Almost Diagnosed

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valigirl21

Guest
Hi, I'm new to this site, but my son is (almost) Dx w/ CF. He is having his third sweat test and a blood test done to confirm. He is 8 y/o. CF has been suspected since infancy, but he was treted as just another asthma patient and the test was mentioned but never ordered. What does it mean when the test result is borderline? That's what they said...Borderline.
 
V

valigirl21

Guest
Hi, I'm new to this site, but my son is (almost) Dx w/ CF. He is having his third sweat test and a blood test done to confirm. He is 8 y/o. CF has been suspected since infancy, but he was treted as just another asthma patient and the test was mentioned but never ordered. What does it mean when the test result is borderline? That's what they said...Borderline.
 
V

valigirl21

Guest
Hi, I'm new to this site, but my son is (almost) Dx w/ CF. He is having his third sweat test and a blood test done to confirm. He is 8 y/o. CF has been suspected since infancy, but he was treted as just another asthma patient and the test was mentioned but never ordered. What does it mean when the test result is borderline? That's what they said...Borderline.
 
V

valigirl21

Guest
Hi, I'm new to this site, but my son is (almost) Dx w/ CF. He is having his third sweat test and a blood test done to confirm. He is 8 y/o. CF has been suspected since infancy, but he was treted as just another asthma patient and the test was mentioned but never ordered. What does it mean when the test result is borderline? That's what they said...Borderline.
 
V

valigirl21

Guest
Hi, I'm new to this site, but my son is (almost) Dx w/ CF. He is having his third sweat test and a blood test done to confirm. He is 8 y/o. CF has been suspected since infancy, but he was treted as just another asthma patient and the test was mentioned but never ordered. What does it mean when the test result is borderline? That's what they said...Borderline.
 
B

Buckeye

New member
A sweat test above 60 is considered positive, from 40-60 is borderline and less than 40 is considered negative, although there are people diagnosed with cf who fall into the higher negative range (rare but it happens). I assume they are doing the third sweat test because his other sweats fell into the gray area and hopefully the blood test they are running is a genetic test. Normally the doctors do a small panel genetics test first and then move on to the next level of genetic testing if they don't find anything on the first panel. You might want to read the posts on the "Welcome Ambry Genetics" thread that is at the very top of the Family section - there's a lot of useful info in there regarding the genetic testing. I think it's great that your doctors are repeating the sweat test and doing genetic testing, I see so many parents that have to beg and plead their doctors to move ahead with the cf testing even with borderline sweat results.</P>
 
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Buckeye

New member
A sweat test above 60 is considered positive, from 40-60 is borderline and less than 40 is considered negative, although there are people diagnosed with cf who fall into the higher negative range (rare but it happens). I assume they are doing the third sweat test because his other sweats fell into the gray area and hopefully the blood test they are running is a genetic test. Normally the doctors do a small panel genetics test first and then move on to the next level of genetic testing if they don't find anything on the first panel. You might want to read the posts on the "Welcome Ambry Genetics" thread that is at the very top of the Family section - there's a lot of useful info in there regarding the genetic testing. I think it's great that your doctors are repeating the sweat test and doing genetic testing, I see so many parents that have to beg and plead their doctors to move ahead with the cf testing even with borderline sweat results.</P>
 
B

Buckeye

New member
A sweat test above 60 is considered positive, from 40-60 is borderline and less than 40 is considered negative, although there are people diagnosed with cf who fall into the higher negative range (rare but it happens). I assume they are doing the third sweat test because his other sweats fell into the gray area and hopefully the blood test they are running is a genetic test. Normally the doctors do a small panel genetics test first and then move on to the next level of genetic testing if they don't find anything on the first panel. You might want to read the posts on the "Welcome Ambry Genetics" thread that is at the very top of the Family section - there's a lot of useful info in there regarding the genetic testing. I think it's great that your doctors are repeating the sweat test and doing genetic testing, I see so many parents that have to beg and plead their doctors to move ahead with the cf testing even with borderline sweat results.</P>
 
B

Buckeye

New member
A sweat test above 60 is considered positive, from 40-60 is borderline and less than 40 is considered negative, although there are people diagnosed with cf who fall into the higher negative range (rare but it happens). I assume they are doing the third sweat test because his other sweats fell into the gray area and hopefully the blood test they are running is a genetic test. Normally the doctors do a small panel genetics test first and then move on to the next level of genetic testing if they don't find anything on the first panel. You might want to read the posts on the "Welcome Ambry Genetics" thread that is at the very top of the Family section - there's a lot of useful info in there regarding the genetic testing. I think it's great that your doctors are repeating the sweat test and doing genetic testing, I see so many parents that have to beg and plead their doctors to move ahead with the cf testing even with borderline sweat results.</P>
 
B

Buckeye

New member
A sweat test above 60 is considered positive, from 40-60 is borderline and less than 40 is considered negative, although there are people diagnosed with cf who fall into the higher negative range (rare but it happens). I assume they are doing the third sweat test because his other sweats fell into the gray area and hopefully the blood test they are running is a genetic test. Normally the doctors do a small panel genetics test first and then move on to the next level of genetic testing if they don't find anything on the first panel. You might want to read the posts on the "Welcome Ambry Genetics" thread that is at the very top of the Family section - there's a lot of useful info in there regarding the genetic testing. I think it's great that your doctors are repeating the sweat test and doing genetic testing, I see so many parents that have to beg and plead their doctors to move ahead with the cf testing even with borderline sweat results.</P>
 
A

Alyssa

New member
Buckeye is exactly right with the numbers - please see my blog for more details -- my kids test normal and borderline, but we found two CF genes in them after genetic testing.

My daughter went mis-diagnosed as "asthma with productive cough" for 8 years because she has a very high normal sweat test number (38) Many people on this website fall in the 20's and 30's for sweat test numbers, so if you are at an accredited CF facility and two of his sweat tests have been borderline, and he has CF symptoms, it's pretty likely that he has CF.

Welcome to the website -- it is a very good place to learn! There is so much information shared on this site! You will learn so much here and will be much better informed when you go back for doctor appointments in the future.
 
A

Alyssa

New member
Buckeye is exactly right with the numbers - please see my blog for more details -- my kids test normal and borderline, but we found two CF genes in them after genetic testing.

My daughter went mis-diagnosed as "asthma with productive cough" for 8 years because she has a very high normal sweat test number (38) Many people on this website fall in the 20's and 30's for sweat test numbers, so if you are at an accredited CF facility and two of his sweat tests have been borderline, and he has CF symptoms, it's pretty likely that he has CF.

Welcome to the website -- it is a very good place to learn! There is so much information shared on this site! You will learn so much here and will be much better informed when you go back for doctor appointments in the future.
 
A

Alyssa

New member
Buckeye is exactly right with the numbers - please see my blog for more details -- my kids test normal and borderline, but we found two CF genes in them after genetic testing.

My daughter went mis-diagnosed as "asthma with productive cough" for 8 years because she has a very high normal sweat test number (38) Many people on this website fall in the 20's and 30's for sweat test numbers, so if you are at an accredited CF facility and two of his sweat tests have been borderline, and he has CF symptoms, it's pretty likely that he has CF.

Welcome to the website -- it is a very good place to learn! There is so much information shared on this site! You will learn so much here and will be much better informed when you go back for doctor appointments in the future.
 
A

Alyssa

New member
Buckeye is exactly right with the numbers - please see my blog for more details -- my kids test normal and borderline, but we found two CF genes in them after genetic testing.

My daughter went mis-diagnosed as "asthma with productive cough" for 8 years because she has a very high normal sweat test number (38) Many people on this website fall in the 20's and 30's for sweat test numbers, so if you are at an accredited CF facility and two of his sweat tests have been borderline, and he has CF symptoms, it's pretty likely that he has CF.

Welcome to the website -- it is a very good place to learn! There is so much information shared on this site! You will learn so much here and will be much better informed when you go back for doctor appointments in the future.
 
A

Alyssa

New member
Buckeye is exactly right with the numbers - please see my blog for more details -- my kids test normal and borderline, but we found two CF genes in them after genetic testing.

My daughter went mis-diagnosed as "asthma with productive cough" for 8 years because she has a very high normal sweat test number (38) Many people on this website fall in the 20's and 30's for sweat test numbers, so if you are at an accredited CF facility and two of his sweat tests have been borderline, and he has CF symptoms, it's pretty likely that he has CF.

Welcome to the website -- it is a very good place to learn! There is so much information shared on this site! You will learn so much here and will be much better informed when you go back for doctor appointments in the future.
 
J

JORDYSMOM

New member
Hi Valigirl21

Welcome to the site.

I'm glad your docs are on the right path. As Alyssa said, some people have to get down right nasty with the docs to get the genetic testing done. They may only be testing for a few of the many mutations, so you may have to get pushy in the long run to be tested for all of them. The Ambry thread is full of info and they are very helpful and kind people to deal with.

I know you will find much information and support here, so feel free to ask any questions you may have. Someone will have the answer. Keep us posted.

Stacey
 
J

JORDYSMOM

New member
Hi Valigirl21

Welcome to the site.

I'm glad your docs are on the right path. As Alyssa said, some people have to get down right nasty with the docs to get the genetic testing done. They may only be testing for a few of the many mutations, so you may have to get pushy in the long run to be tested for all of them. The Ambry thread is full of info and they are very helpful and kind people to deal with.

I know you will find much information and support here, so feel free to ask any questions you may have. Someone will have the answer. Keep us posted.

Stacey
 
J

JORDYSMOM

New member
Hi Valigirl21

Welcome to the site.

I'm glad your docs are on the right path. As Alyssa said, some people have to get down right nasty with the docs to get the genetic testing done. They may only be testing for a few of the many mutations, so you may have to get pushy in the long run to be tested for all of them. The Ambry thread is full of info and they are very helpful and kind people to deal with.

I know you will find much information and support here, so feel free to ask any questions you may have. Someone will have the answer. Keep us posted.

Stacey
 
J

JORDYSMOM

New member
Hi Valigirl21

Welcome to the site.

I'm glad your docs are on the right path. As Alyssa said, some people have to get down right nasty with the docs to get the genetic testing done. They may only be testing for a few of the many mutations, so you may have to get pushy in the long run to be tested for all of them. The Ambry thread is full of info and they are very helpful and kind people to deal with.

I know you will find much information and support here, so feel free to ask any questions you may have. Someone will have the answer. Keep us posted.

Stacey
 
J

JORDYSMOM

New member
Hi Valigirl21

Welcome to the site.

I'm glad your docs are on the right path. As Alyssa said, some people have to get down right nasty with the docs to get the genetic testing done. They may only be testing for a few of the many mutations, so you may have to get pushy in the long run to be tested for all of them. The Ambry thread is full of info and they are very helpful and kind people to deal with.

I know you will find much information and support here, so feel free to ask any questions you may have. Someone will have the answer. Keep us posted.

Stacey
 
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