Sweat Test mix up

J

JRPandTJP

New member
Faith, if getting enough blood is problematic the Guthrey panel test covers 1000 mutations and only requires a heel stick. It is just like the PKU they do in the hospital...minor pain and quick. We got results in 2 weeks.

Julie, what a wonderful resource you are!! We just shouldn't have to work so hard at it ...just pisses me off that we are worried to death about our child and can't get coverage during a time of extreme stress and confusion.

Hang in there we're with you and still of course hope it is not CF.
 
J

JRPandTJP

New member
Faith, if getting enough blood is problematic the Guthrey panel test covers 1000 mutations and only requires a heel stick. It is just like the PKU they do in the hospital...minor pain and quick. We got results in 2 weeks.

Julie, what a wonderful resource you are!! We just shouldn't have to work so hard at it ...just pisses me off that we are worried to death about our child and can't get coverage during a time of extreme stress and confusion.

Hang in there we're with you and still of course hope it is not CF.
 
J

JRPandTJP

New member
Faith, if getting enough blood is problematic the Guthrey panel test covers 1000 mutations and only requires a heel stick. It is just like the PKU they do in the hospital...minor pain and quick. We got results in 2 weeks.

Julie, what a wonderful resource you are!! We just shouldn't have to work so hard at it ...just pisses me off that we are worried to death about our child and can't get coverage during a time of extreme stress and confusion.

Hang in there we're with you and still of course hope it is not CF.
 
M

mom4holly

New member
Jody,

Thank you for your response. Julie is a great resource and I am glad she read and posted for me.

I am always hoping for a negative test also wether it is the sweat or genetic test but I am extremely frustrated with my insurance...I feel like they are the doctors and my daughter is the guinea pig. I wonder how many years of college they had to sit through to become professional over the phone medical experts or what degree it took for them to become GOD.

I sometimes feel I would be better off to sit on my @$$ at home, watch tv and use taxpayer dollars to raise my children, sick and healthy....what a surprise that the people who choose to do this qualify for "free" healthcare and I have to bust my bum. I have had to work atleast 50+ hours a week since my daughter started seeing the several different specialist her ped recommended to help me with her cough,lungs,congestion and sinus infections because I have a $45 copay for each visit, even follow ups--when you calculate that plus the cost of the meds that are "non preferred" I would be poor if I did not work my but off. Even when I qualified for "free" insurance/medicaid I was working.

Please dont take the above wrong, I understand that some people can not work for various reasons but argh...why am I punished for working and paying my taxes--I am grateful to have insurance but man, I wish they were not so darn stubborn.
 
M

mom4holly

New member
Jody,

Thank you for your response. Julie is a great resource and I am glad she read and posted for me.

I am always hoping for a negative test also wether it is the sweat or genetic test but I am extremely frustrated with my insurance...I feel like they are the doctors and my daughter is the guinea pig. I wonder how many years of college they had to sit through to become professional over the phone medical experts or what degree it took for them to become GOD.

I sometimes feel I would be better off to sit on my @$$ at home, watch tv and use taxpayer dollars to raise my children, sick and healthy....what a surprise that the people who choose to do this qualify for "free" healthcare and I have to bust my bum. I have had to work atleast 50+ hours a week since my daughter started seeing the several different specialist her ped recommended to help me with her cough,lungs,congestion and sinus infections because I have a $45 copay for each visit, even follow ups--when you calculate that plus the cost of the meds that are "non preferred" I would be poor if I did not work my but off. Even when I qualified for "free" insurance/medicaid I was working.

Please dont take the above wrong, I understand that some people can not work for various reasons but argh...why am I punished for working and paying my taxes--I am grateful to have insurance but man, I wish they were not so darn stubborn.
 
M

mom4holly

New member
Jody,

Thank you for your response. Julie is a great resource and I am glad she read and posted for me.

I am always hoping for a negative test also wether it is the sweat or genetic test but I am extremely frustrated with my insurance...I feel like they are the doctors and my daughter is the guinea pig. I wonder how many years of college they had to sit through to become professional over the phone medical experts or what degree it took for them to become GOD.

I sometimes feel I would be better off to sit on my @$$ at home, watch tv and use taxpayer dollars to raise my children, sick and healthy....what a surprise that the people who choose to do this qualify for "free" healthcare and I have to bust my bum. I have had to work atleast 50+ hours a week since my daughter started seeing the several different specialist her ped recommended to help me with her cough,lungs,congestion and sinus infections because I have a $45 copay for each visit, even follow ups--when you calculate that plus the cost of the meds that are "non preferred" I would be poor if I did not work my but off. Even when I qualified for "free" insurance/medicaid I was working.

Please dont take the above wrong, I understand that some people can not work for various reasons but argh...why am I punished for working and paying my taxes--I am grateful to have insurance but man, I wish they were not so darn stubborn.
 
P

point

New member
From what I have been told is the sweat test is supposed to be the "gold" standard for CF, but there can be false positives and false negatives.

Just wanted to post a few thoughts about the sweat test as a clarification.
There are false positives and negatives with many tests; sweat test, blood screening for HIV and Hepatitis virus, heart attach markers, etc.

The sweat test was/ is the gold standard for the dx of CF. It was the only option for years, but it is open to error when taking the samples. It is an example of older science, but at least there was something available for the past 40 years.

Many states perform or are starting to perform newborn screening which is helpful (heel stick and screens for a panel of diseases). Genetics testing will probably become the gold standard eventually as long as hospitals/dr.s can get insurance "buy-in" for the testing.
 
P

point

New member
From what I have been told is the sweat test is supposed to be the "gold" standard for CF, but there can be false positives and false negatives.

Just wanted to post a few thoughts about the sweat test as a clarification.
There are false positives and negatives with many tests; sweat test, blood screening for HIV and Hepatitis virus, heart attach markers, etc.

The sweat test was/ is the gold standard for the dx of CF. It was the only option for years, but it is open to error when taking the samples. It is an example of older science, but at least there was something available for the past 40 years.

Many states perform or are starting to perform newborn screening which is helpful (heel stick and screens for a panel of diseases). Genetics testing will probably become the gold standard eventually as long as hospitals/dr.s can get insurance "buy-in" for the testing.
 
P

point

New member
From what I have been told is the sweat test is supposed to be the "gold" standard for CF, but there can be false positives and false negatives.

Just wanted to post a few thoughts about the sweat test as a clarification.
There are false positives and negatives with many tests; sweat test, blood screening for HIV and Hepatitis virus, heart attach markers, etc.

The sweat test was/ is the gold standard for the dx of CF. It was the only option for years, but it is open to error when taking the samples. It is an example of older science, but at least there was something available for the past 40 years.

Many states perform or are starting to perform newborn screening which is helpful (heel stick and screens for a panel of diseases). Genetics testing will probably become the gold standard eventually as long as hospitals/dr.s can get insurance "buy-in" for the testing.
 
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