General Update

A

AbbysMama

New member
Hi, Heather,

I'll keep everyone posted. I hope to check the forum more often now that grad school is slowing down, but there are no guarantees. You all know how that goes!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Hope that you've been doing well.

Em
 
A

AbbysMama

New member
Hi, Heather,

I'll keep everyone posted. I hope to check the forum more often now that grad school is slowing down, but there are no guarantees. You all know how that goes!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Hope that you've been doing well.

Em
 
A

AbbysMama

New member
Hi, Heather,

I'll keep everyone posted. I hope to check the forum more often now that grad school is slowing down, but there are no guarantees. You all know how that goes!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Hope that you've been doing well.

Em
 
A

AbbysMama

New member
Hi, Heather,

I'll keep everyone posted. I hope to check the forum more often now that grad school is slowing down, but there are no guarantees. You all know how that goes!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Hope that you've been doing well.

Em
 
A

AbbysMama

New member
Hi, Heather,
<br />
<br />I'll keep everyone posted. I hope to check the forum more often now that grad school is slowing down, but there are no guarantees. You all know how that goes!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Hope that you've been doing well.
<br />
<br />Em
 
C

cfguide

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AbbysMama</b></i>


Can anyone tell me how sweat tests are usually done, what I should expect at the appointment, etc.?


Em</end quote></div>

Hi Emily,

I can't help you with understanding why your doctor wants a sweat test since 2 mutations have already been identified in Abby. It is not uncommon for sweat testing to be ordered if only 1 mutation was found - in this case it would be to determine if she was a carrier or if she had CF. Now that you've had time for it to sink in, I would ask your doctor to explain his or her rationale for sweat testing.

Now, that being said, I <b>CAN</b> help you with information about what to expect during a sweat test...

Abby is 2 years old, so the will probably do the test on her forearm. If her forearm is not big enough, they will most likely use her thigh. Two electrodes and a small dose of a drug that induces sweating called "pilocarpine" will be placed on her arm/leg. A small electrical current will be delivered through the electrodes to help the pilocarpine stimulate sweat. This will not hurt Abby, but she may feel a slight "tingling" sensation.

After about 10 minutes, the current will be stopped and the electrodes will be removed. A piece of filter paper covered in plastic will be placed on the test site, and from there you will just wait (usually 30-45 minutes) until there is enough sweat on the paper to test.

Hope that helps.
 
C

cfguide

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AbbysMama</b></i>


Can anyone tell me how sweat tests are usually done, what I should expect at the appointment, etc.?


Em</end quote></div>

Hi Emily,

I can't help you with understanding why your doctor wants a sweat test since 2 mutations have already been identified in Abby. It is not uncommon for sweat testing to be ordered if only 1 mutation was found - in this case it would be to determine if she was a carrier or if she had CF. Now that you've had time for it to sink in, I would ask your doctor to explain his or her rationale for sweat testing.

Now, that being said, I <b>CAN</b> help you with information about what to expect during a sweat test...

Abby is 2 years old, so the will probably do the test on her forearm. If her forearm is not big enough, they will most likely use her thigh. Two electrodes and a small dose of a drug that induces sweating called "pilocarpine" will be placed on her arm/leg. A small electrical current will be delivered through the electrodes to help the pilocarpine stimulate sweat. This will not hurt Abby, but she may feel a slight "tingling" sensation.

After about 10 minutes, the current will be stopped and the electrodes will be removed. A piece of filter paper covered in plastic will be placed on the test site, and from there you will just wait (usually 30-45 minutes) until there is enough sweat on the paper to test.

Hope that helps.
 
C

cfguide

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AbbysMama</b></i>


Can anyone tell me how sweat tests are usually done, what I should expect at the appointment, etc.?


Em</end quote></div>

Hi Emily,

I can't help you with understanding why your doctor wants a sweat test since 2 mutations have already been identified in Abby. It is not uncommon for sweat testing to be ordered if only 1 mutation was found - in this case it would be to determine if she was a carrier or if she had CF. Now that you've had time for it to sink in, I would ask your doctor to explain his or her rationale for sweat testing.

Now, that being said, I <b>CAN</b> help you with information about what to expect during a sweat test...

Abby is 2 years old, so the will probably do the test on her forearm. If her forearm is not big enough, they will most likely use her thigh. Two electrodes and a small dose of a drug that induces sweating called "pilocarpine" will be placed on her arm/leg. A small electrical current will be delivered through the electrodes to help the pilocarpine stimulate sweat. This will not hurt Abby, but she may feel a slight "tingling" sensation.

After about 10 minutes, the current will be stopped and the electrodes will be removed. A piece of filter paper covered in plastic will be placed on the test site, and from there you will just wait (usually 30-45 minutes) until there is enough sweat on the paper to test.

Hope that helps.
 
C

cfguide

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AbbysMama</b></i>


Can anyone tell me how sweat tests are usually done, what I should expect at the appointment, etc.?


Em</end quote>

Hi Emily,

I can't help you with understanding why your doctor wants a sweat test since 2 mutations have already been identified in Abby. It is not uncommon for sweat testing to be ordered if only 1 mutation was found - in this case it would be to determine if she was a carrier or if she had CF. Now that you've had time for it to sink in, I would ask your doctor to explain his or her rationale for sweat testing.

Now, that being said, I <b>CAN</b> help you with information about what to expect during a sweat test...

Abby is 2 years old, so the will probably do the test on her forearm. If her forearm is not big enough, they will most likely use her thigh. Two electrodes and a small dose of a drug that induces sweating called "pilocarpine" will be placed on her arm/leg. A small electrical current will be delivered through the electrodes to help the pilocarpine stimulate sweat. This will not hurt Abby, but she may feel a slight "tingling" sensation.

After about 10 minutes, the current will be stopped and the electrodes will be removed. A piece of filter paper covered in plastic will be placed on the test site, and from there you will just wait (usually 30-45 minutes) until there is enough sweat on the paper to test.

Hope that helps.
 
C

cfguide

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AbbysMama</b></i>
<br />
<br />
<br />Can anyone tell me how sweat tests are usually done, what I should expect at the appointment, etc.?
<br />
<br />
<br />Em</end quote>
<br />
<br />Hi Emily,
<br />
<br />I can't help you with understanding why your doctor wants a sweat test since 2 mutations have already been identified in Abby. It is not uncommon for sweat testing to be ordered if only 1 mutation was found - in this case it would be to determine if she was a carrier or if she had CF. Now that you've had time for it to sink in, I would ask your doctor to explain his or her rationale for sweat testing.
<br />
<br />Now, that being said, I <b>CAN</b> help you with information about what to expect during a sweat test...
<br />
<br />Abby is 2 years old, so the will probably do the test on her forearm. If her forearm is not big enough, they will most likely use her thigh. Two electrodes and a small dose of a drug that induces sweating called "pilocarpine" will be placed on her arm/leg. A small electrical current will be delivered through the electrodes to help the pilocarpine stimulate sweat. This will not hurt Abby, but she may feel a slight "tingling" sensation.
<br />
<br />After about 10 minutes, the current will be stopped and the electrodes will be removed. A piece of filter paper covered in plastic will be placed on the test site, and from there you will just wait (usually 30-45 minutes) until there is enough sweat on the paper to test.
<br />
<br />Hope that helps.
<br />
<br />
 
A

Alyssa

New member
Emily - I too think that the doctor may have said that just to get an idea of how much function the CFTR is putting out, but it shouldn't/isn't going to change much else as far as knowing what to expect or deciding about preventative care.

For what it's worth - my kids sweat test numbers are:
daughter 38
son 41

Daughter should have started treatments at age 5 when we saw symptoms, but because of her sweat test number she was misdiagnosed until genetic testing was done at age 13.

Son was diagnosed with genetic testing at age 18 but no treatment was given until age 21 when symptoms appeared.

Both kids were given sweat tests after the genetic testing just to see what the numbers were - I was curious too so I never asked "why" The doctor just said he wanted to be thorough and <b>I'm pretty sure it needs to be in their file - I was told when we switched clinics that the new clinic needed both the genetic test and sweat test results in his file because </b><b>it is required documentation for the CFF certification of a clinic</b>.... so I'd have to say that is the biggest reason why doctors will still do a sweat test after genetic testing.
 
A

Alyssa

New member
Emily - I too think that the doctor may have said that just to get an idea of how much function the CFTR is putting out, but it shouldn't/isn't going to change much else as far as knowing what to expect or deciding about preventative care.

For what it's worth - my kids sweat test numbers are:
daughter 38
son 41

Daughter should have started treatments at age 5 when we saw symptoms, but because of her sweat test number she was misdiagnosed until genetic testing was done at age 13.

Son was diagnosed with genetic testing at age 18 but no treatment was given until age 21 when symptoms appeared.

Both kids were given sweat tests after the genetic testing just to see what the numbers were - I was curious too so I never asked "why" The doctor just said he wanted to be thorough and <b>I'm pretty sure it needs to be in their file - I was told when we switched clinics that the new clinic needed both the genetic test and sweat test results in his file because </b><b>it is required documentation for the CFF certification of a clinic</b>.... so I'd have to say that is the biggest reason why doctors will still do a sweat test after genetic testing.
 
A

Alyssa

New member
Emily - I too think that the doctor may have said that just to get an idea of how much function the CFTR is putting out, but it shouldn't/isn't going to change much else as far as knowing what to expect or deciding about preventative care.

For what it's worth - my kids sweat test numbers are:
daughter 38
son 41

Daughter should have started treatments at age 5 when we saw symptoms, but because of her sweat test number she was misdiagnosed until genetic testing was done at age 13.

Son was diagnosed with genetic testing at age 18 but no treatment was given until age 21 when symptoms appeared.

Both kids were given sweat tests after the genetic testing just to see what the numbers were - I was curious too so I never asked "why" The doctor just said he wanted to be thorough and <b>I'm pretty sure it needs to be in their file - I was told when we switched clinics that the new clinic needed both the genetic test and sweat test results in his file because </b><b>it is required documentation for the CFF certification of a clinic</b>.... so I'd have to say that is the biggest reason why doctors will still do a sweat test after genetic testing.
 
A

Alyssa

New member
Emily - I too think that the doctor may have said that just to get an idea of how much function the CFTR is putting out, but it shouldn't/isn't going to change much else as far as knowing what to expect or deciding about preventative care.

For what it's worth - my kids sweat test numbers are:
daughter 38
son 41

Daughter should have started treatments at age 5 when we saw symptoms, but because of her sweat test number she was misdiagnosed until genetic testing was done at age 13.

Son was diagnosed with genetic testing at age 18 but no treatment was given until age 21 when symptoms appeared.

Both kids were given sweat tests after the genetic testing just to see what the numbers were - I was curious too so I never asked "why" The doctor just said he wanted to be thorough and <b>I'm pretty sure it needs to be in their file - I was told when we switched clinics that the new clinic needed both the genetic test and sweat test results in his file because </b><b>it is required documentation for the CFF certification of a clinic</b>.... so I'd have to say that is the biggest reason why doctors will still do a sweat test after genetic testing.
 
A

Alyssa

New member
Emily - I too think that the doctor may have said that just to get an idea of how much function the CFTR is putting out, but it shouldn't/isn't going to change much else as far as knowing what to expect or deciding about preventative care.
<br />
<br />For what it's worth - my kids sweat test numbers are:
<br />daughter 38
<br />son 41
<br />
<br />Daughter should have started treatments at age 5 when we saw symptoms, but because of her sweat test number she was misdiagnosed until genetic testing was done at age 13.
<br />
<br />Son was diagnosed with genetic testing at age 18 but no treatment was given until age 21 when symptoms appeared.
<br />
<br />Both kids were given sweat tests after the genetic testing just to see what the numbers were - I was curious too so I never asked "why" The doctor just said he wanted to be thorough and <b>I'm pretty sure it needs to be in their file - I was told when we switched clinics that the new clinic needed both the genetic test and sweat test results in his file because </b><b>it is required documentation for the CFF certification of a clinic</b>.... so I'd have to say that is the biggest reason why doctors will still do a sweat test after genetic testing.
 
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