combo76( is new) posted this on someones topic

J

JazzysMom

New member
Was the sweat test done at an accredited CF center? This is important, but doesnt guarantee that the CF will show.

Genetic testing really should be done. IF nothing else to rule it out 100%.

IT is a routine blood draw. Its important that they request the complete genetic panel tho.

If you have any ?? about the test you can go to the AMBRY GENETICS thread in the FAMILY SECTION. We have a rep from Ambry named Steve who comes & answers any ?? that are put there. He is very knowledable & helpful.

HUGS
 
J

JazzysMom

New member
Was the sweat test done at an accredited CF center? This is important, but doesnt guarantee that the CF will show.

Genetic testing really should be done. IF nothing else to rule it out 100%.

IT is a routine blood draw. Its important that they request the complete genetic panel tho.

If you have any ?? about the test you can go to the AMBRY GENETICS thread in the FAMILY SECTION. We have a rep from Ambry named Steve who comes & answers any ?? that are put there. He is very knowledable & helpful.

HUGS
 
J

JazzysMom

New member
Was the sweat test done at an accredited CF center? This is important, but doesnt guarantee that the CF will show.

Genetic testing really should be done. IF nothing else to rule it out 100%.

IT is a routine blood draw. Its important that they request the complete genetic panel tho.

If you have any ?? about the test you can go to the AMBRY GENETICS thread in the FAMILY SECTION. We have a rep from Ambry named Steve who comes & answers any ?? that are put there. He is very knowledable & helpful.

HUGS
 
J

JazzysMom

New member
Was the sweat test done at an accredited CF center? This is important, but doesnt guarantee that the CF will show.

Genetic testing really should be done. IF nothing else to rule it out 100%.

IT is a routine blood draw. Its important that they request the complete genetic panel tho.

If you have any ?? about the test you can go to the AMBRY GENETICS thread in the FAMILY SECTION. We have a rep from Ambry named Steve who comes & answers any ?? that are put there. He is very knowledable & helpful.

HUGS
 
J

JazzysMom

New member
Was the sweat test done at an accredited CF center? This is important, but doesnt guarantee that the CF will show.
<br />
<br />Genetic testing really should be done. IF nothing else to rule it out 100%.
<br />
<br />IT is a routine blood draw. Its important that they request the complete genetic panel tho.
<br />
<br />If you have any ?? about the test you can go to the AMBRY GENETICS thread in the FAMILY SECTION. We have a rep from Ambry named Steve who comes & answers any ?? that are put there. He is very knowledable & helpful.
<br />
<br />HUGS
 
M

Marjolein

New member
Welcome to the boards, I hope you can find everything you need.
Your story sounds like it could be CF.
I would push for genetic testing too. It's a simple blood test. Ask them to do the Ambry full panel, that tests for over 1500 gene mutations. Most of the time they do the small panel that only tests for less then a 100. Don't let them do that, push for the full panel.

I do hope it will be negative.

Good luck
 
M

Marjolein

New member
Welcome to the boards, I hope you can find everything you need.
Your story sounds like it could be CF.
I would push for genetic testing too. It's a simple blood test. Ask them to do the Ambry full panel, that tests for over 1500 gene mutations. Most of the time they do the small panel that only tests for less then a 100. Don't let them do that, push for the full panel.

I do hope it will be negative.

Good luck
 
M

Marjolein

New member
Welcome to the boards, I hope you can find everything you need.
Your story sounds like it could be CF.
I would push for genetic testing too. It's a simple blood test. Ask them to do the Ambry full panel, that tests for over 1500 gene mutations. Most of the time they do the small panel that only tests for less then a 100. Don't let them do that, push for the full panel.

I do hope it will be negative.

Good luck
 
M

Marjolein

New member
Welcome to the boards, I hope you can find everything you need.
Your story sounds like it could be CF.
I would push for genetic testing too. It's a simple blood test. Ask them to do the Ambry full panel, that tests for over 1500 gene mutations. Most of the time they do the small panel that only tests for less then a 100. Don't let them do that, push for the full panel.

I do hope it will be negative.

Good luck
 
M

Marjolein

New member
Welcome to the boards, I hope you can find everything you need.
<br />Your story sounds like it could be CF.
<br />I would push for genetic testing too. It's a simple blood test. Ask them to do the Ambry full panel, that tests for over 1500 gene mutations. Most of the time they do the small panel that only tests for less then a 100. Don't let them do that, push for the full panel.
<br />
<br />I do hope it will be negative.
<br />
<br />Good luck
 
C

combo76

New member
Thanks again - you all are very knowledgeable & helpful. I did check out the ambry site linked to this web, but I was just checking w/ you all, in regard to how accurate it was. What I don't get - is why do drs run these tests, when there is a possibility of the results not being accurate. It's just frustrating. The test was done @ Children's Hospital, and they were listed as being an acredited facility (thanks). I am going to ask for the genetic testing, I know my dr will give me a hard time if I ask for genetic testing (horrible isn't it?).

Thank you again - you all really helped out with the whole white streaking issue.
 
C

combo76

New member
Thanks again - you all are very knowledgeable & helpful. I did check out the ambry site linked to this web, but I was just checking w/ you all, in regard to how accurate it was. What I don't get - is why do drs run these tests, when there is a possibility of the results not being accurate. It's just frustrating. The test was done @ Children's Hospital, and they were listed as being an acredited facility (thanks). I am going to ask for the genetic testing, I know my dr will give me a hard time if I ask for genetic testing (horrible isn't it?).

Thank you again - you all really helped out with the whole white streaking issue.
 
C

combo76

New member
Thanks again - you all are very knowledgeable & helpful. I did check out the ambry site linked to this web, but I was just checking w/ you all, in regard to how accurate it was. What I don't get - is why do drs run these tests, when there is a possibility of the results not being accurate. It's just frustrating. The test was done @ Children's Hospital, and they were listed as being an acredited facility (thanks). I am going to ask for the genetic testing, I know my dr will give me a hard time if I ask for genetic testing (horrible isn't it?).

Thank you again - you all really helped out with the whole white streaking issue.
 
C

combo76

New member
Thanks again - you all are very knowledgeable & helpful. I did check out the ambry site linked to this web, but I was just checking w/ you all, in regard to how accurate it was. What I don't get - is why do drs run these tests, when there is a possibility of the results not being accurate. It's just frustrating. The test was done @ Children's Hospital, and they were listed as being an acredited facility (thanks). I am going to ask for the genetic testing, I know my dr will give me a hard time if I ask for genetic testing (horrible isn't it?).

Thank you again - you all really helped out with the whole white streaking issue.
 
C

combo76

New member
Thanks again - you all are very knowledgeable & helpful. I did check out the ambry site linked to this web, but I was just checking w/ you all, in regard to how accurate it was. What I don't get - is why do drs run these tests, when there is a possibility of the results not being accurate. It's just frustrating. The test was done @ Children's Hospital, and they were listed as being an acredited facility (thanks). I am going to ask for the genetic testing, I know my dr will give me a hard time if I ask for genetic testing (horrible isn't it?).
<br />
<br />Thank you again - you all really helped out with the whole white streaking issue.
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>combo76</b></i>
What I don't get - is why do drs run these tests, when there is a possibility of the results not being accurate. It's just frustrating. The test was done @ Children's Hospital, and they were listed as being an acredited facility (thanks). I am going to ask for the genetic testing, I know my dr will give me a hard time if I ask for genetic testing (horrible isn't it?).



Thank you again - you all really helped out with the whole white streaking issue.</end quote></div>

Most places start with the sweat test because its the cheapest & to many doctors still the "gold standard" of testing. Chances are good that due to cost you will probably start with the basic panel of genetic testing. This is a drop in the bucket compared to the over 1500 that are known.

Unless the insurance is an HMO that drives the doctor not to push for it.....it shouldnt be his say. ALSO another thought is that you can contact at CF Center directly. Unless your insurance requires a referral from the doctor you speak of, it might be an easier avenue for you to get additional testing.
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>combo76</b></i>
What I don't get - is why do drs run these tests, when there is a possibility of the results not being accurate. It's just frustrating. The test was done @ Children's Hospital, and they were listed as being an acredited facility (thanks). I am going to ask for the genetic testing, I know my dr will give me a hard time if I ask for genetic testing (horrible isn't it?).



Thank you again - you all really helped out with the whole white streaking issue.</end quote></div>

Most places start with the sweat test because its the cheapest & to many doctors still the "gold standard" of testing. Chances are good that due to cost you will probably start with the basic panel of genetic testing. This is a drop in the bucket compared to the over 1500 that are known.

Unless the insurance is an HMO that drives the doctor not to push for it.....it shouldnt be his say. ALSO another thought is that you can contact at CF Center directly. Unless your insurance requires a referral from the doctor you speak of, it might be an easier avenue for you to get additional testing.
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>combo76</b></i>
What I don't get - is why do drs run these tests, when there is a possibility of the results not being accurate. It's just frustrating. The test was done @ Children's Hospital, and they were listed as being an acredited facility (thanks). I am going to ask for the genetic testing, I know my dr will give me a hard time if I ask for genetic testing (horrible isn't it?).



Thank you again - you all really helped out with the whole white streaking issue.</end quote></div>

Most places start with the sweat test because its the cheapest & to many doctors still the "gold standard" of testing. Chances are good that due to cost you will probably start with the basic panel of genetic testing. This is a drop in the bucket compared to the over 1500 that are known.

Unless the insurance is an HMO that drives the doctor not to push for it.....it shouldnt be his say. ALSO another thought is that you can contact at CF Center directly. Unless your insurance requires a referral from the doctor you speak of, it might be an easier avenue for you to get additional testing.
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>combo76</b></i>
What I don't get - is why do drs run these tests, when there is a possibility of the results not being accurate. It's just frustrating. The test was done @ Children's Hospital, and they were listed as being an acredited facility (thanks). I am going to ask for the genetic testing, I know my dr will give me a hard time if I ask for genetic testing (horrible isn't it?).



Thank you again - you all really helped out with the whole white streaking issue.</end quote>

Most places start with the sweat test because its the cheapest & to many doctors still the "gold standard" of testing. Chances are good that due to cost you will probably start with the basic panel of genetic testing. This is a drop in the bucket compared to the over 1500 that are known.

Unless the insurance is an HMO that drives the doctor not to push for it.....it shouldnt be his say. ALSO another thought is that you can contact at CF Center directly. Unless your insurance requires a referral from the doctor you speak of, it might be an easier avenue for you to get additional testing.
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>combo76</b></i>
<br /> What I don't get - is why do drs run these tests, when there is a possibility of the results not being accurate. It's just frustrating. The test was done @ Children's Hospital, and they were listed as being an acredited facility (thanks). I am going to ask for the genetic testing, I know my dr will give me a hard time if I ask for genetic testing (horrible isn't it?).
<br />
<br />
<br />
<br />Thank you again - you all really helped out with the whole white streaking issue.</end quote>
<br />
<br />Most places start with the sweat test because its the cheapest & to many doctors still the "gold standard" of testing. Chances are good that due to cost you will probably start with the basic panel of genetic testing. This is a drop in the bucket compared to the over 1500 that are known.
<br />
<br />Unless the insurance is an HMO that drives the doctor not to push for it.....it shouldnt be his say. ALSO another thought is that you can contact at CF Center directly. Unless your insurance requires a referral from the doctor you speak of, it might be an easier avenue for you to get additional testing.
 
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