help confused about my sons possible cf

clawson5104

New member
My son also had borderline sweat test. they only found one mutation, but also a 5t/11tg variant. so i was told he has a "mild" form of cf, what they call atypical.....he has some symptoms, but not to the extreme like alot of cf'ers do. he is not on enzymes, but has asthma w/ cf so he does breathing treatments and cpt "clapping" as needed. he takes singulair for allergies, and prilosec for severe acid reflux. his tests show good on pancreas, but although nothing is found, he still has trouble with bowel movements. in the long run he may get worse, may be the same. they donno. but he will be treated as if he has two mutations. every cold and virus will be taken seriously. flu shots, etc. he is underweight, but he doesn't eat good at all, so we dont know if his bowel problems are from that. so, i wish luck, and there are alot of good people, who can help u. even if you think it's a dumb question, dont hesitate to ask. i have only been in the cf world 6 months, so i'm still learning too. it's scary, cause there's alot of questions that may never be answered, "just have to wait and see, every case is different" even with the same mutations. as in my son's case, his should have no affect respiratory wise, but in reproductive. well, this all started because of respiratory problems. so it's good to know mutations, but it's definitely not a crystal ball. good luck, welcome
 

clawson5104

New member
My son also had borderline sweat test. they only found one mutation, but also a 5t/11tg variant. so i was told he has a "mild" form of cf, what they call atypical.....he has some symptoms, but not to the extreme like alot of cf'ers do. he is not on enzymes, but has asthma w/ cf so he does breathing treatments and cpt "clapping" as needed. he takes singulair for allergies, and prilosec for severe acid reflux. his tests show good on pancreas, but although nothing is found, he still has trouble with bowel movements. in the long run he may get worse, may be the same. they donno. but he will be treated as if he has two mutations. every cold and virus will be taken seriously. flu shots, etc. he is underweight, but he doesn't eat good at all, so we dont know if his bowel problems are from that. so, i wish luck, and there are alot of good people, who can help u. even if you think it's a dumb question, dont hesitate to ask. i have only been in the cf world 6 months, so i'm still learning too. it's scary, cause there's alot of questions that may never be answered, "just have to wait and see, every case is different" even with the same mutations. as in my son's case, his should have no affect respiratory wise, but in reproductive. well, this all started because of respiratory problems. so it's good to know mutations, but it's definitely not a crystal ball. good luck, welcome
 

clawson5104

New member
My son also had borderline sweat test. they only found one mutation, but also a 5t/11tg variant. so i was told he has a "mild" form of cf, what they call atypical.....he has some symptoms, but not to the extreme like alot of cf'ers do. he is not on enzymes, but has asthma w/ cf so he does breathing treatments and cpt "clapping" as needed. he takes singulair for allergies, and prilosec for severe acid reflux. his tests show good on pancreas, but although nothing is found, he still has trouble with bowel movements. in the long run he may get worse, may be the same. they donno. but he will be treated as if he has two mutations. every cold and virus will be taken seriously. flu shots, etc. he is underweight, but he doesn't eat good at all, so we dont know if his bowel problems are from that. so, i wish luck, and there are alot of good people, who can help u. even if you think it's a dumb question, dont hesitate to ask. i have only been in the cf world 6 months, so i'm still learning too. it's scary, cause there's alot of questions that may never be answered, "just have to wait and see, every case is different" even with the same mutations. as in my son's case, his should have no affect respiratory wise, but in reproductive. well, this all started because of respiratory problems. so it's good to know mutations, but it's definitely not a crystal ball. good luck, welcome
 

clawson5104

New member
My son also had borderline sweat test. they only found one mutation, but also a 5t/11tg variant. so i was told he has a "mild" form of cf, what they call atypical.....he has some symptoms, but not to the extreme like alot of cf'ers do. he is not on enzymes, but has asthma w/ cf so he does breathing treatments and cpt "clapping" as needed. he takes singulair for allergies, and prilosec for severe acid reflux. his tests show good on pancreas, but although nothing is found, he still has trouble with bowel movements. in the long run he may get worse, may be the same. they donno. but he will be treated as if he has two mutations. every cold and virus will be taken seriously. flu shots, etc. he is underweight, but he doesn't eat good at all, so we dont know if his bowel problems are from that. so, i wish luck, and there are alot of good people, who can help u. even if you think it's a dumb question, dont hesitate to ask. i have only been in the cf world 6 months, so i'm still learning too. it's scary, cause there's alot of questions that may never be answered, "just have to wait and see, every case is different" even with the same mutations. as in my son's case, his should have no affect respiratory wise, but in reproductive. well, this all started because of respiratory problems. so it's good to know mutations, but it's definitely not a crystal ball. good luck, welcome
 

clawson5104

New member
My son also had borderline sweat test. they only found one mutation, but also a 5t/11tg variant. so i was told he has a "mild" form of cf, what they call atypical.....he has some symptoms, but not to the extreme like alot of cf'ers do. he is not on enzymes, but has asthma w/ cf so he does breathing treatments and cpt "clapping" as needed. he takes singulair for allergies, and prilosec for severe acid reflux. his tests show good on pancreas, but although nothing is found, he still has trouble with bowel movements. in the long run he may get worse, may be the same. they donno. but he will be treated as if he has two mutations. every cold and virus will be taken seriously. flu shots, etc. he is underweight, but he doesn't eat good at all, so we dont know if his bowel problems are from that. so, i wish luck, and there are alot of good people, who can help u. even if you think it's a dumb question, dont hesitate to ask. i have only been in the cf world 6 months, so i'm still learning too. it's scary, cause there's alot of questions that may never be answered, "just have to wait and see, every case is different" even with the same mutations. as in my son's case, his should have no affect respiratory wise, but in reproductive. well, this all started because of respiratory problems. so it's good to know mutations, but it's definitely not a crystal ball. good luck, welcome
 

vmccomas

New member
We are going on Friday to the doctor at UVA to get the testing we need in order to find out if he does indeed have CF. Just keep us in your prayers and I'll let you all know something as soon as I do.
 

vmccomas

New member
We are going on Friday to the doctor at UVA to get the testing we need in order to find out if he does indeed have CF. Just keep us in your prayers and I'll let you all know something as soon as I do.
 

vmccomas

New member
We are going on Friday to the doctor at UVA to get the testing we need in order to find out if he does indeed have CF. Just keep us in your prayers and I'll let you all know something as soon as I do.
 

vmccomas

New member
We are going on Friday to the doctor at UVA to get the testing we need in order to find out if he does indeed have CF. Just keep us in your prayers and I'll let you all know something as soon as I do.
 

vmccomas

New member
We are going on Friday to the doctor at UVA to get the testing we need in order to find out if he does indeed have CF. Just keep us in your prayers and I'll let you all know something as soon as I do.
 
H

hopesiris

Guest
valigirl21:

All I was told by my CF doc is that they are concerned about anyone with a sweat test above 30. I guess when your test is that low the diagnosis requires other factors like genetic testing and symptoms.

B
 
H

hopesiris

Guest
valigirl21:

All I was told by my CF doc is that they are concerned about anyone with a sweat test above 30. I guess when your test is that low the diagnosis requires other factors like genetic testing and symptoms.

B
 
H

hopesiris

Guest
valigirl21:

All I was told by my CF doc is that they are concerned about anyone with a sweat test above 30. I guess when your test is that low the diagnosis requires other factors like genetic testing and symptoms.

B
 
H

hopesiris

Guest
valigirl21:

All I was told by my CF doc is that they are concerned about anyone with a sweat test above 30. I guess when your test is that low the diagnosis requires other factors like genetic testing and symptoms.

B
 
H

hopesiris

Guest
valigirl21:

All I was told by my CF doc is that they are concerned about anyone with a sweat test above 30. I guess when your test is that low the diagnosis requires other factors like genetic testing and symptoms.

B
 
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