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Sweat Test

J

Jeana

New member
I am wondering, because my CF doc decided to give my 8-month old a sweat test. It will be taking place on Tuesday, but I am wanting to know how accurate they are. I did taste my son's sweat before and it does not seem salty. Anyway, Alex has had a lot of colds and right now is on Pulmicort, Zithromax, and Albuterol. I sympathize with those who have to give babies nebulizer treatments. Anyway, his weight is also low (about the 10th percentile), but pretty much steady. I am not extremely worried since my husband was with about 85% accuracy not a carrier, but that my doc suggested a sweat test doesn't exactly fill me with confidence either. So, has anyone had a negative sweat test and then turned out having CF?
 
J

Jeana

New member
I am wondering, because my CF doc decided to give my 8-month old a sweat test. It will be taking place on Tuesday, but I am wanting to know how accurate they are. I did taste my son's sweat before and it does not seem salty. Anyway, Alex has had a lot of colds and right now is on Pulmicort, Zithromax, and Albuterol. I sympathize with those who have to give babies nebulizer treatments. Anyway, his weight is also low (about the 10th percentile), but pretty much steady. I am not extremely worried since my husband was with about 85% accuracy not a carrier, but that my doc suggested a sweat test doesn't exactly fill me with confidence either. So, has anyone had a negative sweat test and then turned out having CF?
 
J

Jeana

New member
I am wondering, because my CF doc decided to give my 8-month old a sweat test. It will be taking place on Tuesday, but I am wanting to know how accurate they are. I did taste my son's sweat before and it does not seem salty. Anyway, Alex has had a lot of colds and right now is on Pulmicort, Zithromax, and Albuterol. I sympathize with those who have to give babies nebulizer treatments. Anyway, his weight is also low (about the 10th percentile), but pretty much steady. I am not extremely worried since my husband was with about 85% accuracy not a carrier, but that my doc suggested a sweat test doesn't exactly fill me with confidence either. So, has anyone had a negative sweat test and then turned out having CF?
 
J

Jeana

New member
I am wondering, because my CF doc decided to give my 8-month old a sweat test. It will be taking place on Tuesday, but I am wanting to know how accurate they are. I did taste my son's sweat before and it does not seem salty. Anyway, Alex has had a lot of colds and right now is on Pulmicort, Zithromax, and Albuterol. I sympathize with those who have to give babies nebulizer treatments. Anyway, his weight is also low (about the 10th percentile), but pretty much steady. I am not extremely worried since my husband was with about 85% accuracy not a carrier, but that my doc suggested a sweat test doesn't exactly fill me with confidence either. So, has anyone had a negative sweat test and then turned out having CF?
 
J

Jeana

New member
I am wondering, because my CF doc decided to give my 8-month old a sweat test. It will be taking place on Tuesday, but I am wanting to know how accurate they are. I did taste my son's sweat before and it does not seem salty. Anyway, Alex has had a lot of colds and right now is on Pulmicort, Zithromax, and Albuterol. I sympathize with those who have to give babies nebulizer treatments. Anyway, his weight is also low (about the 10th percentile), but pretty much steady. I am not extremely worried since my husband was with about 85% accuracy not a carrier, but that my doc suggested a sweat test doesn't exactly fill me with confidence either. So, has anyone had a negative sweat test and then turned out having CF?
 
L

LouLou

New member
Jeana, Why not just get a genetic test now too? Won't it pain you if say 5-10 years from now you do it and find out all along he had 2 mutations and you could have been doing preventative care for him?

That's why I got my son tested. They wanted to just do sweat and leave it at that. I said no. You can do sweat but I want genetic too. I was willing to pay for the 1000+ mutation sequencing if need be.

Well insurance paid for it and guess what (well I know you know the story but for other readers) HE PASSED THE SWEAT BUT THEY FOUND 2 MUTATIONS!!

My son has fewer symptoms of cf than yours does. Get the test. If you doctor declines doing it then have them put it in writing that they are declining it and why. Then at least in 5-10 years if your son is symptomatic and you find out he had 2 mutations you can take out some of the pain with a lawsuit.

I've said it before, and I'll say it again...
I believe mothers and fathers with cf owe their children (and cf research) full genetic sequencing of their offspring. End of story. Get the test.
 
L

LouLou

New member
Jeana, Why not just get a genetic test now too? Won't it pain you if say 5-10 years from now you do it and find out all along he had 2 mutations and you could have been doing preventative care for him?

That's why I got my son tested. They wanted to just do sweat and leave it at that. I said no. You can do sweat but I want genetic too. I was willing to pay for the 1000+ mutation sequencing if need be.

Well insurance paid for it and guess what (well I know you know the story but for other readers) HE PASSED THE SWEAT BUT THEY FOUND 2 MUTATIONS!!

My son has fewer symptoms of cf than yours does. Get the test. If you doctor declines doing it then have them put it in writing that they are declining it and why. Then at least in 5-10 years if your son is symptomatic and you find out he had 2 mutations you can take out some of the pain with a lawsuit.

I've said it before, and I'll say it again...
I believe mothers and fathers with cf owe their children (and cf research) full genetic sequencing of their offspring. End of story. Get the test.
 
L

LouLou

New member
Jeana, Why not just get a genetic test now too? Won't it pain you if say 5-10 years from now you do it and find out all along he had 2 mutations and you could have been doing preventative care for him?

That's why I got my son tested. They wanted to just do sweat and leave it at that. I said no. You can do sweat but I want genetic too. I was willing to pay for the 1000+ mutation sequencing if need be.

Well insurance paid for it and guess what (well I know you know the story but for other readers) HE PASSED THE SWEAT BUT THEY FOUND 2 MUTATIONS!!

My son has fewer symptoms of cf than yours does. Get the test. If you doctor declines doing it then have them put it in writing that they are declining it and why. Then at least in 5-10 years if your son is symptomatic and you find out he had 2 mutations you can take out some of the pain with a lawsuit.

I've said it before, and I'll say it again...
I believe mothers and fathers with cf owe their children (and cf research) full genetic sequencing of their offspring. End of story. Get the test.
 
L

LouLou

New member
Jeana, Why not just get a genetic test now too? Won't it pain you if say 5-10 years from now you do it and find out all along he had 2 mutations and you could have been doing preventative care for him?

That's why I got my son tested. They wanted to just do sweat and leave it at that. I said no. You can do sweat but I want genetic too. I was willing to pay for the 1000+ mutation sequencing if need be.

Well insurance paid for it and guess what (well I know you know the story but for other readers) HE PASSED THE SWEAT BUT THEY FOUND 2 MUTATIONS!!

My son has fewer symptoms of cf than yours does. Get the test. If you doctor declines doing it then have them put it in writing that they are declining it and why. Then at least in 5-10 years if your son is symptomatic and you find out he had 2 mutations you can take out some of the pain with a lawsuit.

I've said it before, and I'll say it again...
I believe mothers and fathers with cf owe their children (and cf research) full genetic sequencing of their offspring. End of story. Get the test.
 
L

LouLou

New member
Jeana, Why not just get a genetic test now too? Won't it pain you if say 5-10 years from now you do it and find out all along he had 2 mutations and you could have been doing preventative care for him?
<br />
<br />That's why I got my son tested. They wanted to just do sweat and leave it at that. I said no. You can do sweat but I want genetic too. I was willing to pay for the 1000+ mutation sequencing if need be.
<br />
<br />Well insurance paid for it and guess what (well I know you know the story but for other readers) HE PASSED THE SWEAT BUT THEY FOUND 2 MUTATIONS!!
<br />
<br />My son has fewer symptoms of cf than yours does. Get the test. If you doctor declines doing it then have them put it in writing that they are declining it and why. Then at least in 5-10 years if your son is symptomatic and you find out he had 2 mutations you can take out some of the pain with a lawsuit.
<br />
<br />I've said it before, and I'll say it again...
<br />I believe mothers and fathers with cf owe their children (and cf research) full genetic sequencing of their offspring. End of story. Get the test.
 
L

LouLou

New member
And I just want to commend you for getting further testing. I honestly don't know how the many moms and dads with cf on this site that haven't done genetic sequencing (1000+ mutations) of their children, deal with the stress of the possibility of their child having cf each time they have a cold.

As I've stated before getting ds tested I just wanted to "close the book on cf and Isaac." Who knew I wouldn't be able to close the book so to speak but rather the new chapter was just beginning.

I sincerely hope Alex doesn't have cf but in this day and age it is so much better to know. Many children born today with cf have a bright future ahead of them. And as many have said to me we are quite possibly the best parents a cfer can have.

FYI you may get the sweat test results while you are still in the hospital. We repeated our son's test at age 2 and we got the call one hour after he was tested. He score the same numbers as when he was tested at 8 wks. An 11 on one arm and a 12 on the other.
 
L

LouLou

New member
And I just want to commend you for getting further testing. I honestly don't know how the many moms and dads with cf on this site that haven't done genetic sequencing (1000+ mutations) of their children, deal with the stress of the possibility of their child having cf each time they have a cold.

As I've stated before getting ds tested I just wanted to "close the book on cf and Isaac." Who knew I wouldn't be able to close the book so to speak but rather the new chapter was just beginning.

I sincerely hope Alex doesn't have cf but in this day and age it is so much better to know. Many children born today with cf have a bright future ahead of them. And as many have said to me we are quite possibly the best parents a cfer can have.

FYI you may get the sweat test results while you are still in the hospital. We repeated our son's test at age 2 and we got the call one hour after he was tested. He score the same numbers as when he was tested at 8 wks. An 11 on one arm and a 12 on the other.
 
L

LouLou

New member
And I just want to commend you for getting further testing. I honestly don't know how the many moms and dads with cf on this site that haven't done genetic sequencing (1000+ mutations) of their children, deal with the stress of the possibility of their child having cf each time they have a cold.

As I've stated before getting ds tested I just wanted to "close the book on cf and Isaac." Who knew I wouldn't be able to close the book so to speak but rather the new chapter was just beginning.

I sincerely hope Alex doesn't have cf but in this day and age it is so much better to know. Many children born today with cf have a bright future ahead of them. And as many have said to me we are quite possibly the best parents a cfer can have.

FYI you may get the sweat test results while you are still in the hospital. We repeated our son's test at age 2 and we got the call one hour after he was tested. He score the same numbers as when he was tested at 8 wks. An 11 on one arm and a 12 on the other.
 
L

LouLou

New member
And I just want to commend you for getting further testing. I honestly don't know how the many moms and dads with cf on this site that haven't done genetic sequencing (1000+ mutations) of their children, deal with the stress of the possibility of their child having cf each time they have a cold.

As I've stated before getting ds tested I just wanted to "close the book on cf and Isaac." Who knew I wouldn't be able to close the book so to speak but rather the new chapter was just beginning.

I sincerely hope Alex doesn't have cf but in this day and age it is so much better to know. Many children born today with cf have a bright future ahead of them. And as many have said to me we are quite possibly the best parents a cfer can have.

FYI you may get the sweat test results while you are still in the hospital. We repeated our son's test at age 2 and we got the call one hour after he was tested. He score the same numbers as when he was tested at 8 wks. An 11 on one arm and a 12 on the other.
 
L

LouLou

New member
And I just want to commend you for getting further testing. I honestly don't know how the many moms and dads with cf on this site that haven't done genetic sequencing (1000+ mutations) of their children, deal with the stress of the possibility of their child having cf each time they have a cold.
<br />
<br />As I've stated before getting ds tested I just wanted to "close the book on cf and Isaac." Who knew I wouldn't be able to close the book so to speak but rather the new chapter was just beginning.
<br />
<br />I sincerely hope Alex doesn't have cf but in this day and age it is so much better to know. Many children born today with cf have a bright future ahead of them. And as many have said to me we are quite possibly the best parents a cfer can have.
<br />
<br />FYI you may get the sweat test results while you are still in the hospital. We repeated our son's test at age 2 and we got the call one hour after he was tested. He score the same numbers as when he was tested at 8 wks. An 11 on one arm and a 12 on the other.
 
J

Jeana

New member
Did your insurance also pay for carrier testing? Did you get the sweat test and the genetic sequencing done at the same time? I wonder how much it would cost if my insurance refused to pay. I would rather know than not know, for sure. My husband, on the other hand, is in complete denial about the possibility. The only reason he is willing to do the sweat test is because the doctor really wanted to do it. I'm all for finding out ASAP. I just wonder if I'm going to need to bring my insurance company stats about the sweat test not always being accurate or what.
 
J

Jeana

New member
Did your insurance also pay for carrier testing? Did you get the sweat test and the genetic sequencing done at the same time? I wonder how much it would cost if my insurance refused to pay. I would rather know than not know, for sure. My husband, on the other hand, is in complete denial about the possibility. The only reason he is willing to do the sweat test is because the doctor really wanted to do it. I'm all for finding out ASAP. I just wonder if I'm going to need to bring my insurance company stats about the sweat test not always being accurate or what.
 
J

Jeana

New member
Did your insurance also pay for carrier testing? Did you get the sweat test and the genetic sequencing done at the same time? I wonder how much it would cost if my insurance refused to pay. I would rather know than not know, for sure. My husband, on the other hand, is in complete denial about the possibility. The only reason he is willing to do the sweat test is because the doctor really wanted to do it. I'm all for finding out ASAP. I just wonder if I'm going to need to bring my insurance company stats about the sweat test not always being accurate or what.
 
J

Jeana

New member
Did your insurance also pay for carrier testing? Did you get the sweat test and the genetic sequencing done at the same time? I wonder how much it would cost if my insurance refused to pay. I would rather know than not know, for sure. My husband, on the other hand, is in complete denial about the possibility. The only reason he is willing to do the sweat test is because the doctor really wanted to do it. I'm all for finding out ASAP. I just wonder if I'm going to need to bring my insurance company stats about the sweat test not always being accurate or what.
 
J

Jeana

New member
Did your insurance also pay for carrier testing? Did you get the sweat test and the genetic sequencing done at the same time? I wonder how much it would cost if my insurance refused to pay. I would rather know than not know, for sure. My husband, on the other hand, is in complete denial about the possibility. The only reason he is willing to do the sweat test is because the doctor really wanted to do it. I'm all for finding out ASAP. I just wonder if I'm going to need to bring my insurance company stats about the sweat test not always being accurate or what.
 
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