Thanks everyone for your support. I wrote down all the med codes and will have them in hand when I meet with the Ped on Thursday. I really want them to run the full panel using Ambry. It seems that I have more information than the people I've been dealing with on the phone (thanks to all of you).
The Ped office called back after inquires about doing genetic testing and she agreed that we should go ahead and do that and not wait for a sweat test (wish she would have told me this 2 weeks ago), anyway that is progress. I didn't get to actually talk with the Ped, a nurse called me back and everything I asked her she'd say "Hang on", and I could hear her relying the questions to the doctor. She finally said "The doctor put an order in for the test at children's". I asked if it was for the full genetic panel and she said "Ya, for a genetic test". So I didn't get very far with that. I then called children's and asked who does their genetic testing, they said some of it they keep in house and some they route out and that it all depended on the tests the doctor wants ran......
So Thursday I'm going to the doctor for a weight check and I'm going to talk with her about the medical codes and tell her everything that I want tested. I don't just want to show up at children's when she already has a request in there for whatever test....Ugh. My DH thinks I'm insane and that there's no way our son has this but I know something is off, so if it's not CF it's something else...I can't wait until this month is over.
<b>Okok</b>-we have no results from a sweat test because both times not enough sweat was collected. Good news is we will soon have the genetic testing done.
So as of now, I'm not taking DS in for another sweat test, we are going right for the genetic testing.
Am I missing something?
Thanks
The Ped office called back after inquires about doing genetic testing and she agreed that we should go ahead and do that and not wait for a sweat test (wish she would have told me this 2 weeks ago), anyway that is progress. I didn't get to actually talk with the Ped, a nurse called me back and everything I asked her she'd say "Hang on", and I could hear her relying the questions to the doctor. She finally said "The doctor put an order in for the test at children's". I asked if it was for the full genetic panel and she said "Ya, for a genetic test". So I didn't get very far with that. I then called children's and asked who does their genetic testing, they said some of it they keep in house and some they route out and that it all depended on the tests the doctor wants ran......
So Thursday I'm going to the doctor for a weight check and I'm going to talk with her about the medical codes and tell her everything that I want tested. I don't just want to show up at children's when she already has a request in there for whatever test....Ugh. My DH thinks I'm insane and that there's no way our son has this but I know something is off, so if it's not CF it's something else...I can't wait until this month is over.
<b>Okok</b>-we have no results from a sweat test because both times not enough sweat was collected. Good news is we will soon have the genetic testing done.
So as of now, I'm not taking DS in for another sweat test, we are going right for the genetic testing.
Am I missing something?
Thanks