Lost.... ?

[newarmywife]

My 17/mo old son is having a sweat test tomorrow, along with blood work (not genetic testing), and stool samples. When I first started looking on the web about cf thtis morning, I thought - oh there's no way that's it, but now after looking through some of the posts here, I'm very scared.
What I would like to know, is if there is anything I can do to make sure the sweat tests come out as accurately as possible, I'd hate to have an incorrect result.

He's been having diharrea for a few months now, along with colds, ear infections and most recently a stomach virus. He's also had somewhat of a dry cough that's not productive - I hadn't realized the lung symptoms varied...

 

[newarmywife]

My 17/mo old son is having a sweat test tomorrow, along with blood work (not genetic testing), and stool samples. When I first started looking on the web about cf thtis morning, I thought - oh there's no way that's it, but now after looking through some of the posts here, I'm very scared.
What I would like to know, is if there is anything I can do to make sure the sweat tests come out as accurately as possible, I'd hate to have an incorrect result.

He's been having diharrea for a few months now, along with colds, ear infections and most recently a stomach virus. He's also had somewhat of a dry cough that's not productive - I hadn't realized the lung symptoms varied...

 

[newarmywife]

My 17/mo old son is having a sweat test tomorrow, along with blood work (not genetic testing), and stool samples. When I first started looking on the web about cf thtis morning, I thought - oh there's no way that's it, but now after looking through some of the posts here, I'm very scared.
What I would like to know, is if there is anything I can do to make sure the sweat tests come out as accurately as possible, I'd hate to have an incorrect result.

He's been having diharrea for a few months now, along with colds, ear infections and most recently a stomach virus. He's also had somewhat of a dry cough that's not productive - I hadn't realized the lung symptoms varied...

 

[ktsmom]

Hi - your best bet for the sweat test is for it to be done at an accredited CF center. At the very least you want a place that does them frequently. If they have to break out the instructions to run the equipment and/or conduct the test, that is not a good sign. I don't mean to be glib - we just went through a bad experience with our first round of sweat tests and if I knew then what I know now.....

If will not be at an accredited center, ask questions of the lab tech: how often do they perform the test? what is the method they will use? (our first round of tests was done COMPLETELY differently than the 'real' one, done at the actual CF doctor's office). ASK for a supervisor if you don't feel comfortable with the tech's abilities. At the first, cr*ppy place, they did a second test on my daughter's other arm because they didn't feel comfortable with the results of the first.

Here is the one that works, as best as I remember: they clean a spot on the lower arm and then put a gel on it; they place an electrode on a disc about the size of a quarter and generate a light electric current to generate sweat; then they place something different on this same spot that has a tiny coil of tiny tubing; the tubing collects the sweat; after the sweat is collected in the tubing, they extract it into a syringe and go test it for chloride content. If they do the sweat test frequently at the facility they should be able to tell you the results in about 5 minutes.

I feel like I'm rambling. Sorry, I've had a crazy day. I just wanted you to get some idea of what to expect and I hope this is somewhat helpful. Good luck tomorrow and let us know!

oh and p.s. - "it doesn't hurt" is I think, for a child your age, incorrect. The electric pulse is uncomfortable and scary, I think, for a kid, and it has to happen for some time in order to generate the sweat. Once the tubing collector is placed then it doesn't hurt anymore.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

Hi - your best bet for the sweat test is for it to be done at an accredited CF center. At the very least you want a place that does them frequently. If they have to break out the instructions to run the equipment and/or conduct the test, that is not a good sign. I don't mean to be glib - we just went through a bad experience with our first round of sweat tests and if I knew then what I know now.....

If will not be at an accredited center, ask questions of the lab tech: how often do they perform the test? what is the method they will use? (our first round of tests was done COMPLETELY differently than the 'real' one, done at the actual CF doctor's office). ASK for a supervisor if you don't feel comfortable with the tech's abilities. At the first, cr*ppy place, they did a second test on my daughter's other arm because they didn't feel comfortable with the results of the first.

Here is the one that works, as best as I remember: they clean a spot on the lower arm and then put a gel on it; they place an electrode on a disc about the size of a quarter and generate a light electric current to generate sweat; then they place something different on this same spot that has a tiny coil of tiny tubing; the tubing collects the sweat; after the sweat is collected in the tubing, they extract it into a syringe and go test it for chloride content. If they do the sweat test frequently at the facility they should be able to tell you the results in about 5 minutes.

I feel like I'm rambling. Sorry, I've had a crazy day. I just wanted you to get some idea of what to expect and I hope this is somewhat helpful. Good luck tomorrow and let us know!

oh and p.s. - "it doesn't hurt" is I think, for a child your age, incorrect. The electric pulse is uncomfortable and scary, I think, for a kid, and it has to happen for some time in order to generate the sweat. Once the tubing collector is placed then it doesn't hurt anymore.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

Hi - your best bet for the sweat test is for it to be done at an accredited CF center. At the very least you want a place that does them frequently. If they have to break out the instructions to run the equipment and/or conduct the test, that is not a good sign. I don't mean to be glib - we just went through a bad experience with our first round of sweat tests and if I knew then what I know now.....

If will not be at an accredited center, ask questions of the lab tech: how often do they perform the test? what is the method they will use? (our first round of tests was done COMPLETELY differently than the 'real' one, done at the actual CF doctor's office). ASK for a supervisor if you don't feel comfortable with the tech's abilities. At the first, cr*ppy place, they did a second test on my daughter's other arm because they didn't feel comfortable with the results of the first.

Here is the one that works, as best as I remember: they clean a spot on the lower arm and then put a gel on it; they place an electrode on a disc about the size of a quarter and generate a light electric current to generate sweat; then they place something different on this same spot that has a tiny coil of tiny tubing; the tubing collects the sweat; after the sweat is collected in the tubing, they extract it into a syringe and go test it for chloride content. If they do the sweat test frequently at the facility they should be able to tell you the results in about 5 minutes.

I feel like I'm rambling. Sorry, I've had a crazy day. I just wanted you to get some idea of what to expect and I hope this is somewhat helpful. Good luck tomorrow and let us know!

oh and p.s. - "it doesn't hurt" is I think, for a child your age, incorrect. The electric pulse is uncomfortable and scary, I think, for a kid, and it has to happen for some time in order to generate the sweat. Once the tubing collector is placed then it doesn't hurt anymore.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[Alyssa]

Ditto to the accredited facility.

Hopefully he will be clearly in the normal range -- if it is anywhere in the 30's ask for a retest and genetic testing

See my blog entry about sweat tests (link in my signature line) Even if it is done properly at an accredited facility, just because it fall within the "normal or borderline" range it is still very possible to have CF.

Best of luck - be sure to tell us what happens

 

[Alyssa]

Ditto to the accredited facility.

Hopefully he will be clearly in the normal range -- if it is anywhere in the 30's ask for a retest and genetic testing

See my blog entry about sweat tests (link in my signature line) Even if it is done properly at an accredited facility, just because it fall within the "normal or borderline" range it is still very possible to have CF.

Best of luck - be sure to tell us what happens

 

[Alyssa]

Ditto to the accredited facility.

Hopefully he will be clearly in the normal range -- if it is anywhere in the 30's ask for a retest and genetic testing

See my blog entry about sweat tests (link in my signature line) Even if it is done properly at an accredited facility, just because it fall within the "normal or borderline" range it is still very possible to have CF.

Best of luck - be sure to tell us what happens

 

[newarmywife]

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


oh and p.s. - "it doesn't hurt" is I think, for a child your age, incorrect. The electric pulse is uncomfortable and scary, I think, for a kid, and it has to happen for some time in order to generate the sweat. Once the tubing collector is placed then it doesn't hurt anymore

</end quote></div>

Thank you for your honesty and what to expect I appreciate it...

 

[newarmywife]

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


oh and p.s. - "it doesn't hurt" is I think, for a child your age, incorrect. The electric pulse is uncomfortable and scary, I think, for a kid, and it has to happen for some time in order to generate the sweat. Once the tubing collector is placed then it doesn't hurt anymore

</end quote></div>

Thank you for your honesty and what to expect I appreciate it...

 

[newarmywife]

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


oh and p.s. - "it doesn't hurt" is I think, for a child your age, incorrect. The electric pulse is uncomfortable and scary, I think, for a kid, and it has to happen for some time in order to generate the sweat. Once the tubing collector is placed then it doesn't hurt anymore

</end quote></div>

Thank you for your honesty and what to expect I appreciate it...

 

[newarmywife]

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

Ditto to the accredited facility.



Hopefully he will be clearly in the normal range -- if it is anywhere in the 30's ask for a retest and genetic testing



See my blog entry about sweat tests (link in my signature line) Even if it is done properly at an accredited facility, just because it fall within the "normal or borderline" range it is still very possible to have CF.



Best of luck - be sure to tell us what happens</end quote></div>

I will tell you what happens. I actually read you blog and lurked around before replying, thats why I was so curious what actually happened, not what a website described it as. I would like to go to Denver, but the four hour drive with all the snow and my son sick isn't feasible. I will ask for a re-test and genetic testing if it's in the 30's. I may not have before finding this site, so thank you both for responding.

The one good thing is they have one tech who does these at the hospital we're going to... that's why we had to wait two days, so I hope they're good.

 

[newarmywife]

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

Ditto to the accredited facility.



Hopefully he will be clearly in the normal range -- if it is anywhere in the 30's ask for a retest and genetic testing



See my blog entry about sweat tests (link in my signature line) Even if it is done properly at an accredited facility, just because it fall within the "normal or borderline" range it is still very possible to have CF.



Best of luck - be sure to tell us what happens</end quote></div>

I will tell you what happens. I actually read you blog and lurked around before replying, thats why I was so curious what actually happened, not what a website described it as. I would like to go to Denver, but the four hour drive with all the snow and my son sick isn't feasible. I will ask for a re-test and genetic testing if it's in the 30's. I may not have before finding this site, so thank you both for responding.

The one good thing is they have one tech who does these at the hospital we're going to... that's why we had to wait two days, so I hope they're good.

 

[newarmywife]

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

Ditto to the accredited facility.



Hopefully he will be clearly in the normal range -- if it is anywhere in the 30's ask for a retest and genetic testing



See my blog entry about sweat tests (link in my signature line) Even if it is done properly at an accredited facility, just because it fall within the "normal or borderline" range it is still very possible to have CF.



Best of luck - be sure to tell us what happens</end quote></div>

I will tell you what happens. I actually read you blog and lurked around before replying, thats why I was so curious what actually happened, not what a website described it as. I would like to go to Denver, but the four hour drive with all the snow and my son sick isn't feasible. I will ask for a re-test and genetic testing if it's in the 30's. I may not have before finding this site, so thank you both for responding.

The one good thing is they have one tech who does these at the hospital we're going to... that's why we had to wait two days, so I hope they're good.

 

[newarmywife]

The lady had no idea what she was doing... she didn't even collect any sweat! I called my son's doctor that I will not take him back to her to repeat the test - so that if he needs testing for CF, then they will have to send us somewhere else.
It worked! he is calling a geneticist Monday to get us in. Thank you all for the advice and support, I hope that we rule out CF, but it is wonderful to know that you are here should I find out my little man does have the diease. Thank you.

 

[newarmywife]

The lady had no idea what she was doing... she didn't even collect any sweat! I called my son's doctor that I will not take him back to her to repeat the test - so that if he needs testing for CF, then they will have to send us somewhere else.
It worked! he is calling a geneticist Monday to get us in. Thank you all for the advice and support, I hope that we rule out CF, but it is wonderful to know that you are here should I find out my little man does have the diease. Thank you.

 

[newarmywife]

The lady had no idea what she was doing... she didn't even collect any sweat! I called my son's doctor that I will not take him back to her to repeat the test - so that if he needs testing for CF, then they will have to send us somewhere else.
It worked! he is calling a geneticist Monday to get us in. Thank you all for the advice and support, I hope that we rule out CF, but it is wonderful to know that you are here should I find out my little man does have the diease. Thank you.

 

[ktsmom]

Well you are certainly on a roller coaster ride and I'm so sorry for that! I'm glad your doc listened to you.

I'm curious - at the place where my daugther's first test was done they never collected sweat either. They put some kind of sensor disk on her arm, after they had generated the electric pulse, and there was a machine that did a real-time measurement and display. I've never known what that was all about......

I hope that you get the answers you need SOON and that it is not CF.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

Well you are certainly on a roller coaster ride and I'm so sorry for that! I'm glad your doc listened to you.

I'm curious - at the place where my daugther's first test was done they never collected sweat either. They put some kind of sensor disk on her arm, after they had generated the electric pulse, and there was a machine that did a real-time measurement and display. I've never known what that was all about......

I hope that you get the answers you need SOON and that it is not CF.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)