What does this mean???

[bmombtoo]

I can add that my son had a 78 on the sweat chloride at a non-CF
hospital. The CF hospital re-did the test and got a 14. Because of
his symptoms we did more testing. The sweat conductivity was done
and he was positive for CF; I believe it uses a scale of 4 as
normal. Josh was at a 1.2 and a 0.4. They also did a nasal
potential differential which was positive, though that is a little
tough to do on a 5 year old.<br>
<br>
The test he had done at the first hospital (which is a subsidiary
of Hopkins (and his CF clinic) used the disc procedure. When
Hopkins did the sweat chloride they did it differently and had Josh
walk around to produce enough sweat. The sweat conductivity and
nasal differential were both done at Hopkins.<br>
<br>
I would definitely seek out a specialist. I've had too many
well-meaning physicians tell me over the last three months since we
have been undergoing testing that there is not way he has CF.
Problem is, though they are all good doctors in their field, they
are not CF specialist.

 

[bmombtoo]

I can add that my son had a 78 on the sweat chloride at a non-CF
hospital. The CF hospital re-did the test and got a 14. Because of
his symptoms we did more testing. The sweat conductivity was done
and he was positive for CF; I believe it uses a scale of 4 as
normal. Josh was at a 1.2 and a 0.4. They also did a nasal
potential differential which was positive, though that is a little
tough to do on a 5 year old.<br>
<br>
The test he had done at the first hospital (which is a subsidiary
of Hopkins (and his CF clinic) used the disc procedure. When
Hopkins did the sweat chloride they did it differently and had Josh
walk around to produce enough sweat. The sweat conductivity and
nasal differential were both done at Hopkins.<br>
<br>
I would definitely seek out a specialist. I've had too many
well-meaning physicians tell me over the last three months since we
have been undergoing testing that there is not way he has CF.
Problem is, though they are all good doctors in their field, they
are not CF specialist.

 

[bmombtoo]

I can add that my son had a 78 on the sweat chloride at a non-CF
hospital. The CF hospital re-did the test and got a 14. Because of
his symptoms we did more testing. The sweat conductivity was done
and he was positive for CF; I believe it uses a scale of 4 as
normal. Josh was at a 1.2 and a 0.4. They also did a nasal
potential differential which was positive, though that is a little
tough to do on a 5 year old.<br>
<br>
The test he had done at the first hospital (which is a subsidiary
of Hopkins (and his CF clinic) used the disc procedure. When
Hopkins did the sweat chloride they did it differently and had Josh
walk around to produce enough sweat. The sweat conductivity and
nasal differential were both done at Hopkins.<br>
<br>
I would definitely seek out a specialist. I've had too many
well-meaning physicians tell me over the last three months since we
have been undergoing testing that there is not way he has CF.
Problem is, though they are all good doctors in their field, they
are not CF specialist.

 

[Alyssa]

I have never heard of any other scoring used for sweat testing. If there is no other type of scoring, then yes, she is borderline which means more testing needs to be done to clarify if she has CF or not. What else is going on with her? Why did the doctor sweat test her?

Please read my blog (link is below with my signature) It contains information about sweat test numbers and our experience with "normal" and "borderline" results. There are many people on this site who have CF but have normal sweat test numbers.

Based on what you have said I would seriously consider getting another opinion, another sweat test, full genetic testing and be sure all of that comes from a doctor/clinic that is experience with working with CF.

 

[Alyssa]

I have never heard of any other scoring used for sweat testing. If there is no other type of scoring, then yes, she is borderline which means more testing needs to be done to clarify if she has CF or not. What else is going on with her? Why did the doctor sweat test her?

Please read my blog (link is below with my signature) It contains information about sweat test numbers and our experience with "normal" and "borderline" results. There are many people on this site who have CF but have normal sweat test numbers.

Based on what you have said I would seriously consider getting another opinion, another sweat test, full genetic testing and be sure all of that comes from a doctor/clinic that is experience with working with CF.

 

[Alyssa]

I have never heard of any other scoring used for sweat testing. If there is no other type of scoring, then yes, she is borderline which means more testing needs to be done to clarify if she has CF or not. What else is going on with her? Why did the doctor sweat test her?

Please read my blog (link is below with my signature) It contains information about sweat test numbers and our experience with "normal" and "borderline" results. There are many people on this site who have CF but have normal sweat test numbers.

Based on what you have said I would seriously consider getting another opinion, another sweat test, full genetic testing and be sure all of that comes from a doctor/clinic that is experience with working with CF.

 

[Jackie]

The symptoms she is having that made the doctor want to test her is
a cough that she has had basically since birth, wheezing, fatigue
and not feeling well after exercise. She was always said to have
asthma and has been on asthma medications all with not much luck at
all. She has been hospitalized for pneumonia along with Kawasaki
and stomach infections. It makes me angry that it took until now to
finally see a pediatrician and then have him say to test for cf (I
had to come home and see what cf even was)<br>
The earliest he said he will test her again is in 2 weeks. Then
from there "if" it tests the same we go to Vancouver. So
what if the test shows normal. What test do you know to go by? I
will still be telling the doctor I want to go to Vancouver. I
wonder what the test will be there...<br>
<br>
Either way I will be going to Vancouver and requesting all the
tests.<br>
<br>
What do any of you think of her symptoms??  Anyone else have
these symptoms?<br>
<br>

 

[Jackie]

The symptoms she is having that made the doctor want to test her is
a cough that she has had basically since birth, wheezing, fatigue
and not feeling well after exercise. She was always said to have
asthma and has been on asthma medications all with not much luck at
all. She has been hospitalized for pneumonia along with Kawasaki
and stomach infections. It makes me angry that it took until now to
finally see a pediatrician and then have him say to test for cf (I
had to come home and see what cf even was)<br>
The earliest he said he will test her again is in 2 weeks. Then
from there "if" it tests the same we go to Vancouver. So
what if the test shows normal. What test do you know to go by? I
will still be telling the doctor I want to go to Vancouver. I
wonder what the test will be there...<br>
<br>
Either way I will be going to Vancouver and requesting all the
tests.<br>
<br>
What do any of you think of her symptoms??  Anyone else have
these symptoms?<br>
<br>

 

[Jackie]

The symptoms she is having that made the doctor want to test her is
a cough that she has had basically since birth, wheezing, fatigue
and not feeling well after exercise. She was always said to have
asthma and has been on asthma medications all with not much luck at
all. She has been hospitalized for pneumonia along with Kawasaki
and stomach infections. It makes me angry that it took until now to
finally see a pediatrician and then have him say to test for cf (I
had to come home and see what cf even was)<br>
The earliest he said he will test her again is in 2 weeks. Then
from there "if" it tests the same we go to Vancouver. So
what if the test shows normal. What test do you know to go by? I
will still be telling the doctor I want to go to Vancouver. I
wonder what the test will be there...<br>
<br>
Either way I will be going to Vancouver and requesting all the
tests.<br>
<br>
What do any of you think of her symptoms??  Anyone else have
these symptoms?<br>
<br>

 

[Jackie]

I just read your blog  Alyssa and it sounds like you daughter
in the beginning was going through exactly what my daughter is
going through. Although my daughter is not coughing up stuff. But
still the cough that never goes away and gets much worse when she
gets a cold.

 

[Jackie]

I just read your blog  Alyssa and it sounds like you daughter
in the beginning was going through exactly what my daughter is
going through. Although my daughter is not coughing up stuff. But
still the cough that never goes away and gets much worse when she
gets a cold.

 

[Jackie]

I just read your blog  Alyssa and it sounds like you daughter
in the beginning was going through exactly what my daughter is
going through. Although my daughter is not coughing up stuff. But
still the cough that never goes away and gets much worse when she
gets a cold.

 

[Alyssa]

Yes, I very much believe her symptoms fall within what is typically seen in CF patients and you are well within your rights to insist they pursue all types of testing to try and figure out if she has CF or not. Your options are:

<b>Sweat test:</b>
Cheap and easy - most doctors like to start here, but if your results are borderline, many doctors will say "nope, not CF" and quit looking.

<b>
Genetic testing:</b>
screening -- again cheap, but not very thorough -- a screening looks for only a few of the possible genes responsible for causing CF.

<u><b>FULL GENETIC TESTING WITH AMBRY OR QUEST</b></u> -- this is what you want to ask for. It will test for over 1,400 gene mutations that have been identified so far.

<b>Nasal Potential Difference Test</b>
Not available everywhere, not very pleasant and is usually only done after the other two tests are inconclusive and the patient is still having classic CF symptoms

Best of luck - I wish you the best in Vancouver -- please come back and let us know what they said.

Keep pushing for answers --

 

[Alyssa]

Yes, I very much believe her symptoms fall within what is typically seen in CF patients and you are well within your rights to insist they pursue all types of testing to try and figure out if she has CF or not. Your options are:

<b>Sweat test:</b>
Cheap and easy - most doctors like to start here, but if your results are borderline, many doctors will say "nope, not CF" and quit looking.

<b>
Genetic testing:</b>
screening -- again cheap, but not very thorough -- a screening looks for only a few of the possible genes responsible for causing CF.

<u><b>FULL GENETIC TESTING WITH AMBRY OR QUEST</b></u> -- this is what you want to ask for. It will test for over 1,400 gene mutations that have been identified so far.

<b>Nasal Potential Difference Test</b>
Not available everywhere, not very pleasant and is usually only done after the other two tests are inconclusive and the patient is still having classic CF symptoms

Best of luck - I wish you the best in Vancouver -- please come back and let us know what they said.

Keep pushing for answers --

 

[Alyssa]

Yes, I very much believe her symptoms fall within what is typically seen in CF patients and you are well within your rights to insist they pursue all types of testing to try and figure out if she has CF or not. Your options are:

<b>Sweat test:</b>
Cheap and easy - most doctors like to start here, but if your results are borderline, many doctors will say "nope, not CF" and quit looking.

<b>
Genetic testing:</b>
screening -- again cheap, but not very thorough -- a screening looks for only a few of the possible genes responsible for causing CF.

<u><b>FULL GENETIC TESTING WITH AMBRY OR QUEST</b></u> -- this is what you want to ask for. It will test for over 1,400 gene mutations that have been identified so far.

<b>Nasal Potential Difference Test</b>
Not available everywhere, not very pleasant and is usually only done after the other two tests are inconclusive and the patient is still having classic CF symptoms

Best of luck - I wish you the best in Vancouver -- please come back and let us know what they said.

Keep pushing for answers --