Lost.... ?

K

ktsmom

New member
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)
 
N

newarmywife

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

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)</end quote></div>

I hope it's not too, but it seems a little less scary since I found this site.
They put a sensor disk on his arm too and she told us the sweat would turn his arm blue - his arm is still blue after a bath, but she collected nothing! I'm assuming the means she put it in the incorrect place... ?
Did you have to go somewhere else too?
 
N

newarmywife

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

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)</end quote></div>

I hope it's not too, but it seems a little less scary since I found this site.
They put a sensor disk on his arm too and she told us the sweat would turn his arm blue - his arm is still blue after a bath, but she collected nothing! I'm assuming the means she put it in the incorrect place... ?
Did you have to go somewhere else too?
 
N

newarmywife

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

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)</end quote></div>

I hope it's not too, but it seems a little less scary since I found this site.
They put a sensor disk on his arm too and she told us the sweat would turn his arm blue - his arm is still blue after a bath, but she collected nothing! I'm assuming the means she put it in the incorrect place... ?
Did you have to go somewhere else too?
 
K

ktsmom

New member
Hmmm, curious and strange! Was there a read-out on a machine?? What was the sensor recording?? I don't recall that Katy's arm was blue but it is all a blur. Now I do remember that when the sweat was collected at the CF doc's office that the coil of tubing collecting the sweat did turn blue, which 'grew' longer (the volume of sweat in the tubing increased) as more sweat was collected. There was no blue spot left on Katy's arm.

If you mean by your question did we go somewhere else for a second opinion, the answer is yes. The first place that did the sweat test was the outpatient laboratory of a large hospital in Oklahoma City. The strange thing is the test results were positive but the lab tech was uncertain of the results (I guess he had never done one with positive readings; I'll never forget when the read-out on the machine was 62 he turned to me and asked "does your daughter cough alot?"). Then he called his supervisor, and they did another one on her other arm (result was 102). So we got two positives. Our ped then referred us to a CF doc a few days later, who did the test in the manner I described earlier.

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

ktsmom

New member
Hmmm, curious and strange! Was there a read-out on a machine?? What was the sensor recording?? I don't recall that Katy's arm was blue but it is all a blur. Now I do remember that when the sweat was collected at the CF doc's office that the coil of tubing collecting the sweat did turn blue, which 'grew' longer (the volume of sweat in the tubing increased) as more sweat was collected. There was no blue spot left on Katy's arm.

If you mean by your question did we go somewhere else for a second opinion, the answer is yes. The first place that did the sweat test was the outpatient laboratory of a large hospital in Oklahoma City. The strange thing is the test results were positive but the lab tech was uncertain of the results (I guess he had never done one with positive readings; I'll never forget when the read-out on the machine was 62 he turned to me and asked "does your daughter cough alot?"). Then he called his supervisor, and they did another one on her other arm (result was 102). So we got two positives. Our ped then referred us to a CF doc a few days later, who did the test in the manner I described earlier.

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

ktsmom

New member
Hmmm, curious and strange! Was there a read-out on a machine?? What was the sensor recording?? I don't recall that Katy's arm was blue but it is all a blur. Now I do remember that when the sweat was collected at the CF doc's office that the coil of tubing collecting the sweat did turn blue, which 'grew' longer (the volume of sweat in the tubing increased) as more sweat was collected. There was no blue spot left on Katy's arm.

If you mean by your question did we go somewhere else for a second opinion, the answer is yes. The first place that did the sweat test was the outpatient laboratory of a large hospital in Oklahoma City. The strange thing is the test results were positive but the lab tech was uncertain of the results (I guess he had never done one with positive readings; I'll never forget when the read-out on the machine was 62 he turned to me and asked "does your daughter cough alot?"). Then he called his supervisor, and they did another one on her other arm (result was 102). So we got two positives. Our ped then referred us to a CF doc a few days later, who did the test in the manner I described earlier.

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

Liamsmommy

New member
My sons arm went blue from our local hospitals sweat test and the lady had to read the box to figure out how to work the machine.....We are now having a sweat test at a childrens hospital and from what the lab told me its nothing like what they did at the local hospital!
I have been told that the test that makes the babys arm go blue isnt very acurate........
I would look into having the test redone some where else

Shawna
 
L

Liamsmommy

New member
My sons arm went blue from our local hospitals sweat test and the lady had to read the box to figure out how to work the machine.....We are now having a sweat test at a childrens hospital and from what the lab told me its nothing like what they did at the local hospital!
I have been told that the test that makes the babys arm go blue isnt very acurate........
I would look into having the test redone some where else

Shawna
 
L

Liamsmommy

New member
My sons arm went blue from our local hospitals sweat test and the lady had to read the box to figure out how to work the machine.....We are now having a sweat test at a childrens hospital and from what the lab told me its nothing like what they did at the local hospital!
I have been told that the test that makes the babys arm go blue isnt very acurate........
I would look into having the test redone some where else

Shawna
 
N

newarmywife

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

Hmmm, curious and strange! Was there a read-out on a machine?? What was the sensor recording?? I don't recall that Katy's arm was blue but it is all a blur. Now I do remember that when the sweat was collected at the CF doc's office that the coil of tubing collecting the sweat did turn blue, which 'grew' longer (the volume of sweat in the tubing increased) as more sweat was collected. There was no blue spot left on Katy's arm.
</end quote></div>

What she had was a kit she carried out, there was a small electronic box that she turned on that was supposed to help the electrodes stimulate sweat... ? (I don't know if I'm explaining that very well. The machine didn't have any kind of read-out, after she took the electrodes off, she put a collector around his arm with a bandage thing (like they use after they draw blood) and a heating pad.... ? All I noticed on the machine was a power light, but my son was furious, so I wasn't paying very much attention to it.
 
N

newarmywife

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

Hmmm, curious and strange! Was there a read-out on a machine?? What was the sensor recording?? I don't recall that Katy's arm was blue but it is all a blur. Now I do remember that when the sweat was collected at the CF doc's office that the coil of tubing collecting the sweat did turn blue, which 'grew' longer (the volume of sweat in the tubing increased) as more sweat was collected. There was no blue spot left on Katy's arm.
</end quote></div>

What she had was a kit she carried out, there was a small electronic box that she turned on that was supposed to help the electrodes stimulate sweat... ? (I don't know if I'm explaining that very well. The machine didn't have any kind of read-out, after she took the electrodes off, she put a collector around his arm with a bandage thing (like they use after they draw blood) and a heating pad.... ? All I noticed on the machine was a power light, but my son was furious, so I wasn't paying very much attention to it.
 
N

newarmywife

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

Hmmm, curious and strange! Was there a read-out on a machine?? What was the sensor recording?? I don't recall that Katy's arm was blue but it is all a blur. Now I do remember that when the sweat was collected at the CF doc's office that the coil of tubing collecting the sweat did turn blue, which 'grew' longer (the volume of sweat in the tubing increased) as more sweat was collected. There was no blue spot left on Katy's arm.
</end quote></div>

What she had was a kit she carried out, there was a small electronic box that she turned on that was supposed to help the electrodes stimulate sweat... ? (I don't know if I'm explaining that very well. The machine didn't have any kind of read-out, after she took the electrodes off, she put a collector around his arm with a bandage thing (like they use after they draw blood) and a heating pad.... ? All I noticed on the machine was a power light, but my son was furious, so I wasn't paying very much attention to it.
 
N

newarmywife

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

My sons arm went blue from our local hospitals sweat test and the lady had to read the box to figure out how to work the machine.....We are now having a sweat test at a childrens hospital and from what the lab told me its nothing like what they did at the local hospital!

I have been told that the test that makes the babys arm go blue isnt very acurate........

I would look into having the test redone some where else



Shawna</end quote></div>

Oh, I am thanks! We should find out where to go tomorrow.
 
N

newarmywife

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

My sons arm went blue from our local hospitals sweat test and the lady had to read the box to figure out how to work the machine.....We are now having a sweat test at a childrens hospital and from what the lab told me its nothing like what they did at the local hospital!

I have been told that the test that makes the babys arm go blue isnt very acurate........

I would look into having the test redone some where else



Shawna</end quote></div>

Oh, I am thanks! We should find out where to go tomorrow.
 
N

newarmywife

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

My sons arm went blue from our local hospitals sweat test and the lady had to read the box to figure out how to work the machine.....We are now having a sweat test at a childrens hospital and from what the lab told me its nothing like what they did at the local hospital!

I have been told that the test that makes the babys arm go blue isnt very acurate........

I would look into having the test redone some where else



Shawna</end quote></div>

Oh, I am thanks! We should find out where to go tomorrow.
 
O

okok

New member
at my dd's sweat test which was preformed at an accredited CF hospital, they used a battery powered "box" with postive and negative electrodes to stimulate sweat by driving the drug pilocarpine into the skin. This took about 5 minutes. After stimulating the sweat glands, they collected the sweat on a round disc of filter paper which they wrapped tightly in saran wrap to prevent evaporation which took about 30 minutes. It sounds like most methods stimulate sweating in the same way but differ in how they collect the sweat. Anyway the filter paper was preweighed and when finished they weighed the filter paper again to make sure they collected enough sweat. I did not see any machine but i asked how they measured the chloride and the tech said with a chloridometer. Anyway with this method there was no blue anywhere not on the sweat collection filter paper or on dd's arm.
 
O

okok

New member
at my dd's sweat test which was preformed at an accredited CF hospital, they used a battery powered "box" with postive and negative electrodes to stimulate sweat by driving the drug pilocarpine into the skin. This took about 5 minutes. After stimulating the sweat glands, they collected the sweat on a round disc of filter paper which they wrapped tightly in saran wrap to prevent evaporation which took about 30 minutes. It sounds like most methods stimulate sweating in the same way but differ in how they collect the sweat. Anyway the filter paper was preweighed and when finished they weighed the filter paper again to make sure they collected enough sweat. I did not see any machine but i asked how they measured the chloride and the tech said with a chloridometer. Anyway with this method there was no blue anywhere not on the sweat collection filter paper or on dd's arm.
 
O

okok

New member
at my dd's sweat test which was preformed at an accredited CF hospital, they used a battery powered "box" with postive and negative electrodes to stimulate sweat by driving the drug pilocarpine into the skin. This took about 5 minutes. After stimulating the sweat glands, they collected the sweat on a round disc of filter paper which they wrapped tightly in saran wrap to prevent evaporation which took about 30 minutes. It sounds like most methods stimulate sweating in the same way but differ in how they collect the sweat. Anyway the filter paper was preweighed and when finished they weighed the filter paper again to make sure they collected enough sweat. I did not see any machine but i asked how they measured the chloride and the tech said with a chloridometer. Anyway with this method there was no blue anywhere not on the sweat collection filter paper or on dd's arm.
 
A

amber682

New member
My son and his cousin both had their sweat tests done at an accreditted CF hospital, and their test was exactly how okok described it above. And there was no blue. Having a borderline sweat test, your son probably should have genetic testing, just to be sure. I think, from what I've read on here, that there are more than one type of sweat test, and that CFF accreditted hospitals all do it the same way.

I hope everything goes well with the test, and that you get the answers you need. Keep us posted!
 
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