Is this test result REALLY a negative?

N

northzoo

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

Hi Melanie,



Sounds like you are a mom who is on top of your children's healthcare. I'd say a 15 is pretty low, but if you are worried, the only real way to rule out CF is through genetic testing. I think, considering your history, its likely not CF -- but I do believe there have been people around here with high teens or low 20's sweat test that turned out to have 2 CF mutations and thus CF. So while his results are clearly in the negative, the sweat test is mostly reliable at diagnosing CF as opposed to ruling it out.



We might be able to trade some info here, because my daughter who has CF is also being tested for celiacs. Apparently there is a higher likelihood of celiacs in the CF population (I don't know if the reverse is true). My daughter is almost 21 months and is still just 20lbs. Her growth has slowed tremendously and her care for her CF seems to be doing what it needs to, and yet she can't gain. So they suspected celiac's too.</end quote></div>
Heather,
I'd be glad yo answer any questions you may have concerning Celiac disease and testing for it. There are some very specific tests and most docs aren't informed enough and only run one or run the outdated tests. You can email me at northfamilyzoo at gmail dot com with anything, anytime! (This address will self-destruct in T minus 10 minutes.) >grin<

Thanks for the info and advice everyone! I thought I'd get that answer! Though I was really hoping to NOT have to run the full genetic screening as I'm expecting it'll cost us plenty of $$$ and we're currently in debt up to our nostrils from medical bills for our second daughter's hospital stays, procedures, consultations, etc... all BEFORE Celiac Disease was finally discovered... and then 3 more Celiac panels and intestinal biopsies to diagnose 3 more family members, all while we had shabby insurance. ...Sigh... But what can ya do? I can't ignore the possibilities. I'm going to talk with the person over the CFF here for another opinion and our Pedi too and see if we can go forward with genetic testing. Ugh.. it is never ending with us! <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
N

northzoo

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

Hi Melanie,



Sounds like you are a mom who is on top of your children's healthcare. I'd say a 15 is pretty low, but if you are worried, the only real way to rule out CF is through genetic testing. I think, considering your history, its likely not CF -- but I do believe there have been people around here with high teens or low 20's sweat test that turned out to have 2 CF mutations and thus CF. So while his results are clearly in the negative, the sweat test is mostly reliable at diagnosing CF as opposed to ruling it out.



We might be able to trade some info here, because my daughter who has CF is also being tested for celiacs. Apparently there is a higher likelihood of celiacs in the CF population (I don't know if the reverse is true). My daughter is almost 21 months and is still just 20lbs. Her growth has slowed tremendously and her care for her CF seems to be doing what it needs to, and yet she can't gain. So they suspected celiac's too.</end quote></div>
Heather,
I'd be glad yo answer any questions you may have concerning Celiac disease and testing for it. There are some very specific tests and most docs aren't informed enough and only run one or run the outdated tests. You can email me at northfamilyzoo at gmail dot com with anything, anytime! (This address will self-destruct in T minus 10 minutes.) >grin<

Thanks for the info and advice everyone! I thought I'd get that answer! Though I was really hoping to NOT have to run the full genetic screening as I'm expecting it'll cost us plenty of $$$ and we're currently in debt up to our nostrils from medical bills for our second daughter's hospital stays, procedures, consultations, etc... all BEFORE Celiac Disease was finally discovered... and then 3 more Celiac panels and intestinal biopsies to diagnose 3 more family members, all while we had shabby insurance. ...Sigh... But what can ya do? I can't ignore the possibilities. I'm going to talk with the person over the CFF here for another opinion and our Pedi too and see if we can go forward with genetic testing. Ugh.. it is never ending with us! <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
N

northzoo

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

Hi Melanie,



Sounds like you are a mom who is on top of your children's healthcare. I'd say a 15 is pretty low, but if you are worried, the only real way to rule out CF is through genetic testing. I think, considering your history, its likely not CF -- but I do believe there have been people around here with high teens or low 20's sweat test that turned out to have 2 CF mutations and thus CF. So while his results are clearly in the negative, the sweat test is mostly reliable at diagnosing CF as opposed to ruling it out.



We might be able to trade some info here, because my daughter who has CF is also being tested for celiacs. Apparently there is a higher likelihood of celiacs in the CF population (I don't know if the reverse is true). My daughter is almost 21 months and is still just 20lbs. Her growth has slowed tremendously and her care for her CF seems to be doing what it needs to, and yet she can't gain. So they suspected celiac's too.</end quote></div>
Heather,
I'd be glad yo answer any questions you may have concerning Celiac disease and testing for it. There are some very specific tests and most docs aren't informed enough and only run one or run the outdated tests. You can email me at northfamilyzoo at gmail dot com with anything, anytime! (This address will self-destruct in T minus 10 minutes.) >grin<

Thanks for the info and advice everyone! I thought I'd get that answer! Though I was really hoping to NOT have to run the full genetic screening as I'm expecting it'll cost us plenty of $$$ and we're currently in debt up to our nostrils from medical bills for our second daughter's hospital stays, procedures, consultations, etc... all BEFORE Celiac Disease was finally discovered... and then 3 more Celiac panels and intestinal biopsies to diagnose 3 more family members, all while we had shabby insurance. ...Sigh... But what can ya do? I can't ignore the possibilities. I'm going to talk with the person over the CFF here for another opinion and our Pedi too and see if we can go forward with genetic testing. Ugh.. it is never ending with us! <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
N

northzoo

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

Hi Melanie,



Sounds like you are a mom who is on top of your children's healthcare. I'd say a 15 is pretty low, but if you are worried, the only real way to rule out CF is through genetic testing. I think, considering your history, its likely not CF -- but I do believe there have been people around here with high teens or low 20's sweat test that turned out to have 2 CF mutations and thus CF. So while his results are clearly in the negative, the sweat test is mostly reliable at diagnosing CF as opposed to ruling it out.



We might be able to trade some info here, because my daughter who has CF is also being tested for celiacs. Apparently there is a higher likelihood of celiacs in the CF population (I don't know if the reverse is true). My daughter is almost 21 months and is still just 20lbs. Her growth has slowed tremendously and her care for her CF seems to be doing what it needs to, and yet she can't gain. So they suspected celiac's too.</end quote>
Heather,
I'd be glad yo answer any questions you may have concerning Celiac disease and testing for it. There are some very specific tests and most docs aren't informed enough and only run one or run the outdated tests. You can email me at northfamilyzoo at gmail dot com with anything, anytime! (This address will self-destruct in T minus 10 minutes.) >grin<

Thanks for the info and advice everyone! I thought I'd get that answer! Though I was really hoping to NOT have to run the full genetic screening as I'm expecting it'll cost us plenty of $$$ and we're currently in debt up to our nostrils from medical bills for our second daughter's hospital stays, procedures, consultations, etc... all BEFORE Celiac Disease was finally discovered... and then 3 more Celiac panels and intestinal biopsies to diagnose 3 more family members, all while we had shabby insurance. ...Sigh... But what can ya do? I can't ignore the possibilities. I'm going to talk with the person over the CFF here for another opinion and our Pedi too and see if we can go forward with genetic testing. Ugh.. it is never ending with us! <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
N

northzoo

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

Hi Melanie,



Sounds like you are a mom who is on top of your children's healthcare. I'd say a 15 is pretty low, but if you are worried, the only real way to rule out CF is through genetic testing. I think, considering your history, its likely not CF -- but I do believe there have been people around here with high teens or low 20's sweat test that turned out to have 2 CF mutations and thus CF. So while his results are clearly in the negative, the sweat test is mostly reliable at diagnosing CF as opposed to ruling it out.



We might be able to trade some info here, because my daughter who has CF is also being tested for celiacs. Apparently there is a higher likelihood of celiacs in the CF population (I don't know if the reverse is true). My daughter is almost 21 months and is still just 20lbs. Her growth has slowed tremendously and her care for her CF seems to be doing what it needs to, and yet she can't gain. So they suspected celiac's too.</end quote>
Heather,
I'd be glad yo answer any questions you may have concerning Celiac disease and testing for it. There are some very specific tests and most docs aren't informed enough and only run one or run the outdated tests. You can email me at northfamilyzoo at gmail dot com with anything, anytime! (This address will self-destruct in T minus 10 minutes.) >grin<

Thanks for the info and advice everyone! I thought I'd get that answer! Though I was really hoping to NOT have to run the full genetic screening as I'm expecting it'll cost us plenty of $$$ and we're currently in debt up to our nostrils from medical bills for our second daughter's hospital stays, procedures, consultations, etc... all BEFORE Celiac Disease was finally discovered... and then 3 more Celiac panels and intestinal biopsies to diagnose 3 more family members, all while we had shabby insurance. ...Sigh... But what can ya do? I can't ignore the possibilities. I'm going to talk with the person over the CFF here for another opinion and our Pedi too and see if we can go forward with genetic testing. Ugh.. it is never ending with us! <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

mom4holly

New member
If your insurance will not pay for the genetics testing email Steve & ask about the cash pay program for the genetic screening. I think, if I remember correctly you can pay 50% when the sample is sent in & then the other 50% when the results are back. It typically takes 6 weeks to get the results back normally so that might help.

You can also ask your doc to try to get authorization through the insurance for them to possibly pay a percentage of the cost of the test atleast.

Good luck.
 
M

mom4holly

New member
If your insurance will not pay for the genetics testing email Steve & ask about the cash pay program for the genetic screening. I think, if I remember correctly you can pay 50% when the sample is sent in & then the other 50% when the results are back. It typically takes 6 weeks to get the results back normally so that might help.

You can also ask your doc to try to get authorization through the insurance for them to possibly pay a percentage of the cost of the test atleast.

Good luck.
 
M

mom4holly

New member
If your insurance will not pay for the genetics testing email Steve & ask about the cash pay program for the genetic screening. I think, if I remember correctly you can pay 50% when the sample is sent in & then the other 50% when the results are back. It typically takes 6 weeks to get the results back normally so that might help.

You can also ask your doc to try to get authorization through the insurance for them to possibly pay a percentage of the cost of the test atleast.

Good luck.
 
M

mom4holly

New member
If your insurance will not pay for the genetics testing email Steve & ask about the cash pay program for the genetic screening. I think, if I remember correctly you can pay 50% when the sample is sent in & then the other 50% when the results are back. It typically takes 6 weeks to get the results back normally so that might help.

You can also ask your doc to try to get authorization through the insurance for them to possibly pay a percentage of the cost of the test atleast.

Good luck.
 
M

mom4holly

New member
If your insurance will not pay for the genetics testing email Steve & ask about the cash pay program for the genetic screening. I think, if I remember correctly you can pay 50% when the sample is sent in & then the other 50% when the results are back. It typically takes 6 weeks to get the results back normally so that might help.

You can also ask your doc to try to get authorization through the insurance for them to possibly pay a percentage of the cost of the test atleast.

Good luck.
 
A

AlexsMom

New member
I am looking for opinions/responses regarding the post here concerning the low sweat values of 4 & 7 and still postive for CF in genetic testing-were those inadequate newborn sweat tests? If not, -does this throw out the "never heard of someone w/single-digit sweats testing positive thru genetics?"- Should everyone refuse a sweat test and demand genetic testing? My daughter is still very ill and it's not her immune system as they thought it was-they(doctors) are pushing me towards neurology-We have an appt.in Nov.-bowels still very oily/ I just called GI doctor back to requst fecal fat test again-they took one sample and it was the day after her upper GI w/barium- I want another test-still coughing up mucous after brthing trtmnts.daily- 17 months old now-pediatrician has ordered CT scan of sinuses next week-She(the doc.) asked ME about one of those vests? That's how crazy this is! I voiced my concern again about Cf, and she basically said she can present her case w/the qualifying criteria-I feel like at this point the pulmonologist will never request the Ambry after he has so strongly stated this is not cf. The one comfort I have had when I go to bed at nite is -it's not Cf- her sweats were too low- Not because of the disease itself, but because if my daughter did have cf-she's not recv'ng adequate care and treatmnt. Thoughts, comments, please......
 
A

AlexsMom

New member
I am looking for opinions/responses regarding the post here concerning the low sweat values of 4 & 7 and still postive for CF in genetic testing-were those inadequate newborn sweat tests? If not, -does this throw out the "never heard of someone w/single-digit sweats testing positive thru genetics?"- Should everyone refuse a sweat test and demand genetic testing? My daughter is still very ill and it's not her immune system as they thought it was-they(doctors) are pushing me towards neurology-We have an appt.in Nov.-bowels still very oily/ I just called GI doctor back to requst fecal fat test again-they took one sample and it was the day after her upper GI w/barium- I want another test-still coughing up mucous after brthing trtmnts.daily- 17 months old now-pediatrician has ordered CT scan of sinuses next week-She(the doc.) asked ME about one of those vests? That's how crazy this is! I voiced my concern again about Cf, and she basically said she can present her case w/the qualifying criteria-I feel like at this point the pulmonologist will never request the Ambry after he has so strongly stated this is not cf. The one comfort I have had when I go to bed at nite is -it's not Cf- her sweats were too low- Not because of the disease itself, but because if my daughter did have cf-she's not recv'ng adequate care and treatmnt. Thoughts, comments, please......
 
A

AlexsMom

New member
I am looking for opinions/responses regarding the post here concerning the low sweat values of 4 & 7 and still postive for CF in genetic testing-were those inadequate newborn sweat tests? If not, -does this throw out the "never heard of someone w/single-digit sweats testing positive thru genetics?"- Should everyone refuse a sweat test and demand genetic testing? My daughter is still very ill and it's not her immune system as they thought it was-they(doctors) are pushing me towards neurology-We have an appt.in Nov.-bowels still very oily/ I just called GI doctor back to requst fecal fat test again-they took one sample and it was the day after her upper GI w/barium- I want another test-still coughing up mucous after brthing trtmnts.daily- 17 months old now-pediatrician has ordered CT scan of sinuses next week-She(the doc.) asked ME about one of those vests? That's how crazy this is! I voiced my concern again about Cf, and she basically said she can present her case w/the qualifying criteria-I feel like at this point the pulmonologist will never request the Ambry after he has so strongly stated this is not cf. The one comfort I have had when I go to bed at nite is -it's not Cf- her sweats were too low- Not because of the disease itself, but because if my daughter did have cf-she's not recv'ng adequate care and treatmnt. Thoughts, comments, please......
 
A

AlexsMom

New member
I am looking for opinions/responses regarding the post here concerning the low sweat values of 4 & 7 and still postive for CF in genetic testing-were those inadequate newborn sweat tests? If not, -does this throw out the "never heard of someone w/single-digit sweats testing positive thru genetics?"- Should everyone refuse a sweat test and demand genetic testing? My daughter is still very ill and it's not her immune system as they thought it was-they(doctors) are pushing me towards neurology-We have an appt.in Nov.-bowels still very oily/ I just called GI doctor back to requst fecal fat test again-they took one sample and it was the day after her upper GI w/barium- I want another test-still coughing up mucous after brthing trtmnts.daily- 17 months old now-pediatrician has ordered CT scan of sinuses next week-She(the doc.) asked ME about one of those vests? That's how crazy this is! I voiced my concern again about Cf, and she basically said she can present her case w/the qualifying criteria-I feel like at this point the pulmonologist will never request the Ambry after he has so strongly stated this is not cf. The one comfort I have had when I go to bed at nite is -it's not Cf- her sweats were too low- Not because of the disease itself, but because if my daughter did have cf-she's not recv'ng adequate care and treatmnt. Thoughts, comments, please......
 
A

AlexsMom

New member
I am looking for opinions/responses regarding the post here concerning the low sweat values of 4 & 7 and still postive for CF in genetic testing-were those inadequate newborn sweat tests? If not, -does this throw out the "never heard of someone w/single-digit sweats testing positive thru genetics?"- Should everyone refuse a sweat test and demand genetic testing? My daughter is still very ill and it's not her immune system as they thought it was-they(doctors) are pushing me towards neurology-We have an appt.in Nov.-bowels still very oily/ I just called GI doctor back to requst fecal fat test again-they took one sample and it was the day after her upper GI w/barium- I want another test-still coughing up mucous after brthing trtmnts.daily- 17 months old now-pediatrician has ordered CT scan of sinuses next week-She(the doc.) asked ME about one of those vests? That's how crazy this is! I voiced my concern again about Cf, and she basically said she can present her case w/the qualifying criteria-I feel like at this point the pulmonologist will never request the Ambry after he has so strongly stated this is not cf. The one comfort I have had when I go to bed at nite is -it's not Cf- her sweats were too low- Not because of the disease itself, but because if my daughter did have cf-she's not recv'ng adequate care and treatmnt. Thoughts, comments, please......
 
F

fsuapril

New member
Hi alexsmom: we are still waiting the results from our Ambry amplified test, but I saw yo mentioned the oily stools... my son is pancreatic insuffiecient, even if they find no genetic CF mutations, he still has the pancreas issues....he is now on the pancreatic enzymes and MAN DOES IT HELP!!! he is still not perfect, we will probably have to change doses soon, but he has had the fecal fat test and it showed he is near the severe stage. Also if you are interested in having any Ambry testing you do not have to ask just your pulm Dr..although it would be nice if they would order and not have to go around them to get it, you can ask the Peds Dr to order....all you have to do is go on Ambry's website and find out what the lab will need to send it to Ambry. My son's sweat test cacme back 9 and 11. Our gastro is still not convinced that the test was a good one....since he was in constant screaming motion the whole time the medicated disks were on him, plus i read somewhere if a child is malnurished it can make the test not as accurate. Well My son was VERY undernurished, every bit of food he was eatting was coming right back out the way it went in...on hte enzymes now i wonder if he would have a different outcome....Good Luck
 
F

fsuapril

New member
Hi alexsmom: we are still waiting the results from our Ambry amplified test, but I saw yo mentioned the oily stools... my son is pancreatic insuffiecient, even if they find no genetic CF mutations, he still has the pancreas issues....he is now on the pancreatic enzymes and MAN DOES IT HELP!!! he is still not perfect, we will probably have to change doses soon, but he has had the fecal fat test and it showed he is near the severe stage. Also if you are interested in having any Ambry testing you do not have to ask just your pulm Dr..although it would be nice if they would order and not have to go around them to get it, you can ask the Peds Dr to order....all you have to do is go on Ambry's website and find out what the lab will need to send it to Ambry. My son's sweat test cacme back 9 and 11. Our gastro is still not convinced that the test was a good one....since he was in constant screaming motion the whole time the medicated disks were on him, plus i read somewhere if a child is malnurished it can make the test not as accurate. Well My son was VERY undernurished, every bit of food he was eatting was coming right back out the way it went in...on hte enzymes now i wonder if he would have a different outcome....Good Luck
 
F

fsuapril

New member
Hi alexsmom: we are still waiting the results from our Ambry amplified test, but I saw yo mentioned the oily stools... my son is pancreatic insuffiecient, even if they find no genetic CF mutations, he still has the pancreas issues....he is now on the pancreatic enzymes and MAN DOES IT HELP!!! he is still not perfect, we will probably have to change doses soon, but he has had the fecal fat test and it showed he is near the severe stage. Also if you are interested in having any Ambry testing you do not have to ask just your pulm Dr..although it would be nice if they would order and not have to go around them to get it, you can ask the Peds Dr to order....all you have to do is go on Ambry's website and find out what the lab will need to send it to Ambry. My son's sweat test cacme back 9 and 11. Our gastro is still not convinced that the test was a good one....since he was in constant screaming motion the whole time the medicated disks were on him, plus i read somewhere if a child is malnurished it can make the test not as accurate. Well My son was VERY undernurished, every bit of food he was eatting was coming right back out the way it went in...on hte enzymes now i wonder if he would have a different outcome....Good Luck
 
F

fsuapril

New member
Hi alexsmom: we are still waiting the results from our Ambry amplified test, but I saw yo mentioned the oily stools... my son is pancreatic insuffiecient, even if they find no genetic CF mutations, he still has the pancreas issues....he is now on the pancreatic enzymes and MAN DOES IT HELP!!! he is still not perfect, we will probably have to change doses soon, but he has had the fecal fat test and it showed he is near the severe stage. Also if you are interested in having any Ambry testing you do not have to ask just your pulm Dr..although it would be nice if they would order and not have to go around them to get it, you can ask the Peds Dr to order....all you have to do is go on Ambry's website and find out what the lab will need to send it to Ambry. My son's sweat test cacme back 9 and 11. Our gastro is still not convinced that the test was a good one....since he was in constant screaming motion the whole time the medicated disks were on him, plus i read somewhere if a child is malnurished it can make the test not as accurate. Well My son was VERY undernurished, every bit of food he was eatting was coming right back out the way it went in...on hte enzymes now i wonder if he would have a different outcome....Good Luck
 
F

fsuapril

New member
Hi alexsmom: we are still waiting the results from our Ambry amplified test, but I saw yo mentioned the oily stools... my son is pancreatic insuffiecient, even if they find no genetic CF mutations, he still has the pancreas issues....he is now on the pancreatic enzymes and MAN DOES IT HELP!!! he is still not perfect, we will probably have to change doses soon, but he has had the fecal fat test and it showed he is near the severe stage. Also if you are interested in having any Ambry testing you do not have to ask just your pulm Dr..although it would be nice if they would order and not have to go around them to get it, you can ask the Peds Dr to order....all you have to do is go on Ambry's website and find out what the lab will need to send it to Ambry. My son's sweat test cacme back 9 and 11. Our gastro is still not convinced that the test was a good one....since he was in constant screaming motion the whole time the medicated disks were on him, plus i read somewhere if a child is malnurished it can make the test not as accurate. Well My son was VERY undernurished, every bit of food he was eatting was coming right back out the way it went in...on hte enzymes now i wonder if he would have a different outcome....Good Luck
 
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