im shocked

mrsp86

New member
as you prob already know haydn had a appointment today well i just found out the full gene screening has been done without me knowing about it and came back he does not have cystic fibrosis but the lady from the butterfly trust said something about the gene screening only testing for the known causes and to ask for him to be tested for the less known causes . any suggestions
 

mrsp86

New member
as you prob already know haydn had a appointment today well i just found out the full gene screening has been done without me knowing about it and came back he does not have cystic fibrosis but the lady from the butterfly trust said something about the gene screening only testing for the known causes and to ask for him to be tested for the less known causes . any suggestions
 

mrsp86

New member
as you prob already know haydn had a appointment today well i just found out the full gene screening has been done without me knowing about it and came back he does not have cystic fibrosis but the lady from the butterfly trust said something about the gene screening only testing for the known causes and to ask for him to be tested for the less known causes . any suggestions
 

mrsp86

New member
as you prob already know haydn had a appointment today well i just found out the full gene screening has been done without me knowing about it and came back he does not have cystic fibrosis but the lady from the butterfly trust said something about the gene screening only testing for the known causes and to ask for him to be tested for the less known causes . any suggestions
 

mrsp86

New member
as you prob already know haydn had a appointment today well i just found out the full gene screening has been done without me knowing about it and came back he does not have cystic fibrosis but the lady from the butterfly trust said something about the gene screening only testing for the known causes and to ask for him to be tested for the less known causes . any suggestions
 

JORDYSMOM

New member
It sounds like they just tested for the 30 or so most common mutations. That means that the FULL gene screening has not been done. They very often test in stages, because insurance companies don't want to pay for the full panel unless they have tried the shorter panels first. Keep pushing like the lady said, and make them run the full panel. They have only checked for about 30 out of 1600 known mutations. They need to keep going in order to fule out CF.

You are on the right track. You just have to keep insisting they go farther.

Stacey
 

JORDYSMOM

New member
It sounds like they just tested for the 30 or so most common mutations. That means that the FULL gene screening has not been done. They very often test in stages, because insurance companies don't want to pay for the full panel unless they have tried the shorter panels first. Keep pushing like the lady said, and make them run the full panel. They have only checked for about 30 out of 1600 known mutations. They need to keep going in order to fule out CF.

You are on the right track. You just have to keep insisting they go farther.

Stacey
 

JORDYSMOM

New member
It sounds like they just tested for the 30 or so most common mutations. That means that the FULL gene screening has not been done. They very often test in stages, because insurance companies don't want to pay for the full panel unless they have tried the shorter panels first. Keep pushing like the lady said, and make them run the full panel. They have only checked for about 30 out of 1600 known mutations. They need to keep going in order to fule out CF.

You are on the right track. You just have to keep insisting they go farther.

Stacey
 

JORDYSMOM

New member
It sounds like they just tested for the 30 or so most common mutations. That means that the FULL gene screening has not been done. They very often test in stages, because insurance companies don't want to pay for the full panel unless they have tried the shorter panels first. Keep pushing like the lady said, and make them run the full panel. They have only checked for about 30 out of 1600 known mutations. They need to keep going in order to fule out CF.

You are on the right track. You just have to keep insisting they go farther.

Stacey
 

JORDYSMOM

New member
It sounds like they just tested for the 30 or so most common mutations. That means that the FULL gene screening has not been done. They very often test in stages, because insurance companies don't want to pay for the full panel unless they have tried the shorter panels first. Keep pushing like the lady said, and make them run the full panel. They have only checked for about 30 out of 1600 known mutations. They need to keep going in order to fule out CF.
<br />
<br />You are on the right track. You just have to keep insisting they go farther.
<br />
<br />Stacey
 

mrsp86

New member
oh i really lost it with the doctor he has reffered me onto the cf consultant here dr cunningham and i will be telling him i want every test for cf done that can be
 

mrsp86

New member
oh i really lost it with the doctor he has reffered me onto the cf consultant here dr cunningham and i will be telling him i want every test for cf done that can be
 

mrsp86

New member
oh i really lost it with the doctor he has reffered me onto the cf consultant here dr cunningham and i will be telling him i want every test for cf done that can be
 

mrsp86

New member
oh i really lost it with the doctor he has reffered me onto the cf consultant here dr cunningham and i will be telling him i want every test for cf done that can be
 

mrsp86

New member
oh i really lost it with the doctor he has reffered me onto the cf consultant here dr cunningham and i will be telling him i want every test for cf done that can be
 

Juliet

New member
Also make sure you ask for a copy of the test results! The ones I got from Ambry had a good explanation of the test and the results. They even had a phone number were you could call to speak with a genetic counselor to help with interpretation of the results. ~Juliet
 

Juliet

New member
Also make sure you ask for a copy of the test results! The ones I got from Ambry had a good explanation of the test and the results. They even had a phone number were you could call to speak with a genetic counselor to help with interpretation of the results. ~Juliet
 

Juliet

New member
Also make sure you ask for a copy of the test results! The ones I got from Ambry had a good explanation of the test and the results. They even had a phone number were you could call to speak with a genetic counselor to help with interpretation of the results. ~Juliet
 

Juliet

New member
Also make sure you ask for a copy of the test results! The ones I got from Ambry had a good explanation of the test and the results. They even had a phone number were you could call to speak with a genetic counselor to help with interpretation of the results. ~Juliet
 

Juliet

New member
Also make sure you ask for a copy of the test results! The ones I got from Ambry had a good explanation of the test and the results. They even had a phone number were you could call to speak with a genetic counselor to help with interpretation of the results. ~Juliet
 
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