mom2maxandcharlie
New member
Aunt Cob,
<br />
<br />I PM'd you with a few questions. Hope you don't mind!
<br />
<br />I PM'd you with a few questions. Hope you don't mind!
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Sweat Chloride Test Poll
- Thread starter mom2maxandcharlie
- Start date
Hi Mom2Max&Charlie - How have you and your little one been? I find it amusing that you posted on the exact same topic that I have considered addressing...those blasted sweat tests! It seems that so many people on this website with confirmed CF have had sweat testing nightmares. What kind of a hairbrained test is this, anyway? I have a science major, and I think I remember you are educated in nutrition science or something like that? If sweat tests were a science experiment, they would have a serious lack of accuracy, repeatability, and precision. In fact, data would probably be thrown out left and right. I'm still waiting on my daughter's genetic test. Her sweat tests were at the high end of normal. I'll let you know the results.
Hi Mom2Max&Charlie - How have you and your little one been? I find it amusing that you posted on the exact same topic that I have considered addressing...those blasted sweat tests! It seems that so many people on this website with confirmed CF have had sweat testing nightmares. What kind of a hairbrained test is this, anyway? I have a science major, and I think I remember you are educated in nutrition science or something like that? If sweat tests were a science experiment, they would have a serious lack of accuracy, repeatability, and precision. In fact, data would probably be thrown out left and right. I'm still waiting on my daughter's genetic test. Her sweat tests were at the high end of normal. I'll let you know the results.
Hi Mom2Max&Charlie - How have you and your little one been? I find it amusing that you posted on the exact same topic that I have considered addressing...those blasted sweat tests! It seems that so many people on this website with confirmed CF have had sweat testing nightmares. What kind of a hairbrained test is this, anyway? I have a science major, and I think I remember you are educated in nutrition science or something like that? If sweat tests were a science experiment, they would have a serious lack of accuracy, repeatability, and precision. In fact, data would probably be thrown out left and right. I'm still waiting on my daughter's genetic test. Her sweat tests were at the high end of normal. I'll let you know the results.
mom2cameron
New member
My son was tested at 4 weeks and his results were 105. We also had genetic blood testing done so we could know his 2nd mutation(his first one we found out on his newborn screening test). My 2 other kids did the sweat test and one came back real low (cant remember the number...something like 5 or 7) and my daughter came back 29, they retested her and it came back 27. It still stresses me. I think she needs to have the blood work done but they wont do it beacause they say it will be her decision once she is older to find out if she is a carrier or not. She craves lots of salty stuff. On french fries she uses a salt packet and then what falls off she rubs her finger on it and licks it. (crazy kid lol)
mom2cameron
New member
My son was tested at 4 weeks and his results were 105. We also had genetic blood testing done so we could know his 2nd mutation(his first one we found out on his newborn screening test). My 2 other kids did the sweat test and one came back real low (cant remember the number...something like 5 or 7) and my daughter came back 29, they retested her and it came back 27. It still stresses me. I think she needs to have the blood work done but they wont do it beacause they say it will be her decision once she is older to find out if she is a carrier or not. She craves lots of salty stuff. On french fries she uses a salt packet and then what falls off she rubs her finger on it and licks it. (crazy kid lol)
mom2cameron
New member
My son was tested at 4 weeks and his results were 105. We also had genetic blood testing done so we could know his 2nd mutation(his first one we found out on his newborn screening test). My 2 other kids did the sweat test and one came back real low (cant remember the number...something like 5 or 7) and my daughter came back 29, they retested her and it came back 27. It still stresses me. I think she needs to have the blood work done but they wont do it beacause they say it will be her decision once she is older to find out if she is a carrier or not. She craves lots of salty stuff. On french fries she uses a salt packet and then what falls off she rubs her finger on it and licks it. (crazy kid lol)
I keep an eye on threads like this because I was tested low normal as a baby and in my late 20s. I have no mutations according to a 95 mutation panel, but every once in a while I wonder if I should pay outa pocket for Ambry. It would be hard for me to get coverage because despite the lung damage, I don't culture typical CF bacteria.
Anyway, LouLou's son is the only person I've see on this board with CF and sweat test below 20. I might be wrong though.
Here are the results of a poll that ran a while back on this site. 91 respondents.
The question went: I or my child has CF and the sweat test results were...
Positive (>60 mEq/L)
67%
Borderline (40-60 mEq/L)
14%
Negative (<40 mEq/L)
8%
I do not know/remember
11%
Anyway, LouLou's son is the only person I've see on this board with CF and sweat test below 20. I might be wrong though.
Here are the results of a poll that ran a while back on this site. 91 respondents.
The question went: I or my child has CF and the sweat test results were...
Positive (>60 mEq/L)
67%
Borderline (40-60 mEq/L)
14%
Negative (<40 mEq/L)
8%
I do not know/remember
11%
I keep an eye on threads like this because I was tested low normal as a baby and in my late 20s. I have no mutations according to a 95 mutation panel, but every once in a while I wonder if I should pay outa pocket for Ambry. It would be hard for me to get coverage because despite the lung damage, I don't culture typical CF bacteria.
Anyway, LouLou's son is the only person I've see on this board with CF and sweat test below 20. I might be wrong though.
Here are the results of a poll that ran a while back on this site. 91 respondents.
The question went: I or my child has CF and the sweat test results were...
Positive (>60 mEq/L)
67%
Borderline (40-60 mEq/L)
14%
Negative (<40 mEq/L)
8%
I do not know/remember
11%
Anyway, LouLou's son is the only person I've see on this board with CF and sweat test below 20. I might be wrong though.
Here are the results of a poll that ran a while back on this site. 91 respondents.
The question went: I or my child has CF and the sweat test results were...
Positive (>60 mEq/L)
67%
Borderline (40-60 mEq/L)
14%
Negative (<40 mEq/L)
8%
I do not know/remember
11%
I keep an eye on threads like this because I was tested low normal as a baby and in my late 20s. I have no mutations according to a 95 mutation panel, but every once in a while I wonder if I should pay outa pocket for Ambry. It would be hard for me to get coverage because despite the lung damage, I don't culture typical CF bacteria.
<br />Anyway, LouLou's son is the only person I've see on this board with CF and sweat test below 20. I might be wrong though.
<br />Here are the results of a poll that ran a while back on this site. 91 respondents.
<br />The question went: I or my child has CF and the sweat test results were...
<br />Positive (>60 mEq/L)
<br /> 67%
<br />Borderline (40-60 mEq/L)
<br /> 14%
<br />Negative (<40 mEq/L)
<br /> 8%
<br />I do not know/remember
<br /> 11%
<br />Anyway, LouLou's son is the only person I've see on this board with CF and sweat test below 20. I might be wrong though.
<br />Here are the results of a poll that ran a while back on this site. 91 respondents.
<br />The question went: I or my child has CF and the sweat test results were...
<br />Positive (>60 mEq/L)
<br /> 67%
<br />Borderline (40-60 mEq/L)
<br /> 14%
<br />Negative (<40 mEq/L)
<br /> 8%
<br />I do not know/remember
<br /> 11%
W
windex125
Guest
I was diagnosed as a baby/undiagnosed at age 8 because of borderline tests but was always sickly diagnosed at 20 with bronchiectasis (which with the MAC now) has totally destroyed my lung. Retested in my 20's borderline again but finally started being treated at a CF center. At 36 finally found 2nd mutation with blood work and shortly after nasal cloride tested proved postive.Melissa75 can you tell me how you treat yr. bronchiectasis agressively if you do not want to post please PM me I wld so appreciate it. Pat 55/CF
W
windex125
Guest
I was diagnosed as a baby/undiagnosed at age 8 because of borderline tests but was always sickly diagnosed at 20 with bronchiectasis (which with the MAC now) has totally destroyed my lung. Retested in my 20's borderline again but finally started being treated at a CF center. At 36 finally found 2nd mutation with blood work and shortly after nasal cloride tested proved postive.Melissa75 can you tell me how you treat yr. bronchiectasis agressively if you do not want to post please PM me I wld so appreciate it. Pat 55/CF
W
windex125
Guest
I was diagnosed as a baby/undiagnosed at age 8 because of borderline tests but was always sickly diagnosed at 20 with bronchiectasis (which with the MAC now) has totally destroyed my lung. Retested in my 20's borderline again but finally started being treated at a CF center. At 36 finally found 2nd mutation with blood work and shortly after nasal cloride tested proved postive.Melissa75 can you tell me how you treat yr. bronchiectasis agressively if you do not want to post please PM me I wld so appreciate it. Pat 55/CF
W
windex125
Guest
I was diagnosed as a baby/undiagnosed at age 8 because of borderline tests but was always sickly diagnosed at 20 with bronchiectasis (which with the MAC now) has totally destroyed my lung. Retested in my 20's borderline again but finally started being treated at a CF center. At 36 finally found 2nd mutation with blood work and shortly after nasal cloride tested proved postive.Melissa75 can you tell me how you treat yr. bronchiectasis agressively if you do not want to post please PM me I wld so appreciate it. Pat 55/CF
W
windex125
Guest
I was diagnosed as a baby/undiagnosed at age 8 because of borderline tests but was always sickly diagnosed at 20 with bronchiectasis (which with the MAC now) has totally destroyed my lung. Retested in my 20's borderline again but finally started being treated at a CF center. At 36 finally found 2nd mutation with blood work and shortly after nasal cloride tested proved postive.Melissa75 can you tell me how you treat yr. bronchiectasis agressively if you do not want to post please PM me I wld so appreciate it. Pat 55/CF
W
windex125
Guest
I was diagnosed as a baby/undiagnosed at age 8 because of borderline tests but was always sickly diagnosed at 20 with bronchiectasis (which with the MAC now) has totally destroyed my lung. Retested in my 20's borderline again but finally started being treated at a CF center. At 36 finally found 2nd mutation with blood work and shortly after nasal cloride tested proved postive.Melissa75 can you tell me how you treat yr. bronchiectasis agressively if you do not want to post please PM me I wld so appreciate it. Pat 55/CF
mom2maxandcharlie
New member
Thanks everyone for the response! And Melissa, thanks for your poll information. May I ask...have you had any other CF symptoms (malabsorption, etc)?