At my daughters 9 month checkup our pediatrician wanted to test for CF and she brought the head of peds in and he agreed. We went for a sweat test the following week and when i called in for the results i was told they were fine only to recieve a phone call a minute later telling me they didn't recieve enough sweat and that we would have to go back. It took 2 weeks to get in for another one it was on 5/24. I called that day for the results and was told by the nurse that everything came back normal. Well this morning i recieved a phone call from the dr's office sending her on a referal to see a pulmenologist the person scheduling appt didn't know what it was for. I called back and asked to speak to my dr but the nurse called me back. She told me that her results had come back normal but borderline I asked how it was normal and borderline. I asked for the number and it was 68 and what i have seen 40-60 is borderline and 60 and above is postive. I no longer trust what the dr's office i don't belive they have any idea. I was hoping someone w/ experience could inform me on what the ranges are and if 68 is borderline or what exactly it is.
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68 sweat test result
- Thread starter avee725
- Start date
At my daughters 9 month checkup our pediatrician wanted to test for CF and she brought the head of peds in and he agreed. We went for a sweat test the following week and when i called in for the results i was told they were fine only to recieve a phone call a minute later telling me they didn't recieve enough sweat and that we would have to go back. It took 2 weeks to get in for another one it was on 5/24. I called that day for the results and was told by the nurse that everything came back normal. Well this morning i recieved a phone call from the dr's office sending her on a referal to see a pulmenologist the person scheduling appt didn't know what it was for. I called back and asked to speak to my dr but the nurse called me back. She told me that her results had come back normal but borderline I asked how it was normal and borderline. I asked for the number and it was 68 and what i have seen 40-60 is borderline and 60 and above is postive. I no longer trust what the dr's office i don't belive they have any idea. I was hoping someone w/ experience could inform me on what the ranges are and if 68 is borderline or what exactly it is.
At my daughters 9 month checkup our pediatrician wanted to test for CF and she brought the head of peds in and he agreed. We went for a sweat test the following week and when i called in for the results i was told they were fine only to recieve a phone call a minute later telling me they didn't recieve enough sweat and that we would have to go back. It took 2 weeks to get in for another one it was on 5/24. I called that day for the results and was told by the nurse that everything came back normal. Well this morning i recieved a phone call from the dr's office sending her on a referal to see a pulmenologist the person scheduling appt didn't know what it was for. I called back and asked to speak to my dr but the nurse called me back. She told me that her results had come back normal but borderline I asked how it was normal and borderline. I asked for the number and it was 68 and what i have seen 40-60 is borderline and 60 and above is postive. I no longer trust what the dr's office i don't belive they have any idea. I was hoping someone w/ experience could inform me on what the ranges are and if 68 is borderline or what exactly it is.
M
Mommafirst
Guest
I am so sorry that your peds office doesn't know what they are doing. I've found that with most things CF related my pediatrician is ill equiped to answer my questions.
Your research is correct. 40-60 is considered borderline, over 60 is considered positive. I believe a diagnosis won't be given until you get TWO positive sweats. In my opinion, I would ask them to do the second sweat and then draw blood for a genetic test too. If it is positive, they'll want to know which mutations anyway.
I'm so sorry you are going through this. Diagnosis is really hard. It is posible to get a false positive, though very rare. Was the sweat test done at an accredited CF center? Is the pulmonologist affiliated with said center? I think its probably important to make sure testing was done and is continued to be done with a CFF accreditied center and lab (see CFF.org) to minimize the possiblity of false results.
I'm sure your head is reeling right now. As it starts to take this all in, and you have more questions, please post!!!
Hugs to you!!!b
Your research is correct. 40-60 is considered borderline, over 60 is considered positive. I believe a diagnosis won't be given until you get TWO positive sweats. In my opinion, I would ask them to do the second sweat and then draw blood for a genetic test too. If it is positive, they'll want to know which mutations anyway.
I'm so sorry you are going through this. Diagnosis is really hard. It is posible to get a false positive, though very rare. Was the sweat test done at an accredited CF center? Is the pulmonologist affiliated with said center? I think its probably important to make sure testing was done and is continued to be done with a CFF accreditied center and lab (see CFF.org) to minimize the possiblity of false results.
I'm sure your head is reeling right now. As it starts to take this all in, and you have more questions, please post!!!
Hugs to you!!!b
M
Mommafirst
Guest
I am so sorry that your peds office doesn't know what they are doing. I've found that with most things CF related my pediatrician is ill equiped to answer my questions.
Your research is correct. 40-60 is considered borderline, over 60 is considered positive. I believe a diagnosis won't be given until you get TWO positive sweats. In my opinion, I would ask them to do the second sweat and then draw blood for a genetic test too. If it is positive, they'll want to know which mutations anyway.
I'm so sorry you are going through this. Diagnosis is really hard. It is posible to get a false positive, though very rare. Was the sweat test done at an accredited CF center? Is the pulmonologist affiliated with said center? I think its probably important to make sure testing was done and is continued to be done with a CFF accreditied center and lab (see CFF.org) to minimize the possiblity of false results.
I'm sure your head is reeling right now. As it starts to take this all in, and you have more questions, please post!!!
Hugs to you!!!b
Your research is correct. 40-60 is considered borderline, over 60 is considered positive. I believe a diagnosis won't be given until you get TWO positive sweats. In my opinion, I would ask them to do the second sweat and then draw blood for a genetic test too. If it is positive, they'll want to know which mutations anyway.
I'm so sorry you are going through this. Diagnosis is really hard. It is posible to get a false positive, though very rare. Was the sweat test done at an accredited CF center? Is the pulmonologist affiliated with said center? I think its probably important to make sure testing was done and is continued to be done with a CFF accreditied center and lab (see CFF.org) to minimize the possiblity of false results.
I'm sure your head is reeling right now. As it starts to take this all in, and you have more questions, please post!!!
Hugs to you!!!b
M
Mommafirst
Guest
I am so sorry that your peds office doesn't know what they are doing. I've found that with most things CF related my pediatrician is ill equiped to answer my questions.
Your research is correct. 40-60 is considered borderline, over 60 is considered positive. I believe a diagnosis won't be given until you get TWO positive sweats. In my opinion, I would ask them to do the second sweat and then draw blood for a genetic test too. If it is positive, they'll want to know which mutations anyway.
I'm so sorry you are going through this. Diagnosis is really hard. It is posible to get a false positive, though very rare. Was the sweat test done at an accredited CF center? Is the pulmonologist affiliated with said center? I think its probably important to make sure testing was done and is continued to be done with a CFF accreditied center and lab (see CFF.org) to minimize the possiblity of false results.
I'm sure your head is reeling right now. As it starts to take this all in, and you have more questions, please post!!!
Hugs to you!!!b
Your research is correct. 40-60 is considered borderline, over 60 is considered positive. I believe a diagnosis won't be given until you get TWO positive sweats. In my opinion, I would ask them to do the second sweat and then draw blood for a genetic test too. If it is positive, they'll want to know which mutations anyway.
I'm so sorry you are going through this. Diagnosis is really hard. It is posible to get a false positive, though very rare. Was the sweat test done at an accredited CF center? Is the pulmonologist affiliated with said center? I think its probably important to make sure testing was done and is continued to be done with a CFF accreditied center and lab (see CFF.org) to minimize the possiblity of false results.
I'm sure your head is reeling right now. As it starts to take this all in, and you have more questions, please post!!!
Hugs to you!!!b
Normally 68 would be considered positive (40-60 borderline, infants 30-60 borderline). I'm not sure why or if this is valid but i have heard other people say that sometimes the normal/borderline range is extended to 80. It may be related to the calibration of the instruments or something like that if this other range is in fact valid. Was the sweat test preformed at a CF accreddited facility? If not, a knowledgeable pulmo will probably retest again at a CF accredited facility. It is important that the test is preformed properly because otherwise the chance of false positive and false negative results increases. Anyway i think it is good that they are referring her to a pulmo, he/she should be able to help you sort this all out. If your daughter's sweat test is in fact borderline (above 30) you should get genetic testing. Ambry amplified is the most comprehensive test but most likely they will start with others and hopefully move onto that test if nothing turns up.
Normally 68 would be considered positive (40-60 borderline, infants 30-60 borderline). I'm not sure why or if this is valid but i have heard other people say that sometimes the normal/borderline range is extended to 80. It may be related to the calibration of the instruments or something like that if this other range is in fact valid. Was the sweat test preformed at a CF accreddited facility? If not, a knowledgeable pulmo will probably retest again at a CF accredited facility. It is important that the test is preformed properly because otherwise the chance of false positive and false negative results increases. Anyway i think it is good that they are referring her to a pulmo, he/she should be able to help you sort this all out. If your daughter's sweat test is in fact borderline (above 30) you should get genetic testing. Ambry amplified is the most comprehensive test but most likely they will start with others and hopefully move onto that test if nothing turns up.
Normally 68 would be considered positive (40-60 borderline, infants 30-60 borderline). I'm not sure why or if this is valid but i have heard other people say that sometimes the normal/borderline range is extended to 80. It may be related to the calibration of the instruments or something like that if this other range is in fact valid. Was the sweat test preformed at a CF accreddited facility? If not, a knowledgeable pulmo will probably retest again at a CF accredited facility. It is important that the test is preformed properly because otherwise the chance of false positive and false negative results increases. Anyway i think it is good that they are referring her to a pulmo, he/she should be able to help you sort this all out. If your daughter's sweat test is in fact borderline (above 30) you should get genetic testing. Ambry amplified is the most comprehensive test but most likely they will start with others and hopefully move onto that test if nothing turns up.
I don't belive the hospital where the test was done is CF accredited, the person doing the test was the only person in the hospital qualified to do it, probaly why we had to wait so long to get in. We are being sent to accredited cf center, the closest one is 2 hours away, and the earliest we could get in there is mid july.
I don't belive the hospital where the test was done is CF accredited, the person doing the test was the only person in the hospital qualified to do it, probaly why we had to wait so long to get in. We are being sent to accredited cf center, the closest one is 2 hours away, and the earliest we could get in there is mid july.
I don't belive the hospital where the test was done is CF accredited, the person doing the test was the only person in the hospital qualified to do it, probaly why we had to wait so long to get in. We are being sent to accredited cf center, the closest one is 2 hours away, and the earliest we could get in there is mid july.
While you're waiting to get in, call the Pulmo's office and have them fax you an order for an Ambry Amplified genetic test (this test is the only test that checks for all known CF genes)
Go to a lab, get blood drawn, and send the blood off to Ambry.
The genetic test will be the most accurate way for you to check for CF.
Go to a lab, get blood drawn, and send the blood off to Ambry.
The genetic test will be the most accurate way for you to check for CF.
While you're waiting to get in, call the Pulmo's office and have them fax you an order for an Ambry Amplified genetic test (this test is the only test that checks for all known CF genes)
Go to a lab, get blood drawn, and send the blood off to Ambry.
The genetic test will be the most accurate way for you to check for CF.
Go to a lab, get blood drawn, and send the blood off to Ambry.
The genetic test will be the most accurate way for you to check for CF.
While you're waiting to get in, call the Pulmo's office and have them fax you an order for an Ambry Amplified genetic test (this test is the only test that checks for all known CF genes)
Go to a lab, get blood drawn, and send the blood off to Ambry.
The genetic test will be the most accurate way for you to check for CF.
Go to a lab, get blood drawn, and send the blood off to Ambry.
The genetic test will be the most accurate way for you to check for CF.
While you're waiting to get in, call the Pulmo's office and have them fax you an order for an Ambry Amplified genetic test (this test is the only test that checks for all known CF genes)
Go to a lab, get blood drawn, and send the blood off to Ambry.
The genetic test will be the most accurate way for you to check for CF.
Go to a lab, get blood drawn, and send the blood off to Ambry.
The genetic test will be the most accurate way for you to check for CF.
While you're waiting to get in, call the Pulmo's office and have them fax you an order for an Ambry Amplified genetic test (this test is the only test that checks for all known CF genes)
Go to a lab, get blood drawn, and send the blood off to Ambry.
The genetic test will be the most accurate way for you to check for CF.
Go to a lab, get blood drawn, and send the blood off to Ambry.
The genetic test will be the most accurate way for you to check for CF.
While you're waiting to get in, call the Pulmo's office and have them fax you an order for an Ambry Amplified genetic test (this test is the only test that checks for all known CF genes)
Go to a lab, get blood drawn, and send the blood off to Ambry.
The genetic test will be the most accurate way for you to check for CF.
Go to a lab, get blood drawn, and send the blood off to Ambry.
The genetic test will be the most accurate way for you to check for CF.
Yes, 68 is considered positive -- keep after it and get to an accredited facility to make sure everything is accurate.
Read my blog if you have time -- I also recommend getting FULL genetic testing -- don't let them do anything less than the full test for over 1500 genes -- anything else will leave you still questioning "did we miss the other 1300 genes?" if they only test for 200 or less.
Read my blog if you have time -- I also recommend getting FULL genetic testing -- don't let them do anything less than the full test for over 1500 genes -- anything else will leave you still questioning "did we miss the other 1300 genes?" if they only test for 200 or less.
Yes, 68 is considered positive -- keep after it and get to an accredited facility to make sure everything is accurate.
Read my blog if you have time -- I also recommend getting FULL genetic testing -- don't let them do anything less than the full test for over 1500 genes -- anything else will leave you still questioning "did we miss the other 1300 genes?" if they only test for 200 or less.
Read my blog if you have time -- I also recommend getting FULL genetic testing -- don't let them do anything less than the full test for over 1500 genes -- anything else will leave you still questioning "did we miss the other 1300 genes?" if they only test for 200 or less.