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UNC this Friday

JennifersHope

New member
I will for sure update you, probably non stop if I know me, which in fact, I am pretty sure I do.
<br />
<br />I am just so sure it is going to be good.. you know how you know things sometimes????
<br />
<br />Thanks Guys
 

hmw

New member
Shawn was taking an Rx nasal spray and was told to discontinue that a week before the test and not to use any other nasal products or rinses in that time period. They wanted to avoid the potential for any disturbance to the natural state of his nasal epithelial(sp) tissue. They also needed him at his baseline condition (no colds or infection) since that can yield false negative results.

He did not have to discontinue his Singulair or albuterol.
 

hmw

New member
Shawn was taking an Rx nasal spray and was told to discontinue that a week before the test and not to use any other nasal products or rinses in that time period. They wanted to avoid the potential for any disturbance to the natural state of his nasal epithelial(sp) tissue. They also needed him at his baseline condition (no colds or infection) since that can yield false negative results.

He did not have to discontinue his Singulair or albuterol.
 

hmw

New member
Shawn was taking an Rx nasal spray and was told to discontinue that a week before the test and not to use any other nasal products or rinses in that time period. They wanted to avoid the potential for any disturbance to the natural state of his nasal epithelial(sp) tissue. They also needed him at his baseline condition (no colds or infection) since that can yield false negative results.
<br />
<br />He did not have to discontinue his Singulair or albuterol.
 

JennifersHope

New member
Well the stinker of the whole thing right now is I have a cold, really just a bad sore throat and stuffy nose

... Dear God please let it go away.... I would just lose my mind totally if this test didn't come back accurate.

Do you know of anything else that can cause false negatives or false positives, my sweat test is positive but addison's disease can cause false positives.

How is the sweat test measurement different then the nasal PD
 

JennifersHope

New member
Well the stinker of the whole thing right now is I have a cold, really just a bad sore throat and stuffy nose

... Dear God please let it go away.... I would just lose my mind totally if this test didn't come back accurate.

Do you know of anything else that can cause false negatives or false positives, my sweat test is positive but addison's disease can cause false positives.

How is the sweat test measurement different then the nasal PD
 

JennifersHope

New member
Well the stinker of the whole thing right now is I have a cold, really just a bad sore throat and stuffy nose
<br />
<br /> ... Dear God please let it go away.... I would just lose my mind totally if this test didn't come back accurate.
<br />
<br />Do you know of anything else that can cause false negatives or false positives, my sweat test is positive but addison's disease can cause false positives.
<br />
<br />How is the sweat test measurement different then the nasal PD
 

hmw

New member
I hope so too. The team at CHOP was absolutely adamant about Shawn being healthy for accuracy's sake. He has had some amount of congestion/sinusitis for years and a chronic asthma cough for at least a year and they were ok with that- but it had to be baseline-only, nothing caused by infection.

eta> just saw where you edited. False negatives can be caused by anything that alters the integrity of the epithelium, from what I've read and what I've been told. I haven't heard of anything that causes false positives.

It works very differently than a sweat test; instead of just testing the salt content of sweat, 5 different solutions are used and how the body responds to them is how they gauge cftr function. The electricity the body generates also is used to make the test work... it's really fascinating. One lead is attached to the arm, the other to the nose, and it generates it's own current.

<a target=_blank class=ftalternatingbarlinklarge href="http://ajcp.ascpjournals.org/content/supplements/117/Suppl_1/S109.full.pdf">Page 4 of this article goes into detail about NPD testing</a> , although it's now used more often diagnostically than it was at the time the article was written.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ionchannels.org/showabstract.php?pmid=16426521">Nasal Potential Difference Test to Diagnose Cystic Fibrosis</a>
 

hmw

New member
I hope so too. The team at CHOP was absolutely adamant about Shawn being healthy for accuracy's sake. He has had some amount of congestion/sinusitis for years and a chronic asthma cough for at least a year and they were ok with that- but it had to be baseline-only, nothing caused by infection.

eta> just saw where you edited. False negatives can be caused by anything that alters the integrity of the epithelium, from what I've read and what I've been told. I haven't heard of anything that causes false positives.

It works very differently than a sweat test; instead of just testing the salt content of sweat, 5 different solutions are used and how the body responds to them is how they gauge cftr function. The electricity the body generates also is used to make the test work... it's really fascinating. One lead is attached to the arm, the other to the nose, and it generates it's own current.

<a target=_blank class=ftalternatingbarlinklarge href="http://ajcp.ascpjournals.org/content/supplements/117/Suppl_1/S109.full.pdf">Page 4 of this article goes into detail about NPD testing</a> , although it's now used more often diagnostically than it was at the time the article was written.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ionchannels.org/showabstract.php?pmid=16426521">Nasal Potential Difference Test to Diagnose Cystic Fibrosis</a>
 

hmw

New member
I hope so too. The team at CHOP was absolutely adamant about Shawn being healthy for accuracy's sake. He has had some amount of congestion/sinusitis for years and a chronic asthma cough for at least a year and they were ok with that- but it had to be baseline-only, nothing caused by infection.
<br />
<br />eta> just saw where you edited. False negatives can be caused by anything that alters the integrity of the epithelium, from what I've read and what I've been told. I haven't heard of anything that causes false positives.
<br />
<br />It works very differently than a sweat test; instead of just testing the salt content of sweat, 5 different solutions are used and how the body responds to them is how they gauge cftr function. The electricity the body generates also is used to make the test work... it's really fascinating. One lead is attached to the arm, the other to the nose, and it generates it's own current.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://ajcp.ascpjournals.org/content/supplements/117/Suppl_1/S109.full.pdf">Page 4 of this article goes into detail about NPD testing</a> , although it's now used more often diagnostically than it was at the time the article was written.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.ionchannels.org/showabstract.php?pmid=16426521">Nasal Potential Difference Test to Diagnose Cystic Fibrosis</a>
 

JennifersHope

New member
I swear I should send you a fee for how helpful you have been to me. I really appreciate it so much.

I sent an email to Kathy the CF nurse there. She was not aware of any medications I needed to stop but passed my email along.

Please post the results for your son, when you know. I am on edge about it for you, I can't imagine how you feel
 

JennifersHope

New member
I swear I should send you a fee for how helpful you have been to me. I really appreciate it so much.

I sent an email to Kathy the CF nurse there. She was not aware of any medications I needed to stop but passed my email along.

Please post the results for your son, when you know. I am on edge about it for you, I can't imagine how you feel
 

JennifersHope

New member
I swear I should send you a fee for how helpful you have been to me. I really appreciate it so much.
<br />
<br />I sent an email to Kathy the CF nurse there. She was not aware of any medications I needed to stop but passed my email along.
<br />
<br />Please post the results for your son, when you know. I am on edge about it for you, I can't imagine how you feel
 
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