At my Breaking Point

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>momja</b></i>

<b>sakasuka</b>-I just called the Ped office and told them to call Children's and change it to a full panel if possible with the amount of blood they took. Thanks. I'm really trying to stay focused here.



The lab guy told me that the 70 mutations tested for will pick up 91% of the genes. Why not just test for all of them right off?</end quote>



High 5 my friend. You're doing the right thing....

I think it's pointless to not test for 100% of known genes.

Congrats. Hopefully the Ambry Full Panel will come back soon <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>momja</b></i>

<b>sakasuka</b>-I just called the Ped office and told them to call Children's and change it to a full panel if possible with the amount of blood they took. Thanks. I'm really trying to stay focused here.



The lab guy told me that the 70 mutations tested for will pick up 91% of the genes. Why not just test for all of them right off?</end quote>



High 5 my friend. You're doing the right thing....

I think it's pointless to not test for 100% of known genes.

Congrats. Hopefully the Ambry Full Panel will come back soon <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

kayleesgrandma

New member
Aww, I'ms sorry you have to go through this--and with no support! Trust your instincts--wouldn't it be better to get tested and find out it ISN'T what you think, then to worry endlessly? Youare doing the right thing, hope things get better on the homefront.
 

kayleesgrandma

New member
Aww, I'ms sorry you have to go through this--and with no support! Trust your instincts--wouldn't it be better to get tested and find out it ISN'T what you think, then to worry endlessly? Youare doing the right thing, hope things get better on the homefront.
 

kayleesgrandma

New member
Aww, I'ms sorry you have to go through this--and with no support! Trust your instincts--wouldn't it be better to get tested and find out it ISN'T what you think, then to worry endlessly? Youare doing the right thing, hope things get better on the homefront.
 

kayleesgrandma

New member
Aww, I'ms sorry you have to go through this--and with no support! Trust your instincts--wouldn't it be better to get tested and find out it ISN'T what you think, then to worry endlessly? Youare doing the right thing, hope things get better on the homefront.
 

kayleesgrandma

New member
Aww, I'ms sorry you have to go through this--and with no support! Trust your instincts--wouldn't it be better to get tested and find out it ISN'T what you think, then to worry endlessly? Youare doing the right thing, hope things get better on the homefront.
 

kayleesgrandma

New member
Aww, I'ms sorry you have to go through this--and with no support! Trust your instincts--wouldn't it be better to get tested and find out it ISN'T what you think, then to worry endlessly? Youare doing the right thing, hope things get better on the homefront.
 

momja

New member
Well little update; the nurse called back from the office. Full panel? What's that? I explained to her what it was I wanted tested. If they are testing why not do it right. I gave her the info the lab tech gave me and gave her his #. (When do I get my paycheck?)
She said that she didn't know if insurance would pay for it and that it would probably be expensive. WTH? I don't care.......
 

momja

New member
Well little update; the nurse called back from the office. Full panel? What's that? I explained to her what it was I wanted tested. If they are testing why not do it right. I gave her the info the lab tech gave me and gave her his #. (When do I get my paycheck?)
She said that she didn't know if insurance would pay for it and that it would probably be expensive. WTH? I don't care.......
 

momja

New member
Well little update; the nurse called back from the office. Full panel? What's that? I explained to her what it was I wanted tested. If they are testing why not do it right. I gave her the info the lab tech gave me and gave her his #. (When do I get my paycheck?)
She said that she didn't know if insurance would pay for it and that it would probably be expensive. WTH? I don't care.......
 

momja

New member
Well little update; the nurse called back from the office. Full panel? What's that? I explained to her what it was I wanted tested. If they are testing why not do it right. I gave her the info the lab tech gave me and gave her his #. (When do I get my paycheck?)
She said that she didn't know if insurance would pay for it and that it would probably be expensive. WTH? I don't care.......
 

momja

New member
Well little update; the nurse called back from the office. Full panel? What's that? I explained to her what it was I wanted tested. If they are testing why not do it right. I gave her the info the lab tech gave me and gave her his #. (When do I get my paycheck?)
She said that she didn't know if insurance would pay for it and that it would probably be expensive. WTH? I don't care.......
 

momja

New member
Well little update; the nurse called back from the office. Full panel? What's that? I explained to her what it was I wanted tested. If they are testing why not do it right. I gave her the info the lab tech gave me and gave her his #. (When do I get my paycheck?)
She said that she didn't know if insurance would pay for it and that it would probably be expensive. WTH? I don't care.......
 

okok

New member
Sometimes insurance companies want to know that the cheaper genetic testing is unable to find any mutations before they pay for testing that costs over 2000$. Honestly I kind of understand it. If i had to pay 3000$ for genetic testing and knew that there was a 90% chance the mutations would show up on a test that only cost a few hundred dollars i might opt to go the cheaper route before i shelled out the big bucks too.
I competely disagree with this method though in any population other than strictly caucasion or ashkenazi jewish since in any other popuolations these 30 or 70 panel tests are much less predictive. For caucasions though a small number of CFTR mutations cause a huge proportion of the disease within the population.

The best thing to do though (instead of the 70 panel mutation and then ambry) would for the blood to be sent directly to ambry and for ambry to do a df508 only test and then if that came up with nothing or only 1 mutaion to pay for the ambry amplified testing. This gives you the best of both worlds.
 

okok

New member
Sometimes insurance companies want to know that the cheaper genetic testing is unable to find any mutations before they pay for testing that costs over 2000$. Honestly I kind of understand it. If i had to pay 3000$ for genetic testing and knew that there was a 90% chance the mutations would show up on a test that only cost a few hundred dollars i might opt to go the cheaper route before i shelled out the big bucks too.
I competely disagree with this method though in any population other than strictly caucasion or ashkenazi jewish since in any other popuolations these 30 or 70 panel tests are much less predictive. For caucasions though a small number of CFTR mutations cause a huge proportion of the disease within the population.

The best thing to do though (instead of the 70 panel mutation and then ambry) would for the blood to be sent directly to ambry and for ambry to do a df508 only test and then if that came up with nothing or only 1 mutaion to pay for the ambry amplified testing. This gives you the best of both worlds.
 

okok

New member
Sometimes insurance companies want to know that the cheaper genetic testing is unable to find any mutations before they pay for testing that costs over 2000$. Honestly I kind of understand it. If i had to pay 3000$ for genetic testing and knew that there was a 90% chance the mutations would show up on a test that only cost a few hundred dollars i might opt to go the cheaper route before i shelled out the big bucks too.
I competely disagree with this method though in any population other than strictly caucasion or ashkenazi jewish since in any other popuolations these 30 or 70 panel tests are much less predictive. For caucasions though a small number of CFTR mutations cause a huge proportion of the disease within the population.

The best thing to do though (instead of the 70 panel mutation and then ambry) would for the blood to be sent directly to ambry and for ambry to do a df508 only test and then if that came up with nothing or only 1 mutaion to pay for the ambry amplified testing. This gives you the best of both worlds.
 

okok

New member
Sometimes insurance companies want to know that the cheaper genetic testing is unable to find any mutations before they pay for testing that costs over 2000$. Honestly I kind of understand it. If i had to pay 3000$ for genetic testing and knew that there was a 90% chance the mutations would show up on a test that only cost a few hundred dollars i might opt to go the cheaper route before i shelled out the big bucks too.
I competely disagree with this method though in any population other than strictly caucasion or ashkenazi jewish since in any other popuolations these 30 or 70 panel tests are much less predictive. For caucasions though a small number of CFTR mutations cause a huge proportion of the disease within the population.

The best thing to do though (instead of the 70 panel mutation and then ambry) would for the blood to be sent directly to ambry and for ambry to do a df508 only test and then if that came up with nothing or only 1 mutaion to pay for the ambry amplified testing. This gives you the best of both worlds.
 

okok

New member
Sometimes insurance companies want to know that the cheaper genetic testing is unable to find any mutations before they pay for testing that costs over 2000$. Honestly I kind of understand it. If i had to pay 3000$ for genetic testing and knew that there was a 90% chance the mutations would show up on a test that only cost a few hundred dollars i might opt to go the cheaper route before i shelled out the big bucks too.
I competely disagree with this method though in any population other than strictly caucasion or ashkenazi jewish since in any other popuolations these 30 or 70 panel tests are much less predictive. For caucasions though a small number of CFTR mutations cause a huge proportion of the disease within the population.

The best thing to do though (instead of the 70 panel mutation and then ambry) would for the blood to be sent directly to ambry and for ambry to do a df508 only test and then if that came up with nothing or only 1 mutaion to pay for the ambry amplified testing. This gives you the best of both worlds.
 

okok

New member
Sometimes insurance companies want to know that the cheaper genetic testing is unable to find any mutations before they pay for testing that costs over 2000$. Honestly I kind of understand it. If i had to pay 3000$ for genetic testing and knew that there was a 90% chance the mutations would show up on a test that only cost a few hundred dollars i might opt to go the cheaper route before i shelled out the big bucks too.
I competely disagree with this method though in any population other than strictly caucasion or ashkenazi jewish since in any other popuolations these 30 or 70 panel tests are much less predictive. For caucasions though a small number of CFTR mutations cause a huge proportion of the disease within the population.

The best thing to do though (instead of the 70 panel mutation and then ambry) would for the blood to be sent directly to ambry and for ambry to do a df508 only test and then if that came up with nothing or only 1 mutaion to pay for the ambry amplified testing. This gives you the best of both worlds.
 
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