Sweat Test

K

ktsmom

New member
Welcome to this site, although I am always sorry for the circumstances when another person joins.

The hospital either didn't know what they were talking about or could only say "borderline" because they aren't really experienced enough to do appropriate counseling to explain a "positive", if that makes sense.

Of course none of it makes sense to you right now because you want answers. We had similar circumstances when my 3-year-old was diagnosed. The not knowing and the conflicting information is the worst. As others have suggested, don't mess around now with anything BUT the Ambry CF Amplified. If you are sticking with this doc, call and find out where they are sending the blood sample and what test they plan on ordering. This is a link to the Ambry page that might explain some things:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ambrygen.com/ts/ts_cf.aspx">Ambry</a>

Please keep asking questions - we are here for you. <img src="i/expressions/heart.gif" border="0">
 
K

ktsmom

New member
Welcome to this site, although I am always sorry for the circumstances when another person joins.

The hospital either didn't know what they were talking about or could only say "borderline" because they aren't really experienced enough to do appropriate counseling to explain a "positive", if that makes sense.

Of course none of it makes sense to you right now because you want answers. We had similar circumstances when my 3-year-old was diagnosed. The not knowing and the conflicting information is the worst. As others have suggested, don't mess around now with anything BUT the Ambry CF Amplified. If you are sticking with this doc, call and find out where they are sending the blood sample and what test they plan on ordering. This is a link to the Ambry page that might explain some things:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ambrygen.com/ts/ts_cf.aspx">Ambry</a>

Please keep asking questions - we are here for you. <img src="i/expressions/heart.gif" border="0">
 
K

ktsmom

New member
Welcome to this site, although I am always sorry for the circumstances when another person joins.

The hospital either didn't know what they were talking about or could only say "borderline" because they aren't really experienced enough to do appropriate counseling to explain a "positive", if that makes sense.

Of course none of it makes sense to you right now because you want answers. We had similar circumstances when my 3-year-old was diagnosed. The not knowing and the conflicting information is the worst. As others have suggested, don't mess around now with anything BUT the Ambry CF Amplified. If you are sticking with this doc, call and find out where they are sending the blood sample and what test they plan on ordering. This is a link to the Ambry page that might explain some things:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ambrygen.com/ts/ts_cf.aspx">Ambry</a>

Please keep asking questions - we are here for you. <img src="i/expressions/heart.gif" border="0">
 
K

ktsmom

New member
Welcome to this site, although I am always sorry for the circumstances when another person joins.

The hospital either didn't know what they were talking about or could only say "borderline" because they aren't really experienced enough to do appropriate counseling to explain a "positive", if that makes sense.

Of course none of it makes sense to you right now because you want answers. We had similar circumstances when my 3-year-old was diagnosed. The not knowing and the conflicting information is the worst. As others have suggested, don't mess around now with anything BUT the Ambry CF Amplified. If you are sticking with this doc, call and find out where they are sending the blood sample and what test they plan on ordering. This is a link to the Ambry page that might explain some things:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ambrygen.com/ts/ts_cf.aspx">Ambry</a>

Please keep asking questions - we are here for you. <img src="i/expressions/heart.gif" border="0">
 
K

ktsmom

New member
Welcome to this site, although I am always sorry for the circumstances when another person joins.
<br />
<br />The hospital either didn't know what they were talking about or could only say "borderline" because they aren't really experienced enough to do appropriate counseling to explain a "positive", if that makes sense.
<br />
<br />Of course none of it makes sense to you right now because you want answers. We had similar circumstances when my 3-year-old was diagnosed. The not knowing and the conflicting information is the worst. As others have suggested, don't mess around now with anything BUT the Ambry CF Amplified. If you are sticking with this doc, call and find out where they are sending the blood sample and what test they plan on ordering. This is a link to the Ambry page that might explain some things:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.ambrygen.com/ts/ts_cf.aspx">Ambry</a>
<br />
<br />Please keep asking questions - we are here for you. <img src="i/expressions/heart.gif" border="0">
 
H

hopesiris

Guest
You can always get copies of the test results and take them to a CF clinic. It wouldn't hurt to see if there is one close enough for you to get to and make an appointment. First appointments can take several hours (actually all appointments can take a couple of hours) so sometimes it's hard to get one quickly. Just a thought.
 
H

hopesiris

Guest
You can always get copies of the test results and take them to a CF clinic. It wouldn't hurt to see if there is one close enough for you to get to and make an appointment. First appointments can take several hours (actually all appointments can take a couple of hours) so sometimes it's hard to get one quickly. Just a thought.
 
H

hopesiris

Guest
You can always get copies of the test results and take them to a CF clinic. It wouldn't hurt to see if there is one close enough for you to get to and make an appointment. First appointments can take several hours (actually all appointments can take a couple of hours) so sometimes it's hard to get one quickly. Just a thought.
 
H

hopesiris

Guest
You can always get copies of the test results and take them to a CF clinic. It wouldn't hurt to see if there is one close enough for you to get to and make an appointment. First appointments can take several hours (actually all appointments can take a couple of hours) so sometimes it's hard to get one quickly. Just a thought.
 
H

hopesiris

Guest
You can always get copies of the test results and take them to a CF clinic. It wouldn't hurt to see if there is one close enough for you to get to and make an appointment. First appointments can take several hours (actually all appointments can take a couple of hours) so sometimes it's hard to get one quickly. Just a thought.
 
T

thefrogprincess

New member
I would like to say first that the sweat chloride test is not very difinitive. When I was born genetic testing was not available so the sweat test was all there was. Luckily my number was REALLY high so there was no doubt. But I wonder how many people were misdiagnosed.

Genetic testing is really the way to go no matter what your sweat test results are. Honestly, I'm not even sure why they use the sweat test anymore. You may have read that we always encourage people to have the genetic tests even if they get a negative sweat test.
 
T

thefrogprincess

New member
I would like to say first that the sweat chloride test is not very difinitive. When I was born genetic testing was not available so the sweat test was all there was. Luckily my number was REALLY high so there was no doubt. But I wonder how many people were misdiagnosed.

Genetic testing is really the way to go no matter what your sweat test results are. Honestly, I'm not even sure why they use the sweat test anymore. You may have read that we always encourage people to have the genetic tests even if they get a negative sweat test.
 
T

thefrogprincess

New member
I would like to say first that the sweat chloride test is not very difinitive. When I was born genetic testing was not available so the sweat test was all there was. Luckily my number was REALLY high so there was no doubt. But I wonder how many people were misdiagnosed.

Genetic testing is really the way to go no matter what your sweat test results are. Honestly, I'm not even sure why they use the sweat test anymore. You may have read that we always encourage people to have the genetic tests even if they get a negative sweat test.
 
T

thefrogprincess

New member
I would like to say first that the sweat chloride test is not very difinitive. When I was born genetic testing was not available so the sweat test was all there was. Luckily my number was REALLY high so there was no doubt. But I wonder how many people were misdiagnosed.

Genetic testing is really the way to go no matter what your sweat test results are. Honestly, I'm not even sure why they use the sweat test anymore. You may have read that we always encourage people to have the genetic tests even if they get a negative sweat test.
 
T

thefrogprincess

New member
I would like to say first that the sweat chloride test is not very difinitive. When I was born genetic testing was not available so the sweat test was all there was. Luckily my number was REALLY high so there was no doubt. But I wonder how many people were misdiagnosed.
<br />
<br />Genetic testing is really the way to go no matter what your sweat test results are. Honestly, I'm not even sure why they use the sweat test anymore. You may have read that we always encourage people to have the genetic tests even if they get a negative sweat test.
 
S

shoot4parr

New member
My son was diagnosed through genetic testing, and now the CF center is telling me that they still want to do a sweat test is this normal? I would think that it would be pointless and a waste of money. My concern is my stepson. His mother said she was tested with her 3rd pregnancy she is not a carrier. What I tried to explain to her and my boyfriend is that they only test for the the most common so he could have CF still. He has been diagnosed with Asthma and has always been small for his age. He was in and out of the hospital last year and none of the doctors seem to ever be able to put a diagnosis on his illness. He has lots of trouble with is bowels as well. He is 14 so I think it just never crossed anyone's mind but now that his half brother has CF I think all of our boys should be tested. Anyone have any suggestions?
 
S

shoot4parr

New member
My son was diagnosed through genetic testing, and now the CF center is telling me that they still want to do a sweat test is this normal? I would think that it would be pointless and a waste of money. My concern is my stepson. His mother said she was tested with her 3rd pregnancy she is not a carrier. What I tried to explain to her and my boyfriend is that they only test for the the most common so he could have CF still. He has been diagnosed with Asthma and has always been small for his age. He was in and out of the hospital last year and none of the doctors seem to ever be able to put a diagnosis on his illness. He has lots of trouble with is bowels as well. He is 14 so I think it just never crossed anyone's mind but now that his half brother has CF I think all of our boys should be tested. Anyone have any suggestions?
 
S

shoot4parr

New member
My son was diagnosed through genetic testing, and now the CF center is telling me that they still want to do a sweat test is this normal? I would think that it would be pointless and a waste of money. My concern is my stepson. His mother said she was tested with her 3rd pregnancy she is not a carrier. What I tried to explain to her and my boyfriend is that they only test for the the most common so he could have CF still. He has been diagnosed with Asthma and has always been small for his age. He was in and out of the hospital last year and none of the doctors seem to ever be able to put a diagnosis on his illness. He has lots of trouble with is bowels as well. He is 14 so I think it just never crossed anyone's mind but now that his half brother has CF I think all of our boys should be tested. Anyone have any suggestions?
 
S

shoot4parr

New member
My son was diagnosed through genetic testing, and now the CF center is telling me that they still want to do a sweat test is this normal? I would think that it would be pointless and a waste of money. My concern is my stepson. His mother said she was tested with her 3rd pregnancy she is not a carrier. What I tried to explain to her and my boyfriend is that they only test for the the most common so he could have CF still. He has been diagnosed with Asthma and has always been small for his age. He was in and out of the hospital last year and none of the doctors seem to ever be able to put a diagnosis on his illness. He has lots of trouble with is bowels as well. He is 14 so I think it just never crossed anyone's mind but now that his half brother has CF I think all of our boys should be tested. Anyone have any suggestions?
 
S

shoot4parr

New member
My son was diagnosed through genetic testing, and now the CF center is telling me that they still want to do a sweat test is this normal? I would think that it would be pointless and a waste of money. My concern is my stepson. His mother said she was tested with her 3rd pregnancy she is not a carrier. What I tried to explain to her and my boyfriend is that they only test for the the most common so he could have CF still. He has been diagnosed with Asthma and has always been small for his age. He was in and out of the hospital last year and none of the doctors seem to ever be able to put a diagnosis on his illness. He has lots of trouble with is bowels as well. He is 14 so I think it just never crossed anyone's mind but now that his half brother has CF I think all of our boys should be tested. Anyone have any suggestions?
 
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