new and unsure

L

LouLou

New member
If she comes back negative on the sweat test I would insist on genetic sequencing. Do not be convinced that a genetic panel test is sufficient after all most people with those mutations would fail the sweat test. The sequencing test will look for the lesser common mutations. You want to get to the bottom of what is wrong with her ASAP. Especially if it's cf time is of the essence. Each day that passes is one that you could have done some preventative care for her. At least that's my opinion.

0-20 is considered negative sweat value.
40-60 borderline
80+ positive cf

You can see it is a rather crude test. If it's positive it's no doubt cf but there are A LOT of false negatives. I'd hate for you to think your dd definitely doesn't have cf if she gets a low score.

Good luck! Oh and there will probably be 2 numbers...one for each arm. I hope you took the advice to get this done at an accredited cf center. If not, if you get a negative I'd considered redoing it. Be her advocate!
 
L

LouLou

New member
If she comes back negative on the sweat test I would insist on genetic sequencing. Do not be convinced that a genetic panel test is sufficient after all most people with those mutations would fail the sweat test. The sequencing test will look for the lesser common mutations. You want to get to the bottom of what is wrong with her ASAP. Especially if it's cf time is of the essence. Each day that passes is one that you could have done some preventative care for her. At least that's my opinion.

0-20 is considered negative sweat value.
40-60 borderline
80+ positive cf

You can see it is a rather crude test. If it's positive it's no doubt cf but there are A LOT of false negatives. I'd hate for you to think your dd definitely doesn't have cf if she gets a low score.

Good luck! Oh and there will probably be 2 numbers...one for each arm. I hope you took the advice to get this done at an accredited cf center. If not, if you get a negative I'd considered redoing it. Be her advocate!
 
L

LouLou

New member
If she comes back negative on the sweat test I would insist on genetic sequencing. Do not be convinced that a genetic panel test is sufficient after all most people with those mutations would fail the sweat test. The sequencing test will look for the lesser common mutations. You want to get to the bottom of what is wrong with her ASAP. Especially if it's cf time is of the essence. Each day that passes is one that you could have done some preventative care for her. At least that's my opinion.

0-20 is considered negative sweat value.
40-60 borderline
80+ positive cf

You can see it is a rather crude test. If it's positive it's no doubt cf but there are A LOT of false negatives. I'd hate for you to think your dd definitely doesn't have cf if she gets a low score.

Good luck! Oh and there will probably be 2 numbers...one for each arm. I hope you took the advice to get this done at an accredited cf center. If not, if you get a negative I'd considered redoing it. Be her advocate!
 
L

LouLou

New member
If she comes back negative on the sweat test I would insist on genetic sequencing. Do not be convinced that a genetic panel test is sufficient after all most people with those mutations would fail the sweat test. The sequencing test will look for the lesser common mutations. You want to get to the bottom of what is wrong with her ASAP. Especially if it's cf time is of the essence. Each day that passes is one that you could have done some preventative care for her. At least that's my opinion.

0-20 is considered negative sweat value.
40-60 borderline
80+ positive cf

You can see it is a rather crude test. If it's positive it's no doubt cf but there are A LOT of false negatives. I'd hate for you to think your dd definitely doesn't have cf if she gets a low score.

Good luck! Oh and there will probably be 2 numbers...one for each arm. I hope you took the advice to get this done at an accredited cf center. If not, if you get a negative I'd considered redoing it. Be her advocate!
 
L

LouLou

New member
If she comes back negative on the sweat test I would insist on genetic sequencing. Do not be convinced that a genetic panel test is sufficient after all most people with those mutations would fail the sweat test. The sequencing test will look for the lesser common mutations. You want to get to the bottom of what is wrong with her ASAP. Especially if it's cf time is of the essence. Each day that passes is one that you could have done some preventative care for her. At least that's my opinion.
<br />
<br />0-20 is considered negative sweat value.
<br />40-60 borderline
<br />80+ positive cf
<br />
<br />You can see it is a rather crude test. If it's positive it's no doubt cf but there are A LOT of false negatives. I'd hate for you to think your dd definitely doesn't have cf if she gets a low score.
<br />
<br />Good luck! Oh and there will probably be 2 numbers...one for each arm. I hope you took the advice to get this done at an accredited cf center. If not, if you get a negative I'd considered redoing it. Be her advocate!
 
J

jena

New member
Ask the technician when she has her test done WHEN they are going to run the sample. Just because they collect her sweat, they may not run it right away. They may store it a few days before actually running it (perhaps their lab runs the sweat tests daily, maybe bi-weekly, maybe weekly). The lab that did my son's ran samples every day at 2:00 and would have the results around 3:30.
Once you know that, you will know when to follow up with your doctor.
If the results look like CF, they may want to repeat the test again before giving a diagnosis. My son was diagnosed clearly by his sweat test. They followed up with genetic testing (took several weeks to get that results), but that was more of a formality for us since the sweat test (twice) was so clear. I hope that IF your girl has CF, you get clear answers right away and don't have to wait for more testing. But certainly hoping that she does not have it. Best wishes on getting her better...
Jena
8yr old son with cf
4 yr old daughter no cf
 
J

jena

New member
Ask the technician when she has her test done WHEN they are going to run the sample. Just because they collect her sweat, they may not run it right away. They may store it a few days before actually running it (perhaps their lab runs the sweat tests daily, maybe bi-weekly, maybe weekly). The lab that did my son's ran samples every day at 2:00 and would have the results around 3:30.
Once you know that, you will know when to follow up with your doctor.
If the results look like CF, they may want to repeat the test again before giving a diagnosis. My son was diagnosed clearly by his sweat test. They followed up with genetic testing (took several weeks to get that results), but that was more of a formality for us since the sweat test (twice) was so clear. I hope that IF your girl has CF, you get clear answers right away and don't have to wait for more testing. But certainly hoping that she does not have it. Best wishes on getting her better...
Jena
8yr old son with cf
4 yr old daughter no cf
 
J

jena

New member
Ask the technician when she has her test done WHEN they are going to run the sample. Just because they collect her sweat, they may not run it right away. They may store it a few days before actually running it (perhaps their lab runs the sweat tests daily, maybe bi-weekly, maybe weekly). The lab that did my son's ran samples every day at 2:00 and would have the results around 3:30.
Once you know that, you will know when to follow up with your doctor.
If the results look like CF, they may want to repeat the test again before giving a diagnosis. My son was diagnosed clearly by his sweat test. They followed up with genetic testing (took several weeks to get that results), but that was more of a formality for us since the sweat test (twice) was so clear. I hope that IF your girl has CF, you get clear answers right away and don't have to wait for more testing. But certainly hoping that she does not have it. Best wishes on getting her better...
Jena
8yr old son with cf
4 yr old daughter no cf
 
J

jena

New member
Ask the technician when she has her test done WHEN they are going to run the sample. Just because they collect her sweat, they may not run it right away. They may store it a few days before actually running it (perhaps their lab runs the sweat tests daily, maybe bi-weekly, maybe weekly). The lab that did my son's ran samples every day at 2:00 and would have the results around 3:30.
Once you know that, you will know when to follow up with your doctor.
If the results look like CF, they may want to repeat the test again before giving a diagnosis. My son was diagnosed clearly by his sweat test. They followed up with genetic testing (took several weeks to get that results), but that was more of a formality for us since the sweat test (twice) was so clear. I hope that IF your girl has CF, you get clear answers right away and don't have to wait for more testing. But certainly hoping that she does not have it. Best wishes on getting her better...
Jena
8yr old son with cf
4 yr old daughter no cf
 
J

jena

New member
Ask the technician when she has her test done WHEN they are going to run the sample. Just because they collect her sweat, they may not run it right away. They may store it a few days before actually running it (perhaps their lab runs the sweat tests daily, maybe bi-weekly, maybe weekly). The lab that did my son's ran samples every day at 2:00 and would have the results around 3:30.
<br />Once you know that, you will know when to follow up with your doctor.
<br />If the results look like CF, they may want to repeat the test again before giving a diagnosis. My son was diagnosed clearly by his sweat test. They followed up with genetic testing (took several weeks to get that results), but that was more of a formality for us since the sweat test (twice) was so clear. I hope that IF your girl has CF, you get clear answers right away and don't have to wait for more testing. But certainly hoping that she does not have it. Best wishes on getting her better...
<br />Jena
<br />8yr old son with cf
<br />4 yr old daughter no cf
 
C

cjqueensmom

New member
Sometimes you have to push......we went through three months of being sick and finally got put in the hospital for what they thought was RSV...............but i pushed hard and was very confrotational with the doc.....and finally they gave me a student that wanted to learn and find out what was wrong.....with a sweat test and a test they did on her poop...they finally found CF......it is scary.......but now she is a thriving 10 year old that lives life to the fullest..............GOOD LUCK to ya.....
 
C

cjqueensmom

New member
Sometimes you have to push......we went through three months of being sick and finally got put in the hospital for what they thought was RSV...............but i pushed hard and was very confrotational with the doc.....and finally they gave me a student that wanted to learn and find out what was wrong.....with a sweat test and a test they did on her poop...they finally found CF......it is scary.......but now she is a thriving 10 year old that lives life to the fullest..............GOOD LUCK to ya.....
 
C

cjqueensmom

New member
Sometimes you have to push......we went through three months of being sick and finally got put in the hospital for what they thought was RSV...............but i pushed hard and was very confrotational with the doc.....and finally they gave me a student that wanted to learn and find out what was wrong.....with a sweat test and a test they did on her poop...they finally found CF......it is scary.......but now she is a thriving 10 year old that lives life to the fullest..............GOOD LUCK to ya.....
 
C

cjqueensmom

New member
Sometimes you have to push......we went through three months of being sick and finally got put in the hospital for what they thought was RSV...............but i pushed hard and was very confrotational with the doc.....and finally they gave me a student that wanted to learn and find out what was wrong.....with a sweat test and a test they did on her poop...they finally found CF......it is scary.......but now she is a thriving 10 year old that lives life to the fullest..............GOOD LUCK to ya.....
 
C

cjqueensmom

New member
Sometimes you have to push......we went through three months of being sick and finally got put in the hospital for what they thought was RSV...............but i pushed hard and was very confrotational with the doc.....and finally they gave me a student that wanted to learn and find out what was wrong.....with a sweat test and a test they did on her poop...they finally found CF......it is scary.......but now she is a thriving 10 year old that lives life to the fullest..............GOOD LUCK to ya.....
 
J

jenniferdoss

New member
I really appreciate all the information I am getting from you guys. I know the Dr. is only doing the sweat test because I asked and to appease me. She said it will rule it out and then we can move on and look for other things. If the sweat test is negative, I will push for genetic testing. Does that only test for CF or other diseases too? I really hope we get a clear answer tomorrow. My Dr. isn't very good at calling with results. I will have to keep calling but I will definitely ask what time they process them. It isn't at an accredited center because we don't have one nearby so my Dr. had to refer us and she only referred to the one in town. If it is negative I will have to decide whether to just push for the genetic test or to request another referral to an accredited site. I just have to wait til tomorrow. Thanks for the warm thoughts. I will keep everyone updated tomorrow or the next day depending on when I get the results.
 
J

jenniferdoss

New member
I really appreciate all the information I am getting from you guys. I know the Dr. is only doing the sweat test because I asked and to appease me. She said it will rule it out and then we can move on and look for other things. If the sweat test is negative, I will push for genetic testing. Does that only test for CF or other diseases too? I really hope we get a clear answer tomorrow. My Dr. isn't very good at calling with results. I will have to keep calling but I will definitely ask what time they process them. It isn't at an accredited center because we don't have one nearby so my Dr. had to refer us and she only referred to the one in town. If it is negative I will have to decide whether to just push for the genetic test or to request another referral to an accredited site. I just have to wait til tomorrow. Thanks for the warm thoughts. I will keep everyone updated tomorrow or the next day depending on when I get the results.
 
J

jenniferdoss

New member
I really appreciate all the information I am getting from you guys. I know the Dr. is only doing the sweat test because I asked and to appease me. She said it will rule it out and then we can move on and look for other things. If the sweat test is negative, I will push for genetic testing. Does that only test for CF or other diseases too? I really hope we get a clear answer tomorrow. My Dr. isn't very good at calling with results. I will have to keep calling but I will definitely ask what time they process them. It isn't at an accredited center because we don't have one nearby so my Dr. had to refer us and she only referred to the one in town. If it is negative I will have to decide whether to just push for the genetic test or to request another referral to an accredited site. I just have to wait til tomorrow. Thanks for the warm thoughts. I will keep everyone updated tomorrow or the next day depending on when I get the results.
 
J

jenniferdoss

New member
I really appreciate all the information I am getting from you guys. I know the Dr. is only doing the sweat test because I asked and to appease me. She said it will rule it out and then we can move on and look for other things. If the sweat test is negative, I will push for genetic testing. Does that only test for CF or other diseases too? I really hope we get a clear answer tomorrow. My Dr. isn't very good at calling with results. I will have to keep calling but I will definitely ask what time they process them. It isn't at an accredited center because we don't have one nearby so my Dr. had to refer us and she only referred to the one in town. If it is negative I will have to decide whether to just push for the genetic test or to request another referral to an accredited site. I just have to wait til tomorrow. Thanks for the warm thoughts. I will keep everyone updated tomorrow or the next day depending on when I get the results.
 
J

jenniferdoss

New member
I really appreciate all the information I am getting from you guys. I know the Dr. is only doing the sweat test because I asked and to appease me. She said it will rule it out and then we can move on and look for other things. If the sweat test is negative, I will push for genetic testing. Does that only test for CF or other diseases too? I really hope we get a clear answer tomorrow. My Dr. isn't very good at calling with results. I will have to keep calling but I will definitely ask what time they process them. It isn't at an accredited center because we don't have one nearby so my Dr. had to refer us and she only referred to the one in town. If it is negative I will have to decide whether to just push for the genetic test or to request another referral to an accredited site. I just have to wait til tomorrow. Thanks for the warm thoughts. I will keep everyone updated tomorrow or the next day depending on when I get the results.
 
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