Fasle Negative Sweat Tests?

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RiRi

Guest
I have seen this mentioned a couple of times but wanted to see how prevalent it was. Who here had a sweat test on either themselves or a child and the test came back normal but you or the child still had CF?
My child's result was postive but he has a cousin who has the classic CF symptoms and CF was questioned. Her test came back as normal so a gentic test was not done (not due to her parents but the Md did not think it was needed). She still of course has the symptoms and has gotten no relief from other treatments. She is 4.
Thanks in advance for the comments.

Ri
 
R

RiRi

Guest
I have seen this mentioned a couple of times but wanted to see how prevalent it was. Who here had a sweat test on either themselves or a child and the test came back normal but you or the child still had CF?
My child's result was postive but he has a cousin who has the classic CF symptoms and CF was questioned. Her test came back as normal so a gentic test was not done (not due to her parents but the Md did not think it was needed). She still of course has the symptoms and has gotten no relief from other treatments. She is 4.
Thanks in advance for the comments.

Ri
 
R

RiRi

Guest
I have seen this mentioned a couple of times but wanted to see how prevalent it was. Who here had a sweat test on either themselves or a child and the test came back normal but you or the child still had CF?
My child's result was postive but he has a cousin who has the classic CF symptoms and CF was questioned. Her test came back as normal so a gentic test was not done (not due to her parents but the Md did not think it was needed). She still of course has the symptoms and has gotten no relief from other treatments. She is 4.
Thanks in advance for the comments.

Ri
 
A

Alyssa

New member
Yep, that's us -- my kids tested out at 38 & 41. See my full story on my blog page.

I know there are at least 3-4 others on this site who have said they test in the negative range as well. If I remember correctly almost everbody was in the 30's. I really think they should just move the negative/positive number to 30 and be done with it. Chances are nobody is going to have a sweat test if they aren't having CF symptoms !
 
A

Alyssa

New member
Yep, that's us -- my kids tested out at 38 & 41. See my full story on my blog page.

I know there are at least 3-4 others on this site who have said they test in the negative range as well. If I remember correctly almost everbody was in the 30's. I really think they should just move the negative/positive number to 30 and be done with it. Chances are nobody is going to have a sweat test if they aren't having CF symptoms !
 
A

Alyssa

New member
Yep, that's us -- my kids tested out at 38 & 41. See my full story on my blog page.

I know there are at least 3-4 others on this site who have said they test in the negative range as well. If I remember correctly almost everbody was in the 30's. I really think they should just move the negative/positive number to 30 and be done with it. Chances are nobody is going to have a sweat test if they aren't having CF symptoms !
 
R

Ratatosk

Administrator
Staff member
Max's was 32 -- normal AND it was conducted at an accreditted CF Center. Fortunately the neonatologist at the local hospital, who had Max lifeflighted to the City for emergency surgery because he was born with meconium illeus, suspected CF and had a blood test taken. So we got the results of that test about 5 days after he was born. But for the longest time, because of that normal sweat test, I kept thinking "maybe they're wrong".
 
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Ratatosk

Administrator
Staff member
Max's was 32 -- normal AND it was conducted at an accreditted CF Center. Fortunately the neonatologist at the local hospital, who had Max lifeflighted to the City for emergency surgery because he was born with meconium illeus, suspected CF and had a blood test taken. So we got the results of that test about 5 days after he was born. But for the longest time, because of that normal sweat test, I kept thinking "maybe they're wrong".
 
R

Ratatosk

Administrator
Staff member
Max's was 32 -- normal AND it was conducted at an accreditted CF Center. Fortunately the neonatologist at the local hospital, who had Max lifeflighted to the City for emergency surgery because he was born with meconium illeus, suspected CF and had a blood test taken. So we got the results of that test about 5 days after he was born. But for the longest time, because of that normal sweat test, I kept thinking "maybe they're wrong".
 
R

RiRi

Guest
Alyssa-Thank you so much for writing the blog about how your kids were dx'd. The 4 year old has had an almost identically battle. She coughs up junk, is up at night cough, the md's keep giving her steriods and inhalers. Her md has wrote it off as asthma and allergies. I have told her mom that it is not asthma and allergies and while it may not be CF something is going on. Not that here Mom is in denial but it is hard to accept a bad dx especially after an MD tells you your child is "ok".
 
R

RiRi

Guest
Alyssa-Thank you so much for writing the blog about how your kids were dx'd. The 4 year old has had an almost identically battle. She coughs up junk, is up at night cough, the md's keep giving her steriods and inhalers. Her md has wrote it off as asthma and allergies. I have told her mom that it is not asthma and allergies and while it may not be CF something is going on. Not that here Mom is in denial but it is hard to accept a bad dx especially after an MD tells you your child is "ok".
 
R

RiRi

Guest
Alyssa-Thank you so much for writing the blog about how your kids were dx'd. The 4 year old has had an almost identically battle. She coughs up junk, is up at night cough, the md's keep giving her steriods and inhalers. Her md has wrote it off as asthma and allergies. I have told her mom that it is not asthma and allergies and while it may not be CF something is going on. Not that here Mom is in denial but it is hard to accept a bad dx especially after an MD tells you your child is "ok".
 
K

ktsmom

New member
Don't get us started on MD's and there stubborness/ignorance.........!

We fired our old pediatrican (that's the short version of that story). Last week, my older girl had to see the on-call doctor in the family practice that we go to now. We got to talking about Katy's CF and I PROMISE you that I knew more about it than HE did, and he has been in family practice for 25 years plus.

So please encourage your family member to seek blood testing, especially given the symptoms and the family history. Trust me no one wants the diagnosis, but if it is CF then the proper treatment can begin. Good luck.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
K

ktsmom

New member
Don't get us started on MD's and there stubborness/ignorance.........!

We fired our old pediatrican (that's the short version of that story). Last week, my older girl had to see the on-call doctor in the family practice that we go to now. We got to talking about Katy's CF and I PROMISE you that I knew more about it than HE did, and he has been in family practice for 25 years plus.

So please encourage your family member to seek blood testing, especially given the symptoms and the family history. Trust me no one wants the diagnosis, but if it is CF then the proper treatment can begin. Good luck.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
K

ktsmom

New member
Don't get us started on MD's and there stubborness/ignorance.........!

We fired our old pediatrican (that's the short version of that story). Last week, my older girl had to see the on-call doctor in the family practice that we go to now. We got to talking about Katy's CF and I PROMISE you that I knew more about it than HE did, and he has been in family practice for 25 years plus.

So please encourage your family member to seek blood testing, especially given the symptoms and the family history. Trust me no one wants the diagnosis, but if it is CF then the proper treatment can begin. Good luck.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
C

cosmokramer

New member
My daughter had 2 sweat tests, the first one children's hospital only got enough sweat off of one arm, which came back at 29. The second test children's hospital got enough sweat off of both arms and her numbers were 29 and 36. Both which are in the "normal range" but still on the higher end. So we did genetic testing, because her numbers weren't where the doctors really thought they should be, and found two mutations.

I would definelty push for genetic testing.
 
C

cosmokramer

New member
My daughter had 2 sweat tests, the first one children's hospital only got enough sweat off of one arm, which came back at 29. The second test children's hospital got enough sweat off of both arms and her numbers were 29 and 36. Both which are in the "normal range" but still on the higher end. So we did genetic testing, because her numbers weren't where the doctors really thought they should be, and found two mutations.

I would definelty push for genetic testing.
 
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