Could it be CF?

[JORDYSMOM]

I think testing for 32 or even 100 out of over 1500 mutations is a waste of time and money. I understand you not wanting to traumatize your child, but not getting an adequate test, and risking not getting proper treatment if she does have CF, is worse. She will get over a blood draw, but you can't get back what untreated CF can damange. I know this is hard, and I'm sorry.

Stacey

 

[JORDYSMOM]

I think testing for 32 or even 100 out of over 1500 mutations is a waste of time and money. I understand you not wanting to traumatize your child, but not getting an adequate test, and risking not getting proper treatment if she does have CF, is worse. She will get over a blood draw, but you can't get back what untreated CF can damange. I know this is hard, and I'm sorry.

Stacey

 

[JORDYSMOM]

I think testing for 32 or even 100 out of over 1500 mutations is a waste of time and money. I understand you not wanting to traumatize your child, but not getting an adequate test, and risking not getting proper treatment if she does have CF, is worse. She will get over a blood draw, but you can't get back what untreated CF can damange. I know this is hard, and I'm sorry.

Stacey

 

[JORDYSMOM]

I think testing for 32 or even 100 out of over 1500 mutations is a waste of time and money. I understand you not wanting to traumatize your child, but not getting an adequate test, and risking not getting proper treatment if she does have CF, is worse. She will get over a blood draw, but you can't get back what untreated CF can damange. I know this is hard, and I'm sorry.

Stacey

 

[JORDYSMOM]

I think testing for 32 or even 100 out of over 1500 mutations is a waste of time and money. I understand you not wanting to traumatize your child, but not getting an adequate test, and risking not getting proper treatment if she does have CF, is worse. She will get over a blood draw, but you can't get back what untreated CF can damange. I know this is hard, and I'm sorry.
<br />
<br />Stacey

 

[LadyPenelope72]

Hi all...Just another quick update. I just got off the phone with Vivian's doctor and her sweat test number was 9. I guess I will get the genetic test done for me and if I m not a carrier for one of the main genes I will seek answers elsewhere.

Thanks again,
LadyP

 

[LadyPenelope72]

Hi all...Just another quick update. I just got off the phone with Vivian's doctor and her sweat test number was 9. I guess I will get the genetic test done for me and if I m not a carrier for one of the main genes I will seek answers elsewhere.

Thanks again,
LadyP

 

[LadyPenelope72]

Hi all...Just another quick update. I just got off the phone with Vivian's doctor and her sweat test number was 9. I guess I will get the genetic test done for me and if I m not a carrier for one of the main genes I will seek answers elsewhere.

Thanks again,
LadyP

 

[LadyPenelope72]

Hi all...Just another quick update. I just got off the phone with Vivian's doctor and her sweat test number was 9. I guess I will get the genetic test done for me and if I m not a carrier for one of the main genes I will seek answers elsewhere.

Thanks again,
LadyP

 

[LadyPenelope72]

Hi all...Just another quick update. I just got off the phone with Vivian's doctor and her sweat test number was 9. I guess I will get the genetic test done for me and if I m not a carrier for one of the main genes I will seek answers elsewhere.
<br />
<br />Thanks again,
<br />LadyP

 

[Alyssa]

I agree word for word with Stacey....anything less that a full genetic test is a waste and it is only one needle poke...getting back lung damage is harder to get over.

You may want to check with Steve on the Family section - post on the Ask Ambry post.... he has made reference before that there is no such thing as a "common CF gene test" it is completely random.... If I'm not mistaken... there is no such thing as looking for only 32 genes that cause 90% of the CF cases.... there is some data about "most common" but it goes something like the Delta F508 is the most common gene, found in 50% of people with CF, then there is something like 1 or 2 others that happen about 5% of the time... the rest of the supposedly 30,000 people out there have a combination the other nearly 1600 genes!!!! Testing for anything less is a waste of time.

 

[Alyssa]

I agree word for word with Stacey....anything less that a full genetic test is a waste and it is only one needle poke...getting back lung damage is harder to get over.

You may want to check with Steve on the Family section - post on the Ask Ambry post.... he has made reference before that there is no such thing as a "common CF gene test" it is completely random.... If I'm not mistaken... there is no such thing as looking for only 32 genes that cause 90% of the CF cases.... there is some data about "most common" but it goes something like the Delta F508 is the most common gene, found in 50% of people with CF, then there is something like 1 or 2 others that happen about 5% of the time... the rest of the supposedly 30,000 people out there have a combination the other nearly 1600 genes!!!! Testing for anything less is a waste of time.

 

[Alyssa]

I agree word for word with Stacey....anything less that a full genetic test is a waste and it is only one needle poke...getting back lung damage is harder to get over.

You may want to check with Steve on the Family section - post on the Ask Ambry post.... he has made reference before that there is no such thing as a "common CF gene test" it is completely random.... If I'm not mistaken... there is no such thing as looking for only 32 genes that cause 90% of the CF cases.... there is some data about "most common" but it goes something like the Delta F508 is the most common gene, found in 50% of people with CF, then there is something like 1 or 2 others that happen about 5% of the time... the rest of the supposedly 30,000 people out there have a combination the other nearly 1600 genes!!!! Testing for anything less is a waste of time.

 

[Alyssa]

I agree word for word with Stacey....anything less that a full genetic test is a waste and it is only one needle poke...getting back lung damage is harder to get over.

You may want to check with Steve on the Family section - post on the Ask Ambry post.... he has made reference before that there is no such thing as a "common CF gene test" it is completely random.... If I'm not mistaken... there is no such thing as looking for only 32 genes that cause 90% of the CF cases.... there is some data about "most common" but it goes something like the Delta F508 is the most common gene, found in 50% of people with CF, then there is something like 1 or 2 others that happen about 5% of the time... the rest of the supposedly 30,000 people out there have a combination the other nearly 1600 genes!!!! Testing for anything less is a waste of time.

 

[Alyssa]

I agree word for word with Stacey....anything less that a full genetic test is a waste and it is only one needle poke...getting back lung damage is harder to get over.
<br />
<br />You may want to check with Steve on the Family section - post on the Ask Ambry post.... he has made reference before that there is no such thing as a "common CF gene test" it is completely random.... If I'm not mistaken... there is no such thing as looking for only 32 genes that cause 90% of the CF cases.... there is some data about "most common" but it goes something like the Delta F508 is the most common gene, found in 50% of people with CF, then there is something like 1 or 2 others that happen about 5% of the time... the rest of the supposedly 30,000 people out there have a combination the other nearly 1600 genes!!!! Testing for anything less is a waste of time.