Newly Diagnosed ?

[Koleen]

I have posted before and now if you dont mind I would like to hear from you and how you where diagnosed.
How many of you dont no your gene? Or cant be found?
How many of you had a positive sweat test without supoorting testing?
It has almost been a year since we where told are daughter has atypical CF. This is because no gene has been found. We had deletions ran also, all other supporting testing has been negative. No throat cultures showed anything. Failure to grow was the reason for testing in the first place. She is in the 35th percent tile. We work with a CF Team and now are going to once again draw blood for another lab for more deletion testing. I'm just wondering if there is something else out there that can affect the sweat test. The sweat test was done twice, borderline and one just over 60. I have read so much info on CF and just cant understand her results on testing. I'm open to hear from you and how other been diagnosed or have heard of cases like hers. Thank you so much you all are so great.

 

[Koleen]

I have posted before and now if you dont mind I would like to hear from you and how you where diagnosed.
How many of you dont no your gene? Or cant be found?
How many of you had a positive sweat test without supoorting testing?
It has almost been a year since we where told are daughter has atypical CF. This is because no gene has been found. We had deletions ran also, all other supporting testing has been negative. No throat cultures showed anything. Failure to grow was the reason for testing in the first place. She is in the 35th percent tile. We work with a CF Team and now are going to once again draw blood for another lab for more deletion testing. I'm just wondering if there is something else out there that can affect the sweat test. The sweat test was done twice, borderline and one just over 60. I have read so much info on CF and just cant understand her results on testing. I'm open to hear from you and how other been diagnosed or have heard of cases like hers. Thank you so much you all are so great.

 

[Koleen]

I have posted before and now if you dont mind I would like to hear from you and how you where diagnosed.
How many of you dont no your gene? Or cant be found?
How many of you had a positive sweat test without supoorting testing?
It has almost been a year since we where told are daughter has atypical CF. This is because no gene has been found. We had deletions ran also, all other supporting testing has been negative. No throat cultures showed anything. Failure to grow was the reason for testing in the first place. She is in the 35th percent tile. We work with a CF Team and now are going to once again draw blood for another lab for more deletion testing. I'm just wondering if there is something else out there that can affect the sweat test. The sweat test was done twice, borderline and one just over 60. I have read so much info on CF and just cant understand her results on testing. I'm open to hear from you and how other been diagnosed or have heard of cases like hers. Thank you so much you all are so great.

 

[Koleen]

I have posted before and now if you dont mind I would like to hear from you and how you where diagnosed.
How many of you dont no your gene? Or cant be found?
How many of you had a positive sweat test without supoorting testing?
It has almost been a year since we where told are daughter has atypical CF. This is because no gene has been found. We had deletions ran also, all other supporting testing has been negative. No throat cultures showed anything. Failure to grow was the reason for testing in the first place. She is in the 35th percent tile. We work with a CF Team and now are going to once again draw blood for another lab for more deletion testing. I'm just wondering if there is something else out there that can affect the sweat test. The sweat test was done twice, borderline and one just over 60. I have read so much info on CF and just cant understand her results on testing. I'm open to hear from you and how other been diagnosed or have heard of cases like hers. Thank you so much you all are so great.

 

[Koleen]

I have posted before and now if you dont mind I would like to hear from you and how you where diagnosed.
<br />How many of you dont no your gene? Or cant be found?
<br />How many of you had a positive sweat test without supoorting testing?
<br />It has almost been a year since we where told are daughter has atypical CF. This is because no gene has been found. We had deletions ran also, all other supporting testing has been negative. No throat cultures showed anything. Failure to grow was the reason for testing in the first place. She is in the 35th percent tile. We work with a CF Team and now are going to once again draw blood for another lab for more deletion testing. I'm just wondering if there is something else out there that can affect the sweat test. The sweat test was done twice, borderline and one just over 60. I have read so much info on CF and just cant understand her results on testing. I'm open to hear from you and how other been diagnosed or have heard of cases like hers. Thank you so much you all are so great.

 

[Buckeye]

I'm a little confused on your question. So are you saying your child has been diagnosed with CF due to the sweat test, but because they did not find a mutation you don't believe the diagnosis?

 

[Buckeye]

I'm a little confused on your question. So are you saying your child has been diagnosed with CF due to the sweat test, but because they did not find a mutation you don't believe the diagnosis?

 

[Buckeye]

I'm a little confused on your question. So are you saying your child has been diagnosed with CF due to the sweat test, but because they did not find a mutation you don't believe the diagnosis?

 

[Buckeye]

I'm a little confused on your question. So are you saying your child has been diagnosed with CF due to the sweat test, but because they did not find a mutation you don't believe the diagnosis?

 

[Buckeye]

I'm a little confused on your question. So are you saying your child has been diagnosed with CF due to the sweat test, but because they did not find a mutation you don't believe the diagnosis?

 

[Koleen]

Sorry if I confused you, no I do think she has CF, but want to understand more, and hear more about others who have CF but whom have had testing not supporting 100% diagnosing. When you read about the sweat test yes it is 99.9% but what if she has something else Addrenal gland can cause a false post... there are a few morefactors that play a role in sweat test.
I read alot of blogs, on the board some like my daughters I guess I'm still in shock maybe.
thank you

 

[Koleen]

Sorry if I confused you, no I do think she has CF, but want to understand more, and hear more about others who have CF but whom have had testing not supporting 100% diagnosing. When you read about the sweat test yes it is 99.9% but what if she has something else Addrenal gland can cause a false post... there are a few morefactors that play a role in sweat test.
I read alot of blogs, on the board some like my daughters I guess I'm still in shock maybe.
thank you

 

[Koleen]

Sorry if I confused you, no I do think she has CF, but want to understand more, and hear more about others who have CF but whom have had testing not supporting 100% diagnosing. When you read about the sweat test yes it is 99.9% but what if she has something else Addrenal gland can cause a false post... there are a few morefactors that play a role in sweat test.
I read alot of blogs, on the board some like my daughters I guess I'm still in shock maybe.
thank you

 

[Koleen]

Sorry if I confused you, no I do think she has CF, but want to understand more, and hear more about others who have CF but whom have had testing not supporting 100% diagnosing. When you read about the sweat test yes it is 99.9% but what if she has something else Addrenal gland can cause a false post... there are a few morefactors that play a role in sweat test.
I read alot of blogs, on the board some like my daughters I guess I'm still in shock maybe.
thank you

 

[Koleen]

Sorry if I confused you, no I do think she has CF, but want to understand more, and hear more about others who have CF but whom have had testing not supporting 100% diagnosing. When you read about the sweat test yes it is 99.9% but what if she has something else Addrenal gland can cause a false post... there are a few morefactors that play a role in sweat test.
<br />I read alot of blogs, on the board some like my daughters I guess I'm still in shock maybe.
<br />thank you

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Koleen</b></i>
She seems to get a cold oncea year mostly right around X-mas of course. The past few years feel like I'm re-living the year before, with a nasty cold. </end quote></div>

My oldest son and I both have atypical CF. I don't know you what you want to know about it. You can check my website if you are curious about what we are doing. I just thought I would comment on the above. I used to always be sick around Christmas time as well. Then we threw out our Christmas tree and all decorations, etc. Christmas decorations typically sit in a shed or attic or storeroom for 11 months or more each year. I think they tend to be covered in mildew, dust, and other fine particles. When I went to stay with my mother, I threw up the day after the Christmas tree was taken out of storage and put up and decorated. We will never have Christmas deorations again.

Peace.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Koleen</b></i>
She seems to get a cold oncea year mostly right around X-mas of course. The past few years feel like I'm re-living the year before, with a nasty cold. </end quote></div>

My oldest son and I both have atypical CF. I don't know you what you want to know about it. You can check my website if you are curious about what we are doing. I just thought I would comment on the above. I used to always be sick around Christmas time as well. Then we threw out our Christmas tree and all decorations, etc. Christmas decorations typically sit in a shed or attic or storeroom for 11 months or more each year. I think they tend to be covered in mildew, dust, and other fine particles. When I went to stay with my mother, I threw up the day after the Christmas tree was taken out of storage and put up and decorated. We will never have Christmas deorations again.

Peace.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Koleen</b></i>
She seems to get a cold oncea year mostly right around X-mas of course. The past few years feel like I'm re-living the year before, with a nasty cold. </end quote></div>

My oldest son and I both have atypical CF. I don't know you what you want to know about it. You can check my website if you are curious about what we are doing. I just thought I would comment on the above. I used to always be sick around Christmas time as well. Then we threw out our Christmas tree and all decorations, etc. Christmas decorations typically sit in a shed or attic or storeroom for 11 months or more each year. I think they tend to be covered in mildew, dust, and other fine particles. When I went to stay with my mother, I threw up the day after the Christmas tree was taken out of storage and put up and decorated. We will never have Christmas deorations again.

Peace.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Koleen</b></i>
She seems to get a cold oncea year mostly right around X-mas of course. The past few years feel like I'm re-living the year before, with a nasty cold. </end quote>

My oldest son and I both have atypical CF. I don't know you what you want to know about it. You can check my website if you are curious about what we are doing. I just thought I would comment on the above. I used to always be sick around Christmas time as well. Then we threw out our Christmas tree and all decorations, etc. Christmas decorations typically sit in a shed or attic or storeroom for 11 months or more each year. I think they tend to be covered in mildew, dust, and other fine particles. When I went to stay with my mother, I threw up the day after the Christmas tree was taken out of storage and put up and decorated. We will never have Christmas deorations again.

Peace.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Koleen</b></i>
<br />She seems to get a cold oncea year mostly right around X-mas of course. The past few years feel like I'm re-living the year before, with a nasty cold. </end quote>
<br />
<br />My oldest son and I both have atypical CF. I don't know you what you want to know about it. You can check my website if you are curious about what we are doing. I just thought I would comment on the above. I used to always be sick around Christmas time as well. Then we threw out our Christmas tree and all decorations, etc. Christmas decorations typically sit in a shed or attic or storeroom for 11 months or more each year. I think they tend to be covered in mildew, dust, and other fine particles. When I went to stay with my mother, I threw up the day after the Christmas tree was taken out of storage and put up and decorated. We will never have Christmas deorations again.
<br />
<br />Peace.