Sweat Test Question

J

Jenny5150

New member
Hi all!

My newborn son's screening came back with elevated IRT (83.5) and the F508 mutation. The screening stated that the risk of my son having CF was 4%, but that doesn't ease my concerns. We recently had the sweat test done and the doc wants a second test done because of a "high negative value".

Which value is usually looked at when it comes to the sweat test? I keep seeing references to numbers on here, but what number are most people referring to? The Na or Cl number?

FWIW, my son's values were Na=29.35 and Cl=18.49.

I've been told by a couple of doctors not to read anything into these numbers especially since my son hasn't currently shown any symptoms, but it's hard not to.

Thanks for taking the time to read my post. <img src="i/expressions/face-icon-small-smile.gif" border="0">
-Jen
 
J

Jenny5150

New member
Hi all!

My newborn son's screening came back with elevated IRT (83.5) and the F508 mutation. The screening stated that the risk of my son having CF was 4%, but that doesn't ease my concerns. We recently had the sweat test done and the doc wants a second test done because of a "high negative value".

Which value is usually looked at when it comes to the sweat test? I keep seeing references to numbers on here, but what number are most people referring to? The Na or Cl number?

FWIW, my son's values were Na=29.35 and Cl=18.49.

I've been told by a couple of doctors not to read anything into these numbers especially since my son hasn't currently shown any symptoms, but it's hard not to.

Thanks for taking the time to read my post. <img src="i/expressions/face-icon-small-smile.gif" border="0">
-Jen
 
J

Jenny5150

New member
Hi all!

My newborn son's screening came back with elevated IRT (83.5) and the F508 mutation. The screening stated that the risk of my son having CF was 4%, but that doesn't ease my concerns. We recently had the sweat test done and the doc wants a second test done because of a "high negative value".

Which value is usually looked at when it comes to the sweat test? I keep seeing references to numbers on here, but what number are most people referring to? The Na or Cl number?

FWIW, my son's values were Na=29.35 and Cl=18.49.

I've been told by a couple of doctors not to read anything into these numbers especially since my son hasn't currently shown any symptoms, but it's hard not to.

Thanks for taking the time to read my post. <img src="i/expressions/face-icon-small-smile.gif" border="0">
-Jen
 
J

Jenny5150

New member
Hi all!

My newborn son's screening came back with elevated IRT (83.5) and the F508 mutation. The screening stated that the risk of my son having CF was 4%, but that doesn't ease my concerns. We recently had the sweat test done and the doc wants a second test done because of a "high negative value".

Which value is usually looked at when it comes to the sweat test? I keep seeing references to numbers on here, but what number are most people referring to? The Na or Cl number?

FWIW, my son's values were Na=29.35 and Cl=18.49.

I've been told by a couple of doctors not to read anything into these numbers especially since my son hasn't currently shown any symptoms, but it's hard not to.

Thanks for taking the time to read my post. <img src="i/expressions/face-icon-small-smile.gif" border="0">
-Jen
 
J

Jenny5150

New member
Hi all!
<br />
<br />My newborn son's screening came back with elevated IRT (83.5) and the F508 mutation. The screening stated that the risk of my son having CF was 4%, but that doesn't ease my concerns. We recently had the sweat test done and the doc wants a second test done because of a "high negative value".
<br />
<br />Which value is usually looked at when it comes to the sweat test? I keep seeing references to numbers on here, but what number are most people referring to? The Na or Cl number?
<br />
<br />FWIW, my son's values were Na=29.35 and Cl=18.49.
<br />
<br />I've been told by a couple of doctors not to read anything into these numbers especially since my son hasn't currently shown any symptoms, but it's hard not to.
<br />
<br />Thanks for taking the time to read my post. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />-Jen
 
M

Mommafirst

Guest
I'm not really sure, I always thought it was a "sweat chloride" test, thus it would be the chloride. But looking at your son's numbers, I'd think the sodium, because I couldn't imagine a doctor saying an 18 is high enough to test again.

It sounds like you have a good and thorough doctor. You'd be surprised to learn how many doctors would just let a high negative go and say, "negative is negative" and not look back. But a high negative is worthy of further testing.

I totally don't want to worry you more than you already are, but many babies do not present with symptoms right away. On the flip side, being a DF508 carrier could be good enough cause to trip the IRT screen, so hang in there and ask questions as they come up.
 
M

Mommafirst

Guest
I'm not really sure, I always thought it was a "sweat chloride" test, thus it would be the chloride. But looking at your son's numbers, I'd think the sodium, because I couldn't imagine a doctor saying an 18 is high enough to test again.

It sounds like you have a good and thorough doctor. You'd be surprised to learn how many doctors would just let a high negative go and say, "negative is negative" and not look back. But a high negative is worthy of further testing.

I totally don't want to worry you more than you already are, but many babies do not present with symptoms right away. On the flip side, being a DF508 carrier could be good enough cause to trip the IRT screen, so hang in there and ask questions as they come up.
 
M

Mommafirst

Guest
I'm not really sure, I always thought it was a "sweat chloride" test, thus it would be the chloride. But looking at your son's numbers, I'd think the sodium, because I couldn't imagine a doctor saying an 18 is high enough to test again.

It sounds like you have a good and thorough doctor. You'd be surprised to learn how many doctors would just let a high negative go and say, "negative is negative" and not look back. But a high negative is worthy of further testing.

I totally don't want to worry you more than you already are, but many babies do not present with symptoms right away. On the flip side, being a DF508 carrier could be good enough cause to trip the IRT screen, so hang in there and ask questions as they come up.
 
M

Mommafirst

Guest
I'm not really sure, I always thought it was a "sweat chloride" test, thus it would be the chloride. But looking at your son's numbers, I'd think the sodium, because I couldn't imagine a doctor saying an 18 is high enough to test again.

It sounds like you have a good and thorough doctor. You'd be surprised to learn how many doctors would just let a high negative go and say, "negative is negative" and not look back. But a high negative is worthy of further testing.

I totally don't want to worry you more than you already are, but many babies do not present with symptoms right away. On the flip side, being a DF508 carrier could be good enough cause to trip the IRT screen, so hang in there and ask questions as they come up.
 
M

Mommafirst

Guest
I'm not really sure, I always thought it was a "sweat chloride" test, thus it would be the chloride. But looking at your son's numbers, I'd think the sodium, because I couldn't imagine a doctor saying an 18 is high enough to test again.
<br />
<br />It sounds like you have a good and thorough doctor. You'd be surprised to learn how many doctors would just let a high negative go and say, "negative is negative" and not look back. But a high negative is worthy of further testing.
<br />
<br />I totally don't want to worry you more than you already are, but many babies do not present with symptoms right away. On the flip side, being a DF508 carrier could be good enough cause to trip the IRT screen, so hang in there and ask questions as they come up.
 
A

Alyssa

New member
I tend to agree with everything Heather said... I don't really know for sure, but cannot imagine a doctor thinking that 18 is high normal...so perhaps it is the 29 he is referring to.. and yes, having the one Delta F508 would most likely increase the IRT....but it doesn't mean anything to not show symptoms right away... my daughter didn't show any symptoms until age 5, my son age 21 !

I would ask for full genetic testing...tell them you want them to check for ALL known mutations.. which is at least 1,561.
 
A

Alyssa

New member
I tend to agree with everything Heather said... I don't really know for sure, but cannot imagine a doctor thinking that 18 is high normal...so perhaps it is the 29 he is referring to.. and yes, having the one Delta F508 would most likely increase the IRT....but it doesn't mean anything to not show symptoms right away... my daughter didn't show any symptoms until age 5, my son age 21 !

I would ask for full genetic testing...tell them you want them to check for ALL known mutations.. which is at least 1,561.
 
A

Alyssa

New member
I tend to agree with everything Heather said... I don't really know for sure, but cannot imagine a doctor thinking that 18 is high normal...so perhaps it is the 29 he is referring to.. and yes, having the one Delta F508 would most likely increase the IRT....but it doesn't mean anything to not show symptoms right away... my daughter didn't show any symptoms until age 5, my son age 21 !

I would ask for full genetic testing...tell them you want them to check for ALL known mutations.. which is at least 1,561.
 
A

Alyssa

New member
I tend to agree with everything Heather said... I don't really know for sure, but cannot imagine a doctor thinking that 18 is high normal...so perhaps it is the 29 he is referring to.. and yes, having the one Delta F508 would most likely increase the IRT....but it doesn't mean anything to not show symptoms right away... my daughter didn't show any symptoms until age 5, my son age 21 !

I would ask for full genetic testing...tell them you want them to check for ALL known mutations.. which is at least 1,561.
 
A

Alyssa

New member
I tend to agree with everything Heather said... I don't really know for sure, but cannot imagine a doctor thinking that 18 is high normal...so perhaps it is the 29 he is referring to.. and yes, having the one Delta F508 would most likely increase the IRT....but it doesn't mean anything to not show symptoms right away... my daughter didn't show any symptoms until age 5, my son age 21 !
<br />
<br />I would ask for full genetic testing...tell them you want them to check for ALL known mutations.. which is at least 1,561.
 
J

Jenny5150

New member
So when people on here make mention of their sweat test numbers, they're referring to the Cl number? I'm pretty sure the doctor (director of the CF center we had the sweat test done at) made mention of the 29 to our pediatrician, not the 18.

Do you guys think I should request genetic testing for my 22 month old daughter as well, even though her newborn screening didn't come back with any abnormalities?

I'm pretty sure I was screened for CF when I was pregnant with her and it came up negative, but I know they don't screen for all the mutations, just the more common ones.

I intend to request the genetic screening!

Do you guys happen to know if insurance covers any of the genetic testing or is it all out of pocket?

Thank you ladies for taking the time to respond. My thoughts are with you and your families!!!
 
J

Jenny5150

New member
So when people on here make mention of their sweat test numbers, they're referring to the Cl number? I'm pretty sure the doctor (director of the CF center we had the sweat test done at) made mention of the 29 to our pediatrician, not the 18.

Do you guys think I should request genetic testing for my 22 month old daughter as well, even though her newborn screening didn't come back with any abnormalities?

I'm pretty sure I was screened for CF when I was pregnant with her and it came up negative, but I know they don't screen for all the mutations, just the more common ones.

I intend to request the genetic screening!

Do you guys happen to know if insurance covers any of the genetic testing or is it all out of pocket?

Thank you ladies for taking the time to respond. My thoughts are with you and your families!!!
 
J

Jenny5150

New member
So when people on here make mention of their sweat test numbers, they're referring to the Cl number? I'm pretty sure the doctor (director of the CF center we had the sweat test done at) made mention of the 29 to our pediatrician, not the 18.

Do you guys think I should request genetic testing for my 22 month old daughter as well, even though her newborn screening didn't come back with any abnormalities?

I'm pretty sure I was screened for CF when I was pregnant with her and it came up negative, but I know they don't screen for all the mutations, just the more common ones.

I intend to request the genetic screening!

Do you guys happen to know if insurance covers any of the genetic testing or is it all out of pocket?

Thank you ladies for taking the time to respond. My thoughts are with you and your families!!!
 
J

Jenny5150

New member
So when people on here make mention of their sweat test numbers, they're referring to the Cl number? I'm pretty sure the doctor (director of the CF center we had the sweat test done at) made mention of the 29 to our pediatrician, not the 18.

Do you guys think I should request genetic testing for my 22 month old daughter as well, even though her newborn screening didn't come back with any abnormalities?

I'm pretty sure I was screened for CF when I was pregnant with her and it came up negative, but I know they don't screen for all the mutations, just the more common ones.

I intend to request the genetic screening!

Do you guys happen to know if insurance covers any of the genetic testing or is it all out of pocket?

Thank you ladies for taking the time to respond. My thoughts are with you and your families!!!
 
J

Jenny5150

New member
So when people on here make mention of their sweat test numbers, they're referring to the Cl number? I'm pretty sure the doctor (director of the CF center we had the sweat test done at) made mention of the 29 to our pediatrician, not the 18.
<br />
<br />Do you guys think I should request genetic testing for my 22 month old daughter as well, even though her newborn screening didn't come back with any abnormalities?
<br />
<br />I'm pretty sure I was screened for CF when I was pregnant with her and it came up negative, but I know they don't screen for all the mutations, just the more common ones.
<br />
<br />I intend to request the genetic screening!
<br />
<br />Do you guys happen to know if insurance covers any of the genetic testing or is it all out of pocket?
<br />
<br />Thank you ladies for taking the time to respond. My thoughts are with you and your families!!!
 
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