Need some help?

Koleen · Jan 17, 2008

Thank you getting back to me so fast.
I don't understand why one sweat test is so high and the other borderline at 50. Makes no sense to me. First they make it sound like the sweat test is 100% acurate not letting you no either about false/postitive or that seven other disease can cause a postive reading. The doc. did explain about all the differant mutations of CF and that new mutations are being found. It's almost four weeks now. It was Dec. 18th when she went in for her blood to be drawn. Can I call myself to check on it? Or is that a no no?

I show no family history of CF, but my farther died of Asian Orange, Cancer, and lung disease but they tell me that is not the same.

First the dietian told me she isnt that far off her growth. Given the fact that my husband is skinny average height for a man, but I'm short.

Also the infecation when she was sick what they thought was causiing her cold or infecation wasnt the growth, average viral.. ?? O'' it's been over a month now. I wish I had a straight answer. I read alot of post from Steve?? is it, , sorry if this sounds stupid but he works at the lab??
Thanks again for taking the time to chat with me.

Koleen · Jan 17, 2008

Thank you getting back to me so fast.
I don't understand why one sweat test is so high and the other borderline at 50. Makes no sense to me. First they make it sound like the sweat test is 100% acurate not letting you no either about false/postitive or that seven other disease can cause a postive reading. The doc. did explain about all the differant mutations of CF and that new mutations are being found. It's almost four weeks now. It was Dec. 18th when she went in for her blood to be drawn. Can I call myself to check on it? Or is that a no no?

I show no family history of CF, but my farther died of Asian Orange, Cancer, and lung disease but they tell me that is not the same.

First the dietian told me she isnt that far off her growth. Given the fact that my husband is skinny average height for a man, but I'm short.

Also the infecation when she was sick what they thought was causiing her cold or infecation wasnt the growth, average viral.. ?? O'' it's been over a month now. I wish I had a straight answer. I read alot of post from Steve?? is it, , sorry if this sounds stupid but he works at the lab??
Thanks again for taking the time to chat with me.

Koleen · Jan 17, 2008

Thank you getting back to me so fast.
I don't understand why one sweat test is so high and the other borderline at 50. Makes no sense to me. First they make it sound like the sweat test is 100% acurate not letting you no either about false/postitive or that seven other disease can cause a postive reading. The doc. did explain about all the differant mutations of CF and that new mutations are being found. It's almost four weeks now. It was Dec. 18th when she went in for her blood to be drawn. Can I call myself to check on it? Or is that a no no?

I show no family history of CF, but my farther died of Asian Orange, Cancer, and lung disease but they tell me that is not the same.

First the dietian told me she isnt that far off her growth. Given the fact that my husband is skinny average height for a man, but I'm short.

Also the infecation when she was sick what they thought was causiing her cold or infecation wasnt the growth, average viral.. ?? O'' it's been over a month now. I wish I had a straight answer. I read alot of post from Steve?? is it, , sorry if this sounds stupid but he works at the lab??
Thanks again for taking the time to chat with me.

Koleen · Jan 17, 2008

Thank you getting back to me so fast.
I don't understand why one sweat test is so high and the other borderline at 50. Makes no sense to me. First they make it sound like the sweat test is 100% acurate not letting you no either about false/postitive or that seven other disease can cause a postive reading. The doc. did explain about all the differant mutations of CF and that new mutations are being found. It's almost four weeks now. It was Dec. 18th when she went in for her blood to be drawn. Can I call myself to check on it? Or is that a no no?

I show no family history of CF, but my farther died of Asian Orange, Cancer, and lung disease but they tell me that is not the same.

First the dietian told me she isnt that far off her growth. Given the fact that my husband is skinny average height for a man, but I'm short.

Also the infecation when she was sick what they thought was causiing her cold or infecation wasnt the growth, average viral.. ?? O'' it's been over a month now. I wish I had a straight answer. I read alot of post from Steve?? is it, , sorry if this sounds stupid but he works at the lab??
Thanks again for taking the time to chat with me.

Koleen · Jan 17, 2008

Thank you getting back to me so fast.
I don't understand why one sweat test is so high and the other borderline at 50. Makes no sense to me. First they make it sound like the sweat test is 100% acurate not letting you no either about false/postitive or that seven other disease can cause a postive reading. The doc. did explain about all the differant mutations of CF and that new mutations are being found. It's almost four weeks now. It was Dec. 18th when she went in for her blood to be drawn. Can I call myself to check on it? Or is that a no no?

I show no family history of CF, but my farther died of Asian Orange, Cancer, and lung disease but they tell me that is not the same.

First the dietian told me she isnt that far off her growth. Given the fact that my husband is skinny average height for a man, but I'm short.

Also the infecation when she was sick what they thought was causiing her cold or infecation wasnt the growth, average viral.. ?? O'' it's been over a month now. I wish I had a straight answer. I read alot of post from Steve?? is it, , sorry if this sounds stupid but he works at the lab??
Thanks again for taking the time to chat with me.

Emily65Roses · Jan 17, 2008

Sorry I missed that you had already gotten the genetic test. The problem with the typical ones is.. The first one only tests for like 30 mutations. The second one tests for 80-90ish. The thing is... there are more than 1500 mutations. So testing for the most common 90 is sufficient for some... but it's really not the safest route. Your daughter could easily have mutations that are less common and therefore, not covered by the smaller tests. Make sure you get the full panel done.

My mom was one of 6 kids. I have more than a dozen cousins. And I am still the first and only one with CF. And do you mean Agent Orange? That's not the same thing, your docs are right. That's caused by a poison they used in Vietnam.

Emily65Roses · Jan 17, 2008

Sorry I missed that you had already gotten the genetic test. The problem with the typical ones is.. The first one only tests for like 30 mutations. The second one tests for 80-90ish. The thing is... there are more than 1500 mutations. So testing for the most common 90 is sufficient for some... but it's really not the safest route. Your daughter could easily have mutations that are less common and therefore, not covered by the smaller tests. Make sure you get the full panel done.

My mom was one of 6 kids. I have more than a dozen cousins. And I am still the first and only one with CF. And do you mean Agent Orange? That's not the same thing, your docs are right. That's caused by a poison they used in Vietnam.

Emily65Roses · Jan 17, 2008

Sorry I missed that you had already gotten the genetic test. The problem with the typical ones is.. The first one only tests for like 30 mutations. The second one tests for 80-90ish. The thing is... there are more than 1500 mutations. So testing for the most common 90 is sufficient for some... but it's really not the safest route. Your daughter could easily have mutations that are less common and therefore, not covered by the smaller tests. Make sure you get the full panel done.

My mom was one of 6 kids. I have more than a dozen cousins. And I am still the first and only one with CF. And do you mean Agent Orange? That's not the same thing, your docs are right. That's caused by a poison they used in Vietnam.

Emily65Roses · Jan 17, 2008

Sorry I missed that you had already gotten the genetic test. The problem with the typical ones is.. The first one only tests for like 30 mutations. The second one tests for 80-90ish. The thing is... there are more than 1500 mutations. So testing for the most common 90 is sufficient for some... but it's really not the safest route. Your daughter could easily have mutations that are less common and therefore, not covered by the smaller tests. Make sure you get the full panel done.

My mom was one of 6 kids. I have more than a dozen cousins. And I am still the first and only one with CF. And do you mean Agent Orange? That's not the same thing, your docs are right. That's caused by a poison they used in Vietnam.

Emily65Roses · Jan 17, 2008

Sorry I missed that you had already gotten the genetic test. The problem with the typical ones is.. The first one only tests for like 30 mutations. The second one tests for 80-90ish. The thing is... there are more than 1500 mutations. So testing for the most common 90 is sufficient for some... but it's really not the safest route. Your daughter could easily have mutations that are less common and therefore, not covered by the smaller tests. Make sure you get the full panel done.

My mom was one of 6 kids. I have more than a dozen cousins. And I am still the first and only one with CF. And do you mean Agent Orange? That's not the same thing, your docs are right. That's caused by a poison they used in Vietnam.

Buckeye · Jan 17, 2008

Steve works at Ambry, they are one of the site's sponsors - so if the test was sent to Ambry Steve could tell you how far along it is in the process. His phone number is listed on his signature line of that thread which is "stickied" to the top of the family section or you could leave him a message on that thread and he will respond.

Buckeye · Jan 17, 2008

Steve works at Ambry, they are one of the site's sponsors - so if the test was sent to Ambry Steve could tell you how far along it is in the process. His phone number is listed on his signature line of that thread which is "stickied" to the top of the family section or you could leave him a message on that thread and he will respond.

Buckeye · Jan 17, 2008

Steve works at Ambry, they are one of the site's sponsors - so if the test was sent to Ambry Steve could tell you how far along it is in the process. His phone number is listed on his signature line of that thread which is "stickied" to the top of the family section or you could leave him a message on that thread and he will respond.

Buckeye · Jan 17, 2008

Steve works at Ambry, they are one of the site's sponsors - so if the test was sent to Ambry Steve could tell you how far along it is in the process. His phone number is listed on his signature line of that thread which is "stickied" to the top of the family section or you could leave him a message on that thread and he will respond.

Buckeye · Jan 17, 2008

Steve works at Ambry, they are one of the site's sponsors - so if the test was sent to Ambry Steve could tell you how far along it is in the process. His phone number is listed on his signature line of that thread which is "stickied" to the top of the family section or you could leave him a message on that thread and he will respond.

Uli · Jan 17, 2008