2 neg.sweat tests- LOW 7 & 8- tested neg.for 32 genetic mutations? I have new pediatrician- Baby has appt.w/immunolgist next week-Constant bloodwork/tests- she has been admitted to hosp.twice since July- Pulmonolgist since CT scan was neg.-she does have pectus excavatum but they said it is not interfering w/lung function-I guess she had to lose 2 pounds for the doctors to see her rib cage-She still wakes up retracting and a dry cough-then after 2 albuterol brthing treatmnts, she coughs and hacks for about 3 hours clearing her lungs-Been doing this everyday since midle of May-No real infections culture, but chronic atelectasis in lungs-this ain't asthma folks!!! Any help on the testing or suggestions? Also nose constantly congested sounding and I suction 4 times a day-clear mucous out of it-her nose never drains on its own though-.
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Can I rule CF out w/these tests?
- Thread starter AlexsMom
- Start date
2 neg.sweat tests- LOW 7 & 8- tested neg.for 32 genetic mutations? I have new pediatrician- Baby has appt.w/immunolgist next week-Constant bloodwork/tests- she has been admitted to hosp.twice since July- Pulmonolgist since CT scan was neg.-she does have pectus excavatum but they said it is not interfering w/lung function-I guess she had to lose 2 pounds for the doctors to see her rib cage-She still wakes up retracting and a dry cough-then after 2 albuterol brthing treatmnts, she coughs and hacks for about 3 hours clearing her lungs-Been doing this everyday since midle of May-No real infections culture, but chronic atelectasis in lungs-this ain't asthma folks!!! Any help on the testing or suggestions? Also nose constantly congested sounding and I suction 4 times a day-clear mucous out of it-her nose never drains on its own though-.
2 neg.sweat tests- LOW 7 & 8- tested neg.for 32 genetic mutations? I have new pediatrician- Baby has appt.w/immunolgist next week-Constant bloodwork/tests- she has been admitted to hosp.twice since July- Pulmonolgist since CT scan was neg.-she does have pectus excavatum but they said it is not interfering w/lung function-I guess she had to lose 2 pounds for the doctors to see her rib cage-She still wakes up retracting and a dry cough-then after 2 albuterol brthing treatmnts, she coughs and hacks for about 3 hours clearing her lungs-Been doing this everyday since midle of May-No real infections culture, but chronic atelectasis in lungs-this ain't asthma folks!!! Any help on the testing or suggestions? Also nose constantly congested sounding and I suction 4 times a day-clear mucous out of it-her nose never drains on its own though-.
2 neg.sweat tests- LOW 7 & 8- tested neg.for 32 genetic mutations? I have new pediatrician- Baby has appt.w/immunolgist next week-Constant bloodwork/tests- she has been admitted to hosp.twice since July- Pulmonolgist since CT scan was neg.-she does have pectus excavatum but they said it is not interfering w/lung function-I guess she had to lose 2 pounds for the doctors to see her rib cage-She still wakes up retracting and a dry cough-then after 2 albuterol brthing treatmnts, she coughs and hacks for about 3 hours clearing her lungs-Been doing this everyday since midle of May-No real infections culture, but chronic atelectasis in lungs-this ain't asthma folks!!! Any help on the testing or suggestions? Also nose constantly congested sounding and I suction 4 times a day-clear mucous out of it-her nose never drains on its own though-.
2 neg.sweat tests- LOW 7 & 8- tested neg.for 32 genetic mutations? I have new pediatrician- Baby has appt.w/immunolgist next week-Constant bloodwork/tests- she has been admitted to hosp.twice since July- Pulmonolgist since CT scan was neg.-she does have pectus excavatum but they said it is not interfering w/lung function-I guess she had to lose 2 pounds for the doctors to see her rib cage-She still wakes up retracting and a dry cough-then after 2 albuterol brthing treatmnts, she coughs and hacks for about 3 hours clearing her lungs-Been doing this everyday since midle of May-No real infections culture, but chronic atelectasis in lungs-this ain't asthma folks!!! Any help on the testing or suggestions? Also nose constantly congested sounding and I suction 4 times a day-clear mucous out of it-her nose never drains on its own though-.
damiensmom
New member
No you cannot. My son did every test under the son. was sent to PCH from birth for suspected cf and a month later they sent us home and said he does not have it hes just a preemie preemie. Well They had given him as full quest genetiic blood panel but they did not wait for the results before discharge because of false negative testing there are no false positives however should you get the full genetic blood panel to cf mutations = cystic fibrosis no matter what. So I would not count on a trhing till you have afull panel test done.
damiensmom
New member
No you cannot. My son did every test under the son. was sent to PCH from birth for suspected cf and a month later they sent us home and said he does not have it hes just a preemie preemie. Well They had given him as full quest genetiic blood panel but they did not wait for the results before discharge because of false negative testing there are no false positives however should you get the full genetic blood panel to cf mutations = cystic fibrosis no matter what. So I would not count on a trhing till you have afull panel test done.
damiensmom
New member
No you cannot. My son did every test under the son. was sent to PCH from birth for suspected cf and a month later they sent us home and said he does not have it hes just a preemie preemie. Well They had given him as full quest genetiic blood panel but they did not wait for the results before discharge because of false negative testing there are no false positives however should you get the full genetic blood panel to cf mutations = cystic fibrosis no matter what. So I would not count on a trhing till you have afull panel test done.
damiensmom
New member
No you cannot. My son did every test under the son. was sent to PCH from birth for suspected cf and a month later they sent us home and said he does not have it hes just a preemie preemie. Well They had given him as full quest genetiic blood panel but they did not wait for the results before discharge because of false negative testing there are no false positives however should you get the full genetic blood panel to cf mutations = cystic fibrosis no matter what. So I would not count on a trhing till you have afull panel test done.
damiensmom
New member
No you cannot. My son did every test under the son. was sent to PCH from birth for suspected cf and a month later they sent us home and said he does not have it hes just a preemie preemie. Well They had given him as full quest genetiic blood panel but they did not wait for the results before discharge because of false negative testing there are no false positives however should you get the full genetic blood panel to cf mutations = cystic fibrosis no matter what. So I would not count on a trhing till you have afull panel test done.
hmmm, usually I am the queen of "Get a full genetic test -- negative sweat tests can be misleading" but in your case two of them THAT low is not what I'm usually talking about.
I'm no expert, but of all the people I have talked to about negative or borderline sweat test numbers they have all scored above 20. <b>But on the other hand</b>, there are over 1500 CF gene mutations... you are leaving out nearly all of them by only testing for 32 of them.....that's a lot of stones left unturned !
<b>I think you should continue to push for full genetic testing</b>, otherwise you will always be wondering if you missed the CF -- and if you have, you are wasting your time seeking other explanations, when you could have been treating the CF.
As a side note, have you seen an allergist? I think it would be worth a full workup there too. And don't forget to consider that many people with CF also have asthma and allergies.... they aren't blessed with only one problem !
I'm no expert, but of all the people I have talked to about negative or borderline sweat test numbers they have all scored above 20. <b>But on the other hand</b>, there are over 1500 CF gene mutations... you are leaving out nearly all of them by only testing for 32 of them.....that's a lot of stones left unturned !
<b>I think you should continue to push for full genetic testing</b>, otherwise you will always be wondering if you missed the CF -- and if you have, you are wasting your time seeking other explanations, when you could have been treating the CF.
As a side note, have you seen an allergist? I think it would be worth a full workup there too. And don't forget to consider that many people with CF also have asthma and allergies.... they aren't blessed with only one problem !
hmmm, usually I am the queen of "Get a full genetic test -- negative sweat tests can be misleading" but in your case two of them THAT low is not what I'm usually talking about.
I'm no expert, but of all the people I have talked to about negative or borderline sweat test numbers they have all scored above 20. <b>But on the other hand</b>, there are over 1500 CF gene mutations... you are leaving out nearly all of them by only testing for 32 of them.....that's a lot of stones left unturned !
<b>I think you should continue to push for full genetic testing</b>, otherwise you will always be wondering if you missed the CF -- and if you have, you are wasting your time seeking other explanations, when you could have been treating the CF.
As a side note, have you seen an allergist? I think it would be worth a full workup there too. And don't forget to consider that many people with CF also have asthma and allergies.... they aren't blessed with only one problem !
I'm no expert, but of all the people I have talked to about negative or borderline sweat test numbers they have all scored above 20. <b>But on the other hand</b>, there are over 1500 CF gene mutations... you are leaving out nearly all of them by only testing for 32 of them.....that's a lot of stones left unturned !
<b>I think you should continue to push for full genetic testing</b>, otherwise you will always be wondering if you missed the CF -- and if you have, you are wasting your time seeking other explanations, when you could have been treating the CF.
As a side note, have you seen an allergist? I think it would be worth a full workup there too. And don't forget to consider that many people with CF also have asthma and allergies.... they aren't blessed with only one problem !
hmmm, usually I am the queen of "Get a full genetic test -- negative sweat tests can be misleading" but in your case two of them THAT low is not what I'm usually talking about.
I'm no expert, but of all the people I have talked to about negative or borderline sweat test numbers they have all scored above 20. <b>But on the other hand</b>, there are over 1500 CF gene mutations... you are leaving out nearly all of them by only testing for 32 of them.....that's a lot of stones left unturned !
<b>I think you should continue to push for full genetic testing</b>, otherwise you will always be wondering if you missed the CF -- and if you have, you are wasting your time seeking other explanations, when you could have been treating the CF.
As a side note, have you seen an allergist? I think it would be worth a full workup there too. And don't forget to consider that many people with CF also have asthma and allergies.... they aren't blessed with only one problem !
I'm no expert, but of all the people I have talked to about negative or borderline sweat test numbers they have all scored above 20. <b>But on the other hand</b>, there are over 1500 CF gene mutations... you are leaving out nearly all of them by only testing for 32 of them.....that's a lot of stones left unturned !
<b>I think you should continue to push for full genetic testing</b>, otherwise you will always be wondering if you missed the CF -- and if you have, you are wasting your time seeking other explanations, when you could have been treating the CF.
As a side note, have you seen an allergist? I think it would be worth a full workup there too. And don't forget to consider that many people with CF also have asthma and allergies.... they aren't blessed with only one problem !
hmmm, usually I am the queen of "Get a full genetic test -- negative sweat tests can be misleading" but in your case two of them THAT low is not what I'm usually talking about.
I'm no expert, but of all the people I have talked to about negative or borderline sweat test numbers they have all scored above 20. <b>But on the other hand</b>, there are over 1500 CF gene mutations... you are leaving out nearly all of them by only testing for 32 of them.....that's a lot of stones left unturned !
<b>I think you should continue to push for full genetic testing</b>, otherwise you will always be wondering if you missed the CF -- and if you have, you are wasting your time seeking other explanations, when you could have been treating the CF.
As a side note, have you seen an allergist? I think it would be worth a full workup there too. And don't forget to consider that many people with CF also have asthma and allergies.... they aren't blessed with only one problem !
I'm no expert, but of all the people I have talked to about negative or borderline sweat test numbers they have all scored above 20. <b>But on the other hand</b>, there are over 1500 CF gene mutations... you are leaving out nearly all of them by only testing for 32 of them.....that's a lot of stones left unturned !
<b>I think you should continue to push for full genetic testing</b>, otherwise you will always be wondering if you missed the CF -- and if you have, you are wasting your time seeking other explanations, when you could have been treating the CF.
As a side note, have you seen an allergist? I think it would be worth a full workup there too. And don't forget to consider that many people with CF also have asthma and allergies.... they aren't blessed with only one problem !
hmmm, usually I am the queen of "Get a full genetic test -- negative sweat tests can be misleading" but in your case two of them THAT low is not what I'm usually talking about.
I'm no expert, but of all the people I have talked to about negative or borderline sweat test numbers they have all scored above 20. <b>But on the other hand</b>, there are over 1500 CF gene mutations... you are leaving out nearly all of them by only testing for 32 of them.....that's a lot of stones left unturned !
<b>I think you should continue to push for full genetic testing</b>, otherwise you will always be wondering if you missed the CF -- and if you have, you are wasting your time seeking other explanations, when you could have been treating the CF.
As a side note, have you seen an allergist? I think it would be worth a full workup there too. And don't forget to consider that many people with CF also have asthma and allergies.... they aren't blessed with only one problem !
I'm no expert, but of all the people I have talked to about negative or borderline sweat test numbers they have all scored above 20. <b>But on the other hand</b>, there are over 1500 CF gene mutations... you are leaving out nearly all of them by only testing for 32 of them.....that's a lot of stones left unturned !
<b>I think you should continue to push for full genetic testing</b>, otherwise you will always be wondering if you missed the CF -- and if you have, you are wasting your time seeking other explanations, when you could have been treating the CF.
As a side note, have you seen an allergist? I think it would be worth a full workup there too. And don't forget to consider that many people with CF also have asthma and allergies.... they aren't blessed with only one problem !
As far as an allergist, yes the doc we are seing next week is an immunologis/allergist- they just ran her humorol (immune IGG) panel and a RAST allergy blood test-I went to a health store and as of 2 weeks ago, she has been on a severely restricted diet-rice milk, no dairy,soy, wheat/gluten free, etc. and I have been strict with it-I have seen an improvement in the fact that it takes her about 3-4 hours to cough it all out instead of all day. What do I say to her pulmonologist that is with an accredited CF group? I call them at least 3 times a week and have for 3 months with questions. How do I justify wanting the full Ambry with her low sweats and the mucous in her lungs did not culture anything after her bronch- I asked him after the bronch if her lungs looked like Cf lungs, he said "yes, but the mucous is usually green, but she definitiely had more mucous than he expected." Somebody out there tell me to move on and shut-up about CF w/those low sweats. I want to hear it.
As far as an allergist, yes the doc we are seing next week is an immunologis/allergist- they just ran her humorol (immune IGG) panel and a RAST allergy blood test-I went to a health store and as of 2 weeks ago, she has been on a severely restricted diet-rice milk, no dairy,soy, wheat/gluten free, etc. and I have been strict with it-I have seen an improvement in the fact that it takes her about 3-4 hours to cough it all out instead of all day. What do I say to her pulmonologist that is with an accredited CF group? I call them at least 3 times a week and have for 3 months with questions. How do I justify wanting the full Ambry with her low sweats and the mucous in her lungs did not culture anything after her bronch- I asked him after the bronch if her lungs looked like Cf lungs, he said "yes, but the mucous is usually green, but she definitiely had more mucous than he expected." Somebody out there tell me to move on and shut-up about CF w/those low sweats. I want to hear it.
As far as an allergist, yes the doc we are seing next week is an immunologis/allergist- they just ran her humorol (immune IGG) panel and a RAST allergy blood test-I went to a health store and as of 2 weeks ago, she has been on a severely restricted diet-rice milk, no dairy,soy, wheat/gluten free, etc. and I have been strict with it-I have seen an improvement in the fact that it takes her about 3-4 hours to cough it all out instead of all day. What do I say to her pulmonologist that is with an accredited CF group? I call them at least 3 times a week and have for 3 months with questions. How do I justify wanting the full Ambry with her low sweats and the mucous in her lungs did not culture anything after her bronch- I asked him after the bronch if her lungs looked like Cf lungs, he said "yes, but the mucous is usually green, but she definitiely had more mucous than he expected." Somebody out there tell me to move on and shut-up about CF w/those low sweats. I want to hear it.
As far as an allergist, yes the doc we are seing next week is an immunologis/allergist- they just ran her humorol (immune IGG) panel and a RAST allergy blood test-I went to a health store and as of 2 weeks ago, she has been on a severely restricted diet-rice milk, no dairy,soy, wheat/gluten free, etc. and I have been strict with it-I have seen an improvement in the fact that it takes her about 3-4 hours to cough it all out instead of all day. What do I say to her pulmonologist that is with an accredited CF group? I call them at least 3 times a week and have for 3 months with questions. How do I justify wanting the full Ambry with her low sweats and the mucous in her lungs did not culture anything after her bronch- I asked him after the bronch if her lungs looked like Cf lungs, he said "yes, but the mucous is usually green, but she definitiely had more mucous than he expected." Somebody out there tell me to move on and shut-up about CF w/those low sweats. I want to hear it.
As far as an allergist, yes the doc we are seing next week is an immunologis/allergist- they just ran her humorol (immune IGG) panel and a RAST allergy blood test-I went to a health store and as of 2 weeks ago, she has been on a severely restricted diet-rice milk, no dairy,soy, wheat/gluten free, etc. and I have been strict with it-I have seen an improvement in the fact that it takes her about 3-4 hours to cough it all out instead of all day. What do I say to her pulmonologist that is with an accredited CF group? I call them at least 3 times a week and have for 3 months with questions. How do I justify wanting the full Ambry with her low sweats and the mucous in her lungs did not culture anything after her bronch- I asked him after the bronch if her lungs looked like Cf lungs, he said "yes, but the mucous is usually green, but she definitiely had more mucous than he expected." Somebody out there tell me to move on and shut-up about CF w/those low sweats. I want to hear it.