Sweat Test mix up

[mom4holly]

Well, just when I thought that my dr's office was the best thing that had come around since sliced bread....did I learn wrong. They contacted me and advised me that my daughters sweat test was not 133 as they had previously told me---it was 7 on her right arm and 8 on her left arm, as happy as I was to hear this I am completely frustrated and confused now. My daughter carries all of the classic signs and my dr was convinced that we would get a high test which is why he only reported the right arm to me (this is how he figured out they made a mistake) the first time.

We had to go back for a 2nd test and just then he looked at the left arm results form the original and said, it is impossible to have numbers that are this different so he goes back and viola, 7 on one 8 on the other--the baby prior to me got a 133--her papers were in the wrong chart. I understand that this is a very busy childrens clinic but now I dont know what to do.

So, I guess my question is if you had a sweat test of 7 or 8 but still had the symptoms, would you do the genetic test? My insurance is not going to pay for it so I had contacted Ambry and they said they had a discount for cash paying customers and I was and still am prepared but those numbers are really low so I am not sure where to go. My dr says that it is not necessary now. <img src="i/expressions/face-icon-small-frown.gif" border="0">

 

[mom4holly]

Well, just when I thought that my dr's office was the best thing that had come around since sliced bread....did I learn wrong. They contacted me and advised me that my daughters sweat test was not 133 as they had previously told me---it was 7 on her right arm and 8 on her left arm, as happy as I was to hear this I am completely frustrated and confused now. My daughter carries all of the classic signs and my dr was convinced that we would get a high test which is why he only reported the right arm to me (this is how he figured out they made a mistake) the first time.

We had to go back for a 2nd test and just then he looked at the left arm results form the original and said, it is impossible to have numbers that are this different so he goes back and viola, 7 on one 8 on the other--the baby prior to me got a 133--her papers were in the wrong chart. I understand that this is a very busy childrens clinic but now I dont know what to do.

So, I guess my question is if you had a sweat test of 7 or 8 but still had the symptoms, would you do the genetic test? My insurance is not going to pay for it so I had contacted Ambry and they said they had a discount for cash paying customers and I was and still am prepared but those numbers are really low so I am not sure where to go. My dr says that it is not necessary now. <img src="i/expressions/face-icon-small-frown.gif" border="0">

 

[mom4holly]

Well, just when I thought that my dr's office was the best thing that had come around since sliced bread....did I learn wrong. They contacted me and advised me that my daughters sweat test was not 133 as they had previously told me---it was 7 on her right arm and 8 on her left arm, as happy as I was to hear this I am completely frustrated and confused now. My daughter carries all of the classic signs and my dr was convinced that we would get a high test which is why he only reported the right arm to me (this is how he figured out they made a mistake) the first time.

We had to go back for a 2nd test and just then he looked at the left arm results form the original and said, it is impossible to have numbers that are this different so he goes back and viola, 7 on one 8 on the other--the baby prior to me got a 133--her papers were in the wrong chart. I understand that this is a very busy childrens clinic but now I dont know what to do.

So, I guess my question is if you had a sweat test of 7 or 8 but still had the symptoms, would you do the genetic test? My insurance is not going to pay for it so I had contacted Ambry and they said they had a discount for cash paying customers and I was and still am prepared but those numbers are really low so I am not sure where to go. My dr says that it is not necessary now. <img src="i/expressions/face-icon-small-frown.gif" border="0">

 

[Keirasmom]

what about a second sweat test. They had to do 4 on my daughter.
But, to answer your question.. for peace of mind I would do a genetics test.
Rebecca

 

[Keirasmom]

what about a second sweat test. They had to do 4 on my daughter.
But, to answer your question.. for peace of mind I would do a genetics test.
Rebecca

 

[Keirasmom]

what about a second sweat test. They had to do 4 on my daughter.
But, to answer your question.. for peace of mind I would do a genetics test.
Rebecca

 

[mom4holly]

They did the second test and it was a 13, how low was your daughters? I thought anything below 30 absolutely ruled out the possibility of CF?

 

[mom4holly]

They did the second test and it was a 13, how low was your daughters? I thought anything below 30 absolutely ruled out the possibility of CF?

 

[mom4holly]

They did the second test and it was a 13, how low was your daughters? I thought anything below 30 absolutely ruled out the possibility of CF?

 

[Keirasmom]

I don't know. We had our genetics test back before they could get a good sweat test. The genetics test came back fairly quickly for the 1st gene because it is the most common one. The second one took longer because the gene was not as well known. 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.
It might just be asthma if it is just respitory...
I found out my daughter had CF about 3 days after she was born. She was born with a Meconium Illieus and had surgery and our surgeon told us. She said she had never seen an MI not be CF.
Anyway, you obviously don't feel comfortable with the reverse in the diagnosis. I would go with your gut instincts. If they say push for the genetics test... get it. No screening is 100%, the genetics test is.
Hope that helps.

 

[Keirasmom]

I don't know. We had our genetics test back before they could get a good sweat test. The genetics test came back fairly quickly for the 1st gene because it is the most common one. The second one took longer because the gene was not as well known. 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.
It might just be asthma if it is just respitory...
I found out my daughter had CF about 3 days after she was born. She was born with a Meconium Illieus and had surgery and our surgeon told us. She said she had never seen an MI not be CF.
Anyway, you obviously don't feel comfortable with the reverse in the diagnosis. I would go with your gut instincts. If they say push for the genetics test... get it. No screening is 100%, the genetics test is.
Hope that helps.

 

[Keirasmom]

I don't know. We had our genetics test back before they could get a good sweat test. The genetics test came back fairly quickly for the 1st gene because it is the most common one. The second one took longer because the gene was not as well known. 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.
It might just be asthma if it is just respitory...
I found out my daughter had CF about 3 days after she was born. She was born with a Meconium Illieus and had surgery and our surgeon told us. She said she had never seen an MI not be CF.
Anyway, you obviously don't feel comfortable with the reverse in the diagnosis. I would go with your gut instincts. If they say push for the genetics test... get it. No screening is 100%, the genetics test is.
Hope that helps.

 

[JazzysMom]

Unfortunately altho the sweat test use to be the standard for CF testing mainly because the gene hadnt been identified yet....IMHO it also accounts for lots of misdiagnosed people. If there are many classic signs then push for at least another sweat test & then genetic. Better safe then sorry!

 

[JazzysMom]

Unfortunately altho the sweat test use to be the standard for CF testing mainly because the gene hadnt been identified yet....IMHO it also accounts for lots of misdiagnosed people. If there are many classic signs then push for at least another sweat test & then genetic. Better safe then sorry!

 

[JazzysMom]

Unfortunately altho the sweat test use to be the standard for CF testing mainly because the gene hadnt been identified yet....IMHO it also accounts for lots of misdiagnosed people. If there are many classic signs then push for at least another sweat test & then genetic. Better safe then sorry!

 

[mom4holly]

She has had some small digestive issues- I am still going to push for the genetic test but I am going to wait until after January when I can afford it because you have to pay 1/2 up front. She has been being treated for asthma since she was a baby and it has never helped so I guess that is why I am so confused, I didnt even know what CF was until I my dr mentioned it. All I can do now is hope and pray and see what happens.

 

[mom4holly]

She has had some small digestive issues- I am still going to push for the genetic test but I am going to wait until after January when I can afford it because you have to pay 1/2 up front. She has been being treated for asthma since she was a baby and it has never helped so I guess that is why I am so confused, I didnt even know what CF was until I my dr mentioned it. All I can do now is hope and pray and see what happens.

 

[mom4holly]

She has had some small digestive issues- I am still going to push for the genetic test but I am going to wait until after January when I can afford it because you have to pay 1/2 up front. She has been being treated for asthma since she was a baby and it has never helped so I guess that is why I am so confused, I didnt even know what CF was until I my dr mentioned it. All I can do now is hope and pray and see what happens.

 

[thelizardqueen]

There is a such thing as a false negative, but not a false positive. If I were you, for peace of mind I would get the dna test done as well. Its more accurate.

 

[thelizardqueen]

There is a such thing as a false negative, but not a false positive. If I were you, for peace of mind I would get the dna test done as well. Its more accurate.