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Genetic Test Sent
- Thread starter SandyCheeks
- Start date
SandyCheeks
New member
Tracy, I sent you a pm, I hope you recieved it.
Paula, yes and no. I recieved a call today and the CF nurse said that since it took so long to have our insurance pre- approve the test the lab threw out the origional paper order and only had an electronic version. So when they recieved the blood they guessed where it should go and sent it to genzyme rather than ambry as discussed.
They have offered to have genzyme do sequencing on the specimen... does anyone have information about this. Is it the same test as ambry amplified?
I found out today that a neighbors child has CF (older and just diagnosed). They are just beginning to process this info.
I really love the CFers in my life, but hate the damn disease.
Paula, yes and no. I recieved a call today and the CF nurse said that since it took so long to have our insurance pre- approve the test the lab threw out the origional paper order and only had an electronic version. So when they recieved the blood they guessed where it should go and sent it to genzyme rather than ambry as discussed.
They have offered to have genzyme do sequencing on the specimen... does anyone have information about this. Is it the same test as ambry amplified?
I found out today that a neighbors child has CF (older and just diagnosed). They are just beginning to process this info.
I really love the CFers in my life, but hate the damn disease.
SandyCheeks
New member
Tracy, I sent you a pm, I hope you recieved it.
Paula, yes and no. I recieved a call today and the CF nurse said that since it took so long to have our insurance pre- approve the test the lab threw out the origional paper order and only had an electronic version. So when they recieved the blood they guessed where it should go and sent it to genzyme rather than ambry as discussed.
They have offered to have genzyme do sequencing on the specimen... does anyone have information about this. Is it the same test as ambry amplified?
I found out today that a neighbors child has CF (older and just diagnosed). They are just beginning to process this info.
I really love the CFers in my life, but hate the damn disease.
Paula, yes and no. I recieved a call today and the CF nurse said that since it took so long to have our insurance pre- approve the test the lab threw out the origional paper order and only had an electronic version. So when they recieved the blood they guessed where it should go and sent it to genzyme rather than ambry as discussed.
They have offered to have genzyme do sequencing on the specimen... does anyone have information about this. Is it the same test as ambry amplified?
I found out today that a neighbors child has CF (older and just diagnosed). They are just beginning to process this info.
I really love the CFers in my life, but hate the damn disease.
SandyCheeks
New member
Tracy, I sent you a pm, I hope you recieved it.
Paula, yes and no. I recieved a call today and the CF nurse said that since it took so long to have our insurance pre- approve the test the lab threw out the origional paper order and only had an electronic version. So when they recieved the blood they guessed where it should go and sent it to genzyme rather than ambry as discussed.
They have offered to have genzyme do sequencing on the specimen... does anyone have information about this. Is it the same test as ambry amplified?
I found out today that a neighbors child has CF (older and just diagnosed). They are just beginning to process this info.
I really love the CFers in my life, but hate the damn disease.
Paula, yes and no. I recieved a call today and the CF nurse said that since it took so long to have our insurance pre- approve the test the lab threw out the origional paper order and only had an electronic version. So when they recieved the blood they guessed where it should go and sent it to genzyme rather than ambry as discussed.
They have offered to have genzyme do sequencing on the specimen... does anyone have information about this. Is it the same test as ambry amplified?
I found out today that a neighbors child has CF (older and just diagnosed). They are just beginning to process this info.
I really love the CFers in my life, but hate the damn disease.
SandyCheeks
New member
Tracy, I sent you a pm, I hope you recieved it.
Paula, yes and no. I recieved a call today and the CF nurse said that since it took so long to have our insurance pre- approve the test the lab threw out the origional paper order and only had an electronic version. So when they recieved the blood they guessed where it should go and sent it to genzyme rather than ambry as discussed.
They have offered to have genzyme do sequencing on the specimen... does anyone have information about this. Is it the same test as ambry amplified?
I found out today that a neighbors child has CF (older and just diagnosed). They are just beginning to process this info.
I really love the CFers in my life, but hate the damn disease.
Paula, yes and no. I recieved a call today and the CF nurse said that since it took so long to have our insurance pre- approve the test the lab threw out the origional paper order and only had an electronic version. So when they recieved the blood they guessed where it should go and sent it to genzyme rather than ambry as discussed.
They have offered to have genzyme do sequencing on the specimen... does anyone have information about this. Is it the same test as ambry amplified?
I found out today that a neighbors child has CF (older and just diagnosed). They are just beginning to process this info.
I really love the CFers in my life, but hate the damn disease.
SandyCheeks
New member
Tracy, I sent you a pm, I hope you recieved it.
<br />
<br />Paula, yes and no. I recieved a call today and the CF nurse said that since it took so long to have our insurance pre- approve the test the lab threw out the origional paper order and only had an electronic version. So when they recieved the blood they guessed where it should go and sent it to genzyme rather than ambry as discussed.
<br />
<br />They have offered to have genzyme do sequencing on the specimen... does anyone have information about this. Is it the same test as ambry amplified?
<br />
<br />I found out today that a neighbors child has CF (older and just diagnosed). They are just beginning to process this info.
<br />
<br />I really love the CFers in my life, but hate the damn disease.
<br />
<br />Paula, yes and no. I recieved a call today and the CF nurse said that since it took so long to have our insurance pre- approve the test the lab threw out the origional paper order and only had an electronic version. So when they recieved the blood they guessed where it should go and sent it to genzyme rather than ambry as discussed.
<br />
<br />They have offered to have genzyme do sequencing on the specimen... does anyone have information about this. Is it the same test as ambry amplified?
<br />
<br />I found out today that a neighbors child has CF (older and just diagnosed). They are just beginning to process this info.
<br />
<br />I really love the CFers in my life, but hate the damn disease.
Ugh on the mix up.
From what I know, Genzyme does a full sequence analysis of the cf gene and a mutation panel test of 97 or so mutations.
What I don't believe Genzyme does that the Ambry Amplified does is the deletion and duplication testing.
The full sequence is quite a test and will test for all the known mutations on the cf gene. You are looking at finding 98% of mutations. Adding the deletion and duplication testing that Ambry does brings you to 99%.
There is always the factor of unknown mutations being the cause or possible issues outiside the cf gene causing problems.
I would wait and see what the test shows. If it comes up negative and it was the full sequencing not just the panel and you still have serious concerns redraw the blood and have it sent to Ambry. It is was just the panel I would definately redo the test.
Good Luck!
From what I know, Genzyme does a full sequence analysis of the cf gene and a mutation panel test of 97 or so mutations.
What I don't believe Genzyme does that the Ambry Amplified does is the deletion and duplication testing.
The full sequence is quite a test and will test for all the known mutations on the cf gene. You are looking at finding 98% of mutations. Adding the deletion and duplication testing that Ambry does brings you to 99%.
There is always the factor of unknown mutations being the cause or possible issues outiside the cf gene causing problems.
I would wait and see what the test shows. If it comes up negative and it was the full sequencing not just the panel and you still have serious concerns redraw the blood and have it sent to Ambry. It is was just the panel I would definately redo the test.
Good Luck!
Ugh on the mix up.
From what I know, Genzyme does a full sequence analysis of the cf gene and a mutation panel test of 97 or so mutations.
What I don't believe Genzyme does that the Ambry Amplified does is the deletion and duplication testing.
The full sequence is quite a test and will test for all the known mutations on the cf gene. You are looking at finding 98% of mutations. Adding the deletion and duplication testing that Ambry does brings you to 99%.
There is always the factor of unknown mutations being the cause or possible issues outiside the cf gene causing problems.
I would wait and see what the test shows. If it comes up negative and it was the full sequencing not just the panel and you still have serious concerns redraw the blood and have it sent to Ambry. It is was just the panel I would definately redo the test.
Good Luck!
From what I know, Genzyme does a full sequence analysis of the cf gene and a mutation panel test of 97 or so mutations.
What I don't believe Genzyme does that the Ambry Amplified does is the deletion and duplication testing.
The full sequence is quite a test and will test for all the known mutations on the cf gene. You are looking at finding 98% of mutations. Adding the deletion and duplication testing that Ambry does brings you to 99%.
There is always the factor of unknown mutations being the cause or possible issues outiside the cf gene causing problems.
I would wait and see what the test shows. If it comes up negative and it was the full sequencing not just the panel and you still have serious concerns redraw the blood and have it sent to Ambry. It is was just the panel I would definately redo the test.
Good Luck!
Ugh on the mix up.
From what I know, Genzyme does a full sequence analysis of the cf gene and a mutation panel test of 97 or so mutations.
What I don't believe Genzyme does that the Ambry Amplified does is the deletion and duplication testing.
The full sequence is quite a test and will test for all the known mutations on the cf gene. You are looking at finding 98% of mutations. Adding the deletion and duplication testing that Ambry does brings you to 99%.
There is always the factor of unknown mutations being the cause or possible issues outiside the cf gene causing problems.
I would wait and see what the test shows. If it comes up negative and it was the full sequencing not just the panel and you still have serious concerns redraw the blood and have it sent to Ambry. It is was just the panel I would definately redo the test.
Good Luck!
From what I know, Genzyme does a full sequence analysis of the cf gene and a mutation panel test of 97 or so mutations.
What I don't believe Genzyme does that the Ambry Amplified does is the deletion and duplication testing.
The full sequence is quite a test and will test for all the known mutations on the cf gene. You are looking at finding 98% of mutations. Adding the deletion and duplication testing that Ambry does brings you to 99%.
There is always the factor of unknown mutations being the cause or possible issues outiside the cf gene causing problems.
I would wait and see what the test shows. If it comes up negative and it was the full sequencing not just the panel and you still have serious concerns redraw the blood and have it sent to Ambry. It is was just the panel I would definately redo the test.
Good Luck!
Ugh on the mix up.
From what I know, Genzyme does a full sequence analysis of the cf gene and a mutation panel test of 97 or so mutations.
What I don't believe Genzyme does that the Ambry Amplified does is the deletion and duplication testing.
The full sequence is quite a test and will test for all the known mutations on the cf gene. You are looking at finding 98% of mutations. Adding the deletion and duplication testing that Ambry does brings you to 99%.
There is always the factor of unknown mutations being the cause or possible issues outiside the cf gene causing problems.
I would wait and see what the test shows. If it comes up negative and it was the full sequencing not just the panel and you still have serious concerns redraw the blood and have it sent to Ambry. It is was just the panel I would definately redo the test.
Good Luck!
From what I know, Genzyme does a full sequence analysis of the cf gene and a mutation panel test of 97 or so mutations.
What I don't believe Genzyme does that the Ambry Amplified does is the deletion and duplication testing.
The full sequence is quite a test and will test for all the known mutations on the cf gene. You are looking at finding 98% of mutations. Adding the deletion and duplication testing that Ambry does brings you to 99%.
There is always the factor of unknown mutations being the cause or possible issues outiside the cf gene causing problems.
I would wait and see what the test shows. If it comes up negative and it was the full sequencing not just the panel and you still have serious concerns redraw the blood and have it sent to Ambry. It is was just the panel I would definately redo the test.
Good Luck!
Ugh on the mix up.
<br />From what I know, Genzyme does a full sequence analysis of the cf gene and a mutation panel test of 97 or so mutations.
<br />
<br />What I don't believe Genzyme does that the Ambry Amplified does is the deletion and duplication testing.
<br />
<br />The full sequence is quite a test and will test for all the known mutations on the cf gene. You are looking at finding 98% of mutations. Adding the deletion and duplication testing that Ambry does brings you to 99%.
<br />
<br />There is always the factor of unknown mutations being the cause or possible issues outiside the cf gene causing problems.
<br />
<br />I would wait and see what the test shows. If it comes up negative and it was the full sequencing not just the panel and you still have serious concerns redraw the blood and have it sent to Ambry. It is was just the panel I would definately redo the test.
<br />
<br />Good Luck!
<br />From what I know, Genzyme does a full sequence analysis of the cf gene and a mutation panel test of 97 or so mutations.
<br />
<br />What I don't believe Genzyme does that the Ambry Amplified does is the deletion and duplication testing.
<br />
<br />The full sequence is quite a test and will test for all the known mutations on the cf gene. You are looking at finding 98% of mutations. Adding the deletion and duplication testing that Ambry does brings you to 99%.
<br />
<br />There is always the factor of unknown mutations being the cause or possible issues outiside the cf gene causing problems.
<br />
<br />I would wait and see what the test shows. If it comes up negative and it was the full sequencing not just the panel and you still have serious concerns redraw the blood and have it sent to Ambry. It is was just the panel I would definately redo the test.
<br />
<br />Good Luck!
SandyCheeks
New member
Thanks, I remembered there was a reason that they were ordering the Ambry test. We have had a very good summer with minimal sinus issues (thanks I beleive to time spent a the beach), but my youngest is starting to have increased sinus issues despite being on the standard zyrtec, nasonex, prilosec, and albuterol. I hate having to deal with people who are not able to do their jobs, but I won't feel comfortable until we answer these questions.
I am trying to find a polite way to write a not so polite letter to the hospital to ask them to cover the cost of the test they had run. It didn't cost me anything but I feel like my insurance should not have to pay $700 for their mistake. I will also be asking for a change in how they do things (a follow-up phone call prior to throwing away an order).
I am also concerned that my insurance will not cover further testing if they keep doing the same test over and over again (this is the 2nd time they ran the same 97 genes).
Getting more blood from my dd is very difficult, she has severe anxiety to needles. I know a cheek swab can be used as well but for some reason I feel so much more secure with blood being tested.
Thanks again for your reply.
I am trying to find a polite way to write a not so polite letter to the hospital to ask them to cover the cost of the test they had run. It didn't cost me anything but I feel like my insurance should not have to pay $700 for their mistake. I will also be asking for a change in how they do things (a follow-up phone call prior to throwing away an order).
I am also concerned that my insurance will not cover further testing if they keep doing the same test over and over again (this is the 2nd time they ran the same 97 genes).
Getting more blood from my dd is very difficult, she has severe anxiety to needles. I know a cheek swab can be used as well but for some reason I feel so much more secure with blood being tested.
Thanks again for your reply.
SandyCheeks
New member
Thanks, I remembered there was a reason that they were ordering the Ambry test. We have had a very good summer with minimal sinus issues (thanks I beleive to time spent a the beach), but my youngest is starting to have increased sinus issues despite being on the standard zyrtec, nasonex, prilosec, and albuterol. I hate having to deal with people who are not able to do their jobs, but I won't feel comfortable until we answer these questions.
I am trying to find a polite way to write a not so polite letter to the hospital to ask them to cover the cost of the test they had run. It didn't cost me anything but I feel like my insurance should not have to pay $700 for their mistake. I will also be asking for a change in how they do things (a follow-up phone call prior to throwing away an order).
I am also concerned that my insurance will not cover further testing if they keep doing the same test over and over again (this is the 2nd time they ran the same 97 genes).
Getting more blood from my dd is very difficult, she has severe anxiety to needles. I know a cheek swab can be used as well but for some reason I feel so much more secure with blood being tested.
Thanks again for your reply.
I am trying to find a polite way to write a not so polite letter to the hospital to ask them to cover the cost of the test they had run. It didn't cost me anything but I feel like my insurance should not have to pay $700 for their mistake. I will also be asking for a change in how they do things (a follow-up phone call prior to throwing away an order).
I am also concerned that my insurance will not cover further testing if they keep doing the same test over and over again (this is the 2nd time they ran the same 97 genes).
Getting more blood from my dd is very difficult, she has severe anxiety to needles. I know a cheek swab can be used as well but for some reason I feel so much more secure with blood being tested.
Thanks again for your reply.
SandyCheeks
New member
Thanks, I remembered there was a reason that they were ordering the Ambry test. We have had a very good summer with minimal sinus issues (thanks I beleive to time spent a the beach), but my youngest is starting to have increased sinus issues despite being on the standard zyrtec, nasonex, prilosec, and albuterol. I hate having to deal with people who are not able to do their jobs, but I won't feel comfortable until we answer these questions.
I am trying to find a polite way to write a not so polite letter to the hospital to ask them to cover the cost of the test they had run. It didn't cost me anything but I feel like my insurance should not have to pay $700 for their mistake. I will also be asking for a change in how they do things (a follow-up phone call prior to throwing away an order).
I am also concerned that my insurance will not cover further testing if they keep doing the same test over and over again (this is the 2nd time they ran the same 97 genes).
Getting more blood from my dd is very difficult, she has severe anxiety to needles. I know a cheek swab can be used as well but for some reason I feel so much more secure with blood being tested.
Thanks again for your reply.
I am trying to find a polite way to write a not so polite letter to the hospital to ask them to cover the cost of the test they had run. It didn't cost me anything but I feel like my insurance should not have to pay $700 for their mistake. I will also be asking for a change in how they do things (a follow-up phone call prior to throwing away an order).
I am also concerned that my insurance will not cover further testing if they keep doing the same test over and over again (this is the 2nd time they ran the same 97 genes).
Getting more blood from my dd is very difficult, she has severe anxiety to needles. I know a cheek swab can be used as well but for some reason I feel so much more secure with blood being tested.
Thanks again for your reply.
SandyCheeks
New member
Thanks, I remembered there was a reason that they were ordering the Ambry test. We have had a very good summer with minimal sinus issues (thanks I beleive to time spent a the beach), but my youngest is starting to have increased sinus issues despite being on the standard zyrtec, nasonex, prilosec, and albuterol. I hate having to deal with people who are not able to do their jobs, but I won't feel comfortable until we answer these questions.
I am trying to find a polite way to write a not so polite letter to the hospital to ask them to cover the cost of the test they had run. It didn't cost me anything but I feel like my insurance should not have to pay $700 for their mistake. I will also be asking for a change in how they do things (a follow-up phone call prior to throwing away an order).
I am also concerned that my insurance will not cover further testing if they keep doing the same test over and over again (this is the 2nd time they ran the same 97 genes).
Getting more blood from my dd is very difficult, she has severe anxiety to needles. I know a cheek swab can be used as well but for some reason I feel so much more secure with blood being tested.
Thanks again for your reply.
I am trying to find a polite way to write a not so polite letter to the hospital to ask them to cover the cost of the test they had run. It didn't cost me anything but I feel like my insurance should not have to pay $700 for their mistake. I will also be asking for a change in how they do things (a follow-up phone call prior to throwing away an order).
I am also concerned that my insurance will not cover further testing if they keep doing the same test over and over again (this is the 2nd time they ran the same 97 genes).
Getting more blood from my dd is very difficult, she has severe anxiety to needles. I know a cheek swab can be used as well but for some reason I feel so much more secure with blood being tested.
Thanks again for your reply.
SandyCheeks
New member
Thanks, I remembered there was a reason that they were ordering the Ambry test. We have had a very good summer with minimal sinus issues (thanks I beleive to time spent a the beach), but my youngest is starting to have increased sinus issues despite being on the standard zyrtec, nasonex, prilosec, and albuterol. I hate having to deal with people who are not able to do their jobs, but I won't feel comfortable until we answer these questions.
<br />
<br />I am trying to find a polite way to write a not so polite letter to the hospital to ask them to cover the cost of the test they had run. It didn't cost me anything but I feel like my insurance should not have to pay $700 for their mistake. I will also be asking for a change in how they do things (a follow-up phone call prior to throwing away an order).
<br />
<br />I am also concerned that my insurance will not cover further testing if they keep doing the same test over and over again (this is the 2nd time they ran the same 97 genes).
<br />
<br />Getting more blood from my dd is very difficult, she has severe anxiety to needles. I know a cheek swab can be used as well but for some reason I feel so much more secure with blood being tested.
<br />
<br />Thanks again for your reply.
<br />
<br />I am trying to find a polite way to write a not so polite letter to the hospital to ask them to cover the cost of the test they had run. It didn't cost me anything but I feel like my insurance should not have to pay $700 for their mistake. I will also be asking for a change in how they do things (a follow-up phone call prior to throwing away an order).
<br />
<br />I am also concerned that my insurance will not cover further testing if they keep doing the same test over and over again (this is the 2nd time they ran the same 97 genes).
<br />
<br />Getting more blood from my dd is very difficult, she has severe anxiety to needles. I know a cheek swab can be used as well but for some reason I feel so much more secure with blood being tested.
<br />
<br />Thanks again for your reply.