such as sporonox for the aspergillis? It seems odd to me that they have her on pred without the spornox or fluconazole to treat the aspergillis. Predisone is not an antibiotic and I am pretty sure you are not going to get rid of the aspergillis without spornox or fluconazole along with the Predisone.

Again, just my experience, but no wonder she is having issues with her PFT's. I would think that in your case, you might ask about the sporonox and something like Doxy for the staph. In our case, we were covering things up because we were on several antibiotics but maybe in your case you need some antibiotics. Untreated staph and aspergillis is enough to lower PFT's even if she isn't really having any other "symptoms" for the two things.

I think if I were in your shoes I would really question why you are not on any antibiotics. You can research the web for Aspergillis in Cystic Fibrosis and it will tell you the treatment is 3 or more months, usually with the first 3 months of pred w/spornox or fluconazole and then another 3 months of spronox or fluconazole, sometimes 3 months is enough other times it takes longer as in our case we have been treating it for almost 2 years now. Just an FYI, I was told by an adult CF patient that it needs to be the liquid form of the spornox or fluconazole to get the best results because they don't absorb the pill as well as the liquid.

I know that if I am persistant and ask for things for my son I often get further than if I wait for them to decide maybe they should treat it with something.

An induced sputum is very effective for some patients. They do hypertonic nebs followed with huff coughs with the RT for 15-30 minutes with a special nebulizer that helps get junk up even with those who do not normally produce any sputum. Nathan does not always produce sputum but he does every time with the induction method.

Again, Keep us posted, hope this helps some,

Patty
 
P

pjspiegle

New member
Do you know why they don't have her on an anti-fungal such as sporonox for the aspergillis? It seems odd to me that they have her on pred without the spornox or fluconazole to treat the aspergillis. Predisone is not an antibiotic and I am pretty sure you are not going to get rid of the aspergillis without spornox or fluconazole along with the Predisone.

Again, just my experience, but no wonder she is having issues with her PFT's. I would think that in your case, you might ask about the sporonox and something like Doxy for the staph. In our case, we were covering things up because we were on several antibiotics but maybe in your case you need some antibiotics. Untreated staph and aspergillis is enough to lower PFT's even if she isn't really having any other "symptoms" for the two things.

I think if I were in your shoes I would really question why you are not on any antibiotics. You can research the web for Aspergillis in Cystic Fibrosis and it will tell you the treatment is 3 or more months, usually with the first 3 months of pred w/spornox or fluconazole and then another 3 months of spronox or fluconazole, sometimes 3 months is enough other times it takes longer as in our case we have been treating it for almost 2 years now. Just an FYI, I was told by an adult CF patient that it needs to be the liquid form of the spornox or fluconazole to get the best results because they don't absorb the pill as well as the liquid.

I know that if I am persistant and ask for things for my son I often get further than if I wait for them to decide maybe they should treat it with something.

An induced sputum is very effective for some patients. They do hypertonic nebs followed with huff coughs with the RT for 15-30 minutes with a special nebulizer that helps get junk up even with those who do not normally produce any sputum. Nathan does not always produce sputum but he does every time with the induction method.

Again, Keep us posted, hope this helps some,

Patty
 
P

pjspiegle

New member
Do you know why they don't have her on an anti-fungal such as sporonox for the aspergillis? It seems odd to me that they have her on pred without the spornox or fluconazole to treat the aspergillis. Predisone is not an antibiotic and I am pretty sure you are not going to get rid of the aspergillis without spornox or fluconazole along with the Predisone.
<br />
<br />Again, just my experience, but no wonder she is having issues with her PFT's. I would think that in your case, you might ask about the sporonox and something like Doxy for the staph. In our case, we were covering things up because we were on several antibiotics but maybe in your case you need some antibiotics. Untreated staph and aspergillis is enough to lower PFT's even if she isn't really having any other "symptoms" for the two things.
<br />
<br />I think if I were in your shoes I would really question why you are not on any antibiotics. You can research the web for Aspergillis in Cystic Fibrosis and it will tell you the treatment is 3 or more months, usually with the first 3 months of pred w/spornox or fluconazole and then another 3 months of spronox or fluconazole, sometimes 3 months is enough other times it takes longer as in our case we have been treating it for almost 2 years now. Just an FYI, I was told by an adult CF patient that it needs to be the liquid form of the spornox or fluconazole to get the best results because they don't absorb the pill as well as the liquid.
<br />
<br />I know that if I am persistant and ask for things for my son I often get further than if I wait for them to decide maybe they should treat it with something.
<br />
<br />An induced sputum is very effective for some patients. They do hypertonic nebs followed with huff coughs with the RT for 15-30 minutes with a special nebulizer that helps get junk up even with those who do not normally produce any sputum. Nathan does not always produce sputum but he does every time with the induction method.
<br />
<br />Again, Keep us posted, hope this helps some,
<br />
<br />Patty
 
M

myfanwy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>pjspiegle</b></i>
Do you know why they don't have her on an anti-fungal such as sporonox for the aspergillis? It seems odd to me that they have her on pred without the spornox or fluconazole to treat the aspergillis. Predisone is not an antibiotic and I am pretty sure you are not going to get rid of the aspergillis without spornox or fluconazole along with the Predisone.
Patty</end quote></div>

Thanks Patty! My daughter was on fluconazole previously but stopped. I can't remember why we stopped, I'll have to ask but I don't believe it provided any results. She did have staph before but we killed that with antibiotics..right now she's testing negative for everything..The one thing that I forgot to mention was that this all started last year when she had a slight collapse of the left lingular lobe..I'm thinking that must be it as it's never fully opened up..we are doing three physios/day now...I'm going to bring up the induced sputum and print off your email for our doctors for our upcoming appt..thanks again, Andrew.
 
M

myfanwy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>pjspiegle</b></i>
Do you know why they don't have her on an anti-fungal such as sporonox for the aspergillis? It seems odd to me that they have her on pred without the spornox or fluconazole to treat the aspergillis. Predisone is not an antibiotic and I am pretty sure you are not going to get rid of the aspergillis without spornox or fluconazole along with the Predisone.
Patty</end quote></div>

Thanks Patty! My daughter was on fluconazole previously but stopped. I can't remember why we stopped, I'll have to ask but I don't believe it provided any results. She did have staph before but we killed that with antibiotics..right now she's testing negative for everything..The one thing that I forgot to mention was that this all started last year when she had a slight collapse of the left lingular lobe..I'm thinking that must be it as it's never fully opened up..we are doing three physios/day now...I'm going to bring up the induced sputum and print off your email for our doctors for our upcoming appt..thanks again, Andrew.
 
M

myfanwy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>pjspiegle</b></i>
Do you know why they don't have her on an anti-fungal such as sporonox for the aspergillis? It seems odd to me that they have her on pred without the spornox or fluconazole to treat the aspergillis. Predisone is not an antibiotic and I am pretty sure you are not going to get rid of the aspergillis without spornox or fluconazole along with the Predisone.
Patty</end quote></div>

Thanks Patty! My daughter was on fluconazole previously but stopped. I can't remember why we stopped, I'll have to ask but I don't believe it provided any results. She did have staph before but we killed that with antibiotics..right now she's testing negative for everything..The one thing that I forgot to mention was that this all started last year when she had a slight collapse of the left lingular lobe..I'm thinking that must be it as it's never fully opened up..we are doing three physios/day now...I'm going to bring up the induced sputum and print off your email for our doctors for our upcoming appt..thanks again, Andrew.
 
M

myfanwy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>pjspiegle</b></i>
Do you know why they don't have her on an anti-fungal such as sporonox for the aspergillis? It seems odd to me that they have her on pred without the spornox or fluconazole to treat the aspergillis. Predisone is not an antibiotic and I am pretty sure you are not going to get rid of the aspergillis without spornox or fluconazole along with the Predisone.
Patty</end quote>

Thanks Patty! My daughter was on fluconazole previously but stopped. I can't remember why we stopped, I'll have to ask but I don't believe it provided any results. She did have staph before but we killed that with antibiotics..right now she's testing negative for everything..The one thing that I forgot to mention was that this all started last year when she had a slight collapse of the left lingular lobe..I'm thinking that must be it as it's never fully opened up..we are doing three physios/day now...I'm going to bring up the induced sputum and print off your email for our doctors for our upcoming appt..thanks again, Andrew.
 
M

myfanwy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>pjspiegle</b></i>
<br />Do you know why they don't have her on an anti-fungal such as sporonox for the aspergillis? It seems odd to me that they have her on pred without the spornox or fluconazole to treat the aspergillis. Predisone is not an antibiotic and I am pretty sure you are not going to get rid of the aspergillis without spornox or fluconazole along with the Predisone.
<br />Patty</end quote>
<br />
<br />Thanks Patty! My daughter was on fluconazole previously but stopped. I can't remember why we stopped, I'll have to ask but I don't believe it provided any results. She did have staph before but we killed that with antibiotics..right now she's testing negative for everything..The one thing that I forgot to mention was that this all started last year when she had a slight collapse of the left lingular lobe..I'm thinking that must be it as it's never fully opened up..we are doing three physios/day now...I'm going to bring up the induced sputum and print off your email for our doctors for our upcoming appt..thanks again, Andrew.
<br />
<br />
 
P

pjspiegle

New member
ok, that makes more sense to me now. I hope that they will try the induction and that it will produce some results and answers for you.
Thanks for the update, will keep an eye out for further updates as you hopefully learn more about what is going on,

Patty
 
P

pjspiegle

New member
ok, that makes more sense to me now. I hope that they will try the induction and that it will produce some results and answers for you.
Thanks for the update, will keep an eye out for further updates as you hopefully learn more about what is going on,

Patty
 
P

pjspiegle

New member
ok, that makes more sense to me now. I hope that they will try the induction and that it will produce some results and answers for you.
Thanks for the update, will keep an eye out for further updates as you hopefully learn more about what is going on,

Patty
 
P

pjspiegle

New member
ok, that makes more sense to me now. I hope that they will try the induction and that it will produce some results and answers for you.
Thanks for the update, will keep an eye out for further updates as you hopefully learn more about what is going on,

Patty
 
P

pjspiegle

New member
ok, that makes more sense to me now. I hope that they will try the induction and that it will produce some results and answers for you.
<br />Thanks for the update, will keep an eye out for further updates as you hopefully learn more about what is going on,
<br />
<br />Patty
 
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