We are finally getting to do the sweat test and full panel

foreverworshiphim · Apr 28, 2010

My daughter has her appt next week with the ENT. Her pulmo doc ordered the sweat test and full panel upon my request finally. However they will not order it to be sent to Ambry so I was not happy with that. I spoke with the lab and they send it to the Mayo lab to be tested. I am hoping that we will get the full results we need. I will update when we know more. Thank you again for all of the advice I have been given on this board!

Amanda

foreverworshiphim · Apr 28, 2010

My daughter has her appt next week with the ENT. Her pulmo doc ordered the sweat test and full panel upon my request finally. However they will not order it to be sent to Ambry so I was not happy with that. I spoke with the lab and they send it to the Mayo lab to be tested. I am hoping that we will get the full results we need. I will update when we know more. Thank you again for all of the advice I have been given on this board!

Amanda

foreverworshiphim · Apr 28, 2010

My daughter has her appt next week with the ENT. Her pulmo doc ordered the sweat test and full panel upon my request finally. However they will not order it to be sent to Ambry so I was not happy with that. I spoke with the lab and they send it to the Mayo lab to be tested. I am hoping that we will get the full results we need. I will update when we know more. Thank you again for all of the advice I have been given on this board!

Amanda

foreverworshiphim · Apr 28, 2010

My daughter has her appt next week with the ENT. Her pulmo doc ordered the sweat test and full panel upon my request finally. However they will not order it to be sent to Ambry so I was not happy with that. I spoke with the lab and they send it to the Mayo lab to be tested. I am hoping that we will get the full results we need. I will update when we know more. Thank you again for all of the advice I have been given on this board!

Amanda

foreverworshiphim · Apr 28, 2010

My daughter has her appt next week with the ENT. Her pulmo doc ordered the sweat test and full panel upon my request finally. However they will not order it to be sent to Ambry so I was not happy with that. I spoke with the lab and they send it to the Mayo lab to be tested. I am hoping that we will get the full results we need. I will update when we know more. Thank you again for all of the advice I have been given on this board!
<br />
<br />Amanda

hmw · Apr 28, 2010

I would ask why they are so resistant to the Ambry test. A panel test looking for 100ish mutations (or even less) vs. Ambry, which can detect 1,500+...?! Not to mention ANY lab can draw the single vial of blood needed for the Ambry and send the kit out. <img src="i/expressions/face-icon-small-confused.gif" border="0"> I would not be happy with that either and would push them further on that if possible. You can even ask the ENT about ordering the Ambry (any dr can order it; doesn't have to be a cf specialist... explain your concerns to him and see.)

I am glad she is getting the sweat test. Will that be at the lab affiliated with the cf clinic?

hmw · Apr 28, 2010

I would ask why they are so resistant to the Ambry test. A panel test looking for 100ish mutations (or even less) vs. Ambry, which can detect 1,500+...?! Not to mention ANY lab can draw the single vial of blood needed for the Ambry and send the kit out. <img src="i/expressions/face-icon-small-confused.gif" border="0"> I would not be happy with that either and would push them further on that if possible. You can even ask the ENT about ordering the Ambry (any dr can order it; doesn't have to be a cf specialist... explain your concerns to him and see.)

I am glad she is getting the sweat test. Will that be at the lab affiliated with the cf clinic?

hmw · Apr 28, 2010

I would ask why they are so resistant to the Ambry test. A panel test looking for 100ish mutations (or even less) vs. Ambry, which can detect 1,500+...?! Not to mention ANY lab can draw the single vial of blood needed for the Ambry and send the kit out. <img src="i/expressions/face-icon-small-confused.gif" border="0"> I would not be happy with that either and would push them further on that if possible. You can even ask the ENT about ordering the Ambry (any dr can order it; doesn't have to be a cf specialist... explain your concerns to him and see.)

I am glad she is getting the sweat test. Will that be at the lab affiliated with the cf clinic?

hmw · Apr 28, 2010

I would ask why they are so resistant to the Ambry test. A panel test looking for 100ish mutations (or even less) vs. Ambry, which can detect 1,500+...?! Not to mention ANY lab can draw the single vial of blood needed for the Ambry and send the kit out. <img src="i/expressions/face-icon-small-confused.gif" border="0"> I would not be happy with that either and would push them further on that if possible. You can even ask the ENT about ordering the Ambry (any dr can order it; doesn't have to be a cf specialist... explain your concerns to him and see.)

I am glad she is getting the sweat test. Will that be at the lab affiliated with the cf clinic?

hmw · Apr 28, 2010

I would ask why they are so resistant to the Ambry test. A panel test looking for 100ish mutations (or even less) vs. Ambry, which can detect 1,500+...?! Not to mention ANY lab can draw the single vial of blood needed for the Ambry and send the kit out. <img src="i/expressions/face-icon-small-confused.gif" border="0"> I would not be happy with that either and would push them further on that if possible. You can even ask the ENT about ordering the Ambry (any dr can order it; doesn't have to be a cf specialist... explain your concerns to him and see.)
<br />
<br />I am glad she is getting the sweat test. Will that be at the lab affiliated with the cf clinic?

foreverworshiphim · Apr 28, 2010

The sweat test is being done at a certified CF clinic. When I spoke with my daughter's nurse today she said that the full panel they order should test all 1500 mutations. I am definitely going to ask the ENT about it though. Her pulmo order it but we are following it with the ENT. ( her pulmo referred her to the ENT ) Is Ambry the only one who will test the 99% of 1500?

foreverworshiphim · Apr 28, 2010

The sweat test is being done at a certified CF clinic. When I spoke with my daughter's nurse today she said that the full panel they order should test all 1500 mutations. I am definitely going to ask the ENT about it though. Her pulmo order it but we are following it with the ENT. ( her pulmo referred her to the ENT ) Is Ambry the only one who will test the 99% of 1500?

foreverworshiphim · Apr 28, 2010

The sweat test is being done at a certified CF clinic. When I spoke with my daughter's nurse today she said that the full panel they order should test all 1500 mutations. I am definitely going to ask the ENT about it though. Her pulmo order it but we are following it with the ENT. ( her pulmo referred her to the ENT ) Is Ambry the only one who will test the 99% of 1500?

foreverworshiphim · Apr 28, 2010

The sweat test is being done at a certified CF clinic. When I spoke with my daughter's nurse today she said that the full panel they order should test all 1500 mutations. I am definitely going to ask the ENT about it though. Her pulmo order it but we are following it with the ENT. ( her pulmo referred her to the ENT ) Is Ambry the only one who will test the 99% of 1500?

foreverworshiphim · Apr 28, 2010

The sweat test is being done at a certified CF clinic. When I spoke with my daughter's nurse today she said that the full panel they order should test all 1500 mutations. I am definitely going to ask the ENT about it though. Her pulmo order it but we are following it with the ENT. ( her pulmo referred her to the ENT ) Is Ambry the only one who will test the 99% of 1500?

Ratatosk · Apr 28, 2010