Need input re: genetic testing

M

momofsinus

Guest
Hi - need some advice for our situation. My son, 22, is the one with chronic sinus infections/polyps. First sweat chloride test at local hospital was 53. Retest at CFF center at Loyola was 21 in one arm and 27 in the other.

Should I ask about these vastly different results at each lab?

Should I push for genetic testing to once and for all rule CF in or out? Our ENT doctor is great but is puzzled by my son's case - most people respond well to surgery and get relief, the mucus he has is very thick and sticky (he goes for cleanings about once a month) and multiple cultures have been negative for resistant bacteria or mold.

Does anyone know the cost involved for genetic testing (ballpark figure)I'm thinking our insurance won't cover since last chloride results are so low.

Thanks for listening. I would appreciate any thoughts.
 
M

momofsinus

Guest
Hi - need some advice for our situation. My son, 22, is the one with chronic sinus infections/polyps. First sweat chloride test at local hospital was 53. Retest at CFF center at Loyola was 21 in one arm and 27 in the other.

Should I ask about these vastly different results at each lab?

Should I push for genetic testing to once and for all rule CF in or out? Our ENT doctor is great but is puzzled by my son's case - most people respond well to surgery and get relief, the mucus he has is very thick and sticky (he goes for cleanings about once a month) and multiple cultures have been negative for resistant bacteria or mold.

Does anyone know the cost involved for genetic testing (ballpark figure)I'm thinking our insurance won't cover since last chloride results are so low.

Thanks for listening. I would appreciate any thoughts.
 
M

momofsinus

Guest
Hi - need some advice for our situation. My son, 22, is the one with chronic sinus infections/polyps. First sweat chloride test at local hospital was 53. Retest at CFF center at Loyola was 21 in one arm and 27 in the other.

Should I ask about these vastly different results at each lab?

Should I push for genetic testing to once and for all rule CF in or out? Our ENT doctor is great but is puzzled by my son's case - most people respond well to surgery and get relief, the mucus he has is very thick and sticky (he goes for cleanings about once a month) and multiple cultures have been negative for resistant bacteria or mold.

Does anyone know the cost involved for genetic testing (ballpark figure)I'm thinking our insurance won't cover since last chloride results are so low.

Thanks for listening. I would appreciate any thoughts.
 
M

momofsinus

Guest
Hi - need some advice for our situation. My son, 22, is the one with chronic sinus infections/polyps. First sweat chloride test at local hospital was 53. Retest at CFF center at Loyola was 21 in one arm and 27 in the other.

Should I ask about these vastly different results at each lab?

Should I push for genetic testing to once and for all rule CF in or out? Our ENT doctor is great but is puzzled by my son's case - most people respond well to surgery and get relief, the mucus he has is very thick and sticky (he goes for cleanings about once a month) and multiple cultures have been negative for resistant bacteria or mold.

Does anyone know the cost involved for genetic testing (ballpark figure)I'm thinking our insurance won't cover since last chloride results are so low.

Thanks for listening. I would appreciate any thoughts.
 
M

momofsinus

Guest
Hi - need some advice for our situation. My son, 22, is the one with chronic sinus infections/polyps. First sweat chloride test at local hospital was 53. Retest at CFF center at Loyola was 21 in one arm and 27 in the other.
<br />
<br />Should I ask about these vastly different results at each lab?
<br />
<br />Should I push for genetic testing to once and for all rule CF in or out? Our ENT doctor is great but is puzzled by my son's case - most people respond well to surgery and get relief, the mucus he has is very thick and sticky (he goes for cleanings about once a month) and multiple cultures have been negative for resistant bacteria or mold.
<br />
<br />Does anyone know the cost involved for genetic testing (ballpark figure)I'm thinking our insurance won't cover since last chloride results are so low.
<br />
<br />Thanks for listening. I would appreciate any thoughts.
 
H

hopesiris

Guest
My Ambry full panel test cost 3K. My test was covered by insurance as diagnostic because it did reveal a disease causing mutation/variant combination.
 
H

hopesiris

Guest
My Ambry full panel test cost 3K. My test was covered by insurance as diagnostic because it did reveal a disease causing mutation/variant combination.
 
H

hopesiris

Guest
My Ambry full panel test cost 3K. My test was covered by insurance as diagnostic because it did reveal a disease causing mutation/variant combination.
 
H

hopesiris

Guest
My Ambry full panel test cost 3K. My test was covered by insurance as diagnostic because it did reveal a disease causing mutation/variant combination.
 
H

hopesiris

Guest
My Ambry full panel test cost 3K. My test was covered by insurance as diagnostic because it did reveal a disease causing mutation/variant combination.
<br />
<br />
 
S

sjzbell

New member
I would recommend the genetic testing--blood test. My son went TO a geneticist who did nothing & said nothing's wrong, then did 2 sweat tests--1st borderline, 2nd negative, THEN many months later, our new ped doc sent us to a pulmonologist who was smart enough to draw some stinkin' blood! That's how we got our diagnosis. We were so far past the thought of it even being CF, that when the pulm doc called me w/ the diagnosis, I about fell off of my chair! I know that $3k is a LOT of $$. At least it is for my family, but I know we would've had figured out a way to do it. That mommy instinct is real & I believe, very trustable. I also believe that Dr. MOM doesn't get paid enough to tell the docs what's wrong w/ our babies!! <img src="i/expressions/face-icon-small-wink.gif" border="0"> Anyway, if your heart says do it, I too say do it. BTW, ours WAS covered by ins--& our chloride tests were negative. Good luck!!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

sjzbell

New member
I would recommend the genetic testing--blood test. My son went TO a geneticist who did nothing & said nothing's wrong, then did 2 sweat tests--1st borderline, 2nd negative, THEN many months later, our new ped doc sent us to a pulmonologist who was smart enough to draw some stinkin' blood! That's how we got our diagnosis. We were so far past the thought of it even being CF, that when the pulm doc called me w/ the diagnosis, I about fell off of my chair! I know that $3k is a LOT of $$. At least it is for my family, but I know we would've had figured out a way to do it. That mommy instinct is real & I believe, very trustable. I also believe that Dr. MOM doesn't get paid enough to tell the docs what's wrong w/ our babies!! <img src="i/expressions/face-icon-small-wink.gif" border="0"> Anyway, if your heart says do it, I too say do it. BTW, ours WAS covered by ins--& our chloride tests were negative. Good luck!!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

sjzbell

New member
I would recommend the genetic testing--blood test. My son went TO a geneticist who did nothing & said nothing's wrong, then did 2 sweat tests--1st borderline, 2nd negative, THEN many months later, our new ped doc sent us to a pulmonologist who was smart enough to draw some stinkin' blood! That's how we got our diagnosis. We were so far past the thought of it even being CF, that when the pulm doc called me w/ the diagnosis, I about fell off of my chair! I know that $3k is a LOT of $$. At least it is for my family, but I know we would've had figured out a way to do it. That mommy instinct is real & I believe, very trustable. I also believe that Dr. MOM doesn't get paid enough to tell the docs what's wrong w/ our babies!! <img src="i/expressions/face-icon-small-wink.gif" border="0"> Anyway, if your heart says do it, I too say do it. BTW, ours WAS covered by ins--& our chloride tests were negative. Good luck!!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

sjzbell

New member
I would recommend the genetic testing--blood test. My son went TO a geneticist who did nothing & said nothing's wrong, then did 2 sweat tests--1st borderline, 2nd negative, THEN many months later, our new ped doc sent us to a pulmonologist who was smart enough to draw some stinkin' blood! That's how we got our diagnosis. We were so far past the thought of it even being CF, that when the pulm doc called me w/ the diagnosis, I about fell off of my chair! I know that $3k is a LOT of $$. At least it is for my family, but I know we would've had figured out a way to do it. That mommy instinct is real & I believe, very trustable. I also believe that Dr. MOM doesn't get paid enough to tell the docs what's wrong w/ our babies!! <img src="i/expressions/face-icon-small-wink.gif" border="0"> Anyway, if your heart says do it, I too say do it. BTW, ours WAS covered by ins--& our chloride tests were negative. Good luck!!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

sjzbell

New member
I would recommend the genetic testing--blood test. My son went TO a geneticist who did nothing & said nothing's wrong, then did 2 sweat tests--1st borderline, 2nd negative, THEN many months later, our new ped doc sent us to a pulmonologist who was smart enough to draw some stinkin' blood! That's how we got our diagnosis. We were so far past the thought of it even being CF, that when the pulm doc called me w/ the diagnosis, I about fell off of my chair! I know that $3k is a LOT of $$. At least it is for my family, but I know we would've had figured out a way to do it. That mommy instinct is real & I believe, very trustable. I also believe that Dr. MOM doesn't get paid enough to tell the docs what's wrong w/ our babies!! <img src="i/expressions/face-icon-small-wink.gif" border="0"> Anyway, if your heart says do it, I too say do it. BTW, ours WAS covered by ins--& our chloride tests were negative. Good luck!!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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