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[SandyCheeks]

So last night I recieved a call from our CF nurse. I of course didn't answer the call so I waited nervously until the morning.

I was told that there were no mutations found and something about 7T/7T poly something? When I asked if duplication and deletions were done I was told they were and they found none.

On the advise of all of you I asked to see a copy of the report and was told I could access it and print it myself (Hurray for technology). Once I printed my own copy it stated the same as I was told, however it recommended that the deletions/duplications be added because 1-2% of cases find CF there (my own wording of course).

I was beyond frustrated (still am). I made a slew of phone calls and my daughters primary care physician agreed to order the deletions so we will hopefully finally be able to put a diagnosis of CF behind us.

So I guess we are closer to finding out and it is a good thing they found no mutations in the 1500.

 

[SandyCheeks]

So last night I recieved a call from our CF nurse. I of course didn't answer the call so I waited nervously until the morning.

I was told that there were no mutations found and something about 7T/7T poly something? When I asked if duplication and deletions were done I was told they were and they found none.

On the advise of all of you I asked to see a copy of the report and was told I could access it and print it myself (Hurray for technology). Once I printed my own copy it stated the same as I was told, however it recommended that the deletions/duplications be added because 1-2% of cases find CF there (my own wording of course).

I was beyond frustrated (still am). I made a slew of phone calls and my daughters primary care physician agreed to order the deletions so we will hopefully finally be able to put a diagnosis of CF behind us.

So I guess we are closer to finding out and it is a good thing they found no mutations in the 1500.

 

[SandyCheeks]

So last night I recieved a call from our CF nurse. I of course didn't answer the call so I waited nervously until the morning.

I was told that there were no mutations found and something about 7T/7T poly something? When I asked if duplication and deletions were done I was told they were and they found none.

On the advise of all of you I asked to see a copy of the report and was told I could access it and print it myself (Hurray for technology). Once I printed my own copy it stated the same as I was told, however it recommended that the deletions/duplications be added because 1-2% of cases find CF there (my own wording of course).

I was beyond frustrated (still am). I made a slew of phone calls and my daughters primary care physician agreed to order the deletions so we will hopefully finally be able to put a diagnosis of CF behind us.

So I guess we are closer to finding out and it is a good thing they found no mutations in the 1500.

 

[SandyCheeks]

So last night I recieved a call from our CF nurse. I of course didn't answer the call so I waited nervously until the morning.

I was told that there were no mutations found and something about 7T/7T poly something? When I asked if duplication and deletions were done I was told they were and they found none.

On the advise of all of you I asked to see a copy of the report and was told I could access it and print it myself (Hurray for technology). Once I printed my own copy it stated the same as I was told, however it recommended that the deletions/duplications be added because 1-2% of cases find CF there (my own wording of course).

I was beyond frustrated (still am). I made a slew of phone calls and my daughters primary care physician agreed to order the deletions so we will hopefully finally be able to put a diagnosis of CF behind us.

So I guess we are closer to finding out and it is a good thing they found no mutations in the 1500.

 

[SandyCheeks]

So last night I recieved a call from our CF nurse. I of course didn't answer the call so I waited nervously until the morning.
<br />
<br />I was told that there were no mutations found and something about 7T/7T poly something? When I asked if duplication and deletions were done I was told they were and they found none.
<br />
<br />On the advise of all of you I asked to see a copy of the report and was told I could access it and print it myself (Hurray for technology). Once I printed my own copy it stated the same as I was told, however it recommended that the deletions/duplications be added because 1-2% of cases find CF there (my own wording of course).
<br />
<br />I was beyond frustrated (still am). I made a slew of phone calls and my daughters primary care physician agreed to order the deletions so we will hopefully finally be able to put a diagnosis of CF behind us.
<br />
<br />So I guess we are closer to finding out and it is a good thing they found no mutations in the 1500.

 

[daisymae]

That's great news that they didn't find any mutations!!! Hopefully that gives you a bit of relief while you wait for the duplications/deletions testing. My daughter's sample was just sent to Ambry yesterday so we are just beginning our 3-4 week wait. I don't know anything about this deletions/duplications testing. Is this something I should ask about before they do the testing or is it only done after the fact if they don't find 2 mutations? Just want to make sure I can get all results back at the same time so I don't have to send another blood sample and wait again for deletions/duplications results. Maybe I should ask Steven Keiles this question.

 

[daisymae]

That's great news that they didn't find any mutations!!! Hopefully that gives you a bit of relief while you wait for the duplications/deletions testing. My daughter's sample was just sent to Ambry yesterday so we are just beginning our 3-4 week wait. I don't know anything about this deletions/duplications testing. Is this something I should ask about before they do the testing or is it only done after the fact if they don't find 2 mutations? Just want to make sure I can get all results back at the same time so I don't have to send another blood sample and wait again for deletions/duplications results. Maybe I should ask Steven Keiles this question.

 

[daisymae]

That's great news that they didn't find any mutations!!! Hopefully that gives you a bit of relief while you wait for the duplications/deletions testing. My daughter's sample was just sent to Ambry yesterday so we are just beginning our 3-4 week wait. I don't know anything about this deletions/duplications testing. Is this something I should ask about before they do the testing or is it only done after the fact if they don't find 2 mutations? Just want to make sure I can get all results back at the same time so I don't have to send another blood sample and wait again for deletions/duplications results. Maybe I should ask Steven Keiles this question.

 

[daisymae]

That's great news that they didn't find any mutations!!! Hopefully that gives you a bit of relief while you wait for the duplications/deletions testing. My daughter's sample was just sent to Ambry yesterday so we are just beginning our 3-4 week wait. I don't know anything about this deletions/duplications testing. Is this something I should ask about before they do the testing or is it only done after the fact if they don't find 2 mutations? Just want to make sure I can get all results back at the same time so I don't have to send another blood sample and wait again for deletions/duplications results. Maybe I should ask Steven Keiles this question.

 

[daisymae]

That's great news that they didn't find any mutations!!! Hopefully that gives you a bit of relief while you wait for the duplications/deletions testing. My daughter's sample was just sent to Ambry yesterday so we are just beginning our 3-4 week wait. I don't know anything about this deletions/duplications testing. Is this something I should ask about before they do the testing or is it only done after the fact if they don't find 2 mutations? Just want to make sure I can get all results back at the same time so I don't have to send another blood sample and wait again for deletions/duplications results. Maybe I should ask Steven Keiles this question.

 

[SandyCheeks]

Steve will be able to answer your question more accurately. I am not sure what the norm is, but yes before you definatley say your child does not have CF it would be important to know that they also checked for deletions.

For us it was a little over 4 weeks from when Ambry recieved our sample unitl they finished the main test. I hope your wait goes by quickly. Good Luck!

 

[SandyCheeks]

Steve will be able to answer your question more accurately. I am not sure what the norm is, but yes before you definatley say your child does not have CF it would be important to know that they also checked for deletions.

For us it was a little over 4 weeks from when Ambry recieved our sample unitl they finished the main test. I hope your wait goes by quickly. Good Luck!

 

[SandyCheeks]

Steve will be able to answer your question more accurately. I am not sure what the norm is, but yes before you definatley say your child does not have CF it would be important to know that they also checked for deletions.

For us it was a little over 4 weeks from when Ambry recieved our sample unitl they finished the main test. I hope your wait goes by quickly. Good Luck!

 

[SandyCheeks]

Steve will be able to answer your question more accurately. I am not sure what the norm is, but yes before you definatley say your child does not have CF it would be important to know that they also checked for deletions.

For us it was a little over 4 weeks from when Ambry recieved our sample unitl they finished the main test. I hope your wait goes by quickly. Good Luck!

 

[SandyCheeks]

Steve will be able to answer your question more accurately. I am not sure what the norm is, but yes before you definatley say your child does not have CF it would be important to know that they also checked for deletions.
<br />
<br />For us it was a little over 4 weeks from when Ambry recieved our sample unitl they finished the main test. I hope your wait goes by quickly. Good Luck!