Noah's first PFT

V

valigirl21

Guest
Well yesterday Noah did his first PFT and, of course, I was a wreck. He haas just gotten over a nasty pneumonia that caused some trouble to him (no hospital though thank g-d). His PFT level is 87. I don't know if that's good or bad, the nurse said its not too bad, but they had hoped for better.At the end of the test Noah was all blue around his lips and had to have a treatment. Does this happen often, or should I be concerned. I admit that his pulmonologist is not a CF specialist, and gave me the oppertunity to switch to one, but the one his practice is accossiated with is a cow, and I prefer him. He is very thorough, and has other CF pts. He is doing all kinds of tests b/c Noah's gen tests were neg. He says if Noah has one more test come back positive he will meet the criteria for CF dx. Is anyone else dx on criteria as opposed to gen.?
 
V

valigirl21

Guest
Well yesterday Noah did his first PFT and, of course, I was a wreck. He haas just gotten over a nasty pneumonia that caused some trouble to him (no hospital though thank g-d). His PFT level is 87. I don't know if that's good or bad, the nurse said its not too bad, but they had hoped for better.At the end of the test Noah was all blue around his lips and had to have a treatment. Does this happen often, or should I be concerned. I admit that his pulmonologist is not a CF specialist, and gave me the oppertunity to switch to one, but the one his practice is accossiated with is a cow, and I prefer him. He is very thorough, and has other CF pts. He is doing all kinds of tests b/c Noah's gen tests were neg. He says if Noah has one more test come back positive he will meet the criteria for CF dx. Is anyone else dx on criteria as opposed to gen.?
 
V

valigirl21

Guest
Well yesterday Noah did his first PFT and, of course, I was a wreck. He haas just gotten over a nasty pneumonia that caused some trouble to him (no hospital though thank g-d). His PFT level is 87. I don't know if that's good or bad, the nurse said its not too bad, but they had hoped for better.At the end of the test Noah was all blue around his lips and had to have a treatment. Does this happen often, or should I be concerned. I admit that his pulmonologist is not a CF specialist, and gave me the oppertunity to switch to one, but the one his practice is accossiated with is a cow, and I prefer him. He is very thorough, and has other CF pts. He is doing all kinds of tests b/c Noah's gen tests were neg. He says if Noah has one more test come back positive he will meet the criteria for CF dx. Is anyone else dx on criteria as opposed to gen.?
 
V

valigirl21

Guest
Well yesterday Noah did his first PFT and, of course, I was a wreck. He haas just gotten over a nasty pneumonia that caused some trouble to him (no hospital though thank g-d). His PFT level is 87. I don't know if that's good or bad, the nurse said its not too bad, but they had hoped for better.At the end of the test Noah was all blue around his lips and had to have a treatment. Does this happen often, or should I be concerned. I admit that his pulmonologist is not a CF specialist, and gave me the oppertunity to switch to one, but the one his practice is accossiated with is a cow, and I prefer him. He is very thorough, and has other CF pts. He is doing all kinds of tests b/c Noah's gen tests were neg. He says if Noah has one more test come back positive he will meet the criteria for CF dx. Is anyone else dx on criteria as opposed to gen.?
 
V

valigirl21

Guest
Well yesterday Noah did his first PFT and, of course, I was a wreck. He haas just gotten over a nasty pneumonia that caused some trouble to him (no hospital though thank g-d). His PFT level is 87. I don't know if that's good or bad, the nurse said its not too bad, but they had hoped for better.At the end of the test Noah was all blue around his lips and had to have a treatment. Does this happen often, or should I be concerned. I admit that his pulmonologist is not a CF specialist, and gave me the oppertunity to switch to one, but the one his practice is accossiated with is a cow, and I prefer him. He is very thorough, and has other CF pts. He is doing all kinds of tests b/c Noah's gen tests were neg. He says if Noah has one more test come back positive he will meet the criteria for CF dx. Is anyone else dx on criteria as opposed to gen.?
 
H

holmfamily1992

New member
THere are so many mutation that yes sometimes they may not find one in your son. I do believe though that if he is showing signs and his PFT's were somewhat low then you should push for CF Treatment. There is definatly a problem if he is turning blue afterwards.

Just keep asking questions. My only concern is if you dont have him seeing a CF doctor that some of the Meds may not be covered under your insurance. They can be really funny about that. Make sure you talk to your doctor about that also. Do you mind me asking what they have him on now? I am still very new to this whole thing and learning loads from the wonderful people here. Do you have any other CF clinics close to you and where did they send his blood for genetic testing?

Hang in there and keep your head up, Tina
 
H

holmfamily1992

New member
THere are so many mutation that yes sometimes they may not find one in your son. I do believe though that if he is showing signs and his PFT's were somewhat low then you should push for CF Treatment. There is definatly a problem if he is turning blue afterwards.

Just keep asking questions. My only concern is if you dont have him seeing a CF doctor that some of the Meds may not be covered under your insurance. They can be really funny about that. Make sure you talk to your doctor about that also. Do you mind me asking what they have him on now? I am still very new to this whole thing and learning loads from the wonderful people here. Do you have any other CF clinics close to you and where did they send his blood for genetic testing?

Hang in there and keep your head up, Tina
 
H

holmfamily1992

New member
THere are so many mutation that yes sometimes they may not find one in your son. I do believe though that if he is showing signs and his PFT's were somewhat low then you should push for CF Treatment. There is definatly a problem if he is turning blue afterwards.

Just keep asking questions. My only concern is if you dont have him seeing a CF doctor that some of the Meds may not be covered under your insurance. They can be really funny about that. Make sure you talk to your doctor about that also. Do you mind me asking what they have him on now? I am still very new to this whole thing and learning loads from the wonderful people here. Do you have any other CF clinics close to you and where did they send his blood for genetic testing?

Hang in there and keep your head up, Tina
 
H

holmfamily1992

New member
THere are so many mutation that yes sometimes they may not find one in your son. I do believe though that if he is showing signs and his PFT's were somewhat low then you should push for CF Treatment. There is definatly a problem if he is turning blue afterwards.

Just keep asking questions. My only concern is if you dont have him seeing a CF doctor that some of the Meds may not be covered under your insurance. They can be really funny about that. Make sure you talk to your doctor about that also. Do you mind me asking what they have him on now? I am still very new to this whole thing and learning loads from the wonderful people here. Do you have any other CF clinics close to you and where did they send his blood for genetic testing?

Hang in there and keep your head up, Tina
 
H

holmfamily1992

New member
THere are so many mutation that yes sometimes they may not find one in your son. I do believe though that if he is showing signs and his PFT's were somewhat low then you should push for CF Treatment. There is definatly a problem if he is turning blue afterwards.
<br />
<br />Just keep asking questions. My only concern is if you dont have him seeing a CF doctor that some of the Meds may not be covered under your insurance. They can be really funny about that. Make sure you talk to your doctor about that also. Do you mind me asking what they have him on now? I am still very new to this whole thing and learning loads from the wonderful people here. Do you have any other CF clinics close to you and where did they send his blood for genetic testing?
<br />
<br />Hang in there and keep your head up, Tina
 
L

letefk

New member
It is hard to judge too much from one PFT, especially the first, because a child often has a learning curve on the technique. Still, 87 means that the results are 87% of "normal" lung function (in a non CF child). You want that number as high as it can be. I think you want to make sure your child is getting treated as aggressively as needed, and that you pursue clarifying IF this is CF.

Both Tina and I have children that have atypical forms of CF, and in those cases, it takes a full scale Ambry panel to find the genes. There are different kinds of genetic tests, and some just test for the most common genes. Do you know what sort of genetic test you had? Ask if you had a full Ambry test.

I can understand your concern about not liking the CF doctor. Like Tina suggests, I would look to see if there are other clinics in the area (or another doctor at that clinic). We had serious personality issues with our first CF doctor. I would often leave clinic visits in tears. BUT... he was very aggressive and very good in treating CF. We owe him a lot for his help in making the diagnosis and ending the cycle of pneumonias. Since then, we found another clinic a bit further away, but with a wonderful pair of CF doctors.

A CF clinic is going to be up on the newest information. If this is atypical CF, that can be very important. You can find CF centers on the cystic fibrosis foundation website. We drive two hours to our clinic, but our local pediatrician works closely with the clinic, and it has worked out well for us.

Like Tina, if you want to post more about what treatments you do, we can at least tell you how it compares to what a typical clinic might offer.
 
L

letefk

New member
It is hard to judge too much from one PFT, especially the first, because a child often has a learning curve on the technique. Still, 87 means that the results are 87% of "normal" lung function (in a non CF child). You want that number as high as it can be. I think you want to make sure your child is getting treated as aggressively as needed, and that you pursue clarifying IF this is CF.

Both Tina and I have children that have atypical forms of CF, and in those cases, it takes a full scale Ambry panel to find the genes. There are different kinds of genetic tests, and some just test for the most common genes. Do you know what sort of genetic test you had? Ask if you had a full Ambry test.

I can understand your concern about not liking the CF doctor. Like Tina suggests, I would look to see if there are other clinics in the area (or another doctor at that clinic). We had serious personality issues with our first CF doctor. I would often leave clinic visits in tears. BUT... he was very aggressive and very good in treating CF. We owe him a lot for his help in making the diagnosis and ending the cycle of pneumonias. Since then, we found another clinic a bit further away, but with a wonderful pair of CF doctors.

A CF clinic is going to be up on the newest information. If this is atypical CF, that can be very important. You can find CF centers on the cystic fibrosis foundation website. We drive two hours to our clinic, but our local pediatrician works closely with the clinic, and it has worked out well for us.

Like Tina, if you want to post more about what treatments you do, we can at least tell you how it compares to what a typical clinic might offer.
 
L

letefk

New member
It is hard to judge too much from one PFT, especially the first, because a child often has a learning curve on the technique. Still, 87 means that the results are 87% of "normal" lung function (in a non CF child). You want that number as high as it can be. I think you want to make sure your child is getting treated as aggressively as needed, and that you pursue clarifying IF this is CF.

Both Tina and I have children that have atypical forms of CF, and in those cases, it takes a full scale Ambry panel to find the genes. There are different kinds of genetic tests, and some just test for the most common genes. Do you know what sort of genetic test you had? Ask if you had a full Ambry test.

I can understand your concern about not liking the CF doctor. Like Tina suggests, I would look to see if there are other clinics in the area (or another doctor at that clinic). We had serious personality issues with our first CF doctor. I would often leave clinic visits in tears. BUT... he was very aggressive and very good in treating CF. We owe him a lot for his help in making the diagnosis and ending the cycle of pneumonias. Since then, we found another clinic a bit further away, but with a wonderful pair of CF doctors.

A CF clinic is going to be up on the newest information. If this is atypical CF, that can be very important. You can find CF centers on the cystic fibrosis foundation website. We drive two hours to our clinic, but our local pediatrician works closely with the clinic, and it has worked out well for us.

Like Tina, if you want to post more about what treatments you do, we can at least tell you how it compares to what a typical clinic might offer.
 
L

letefk

New member
It is hard to judge too much from one PFT, especially the first, because a child often has a learning curve on the technique. Still, 87 means that the results are 87% of "normal" lung function (in a non CF child). You want that number as high as it can be. I think you want to make sure your child is getting treated as aggressively as needed, and that you pursue clarifying IF this is CF.

Both Tina and I have children that have atypical forms of CF, and in those cases, it takes a full scale Ambry panel to find the genes. There are different kinds of genetic tests, and some just test for the most common genes. Do you know what sort of genetic test you had? Ask if you had a full Ambry test.

I can understand your concern about not liking the CF doctor. Like Tina suggests, I would look to see if there are other clinics in the area (or another doctor at that clinic). We had serious personality issues with our first CF doctor. I would often leave clinic visits in tears. BUT... he was very aggressive and very good in treating CF. We owe him a lot for his help in making the diagnosis and ending the cycle of pneumonias. Since then, we found another clinic a bit further away, but with a wonderful pair of CF doctors.

A CF clinic is going to be up on the newest information. If this is atypical CF, that can be very important. You can find CF centers on the cystic fibrosis foundation website. We drive two hours to our clinic, but our local pediatrician works closely with the clinic, and it has worked out well for us.

Like Tina, if you want to post more about what treatments you do, we can at least tell you how it compares to what a typical clinic might offer.
 
L

letefk

New member
It is hard to judge too much from one PFT, especially the first, because a child often has a learning curve on the technique. Still, 87 means that the results are 87% of "normal" lung function (in a non CF child). You want that number as high as it can be. I think you want to make sure your child is getting treated as aggressively as needed, and that you pursue clarifying IF this is CF.
<br />
<br />Both Tina and I have children that have atypical forms of CF, and in those cases, it takes a full scale Ambry panel to find the genes. There are different kinds of genetic tests, and some just test for the most common genes. Do you know what sort of genetic test you had? Ask if you had a full Ambry test.
<br />
<br />I can understand your concern about not liking the CF doctor. Like Tina suggests, I would look to see if there are other clinics in the area (or another doctor at that clinic). We had serious personality issues with our first CF doctor. I would often leave clinic visits in tears. BUT... he was very aggressive and very good in treating CF. We owe him a lot for his help in making the diagnosis and ending the cycle of pneumonias. Since then, we found another clinic a bit further away, but with a wonderful pair of CF doctors.
<br />
<br />A CF clinic is going to be up on the newest information. If this is atypical CF, that can be very important. You can find CF centers on the cystic fibrosis foundation website. We drive two hours to our clinic, but our local pediatrician works closely with the clinic, and it has worked out well for us.
<br />
<br />Like Tina, if you want to post more about what treatments you do, we can at least tell you how it compares to what a typical clinic might offer.
 
C

Cherylwithone

Guest
Technique does have alot to do with it. It also depends on the machine. My daughter did hers in the alergie clinic and she blew something like 83. I go more by the CF clinics machine. Although 83 is about right for her. Height, weight room air everything comes into to play. Once they have a baseline you will know what is normal for him and what is'nt. ALso ask for a print out of his PFT's. This way you have a record for yourself. If you don't know how to read them there is a thread here somewhere that has the infor. Also, you can ask and someone will post on how to read them.

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
Technique does have alot to do with it. It also depends on the machine. My daughter did hers in the alergie clinic and she blew something like 83. I go more by the CF clinics machine. Although 83 is about right for her. Height, weight room air everything comes into to play. Once they have a baseline you will know what is normal for him and what is'nt. ALso ask for a print out of his PFT's. This way you have a record for yourself. If you don't know how to read them there is a thread here somewhere that has the infor. Also, you can ask and someone will post on how to read them.

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
Technique does have alot to do with it. It also depends on the machine. My daughter did hers in the alergie clinic and she blew something like 83. I go more by the CF clinics machine. Although 83 is about right for her. Height, weight room air everything comes into to play. Once they have a baseline you will know what is normal for him and what is'nt. ALso ask for a print out of his PFT's. This way you have a record for yourself. If you don't know how to read them there is a thread here somewhere that has the infor. Also, you can ask and someone will post on how to read them.

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
Technique does have alot to do with it. It also depends on the machine. My daughter did hers in the alergie clinic and she blew something like 83. I go more by the CF clinics machine. Although 83 is about right for her. Height, weight room air everything comes into to play. Once they have a baseline you will know what is normal for him and what is'nt. ALso ask for a print out of his PFT's. This way you have a record for yourself. If you don't know how to read them there is a thread here somewhere that has the infor. Also, you can ask and someone will post on how to read them.

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
Technique does have alot to do with it. It also depends on the machine. My daughter did hers in the alergie clinic and she blew something like 83. I go more by the CF clinics machine. Although 83 is about right for her. Height, weight room air everything comes into to play. Once they have a baseline you will know what is normal for him and what is'nt. ALso ask for a print out of his PFT's. This way you have a record for yourself. If you don't know how to read them there is a thread here somewhere that has the infor. Also, you can ask and someone will post on how to read them.
<br />
<br />Cheryl mom to Malora 15 w/cf
 
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