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Looking for Advice
- Thread starter JoKa
- Start date
I know advice about the sweat test may be confusing, especially when that is all that the medical community seems to know about! The sweat test <i>can</i> result in a CF dignosis. In that regard, I don't consider them a waste of time. I don't know the statistics about false negatives where the patient does indeed turn out to have CF.
False <i>positives</i> are linked to a couple other rare diseases/situations that I can't remember at this time.
I just wanted to try to explain that many on here get impatient with the sweat test because they worry that a false <i>negative</i> will prevent doctors and/or parents from continuing to pursue a CF diagnosis, even though a child still has symptoms. Many of us have been down the "you are crazy, your child is not sick" path.
The sweat test can be difficult to administer and that is one of the reasons for false negatives. A full genetic screening is the best way to determine CF.
Sometimes it is hard enough to fight to get the sweat test done, much less genetic testing. So I would just say that if the sweat test is negative yet you are still concerned about your child's health, by all means pursue genetic testing. Good luck!
False <i>positives</i> are linked to a couple other rare diseases/situations that I can't remember at this time.
I just wanted to try to explain that many on here get impatient with the sweat test because they worry that a false <i>negative</i> will prevent doctors and/or parents from continuing to pursue a CF diagnosis, even though a child still has symptoms. Many of us have been down the "you are crazy, your child is not sick" path.
The sweat test can be difficult to administer and that is one of the reasons for false negatives. A full genetic screening is the best way to determine CF.
Sometimes it is hard enough to fight to get the sweat test done, much less genetic testing. So I would just say that if the sweat test is negative yet you are still concerned about your child's health, by all means pursue genetic testing. Good luck!
I know advice about the sweat test may be confusing, especially when that is all that the medical community seems to know about! The sweat test <i>can</i> result in a CF dignosis. In that regard, I don't consider them a waste of time. I don't know the statistics about false negatives where the patient does indeed turn out to have CF.
False <i>positives</i> are linked to a couple other rare diseases/situations that I can't remember at this time.
I just wanted to try to explain that many on here get impatient with the sweat test because they worry that a false <i>negative</i> will prevent doctors and/or parents from continuing to pursue a CF diagnosis, even though a child still has symptoms. Many of us have been down the "you are crazy, your child is not sick" path.
The sweat test can be difficult to administer and that is one of the reasons for false negatives. A full genetic screening is the best way to determine CF.
Sometimes it is hard enough to fight to get the sweat test done, much less genetic testing. So I would just say that if the sweat test is negative yet you are still concerned about your child's health, by all means pursue genetic testing. Good luck!
False <i>positives</i> are linked to a couple other rare diseases/situations that I can't remember at this time.
I just wanted to try to explain that many on here get impatient with the sweat test because they worry that a false <i>negative</i> will prevent doctors and/or parents from continuing to pursue a CF diagnosis, even though a child still has symptoms. Many of us have been down the "you are crazy, your child is not sick" path.
The sweat test can be difficult to administer and that is one of the reasons for false negatives. A full genetic screening is the best way to determine CF.
Sometimes it is hard enough to fight to get the sweat test done, much less genetic testing. So I would just say that if the sweat test is negative yet you are still concerned about your child's health, by all means pursue genetic testing. Good luck!
I know advice about the sweat test may be confusing, especially when that is all that the medical community seems to know about! The sweat test <i>can</i> result in a CF dignosis. In that regard, I don't consider them a waste of time. I don't know the statistics about false negatives where the patient does indeed turn out to have CF.
False <i>positives</i> are linked to a couple other rare diseases/situations that I can't remember at this time.
I just wanted to try to explain that many on here get impatient with the sweat test because they worry that a false <i>negative</i> will prevent doctors and/or parents from continuing to pursue a CF diagnosis, even though a child still has symptoms. Many of us have been down the "you are crazy, your child is not sick" path.
The sweat test can be difficult to administer and that is one of the reasons for false negatives. A full genetic screening is the best way to determine CF.
Sometimes it is hard enough to fight to get the sweat test done, much less genetic testing. So I would just say that if the sweat test is negative yet you are still concerned about your child's health, by all means pursue genetic testing. Good luck!
False <i>positives</i> are linked to a couple other rare diseases/situations that I can't remember at this time.
I just wanted to try to explain that many on here get impatient with the sweat test because they worry that a false <i>negative</i> will prevent doctors and/or parents from continuing to pursue a CF diagnosis, even though a child still has symptoms. Many of us have been down the "you are crazy, your child is not sick" path.
The sweat test can be difficult to administer and that is one of the reasons for false negatives. A full genetic screening is the best way to determine CF.
Sometimes it is hard enough to fight to get the sweat test done, much less genetic testing. So I would just say that if the sweat test is negative yet you are still concerned about your child's health, by all means pursue genetic testing. Good luck!
I know advice about the sweat test may be confusing, especially when that is all that the medical community seems to know about! The sweat test <i>can</i> result in a CF dignosis. In that regard, I don't consider them a waste of time. I don't know the statistics about false negatives where the patient does indeed turn out to have CF.
False <i>positives</i> are linked to a couple other rare diseases/situations that I can't remember at this time.
I just wanted to try to explain that many on here get impatient with the sweat test because they worry that a false <i>negative</i> will prevent doctors and/or parents from continuing to pursue a CF diagnosis, even though a child still has symptoms. Many of us have been down the "you are crazy, your child is not sick" path.
The sweat test can be difficult to administer and that is one of the reasons for false negatives. A full genetic screening is the best way to determine CF.
Sometimes it is hard enough to fight to get the sweat test done, much less genetic testing. So I would just say that if the sweat test is negative yet you are still concerned about your child's health, by all means pursue genetic testing. Good luck!
False <i>positives</i> are linked to a couple other rare diseases/situations that I can't remember at this time.
I just wanted to try to explain that many on here get impatient with the sweat test because they worry that a false <i>negative</i> will prevent doctors and/or parents from continuing to pursue a CF diagnosis, even though a child still has symptoms. Many of us have been down the "you are crazy, your child is not sick" path.
The sweat test can be difficult to administer and that is one of the reasons for false negatives. A full genetic screening is the best way to determine CF.
Sometimes it is hard enough to fight to get the sweat test done, much less genetic testing. So I would just say that if the sweat test is negative yet you are still concerned about your child's health, by all means pursue genetic testing. Good luck!
I know advice about the sweat test may be confusing, especially when that is all that the medical community seems to know about! The sweat test <i>can</i> result in a CF dignosis. In that regard, I don't consider them a waste of time. I don't know the statistics about false negatives where the patient does indeed turn out to have CF.
<br />
<br />False <i>positives</i> are linked to a couple other rare diseases/situations that I can't remember at this time.
<br />
<br />I just wanted to try to explain that many on here get impatient with the sweat test because they worry that a false <i>negative</i> will prevent doctors and/or parents from continuing to pursue a CF diagnosis, even though a child still has symptoms. Many of us have been down the "you are crazy, your child is not sick" path.
<br />
<br />The sweat test can be difficult to administer and that is one of the reasons for false negatives. A full genetic screening is the best way to determine CF.
<br />
<br />Sometimes it is hard enough to fight to get the sweat test done, much less genetic testing. So I would just say that if the sweat test is negative yet you are still concerned about your child's health, by all means pursue genetic testing. Good luck!
<br />
<br />False <i>positives</i> are linked to a couple other rare diseases/situations that I can't remember at this time.
<br />
<br />I just wanted to try to explain that many on here get impatient with the sweat test because they worry that a false <i>negative</i> will prevent doctors and/or parents from continuing to pursue a CF diagnosis, even though a child still has symptoms. Many of us have been down the "you are crazy, your child is not sick" path.
<br />
<br />The sweat test can be difficult to administer and that is one of the reasons for false negatives. A full genetic screening is the best way to determine CF.
<br />
<br />Sometimes it is hard enough to fight to get the sweat test done, much less genetic testing. So I would just say that if the sweat test is negative yet you are still concerned about your child's health, by all means pursue genetic testing. Good luck!
MeganMartinez
New member
Hey Emily,
I am new to the site. I have an 8 month old Gracie diagnosed at new born screening in NJ, a son Mike age 8 with no cf, and newly diagnosed 10 yr old daughter Caitlin. I see that you have the similar mutations as we do. My husband has the DF508 and I have the r117h 5t. My question is do you know of anywhere I could get more info on the different gene mutations? Like which ones are more common than others and so forth. Hope your family is well and thanks for sharing
I am new to the site. I have an 8 month old Gracie diagnosed at new born screening in NJ, a son Mike age 8 with no cf, and newly diagnosed 10 yr old daughter Caitlin. I see that you have the similar mutations as we do. My husband has the DF508 and I have the r117h 5t. My question is do you know of anywhere I could get more info on the different gene mutations? Like which ones are more common than others and so forth. Hope your family is well and thanks for sharing
MeganMartinez
New member
Hey Emily,
I am new to the site. I have an 8 month old Gracie diagnosed at new born screening in NJ, a son Mike age 8 with no cf, and newly diagnosed 10 yr old daughter Caitlin. I see that you have the similar mutations as we do. My husband has the DF508 and I have the r117h 5t. My question is do you know of anywhere I could get more info on the different gene mutations? Like which ones are more common than others and so forth. Hope your family is well and thanks for sharing
I am new to the site. I have an 8 month old Gracie diagnosed at new born screening in NJ, a son Mike age 8 with no cf, and newly diagnosed 10 yr old daughter Caitlin. I see that you have the similar mutations as we do. My husband has the DF508 and I have the r117h 5t. My question is do you know of anywhere I could get more info on the different gene mutations? Like which ones are more common than others and so forth. Hope your family is well and thanks for sharing
MeganMartinez
New member
Hey Emily,
I am new to the site. I have an 8 month old Gracie diagnosed at new born screening in NJ, a son Mike age 8 with no cf, and newly diagnosed 10 yr old daughter Caitlin. I see that you have the similar mutations as we do. My husband has the DF508 and I have the r117h 5t. My question is do you know of anywhere I could get more info on the different gene mutations? Like which ones are more common than others and so forth. Hope your family is well and thanks for sharing
I am new to the site. I have an 8 month old Gracie diagnosed at new born screening in NJ, a son Mike age 8 with no cf, and newly diagnosed 10 yr old daughter Caitlin. I see that you have the similar mutations as we do. My husband has the DF508 and I have the r117h 5t. My question is do you know of anywhere I could get more info on the different gene mutations? Like which ones are more common than others and so forth. Hope your family is well and thanks for sharing
MeganMartinez
New member
Hey Emily,
I am new to the site. I have an 8 month old Gracie diagnosed at new born screening in NJ, a son Mike age 8 with no cf, and newly diagnosed 10 yr old daughter Caitlin. I see that you have the similar mutations as we do. My husband has the DF508 and I have the r117h 5t. My question is do you know of anywhere I could get more info on the different gene mutations? Like which ones are more common than others and so forth. Hope your family is well and thanks for sharing
I am new to the site. I have an 8 month old Gracie diagnosed at new born screening in NJ, a son Mike age 8 with no cf, and newly diagnosed 10 yr old daughter Caitlin. I see that you have the similar mutations as we do. My husband has the DF508 and I have the r117h 5t. My question is do you know of anywhere I could get more info on the different gene mutations? Like which ones are more common than others and so forth. Hope your family is well and thanks for sharing
MeganMartinez
New member
Hey Emily,
<br /> I am new to the site. I have an 8 month old Gracie diagnosed at new born screening in NJ, a son Mike age 8 with no cf, and newly diagnosed 10 yr old daughter Caitlin. I see that you have the similar mutations as we do. My husband has the DF508 and I have the r117h 5t. My question is do you know of anywhere I could get more info on the different gene mutations? Like which ones are more common than others and so forth. Hope your family is well and thanks for sharing
<br /> I am new to the site. I have an 8 month old Gracie diagnosed at new born screening in NJ, a son Mike age 8 with no cf, and newly diagnosed 10 yr old daughter Caitlin. I see that you have the similar mutations as we do. My husband has the DF508 and I have the r117h 5t. My question is do you know of anywhere I could get more info on the different gene mutations? Like which ones are more common than others and so forth. Hope your family is well and thanks for sharing