"Normal" sweat test

J

jaazavala

New member
My daughter had her first sweat test on monday and it was a 10. I am trying to find out how many of you out there have had a normal sweat test and what the number was. Also if you were tested at a certified cf center or not. Did they weigh the sweat to see if they had enuff?

My daughters ped. will not get her genetic testing done because her sweat test was normal. She tried to explain to me that people who have had normal sweat tests were not tested at a certified cf center or they did not have enuff sweat. I do not belive that. I am just trying to validate my fellings that my daughter may still have cf.

Thanks
 
J

jaazavala

New member
My daughter had her first sweat test on monday and it was a 10. I am trying to find out how many of you out there have had a normal sweat test and what the number was. Also if you were tested at a certified cf center or not. Did they weigh the sweat to see if they had enuff?

My daughters ped. will not get her genetic testing done because her sweat test was normal. She tried to explain to me that people who have had normal sweat tests were not tested at a certified cf center or they did not have enuff sweat. I do not belive that. I am just trying to validate my fellings that my daughter may still have cf.

Thanks
 
J

jaazavala

New member
My daughter had her first sweat test on monday and it was a 10. I am trying to find out how many of you out there have had a normal sweat test and what the number was. Also if you were tested at a certified cf center or not. Did they weigh the sweat to see if they had enuff?

My daughters ped. will not get her genetic testing done because her sweat test was normal. She tried to explain to me that people who have had normal sweat tests were not tested at a certified cf center or they did not have enuff sweat. I do not belive that. I am just trying to validate my fellings that my daughter may still have cf.

Thanks
 
J

jaazavala

New member
My daughter had her first sweat test on monday and it was a 10. I am trying to find out how many of you out there have had a normal sweat test and what the number was. Also if you were tested at a certified cf center or not. Did they weigh the sweat to see if they had enuff?

My daughters ped. will not get her genetic testing done because her sweat test was normal. She tried to explain to me that people who have had normal sweat tests were not tested at a certified cf center or they did not have enuff sweat. I do not belive that. I am just trying to validate my fellings that my daughter may still have cf.

Thanks
 
J

jaazavala

New member
My daughter had her first sweat test on monday and it was a 10. I am trying to find out how many of you out there have had a normal sweat test and what the number was. Also if you were tested at a certified cf center or not. Did they weigh the sweat to see if they had enuff?
<br />
<br />My daughters ped. will not get her genetic testing done because her sweat test was normal. She tried to explain to me that people who have had normal sweat tests were not tested at a certified cf center or they did not have enuff sweat. I do not belive that. I am just trying to validate my fellings that my daughter may still have cf.
<br />
<br />Thanks
 
S

sslondon

New member
"Normal

We have exactly the same question....Our son is almost four and has had a lot of CF symptoms since birth

- since birth, consistent vomiting mucus until he was about two
- multiple bouts of pneumonia (hospitalized once)
-cannot stave of a 'normal' cold without weeks (4+) of coughing followed by antibiotics
-refusal of bottle - failure to thrive until 2 years old when he was placed on reflux meds
-smelly foul-smelling stools (we have two older girls, there is no comparison)</UL>

He's currently on daily steroids along with reflux meds - every time he has another lung issue and is up coughing all night for weeks, we question CF again. When our son was one and 18 months, he had sweat tests done which both came back at 30. At the last appointment with the specialist (after another infection and weeks more of coughing) we pushed for genetic testing. He doesn't think it it necessary (suspects Asthma) based on the sweat test results. Is there any study out there that can give us some idea of how many others have normal sweat tests (<40) only to discover the mutation later in life?

really feeling in limbo right now....just want to rule out CF but with every bout it keeps lurking in our minds. Any advice?

in limbo in London (ON)
 
S

sslondon

New member
"Normal

We have exactly the same question....Our son is almost four and has had a lot of CF symptoms since birth

- since birth, consistent vomiting mucus until he was about two
- multiple bouts of pneumonia (hospitalized once)
-cannot stave of a 'normal' cold without weeks (4+) of coughing followed by antibiotics
-refusal of bottle - failure to thrive until 2 years old when he was placed on reflux meds
-smelly foul-smelling stools (we have two older girls, there is no comparison)</UL>

He's currently on daily steroids along with reflux meds - every time he has another lung issue and is up coughing all night for weeks, we question CF again. When our son was one and 18 months, he had sweat tests done which both came back at 30. At the last appointment with the specialist (after another infection and weeks more of coughing) we pushed for genetic testing. He doesn't think it it necessary (suspects Asthma) based on the sweat test results. Is there any study out there that can give us some idea of how many others have normal sweat tests (<40) only to discover the mutation later in life?

really feeling in limbo right now....just want to rule out CF but with every bout it keeps lurking in our minds. Any advice?

in limbo in London (ON)
 
S

sslondon

New member
"Normal

We have exactly the same question....Our son is almost four and has had a lot of CF symptoms since birth

- since birth, consistent vomiting mucus until he was about two
- multiple bouts of pneumonia (hospitalized once)
-cannot stave of a 'normal' cold without weeks (4+) of coughing followed by antibiotics
-refusal of bottle - failure to thrive until 2 years old when he was placed on reflux meds
-smelly foul-smelling stools (we have two older girls, there is no comparison)</UL>

He's currently on daily steroids along with reflux meds - every time he has another lung issue and is up coughing all night for weeks, we question CF again. When our son was one and 18 months, he had sweat tests done which both came back at 30. At the last appointment with the specialist (after another infection and weeks more of coughing) we pushed for genetic testing. He doesn't think it it necessary (suspects Asthma) based on the sweat test results. Is there any study out there that can give us some idea of how many others have normal sweat tests (<40) only to discover the mutation later in life?

really feeling in limbo right now....just want to rule out CF but with every bout it keeps lurking in our minds. Any advice?

in limbo in London (ON)
 
S

sslondon

New member
"Normal

We have exactly the same question....Our son is almost four and has had a lot of CF symptoms since birth

- since birth, consistent vomiting mucus until he was about two
- multiple bouts of pneumonia (hospitalized once)
-cannot stave of a 'normal' cold without weeks (4+) of coughing followed by antibiotics
-refusal of bottle - failure to thrive until 2 years old when he was placed on reflux meds
-smelly foul-smelling stools (we have two older girls, there is no comparison)</UL>

He's currently on daily steroids along with reflux meds - every time he has another lung issue and is up coughing all night for weeks, we question CF again. When our son was one and 18 months, he had sweat tests done which both came back at 30. At the last appointment with the specialist (after another infection and weeks more of coughing) we pushed for genetic testing. He doesn't think it it necessary (suspects Asthma) based on the sweat test results. Is there any study out there that can give us some idea of how many others have normal sweat tests (<40) only to discover the mutation later in life?

really feeling in limbo right now....just want to rule out CF but with every bout it keeps lurking in our minds. Any advice?

in limbo in London (ON)
 
S

sslondon

New member
"Normal

We have exactly the same question....Our son is almost four and has had a lot of CF symptoms since birth
<br />
<br />- since birth, consistent vomiting mucus until he was about two
<br />- multiple bouts of pneumonia (hospitalized once)
<br />-cannot stave of a 'normal' cold without weeks (4+) of coughing followed by antibiotics
<br />-refusal of bottle - failure to thrive until 2 years old when he was placed on reflux meds
<br />-smelly foul-smelling stools (we have two older girls, there is no comparison)</UL>
<br />
<br />He's currently on daily steroids along with reflux meds - every time he has another lung issue and is up coughing all night for weeks, we question CF again. When our son was one and 18 months, he had sweat tests done which both came back at 30. At the last appointment with the specialist (after another infection and weeks more of coughing) we pushed for genetic testing. He doesn't think it it necessary (suspects Asthma) based on the sweat test results. Is there any study out there that can give us some idea of how many others have normal sweat tests (<40) only to discover the mutation later in life?
<br />
<br />really feeling in limbo right now....just want to rule out CF but with every bout it keeps lurking in our minds. Any advice?
<br />
<br />in limbo in London (ON)
 
S

SandyCheeks

New member
"Normal

I am sorry that your son has had all of these problems.

I have not found a study that gives a number of people that are diagnosed later in life. I did find one study that found "sweat chloride concentrations of 30-60 mmol/l are seen in about 4% of sweat tests. 23% of these patients will subsequently be found to have 2 CFTR mutations. CF affected patients occur with similar frequency in the 30-40 mmol/l range as in the 40-60 mmol/l range". This particular author was "redefining" borderline for their study.

Here is the link
<a target=_blank class=ftalternatingbarlinklarge href="http://thorax.bmj.com/cgi/content/abstract/61/7/627
">http://thorax.bmj.com/cgi/content/abstract/61/7/627
</a>
I can only access the abstract link from home- at work I was able to get the full text.

I hope you are able to find answers to your son's issues.

Sandy
 
S

SandyCheeks

New member
"Normal

I am sorry that your son has had all of these problems.

I have not found a study that gives a number of people that are diagnosed later in life. I did find one study that found "sweat chloride concentrations of 30-60 mmol/l are seen in about 4% of sweat tests. 23% of these patients will subsequently be found to have 2 CFTR mutations. CF affected patients occur with similar frequency in the 30-40 mmol/l range as in the 40-60 mmol/l range". This particular author was "redefining" borderline for their study.

Here is the link
<a target=_blank class=ftalternatingbarlinklarge href="http://thorax.bmj.com/cgi/content/abstract/61/7/627
">http://thorax.bmj.com/cgi/content/abstract/61/7/627
</a>
I can only access the abstract link from home- at work I was able to get the full text.

I hope you are able to find answers to your son's issues.

Sandy
 
S

SandyCheeks

New member
"Normal

I am sorry that your son has had all of these problems.

I have not found a study that gives a number of people that are diagnosed later in life. I did find one study that found "sweat chloride concentrations of 30-60 mmol/l are seen in about 4% of sweat tests. 23% of these patients will subsequently be found to have 2 CFTR mutations. CF affected patients occur with similar frequency in the 30-40 mmol/l range as in the 40-60 mmol/l range". This particular author was "redefining" borderline for their study.

Here is the link
<a target=_blank class=ftalternatingbarlinklarge href="http://thorax.bmj.com/cgi/content/abstract/61/7/627
">http://thorax.bmj.com/cgi/content/abstract/61/7/627
</a>
I can only access the abstract link from home- at work I was able to get the full text.

I hope you are able to find answers to your son's issues.

Sandy
 
S

SandyCheeks

New member
"Normal

I am sorry that your son has had all of these problems.

I have not found a study that gives a number of people that are diagnosed later in life. I did find one study that found "sweat chloride concentrations of 30-60 mmol/l are seen in about 4% of sweat tests. 23% of these patients will subsequently be found to have 2 CFTR mutations. CF affected patients occur with similar frequency in the 30-40 mmol/l range as in the 40-60 mmol/l range". This particular author was "redefining" borderline for their study.

Here is the link
<a target=_blank class=ftalternatingbarlinklarge href="http://thorax.bmj.com/cgi/content/abstract/61/7/627
">http://thorax.bmj.com/cgi/content/abstract/61/7/627
</a>
I can only access the abstract link from home- at work I was able to get the full text.

I hope you are able to find answers to your son's issues.

Sandy
 
S

SandyCheeks

New member
"Normal

I am sorry that your son has had all of these problems.
<br />
<br />I have not found a study that gives a number of people that are diagnosed later in life. I did find one study that found "sweat chloride concentrations of 30-60 mmol/l are seen in about 4% of sweat tests. 23% of these patients will subsequently be found to have 2 CFTR mutations. CF affected patients occur with similar frequency in the 30-40 mmol/l range as in the 40-60 mmol/l range". This particular author was "redefining" borderline for their study.
<br />
<br />Here is the link
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://thorax.bmj.com/cgi/content/abstract/61/7/627
">http://thorax.bmj.com/cgi/content/abstract/61/7/627
</a><br />
<br />I can only access the abstract link from home- at work I was able to get the full text.
<br />
<br />I hope you are able to find answers to your son's issues.
<br />
<br />Sandy
<br />
 
M

mom4holly

New member
"Normal

Holly had several sweat test....her lowest was a 10 & ambry found 2 mutations. She is CF positive. She was pancreatic sufficient when she was dx but now requires enzymes. She was tested at an accredited center where she is still seen. Although I think it's very rare to find a positive CFer with a sweat test of 10 it isn't unheard of.
 
M

mom4holly

New member
"Normal

Holly had several sweat test....her lowest was a 10 & ambry found 2 mutations. She is CF positive. She was pancreatic sufficient when she was dx but now requires enzymes. She was tested at an accredited center where she is still seen. Although I think it's very rare to find a positive CFer with a sweat test of 10 it isn't unheard of.
 
M

mom4holly

New member
"Normal

Holly had several sweat test....her lowest was a 10 & ambry found 2 mutations. She is CF positive. She was pancreatic sufficient when she was dx but now requires enzymes. She was tested at an accredited center where she is still seen. Although I think it's very rare to find a positive CFer with a sweat test of 10 it isn't unheard of.
 
M

mom4holly

New member
"Normal

Holly had several sweat test....her lowest was a 10 & ambry found 2 mutations. She is CF positive. She was pancreatic sufficient when she was dx but now requires enzymes. She was tested at an accredited center where she is still seen. Although I think it's very rare to find a positive CFer with a sweat test of 10 it isn't unheard of.
 
M

mom4holly

New member
"Normal

Holly had several sweat test....her lowest was a 10 & ambry found 2 mutations. She is CF positive. She was pancreatic sufficient when she was dx but now requires enzymes. She was tested at an accredited center where she is still seen. Although I think it's very rare to find a positive CFer with a sweat test of 10 it isn't unheard of.
 
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