sweat test discrepancy

[william1217]

My son has now had four sweat tests- the first score was 56, second 54, third couldn't get enough sweat and finally barely enough sweat and a 25. The final test was done at another hospital. So here is my question- we gave a sighed of relief when we got the news of 25, which lab is wrong- the two that are in the borderline area or the normal one? He is failure to thrive, multiple resp issues, where do I go from here?

 

[william1217]

My son has now had four sweat tests- the first score was 56, second 54, third couldn't get enough sweat and finally barely enough sweat and a 25. The final test was done at another hospital. So here is my question- we gave a sighed of relief when we got the news of 25, which lab is wrong- the two that are in the borderline area or the normal one? He is failure to thrive, multiple resp issues, where do I go from here?

 

[william1217]

My son has now had four sweat tests- the first score was 56, second 54, third couldn't get enough sweat and finally barely enough sweat and a 25. The final test was done at another hospital. So here is my question- we gave a sighed of relief when we got the news of 25, which lab is wrong- the two that are in the borderline area or the normal one? He is failure to thrive, multiple resp issues, where do I go from here?

 

[Mommafirst]

I guess I'd want to know which of the two hospitals is the accredited CF center. If they both are, then I'd think getting genetic work done would help figure it all out for you. Actually, considering the symptoms being presented, I'd think genetic blood work would be your best next course of action. Sorry to hear you can't get a conclusive answer. Limbo is not a fun place to be.

 

[Mommafirst]

I guess I'd want to know which of the two hospitals is the accredited CF center. If they both are, then I'd think getting genetic work done would help figure it all out for you. Actually, considering the symptoms being presented, I'd think genetic blood work would be your best next course of action. Sorry to hear you can't get a conclusive answer. Limbo is not a fun place to be.

 

[Mommafirst]

I guess I'd want to know which of the two hospitals is the accredited CF center. If they both are, then I'd think getting genetic work done would help figure it all out for you. Actually, considering the symptoms being presented, I'd think genetic blood work would be your best next course of action. Sorry to hear you can't get a conclusive answer. Limbo is not a fun place to be.

 

[cysticfibrosisgirl]

We hate the sweat test. It never worked well for me. I have had 2 different one done and all where (normal) But yet I still suffer from CF. my inturnest has me on every med for CF. And every treatment. We also have CF in our family. So that right there tells us something! So we don't trust the sweat test at all. I belive it is a fack and frod.

Then there are the people who get a sweat test and have no clue they even had CF and the sweat test says they do have CF. And the gene test is not (aways) right. There are more genes being found everyday for CF.

 

[cysticfibrosisgirl]

We hate the sweat test. It never worked well for me. I have had 2 different one done and all where (normal) But yet I still suffer from CF. my inturnest has me on every med for CF. And every treatment. We also have CF in our family. So that right there tells us something! So we don't trust the sweat test at all. I belive it is a fack and frod.

Then there are the people who get a sweat test and have no clue they even had CF and the sweat test says they do have CF. And the gene test is not (aways) right. There are more genes being found everyday for CF.

 

[cysticfibrosisgirl]

We hate the sweat test. It never worked well for me. I have had 2 different one done and all where (normal) But yet I still suffer from CF. my inturnest has me on every med for CF. And every treatment. We also have CF in our family. So that right there tells us something! So we don't trust the sweat test at all. I belive it is a fack and frod.

Then there are the people who get a sweat test and have no clue they even had CF and the sweat test says they do have CF. And the gene test is not (aways) right. There are more genes being found everyday for CF.

 

[Alyssa]

See link to my blog page for the long story -- short story is "push for genetic testing, sweat tests are not always accurate for everyone"

 

[Alyssa]

See link to my blog page for the long story -- short story is "push for genetic testing, sweat tests are not always accurate for everyone"

 

[Alyssa]

See link to my blog page for the long story -- short story is "push for genetic testing, sweat tests are not always accurate for everyone"

 

[bmombtoo]

I agree with the other posts. In my son's case and my own case the sweat test was not as reliable as it is in other people. Genetic testing should help to clear things up , though again in our case the mutation hasn't been identified as of yet so it wasn't very helpful. Joshua had a nasal seat differential test done and that was accurate in the diagnosis as well as a different kind of sweat test that relies on a different sweat channel (a good CF doc should know about this). His symptoms sound very suspicious and CF like. Getting to the bottom of things even if CF is the bottom will bring relief to all the worrying over what he could have.

Best of luck to you and keep us posted.

 

[bmombtoo]

I agree with the other posts. In my son's case and my own case the sweat test was not as reliable as it is in other people. Genetic testing should help to clear things up , though again in our case the mutation hasn't been identified as of yet so it wasn't very helpful. Joshua had a nasal seat differential test done and that was accurate in the diagnosis as well as a different kind of sweat test that relies on a different sweat channel (a good CF doc should know about this). His symptoms sound very suspicious and CF like. Getting to the bottom of things even if CF is the bottom will bring relief to all the worrying over what he could have.

Best of luck to you and keep us posted.

 

[bmombtoo]

I agree with the other posts. In my son's case and my own case the sweat test was not as reliable as it is in other people. Genetic testing should help to clear things up , though again in our case the mutation hasn't been identified as of yet so it wasn't very helpful. Joshua had a nasal seat differential test done and that was accurate in the diagnosis as well as a different kind of sweat test that relies on a different sweat channel (a good CF doc should know about this). His symptoms sound very suspicious and CF like. Getting to the bottom of things even if CF is the bottom will bring relief to all the worrying over what he could have.

Best of luck to you and keep us posted.

 

[robert321]

CF affects different people different ways, me for example, there is so much salt in my sweat (which is what they go off of for the sweat chloride test) that when i run for a while or get really sweatty, i can get little peices of salt off my skin and out of my hair, kind of gross, but it happens. <img src="i/expressions/face-icon-small-smile.gif" border="0"> other people it doesn't have any salt in the sweat, it all depends on how the disease affects you, getting the dna test done is the best thing you can do to get a conclusive answer, I hope you get this all resolved soon so you can know for sure. Best of luck and God bless.

 

[robert321]

CF affects different people different ways, me for example, there is so much salt in my sweat (which is what they go off of for the sweat chloride test) that when i run for a while or get really sweatty, i can get little peices of salt off my skin and out of my hair, kind of gross, but it happens. <img src="i/expressions/face-icon-small-smile.gif" border="0"> other people it doesn't have any salt in the sweat, it all depends on how the disease affects you, getting the dna test done is the best thing you can do to get a conclusive answer, I hope you get this all resolved soon so you can know for sure. Best of luck and God bless.

 

[robert321]

CF affects different people different ways, me for example, there is so much salt in my sweat (which is what they go off of for the sweat chloride test) that when i run for a while or get really sweatty, i can get little peices of salt off my skin and out of my hair, kind of gross, but it happens. <img src="i/expressions/face-icon-small-smile.gif" border="0"> other people it doesn't have any salt in the sweat, it all depends on how the disease affects you, getting the dna test done is the best thing you can do to get a conclusive answer, I hope you get this all resolved soon so you can know for sure. Best of luck and God bless.