Stacey, thank you. My daughter has had no growth problems at all. She has never had an ear infection, ironically, until now, at least I think. She just started complaining about it and we haven't made it to the doc yet. I keep reading about the Ambry. Can I request it if her sweat test is neg and does insurance usually cover it? How long will it take and who does them? Waiting is driving me nuts! I appreciate all of your help. T
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Daughter is 12, might have cf... Advice?
- Thread starter cbcmom
- Start date
Stacey, thank you. My daughter has had no growth problems at all. She has never had an ear infection, ironically, until now, at least I think. She just started complaining about it and we haven't made it to the doc yet. I keep reading about the Ambry. Can I request it if her sweat test is neg and does insurance usually cover it? How long will it take and who does them? Waiting is driving me nuts! I appreciate all of your help. T
Stacey, thank you. My daughter has had no growth problems at all. She has never had an ear infection, ironically, until now, at least I think. She just started complaining about it and we haven't made it to the doc yet. I keep reading about the Ambry. Can I request it if her sweat test is neg and does insurance usually cover it? How long will it take and who does them? Waiting is driving me nuts! I appreciate all of your help. T
Stacey, thank you. My daughter has had no growth problems at all. She has never had an ear infection, ironically, until now, at least I think. She just started complaining about it and we haven't made it to the doc yet. I keep reading about the Ambry. Can I request it if her sweat test is neg and does insurance usually cover it? How long will it take and who does them? Waiting is driving me nuts! I appreciate all of your help. T
Stacey, thank you. My daughter has had no growth problems at all. She has never had an ear infection, ironically, until now, at least I think. She just started complaining about it and we haven't made it to the doc yet. I keep reading about the Ambry. Can I request it if her sweat test is neg and does insurance usually cover it? How long will it take and who does them? Waiting is driving me nuts! I appreciate all of your help. T
Don't beat yourself up to much -- you're not a doctor -- they are the one's who should have thought of it earlier, not you! But I do know what you mean -- I think about it too because we were told 38 sweat test was normal, and nobody said a genetic test was available in the early 1990's - the internet wasn't nearly as prevalent back then, so I just took their word for it that it meant we didn't have to consider CF again.
If her sweat test is in the 20'-40's yes, specifically ask for an Ambry full panel test. I have an idea if she runs anything over 40 they will automatically call for it without being prompted by you. Yes, insurance in most cases will cover the test --especially if you have a borderline or positive sweat test number. You may run into trouble if she has a very low sweat test number - and at that point you may not want to push for it, because even the Ambry guy says "single digit test results" are unlikely to be CF (find two CF genes in testing) So if you get results back of something like 7, you are probably good -- but if they come back something like 30, you might have to fight for a genetic test. But again, since you are dealing with a pulmonologist at a certified CF center, chance are he/she will be knowledgeable enough to pursue full genetic testing on any suspicious sweat test readings.
If her sweat test is in the 20'-40's yes, specifically ask for an Ambry full panel test. I have an idea if she runs anything over 40 they will automatically call for it without being prompted by you. Yes, insurance in most cases will cover the test --especially if you have a borderline or positive sweat test number. You may run into trouble if she has a very low sweat test number - and at that point you may not want to push for it, because even the Ambry guy says "single digit test results" are unlikely to be CF (find two CF genes in testing) So if you get results back of something like 7, you are probably good -- but if they come back something like 30, you might have to fight for a genetic test. But again, since you are dealing with a pulmonologist at a certified CF center, chance are he/she will be knowledgeable enough to pursue full genetic testing on any suspicious sweat test readings.
Don't beat yourself up to much -- you're not a doctor -- they are the one's who should have thought of it earlier, not you! But I do know what you mean -- I think about it too because we were told 38 sweat test was normal, and nobody said a genetic test was available in the early 1990's - the internet wasn't nearly as prevalent back then, so I just took their word for it that it meant we didn't have to consider CF again.
If her sweat test is in the 20'-40's yes, specifically ask for an Ambry full panel test. I have an idea if she runs anything over 40 they will automatically call for it without being prompted by you. Yes, insurance in most cases will cover the test --especially if you have a borderline or positive sweat test number. You may run into trouble if she has a very low sweat test number - and at that point you may not want to push for it, because even the Ambry guy says "single digit test results" are unlikely to be CF (find two CF genes in testing) So if you get results back of something like 7, you are probably good -- but if they come back something like 30, you might have to fight for a genetic test. But again, since you are dealing with a pulmonologist at a certified CF center, chance are he/she will be knowledgeable enough to pursue full genetic testing on any suspicious sweat test readings.
If her sweat test is in the 20'-40's yes, specifically ask for an Ambry full panel test. I have an idea if she runs anything over 40 they will automatically call for it without being prompted by you. Yes, insurance in most cases will cover the test --especially if you have a borderline or positive sweat test number. You may run into trouble if she has a very low sweat test number - and at that point you may not want to push for it, because even the Ambry guy says "single digit test results" are unlikely to be CF (find two CF genes in testing) So if you get results back of something like 7, you are probably good -- but if they come back something like 30, you might have to fight for a genetic test. But again, since you are dealing with a pulmonologist at a certified CF center, chance are he/she will be knowledgeable enough to pursue full genetic testing on any suspicious sweat test readings.
Don't beat yourself up to much -- you're not a doctor -- they are the one's who should have thought of it earlier, not you! But I do know what you mean -- I think about it too because we were told 38 sweat test was normal, and nobody said a genetic test was available in the early 1990's - the internet wasn't nearly as prevalent back then, so I just took their word for it that it meant we didn't have to consider CF again.
If her sweat test is in the 20'-40's yes, specifically ask for an Ambry full panel test. I have an idea if she runs anything over 40 they will automatically call for it without being prompted by you. Yes, insurance in most cases will cover the test --especially if you have a borderline or positive sweat test number. You may run into trouble if she has a very low sweat test number - and at that point you may not want to push for it, because even the Ambry guy says "single digit test results" are unlikely to be CF (find two CF genes in testing) So if you get results back of something like 7, you are probably good -- but if they come back something like 30, you might have to fight for a genetic test. But again, since you are dealing with a pulmonologist at a certified CF center, chance are he/she will be knowledgeable enough to pursue full genetic testing on any suspicious sweat test readings.
If her sweat test is in the 20'-40's yes, specifically ask for an Ambry full panel test. I have an idea if she runs anything over 40 they will automatically call for it without being prompted by you. Yes, insurance in most cases will cover the test --especially if you have a borderline or positive sweat test number. You may run into trouble if she has a very low sweat test number - and at that point you may not want to push for it, because even the Ambry guy says "single digit test results" are unlikely to be CF (find two CF genes in testing) So if you get results back of something like 7, you are probably good -- but if they come back something like 30, you might have to fight for a genetic test. But again, since you are dealing with a pulmonologist at a certified CF center, chance are he/she will be knowledgeable enough to pursue full genetic testing on any suspicious sweat test readings.
Don't beat yourself up to much -- you're not a doctor -- they are the one's who should have thought of it earlier, not you! But I do know what you mean -- I think about it too because we were told 38 sweat test was normal, and nobody said a genetic test was available in the early 1990's - the internet wasn't nearly as prevalent back then, so I just took their word for it that it meant we didn't have to consider CF again.
If her sweat test is in the 20'-40's yes, specifically ask for an Ambry full panel test. I have an idea if she runs anything over 40 they will automatically call for it without being prompted by you. Yes, insurance in most cases will cover the test --especially if you have a borderline or positive sweat test number. You may run into trouble if she has a very low sweat test number - and at that point you may not want to push for it, because even the Ambry guy says "single digit test results" are unlikely to be CF (find two CF genes in testing) So if you get results back of something like 7, you are probably good -- but if they come back something like 30, you might have to fight for a genetic test. But again, since you are dealing with a pulmonologist at a certified CF center, chance are he/she will be knowledgeable enough to pursue full genetic testing on any suspicious sweat test readings.
If her sweat test is in the 20'-40's yes, specifically ask for an Ambry full panel test. I have an idea if she runs anything over 40 they will automatically call for it without being prompted by you. Yes, insurance in most cases will cover the test --especially if you have a borderline or positive sweat test number. You may run into trouble if she has a very low sweat test number - and at that point you may not want to push for it, because even the Ambry guy says "single digit test results" are unlikely to be CF (find two CF genes in testing) So if you get results back of something like 7, you are probably good -- but if they come back something like 30, you might have to fight for a genetic test. But again, since you are dealing with a pulmonologist at a certified CF center, chance are he/she will be knowledgeable enough to pursue full genetic testing on any suspicious sweat test readings.
Don't beat yourself up to much -- you're not a doctor -- they are the one's who should have thought of it earlier, not you! But I do know what you mean -- I think about it too because we were told 38 sweat test was normal, and nobody said a genetic test was available in the early 1990's - the internet wasn't nearly as prevalent back then, so I just took their word for it that it meant we didn't have to consider CF again.
If her sweat test is in the 20'-40's yes, specifically ask for an Ambry full panel test. I have an idea if she runs anything over 40 they will automatically call for it without being prompted by you. Yes, insurance in most cases will cover the test --especially if you have a borderline or positive sweat test number. You may run into trouble if she has a very low sweat test number - and at that point you may not want to push for it, because even the Ambry guy says "single digit test results" are unlikely to be CF (find two CF genes in testing) So if you get results back of something like 7, you are probably good -- but if they come back something like 30, you might have to fight for a genetic test. But again, since you are dealing with a pulmonologist at a certified CF center, chance are he/she will be knowledgeable enough to pursue full genetic testing on any suspicious sweat test readings.
If her sweat test is in the 20'-40's yes, specifically ask for an Ambry full panel test. I have an idea if she runs anything over 40 they will automatically call for it without being prompted by you. Yes, insurance in most cases will cover the test --especially if you have a borderline or positive sweat test number. You may run into trouble if she has a very low sweat test number - and at that point you may not want to push for it, because even the Ambry guy says "single digit test results" are unlikely to be CF (find two CF genes in testing) So if you get results back of something like 7, you are probably good -- but if they come back something like 30, you might have to fight for a genetic test. But again, since you are dealing with a pulmonologist at a certified CF center, chance are he/she will be knowledgeable enough to pursue full genetic testing on any suspicious sweat test readings.
Well, after calling childrens hospital and the pcp, the pcp had a nurse call me back with sweat test results. She said they were in the"normal limits". I asked for a number, but the nurse said that was all the pcp had written down. If I want to know more I have to wait for the pulmo to call. I'm sorta relieved, but we may be back to square one. What's wrong with her? 11 years sick is enough not knowing what is wrong. She's been sick again for 3 days. More antibiotics and still no answers. Just want to figure it all out and get her treatments that help!Everyone here has been so nice and I thank you! T
Well, after calling childrens hospital and the pcp, the pcp had a nurse call me back with sweat test results. She said they were in the"normal limits". I asked for a number, but the nurse said that was all the pcp had written down. If I want to know more I have to wait for the pulmo to call. I'm sorta relieved, but we may be back to square one. What's wrong with her? 11 years sick is enough not knowing what is wrong. She's been sick again for 3 days. More antibiotics and still no answers. Just want to figure it all out and get her treatments that help!Everyone here has been so nice and I thank you! T
Well, after calling childrens hospital and the pcp, the pcp had a nurse call me back with sweat test results. She said they were in the"normal limits". I asked for a number, but the nurse said that was all the pcp had written down. If I want to know more I have to wait for the pulmo to call. I'm sorta relieved, but we may be back to square one. What's wrong with her? 11 years sick is enough not knowing what is wrong. She's been sick again for 3 days. More antibiotics and still no answers. Just want to figure it all out and get her treatments that help!Everyone here has been so nice and I thank you! T
Well, after calling childrens hospital and the pcp, the pcp had a nurse call me back with sweat test results. She said they were in the"normal limits". I asked for a number, but the nurse said that was all the pcp had written down. If I want to know more I have to wait for the pulmo to call. I'm sorta relieved, but we may be back to square one. What's wrong with her? 11 years sick is enough not knowing what is wrong. She's been sick again for 3 days. More antibiotics and still no answers. Just want to figure it all out and get her treatments that help!Everyone here has been so nice and I thank you! T
Well, after calling childrens hospital and the pcp, the pcp had a nurse call me back with sweat test results. She said they were in the"normal limits". I asked for a number, but the nurse said that was all the pcp had written down. If I want to know more I have to wait for the pulmo to call. I'm sorta relieved, but we may be back to square one. What's wrong with her? 11 years sick is enough not knowing what is wrong. She's been sick again for 3 days. More antibiotics and still no answers. Just want to figure it all out and get her treatments that help!Everyone here has been so nice and I thank you! T