thelizardqueen
New member
There is a such thing as a false negative, but not a false positive. If I were you, for peace of mind I would get the dna test done as well. Its more accurate.
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Sweat Test mix up
- Thread starter mom4holly
- Start date
Is this an accredited CF clinic doing the sweat test? If not, I would ask to be referred to one. I was told by our first doctors (which were at a world renowned hospital system) that they can do them at their facility but they always just send cases to the other major hospital system because of the CF Clinic there. They do more and have more experience. Inadequate samples is a huge issue for infants as it is difficult to make them sweat. I believe a few moms on here had children who never had a positive sweat test and still were diagnosed via DNA testing. It can be tricky. It took over 4 times to get one for our son and it was in the hospital when he was very ill from malnutrition (he is pancreatic insufficient).
How old is you child again? Has your child been allergy tested? There is a test called a RAST test which tests for major allergens such as milk, wheat ect. You could place her/him (or yourself if breastfeeding) on an allergry free diet for a while and see what happens to her lung symptoms. Removing all dairy, wheat, eggs, nuts, soy, and corn products and then slowly adding them back after a period of 2-3 weeks, one by one can help to determine if she/he has an allergy and to which food. Not familiar with formula much, but there are some allergy free - dairy/soy free ones available (though costly). It might be worth it.
How old is you child again? Has your child been allergy tested? There is a test called a RAST test which tests for major allergens such as milk, wheat ect. You could place her/him (or yourself if breastfeeding) on an allergry free diet for a while and see what happens to her lung symptoms. Removing all dairy, wheat, eggs, nuts, soy, and corn products and then slowly adding them back after a period of 2-3 weeks, one by one can help to determine if she/he has an allergy and to which food. Not familiar with formula much, but there are some allergy free - dairy/soy free ones available (though costly). It might be worth it.
Is this an accredited CF clinic doing the sweat test? If not, I would ask to be referred to one. I was told by our first doctors (which were at a world renowned hospital system) that they can do them at their facility but they always just send cases to the other major hospital system because of the CF Clinic there. They do more and have more experience. Inadequate samples is a huge issue for infants as it is difficult to make them sweat. I believe a few moms on here had children who never had a positive sweat test and still were diagnosed via DNA testing. It can be tricky. It took over 4 times to get one for our son and it was in the hospital when he was very ill from malnutrition (he is pancreatic insufficient).
How old is you child again? Has your child been allergy tested? There is a test called a RAST test which tests for major allergens such as milk, wheat ect. You could place her/him (or yourself if breastfeeding) on an allergry free diet for a while and see what happens to her lung symptoms. Removing all dairy, wheat, eggs, nuts, soy, and corn products and then slowly adding them back after a period of 2-3 weeks, one by one can help to determine if she/he has an allergy and to which food. Not familiar with formula much, but there are some allergy free - dairy/soy free ones available (though costly). It might be worth it.
How old is you child again? Has your child been allergy tested? There is a test called a RAST test which tests for major allergens such as milk, wheat ect. You could place her/him (or yourself if breastfeeding) on an allergry free diet for a while and see what happens to her lung symptoms. Removing all dairy, wheat, eggs, nuts, soy, and corn products and then slowly adding them back after a period of 2-3 weeks, one by one can help to determine if she/he has an allergy and to which food. Not familiar with formula much, but there are some allergy free - dairy/soy free ones available (though costly). It might be worth it.
Is this an accredited CF clinic doing the sweat test? If not, I would ask to be referred to one. I was told by our first doctors (which were at a world renowned hospital system) that they can do them at their facility but they always just send cases to the other major hospital system because of the CF Clinic there. They do more and have more experience. Inadequate samples is a huge issue for infants as it is difficult to make them sweat. I believe a few moms on here had children who never had a positive sweat test and still were diagnosed via DNA testing. It can be tricky. It took over 4 times to get one for our son and it was in the hospital when he was very ill from malnutrition (he is pancreatic insufficient).
How old is you child again? Has your child been allergy tested? There is a test called a RAST test which tests for major allergens such as milk, wheat ect. You could place her/him (or yourself if breastfeeding) on an allergry free diet for a while and see what happens to her lung symptoms. Removing all dairy, wheat, eggs, nuts, soy, and corn products and then slowly adding them back after a period of 2-3 weeks, one by one can help to determine if she/he has an allergy and to which food. Not familiar with formula much, but there are some allergy free - dairy/soy free ones available (though costly). It might be worth it.
How old is you child again? Has your child been allergy tested? There is a test called a RAST test which tests for major allergens such as milk, wheat ect. You could place her/him (or yourself if breastfeeding) on an allergry free diet for a while and see what happens to her lung symptoms. Removing all dairy, wheat, eggs, nuts, soy, and corn products and then slowly adding them back after a period of 2-3 weeks, one by one can help to determine if she/he has an allergy and to which food. Not familiar with formula much, but there are some allergy free - dairy/soy free ones available (though costly). It might be worth it.
Holly is 4 years old. This all started when she was an infant with a sinus infection then asthma then a cough that would just not go away, then a cough that was there 24/7 and it even makes her vomit mucus sometimes.
I had a problem with my second pregnancy that my doctor did genetic testing for and I know that I am a carrier. I am going to get the genetic testing done to make sure that my daughter does not hace CF. This is so frustrating, between fighting with my insurance to even get the sweat test done and to cover the medications she needs now I am stuck in the median.
I am being seen at the Nemours Childrens Hospital in Jacksonville, FL--how do I find out if it is accredited? They have a CF clinic there, I just assumed this meant they were accredited? Please let me know where to find an accredited center. Do I have to have a referral to go there? My insurance does not require a referral to see a specialist but is this something the center requires?
I had a problem with my second pregnancy that my doctor did genetic testing for and I know that I am a carrier. I am going to get the genetic testing done to make sure that my daughter does not hace CF. This is so frustrating, between fighting with my insurance to even get the sweat test done and to cover the medications she needs now I am stuck in the median.
I am being seen at the Nemours Childrens Hospital in Jacksonville, FL--how do I find out if it is accredited? They have a CF clinic there, I just assumed this meant they were accredited? Please let me know where to find an accredited center. Do I have to have a referral to go there? My insurance does not require a referral to see a specialist but is this something the center requires?
Holly is 4 years old. This all started when she was an infant with a sinus infection then asthma then a cough that would just not go away, then a cough that was there 24/7 and it even makes her vomit mucus sometimes.
I had a problem with my second pregnancy that my doctor did genetic testing for and I know that I am a carrier. I am going to get the genetic testing done to make sure that my daughter does not hace CF. This is so frustrating, between fighting with my insurance to even get the sweat test done and to cover the medications she needs now I am stuck in the median.
I am being seen at the Nemours Childrens Hospital in Jacksonville, FL--how do I find out if it is accredited? They have a CF clinic there, I just assumed this meant they were accredited? Please let me know where to find an accredited center. Do I have to have a referral to go there? My insurance does not require a referral to see a specialist but is this something the center requires?
I had a problem with my second pregnancy that my doctor did genetic testing for and I know that I am a carrier. I am going to get the genetic testing done to make sure that my daughter does not hace CF. This is so frustrating, between fighting with my insurance to even get the sweat test done and to cover the medications she needs now I am stuck in the median.
I am being seen at the Nemours Childrens Hospital in Jacksonville, FL--how do I find out if it is accredited? They have a CF clinic there, I just assumed this meant they were accredited? Please let me know where to find an accredited center. Do I have to have a referral to go there? My insurance does not require a referral to see a specialist but is this something the center requires?
Holly is 4 years old. This all started when she was an infant with a sinus infection then asthma then a cough that would just not go away, then a cough that was there 24/7 and it even makes her vomit mucus sometimes.
I had a problem with my second pregnancy that my doctor did genetic testing for and I know that I am a carrier. I am going to get the genetic testing done to make sure that my daughter does not hace CF. This is so frustrating, between fighting with my insurance to even get the sweat test done and to cover the medications she needs now I am stuck in the median.
I am being seen at the Nemours Childrens Hospital in Jacksonville, FL--how do I find out if it is accredited? They have a CF clinic there, I just assumed this meant they were accredited? Please let me know where to find an accredited center. Do I have to have a referral to go there? My insurance does not require a referral to see a specialist but is this something the center requires?
I had a problem with my second pregnancy that my doctor did genetic testing for and I know that I am a carrier. I am going to get the genetic testing done to make sure that my daughter does not hace CF. This is so frustrating, between fighting with my insurance to even get the sweat test done and to cover the medications she needs now I am stuck in the median.
I am being seen at the Nemours Childrens Hospital in Jacksonville, FL--how do I find out if it is accredited? They have a CF clinic there, I just assumed this meant they were accredited? Please let me know where to find an accredited center. Do I have to have a referral to go there? My insurance does not require a referral to see a specialist but is this something the center requires?
Faith4Liliana
New member
I take Liliana to Nemours in jacksonville and I haven't had a plm with them. They did her sweat test and everything. We haven't gotten the dna test done because they are having a hard time getting enough blood from her. Have you taked to anyone there about it? Are they the ones who did the testing?
Faith4Liliana
New member
I take Liliana to Nemours in jacksonville and I haven't had a plm with them. They did her sweat test and everything. We haven't gotten the dna test done because they are having a hard time getting enough blood from her. Have you taked to anyone there about it? Are they the ones who did the testing?
Faith4Liliana
New member
I take Liliana to Nemours in jacksonville and I haven't had a plm with them. They did her sweat test and everything. We haven't gotten the dna test done because they are having a hard time getting enough blood from her. Have you taked to anyone there about it? Are they the ones who did the testing?
It's not that I have had a problem and I understand the mix up-they had several test and were backed up that day, I see Dr. Schaefter, is this also who you see or is it the other dr's? They are the ones who did the testing and they have been great, besides this little mix up. I guess I am just concerned as to where to go from here.
I have spoken to them and am still going to do the genetic test because I want to be absolutely positive that she does not have it so we can figure out what IS going on with her. It might just be asthma as the other dr's have stated--hopefully this is what it is.
Thank you all.
I have spoken to them and am still going to do the genetic test because I want to be absolutely positive that she does not have it so we can figure out what IS going on with her. It might just be asthma as the other dr's have stated--hopefully this is what it is.
Thank you all.
It's not that I have had a problem and I understand the mix up-they had several test and were backed up that day, I see Dr. Schaefter, is this also who you see or is it the other dr's? They are the ones who did the testing and they have been great, besides this little mix up. I guess I am just concerned as to where to go from here.
I have spoken to them and am still going to do the genetic test because I want to be absolutely positive that she does not have it so we can figure out what IS going on with her. It might just be asthma as the other dr's have stated--hopefully this is what it is.
Thank you all.
I have spoken to them and am still going to do the genetic test because I want to be absolutely positive that she does not have it so we can figure out what IS going on with her. It might just be asthma as the other dr's have stated--hopefully this is what it is.
Thank you all.
It's not that I have had a problem and I understand the mix up-they had several test and were backed up that day, I see Dr. Schaefter, is this also who you see or is it the other dr's? They are the ones who did the testing and they have been great, besides this little mix up. I guess I am just concerned as to where to go from here.
I have spoken to them and am still going to do the genetic test because I want to be absolutely positive that she does not have it so we can figure out what IS going on with her. It might just be asthma as the other dr's have stated--hopefully this is what it is.
Thank you all.
I have spoken to them and am still going to do the genetic test because I want to be absolutely positive that she does not have it so we can figure out what IS going on with her. It might just be asthma as the other dr's have stated--hopefully this is what it is.
Thank you all.
Can you post on here the excerpt from your insurance comanies coverage where it discusses the exclusion of coverage for genetic tests? Or email me? division902@hotmail.com I'd like to try and help you out with this, I'm a stickler for finding loopholes where none seem to exist.
Have you had them (the dr's office) seed in a pre-authorization for the genetic testing? I KNOW there is research/iterature/case studies on people who have "normal" sweat test levels and therefore it is assumed they dont' have CF. But then they have genetic testing doen and viola, they have 2 CF mutations. I'll try to see if I can find any of these and <b>maybe some other board members who are better at this type of research can help find them too</b> because it's more ammunition to send into your insurance company and say "see, this is WHY you need to cover it".
Also, how is it that for your pregnancy you were able to get genetically tested? Was it a different insurance?
Have you had them (the dr's office) seed in a pre-authorization for the genetic testing? I KNOW there is research/iterature/case studies on people who have "normal" sweat test levels and therefore it is assumed they dont' have CF. But then they have genetic testing doen and viola, they have 2 CF mutations. I'll try to see if I can find any of these and <b>maybe some other board members who are better at this type of research can help find them too</b> because it's more ammunition to send into your insurance company and say "see, this is WHY you need to cover it".
Also, how is it that for your pregnancy you were able to get genetically tested? Was it a different insurance?
Can you post on here the excerpt from your insurance comanies coverage where it discusses the exclusion of coverage for genetic tests? Or email me? division902@hotmail.com I'd like to try and help you out with this, I'm a stickler for finding loopholes where none seem to exist.
Have you had them (the dr's office) seed in a pre-authorization for the genetic testing? I KNOW there is research/iterature/case studies on people who have "normal" sweat test levels and therefore it is assumed they dont' have CF. But then they have genetic testing doen and viola, they have 2 CF mutations. I'll try to see if I can find any of these and <b>maybe some other board members who are better at this type of research can help find them too</b> because it's more ammunition to send into your insurance company and say "see, this is WHY you need to cover it".
Also, how is it that for your pregnancy you were able to get genetically tested? Was it a different insurance?
Have you had them (the dr's office) seed in a pre-authorization for the genetic testing? I KNOW there is research/iterature/case studies on people who have "normal" sweat test levels and therefore it is assumed they dont' have CF. But then they have genetic testing doen and viola, they have 2 CF mutations. I'll try to see if I can find any of these and <b>maybe some other board members who are better at this type of research can help find them too</b> because it's more ammunition to send into your insurance company and say "see, this is WHY you need to cover it".
Also, how is it that for your pregnancy you were able to get genetically tested? Was it a different insurance?
Can you post on here the excerpt from your insurance comanies coverage where it discusses the exclusion of coverage for genetic tests? Or email me? division902@hotmail.com I'd like to try and help you out with this, I'm a stickler for finding loopholes where none seem to exist.
Have you had them (the dr's office) seed in a pre-authorization for the genetic testing? I KNOW there is research/iterature/case studies on people who have "normal" sweat test levels and therefore it is assumed they dont' have CF. But then they have genetic testing doen and viola, they have 2 CF mutations. I'll try to see if I can find any of these and <b>maybe some other board members who are better at this type of research can help find them too</b> because it's more ammunition to send into your insurance company and say "see, this is WHY you need to cover it".
Also, how is it that for your pregnancy you were able to get genetically tested? Was it a different insurance?
Have you had them (the dr's office) seed in a pre-authorization for the genetic testing? I KNOW there is research/iterature/case studies on people who have "normal" sweat test levels and therefore it is assumed they dont' have CF. But then they have genetic testing doen and viola, they have 2 CF mutations. I'll try to see if I can find any of these and <b>maybe some other board members who are better at this type of research can help find them too</b> because it's more ammunition to send into your insurance company and say "see, this is WHY you need to cover it".
Also, how is it that for your pregnancy you were able to get genetically tested? Was it a different insurance?