Question specific to those diagnosed as adults?

[paws]

I was diagnosed at age 20 (am now 43). As a child, I remember having lots of "allergies" the doctor contributed to pollution/smog along with frequent earaches. Upper respiratory symptoms began during my senior year of high school ("walking pneumonia") and continued during my early years of college (recurring bronchitis, hemoptysis). I was finally referred to a pulmonary specialist who suspected CF. It seems I was borderline on the sweat test. As far as genetic testing, one mutation is still unidentified, but the other is 711+1G->T.

In the past few years, I've had increased upper respiratory problems (infections/hemoptysis) which has finally been linked to all my sinus issues. I had sinus surgery 10/2005, but continue to have ongoing problems. I saw an allergist this week so am hoping to finally get these under control (fingers crossed)! The only gastrointestinal problems have been pancreatitis during courses of antibiotics.

FEV1 was 100% last November.

Hope that helps! Good luck!

 

[paws]

I was diagnosed at age 20 (am now 43). As a child, I remember having lots of "allergies" the doctor contributed to pollution/smog along with frequent earaches. Upper respiratory symptoms began during my senior year of high school ("walking pneumonia") and continued during my early years of college (recurring bronchitis, hemoptysis). I was finally referred to a pulmonary specialist who suspected CF. It seems I was borderline on the sweat test. As far as genetic testing, one mutation is still unidentified, but the other is 711+1G->T.

In the past few years, I've had increased upper respiratory problems (infections/hemoptysis) which has finally been linked to all my sinus issues. I had sinus surgery 10/2005, but continue to have ongoing problems. I saw an allergist this week so am hoping to finally get these under control (fingers crossed)! The only gastrointestinal problems have been pancreatitis during courses of antibiotics.

FEV1 was 100% last November.

Hope that helps! Good luck!

 

[paws]

I was diagnosed at age 20 (am now 43). As a child, I remember having lots of "allergies" the doctor contributed to pollution/smog along with frequent earaches. Upper respiratory symptoms began during my senior year of high school ("walking pneumonia") and continued during my early years of college (recurring bronchitis, hemoptysis). I was finally referred to a pulmonary specialist who suspected CF. It seems I was borderline on the sweat test. As far as genetic testing, one mutation is still unidentified, but the other is 711+1G->T.

In the past few years, I've had increased upper respiratory problems (infections/hemoptysis) which has finally been linked to all my sinus issues. I had sinus surgery 10/2005, but continue to have ongoing problems. I saw an allergist this week so am hoping to finally get these under control (fingers crossed)! The only gastrointestinal problems have been pancreatitis during courses of antibiotics.

FEV1 was 100% last November.

Hope that helps! Good luck!

 

[paws]

I was diagnosed at age 20 (am now 43). As a child, I remember having lots of "allergies" the doctor contributed to pollution/smog along with frequent earaches. Upper respiratory symptoms began during my senior year of high school ("walking pneumonia") and continued during my early years of college (recurring bronchitis, hemoptysis). I was finally referred to a pulmonary specialist who suspected CF. It seems I was borderline on the sweat test. As far as genetic testing, one mutation is still unidentified, but the other is 711+1G->T.

In the past few years, I've had increased upper respiratory problems (infections/hemoptysis) which has finally been linked to all my sinus issues. I had sinus surgery 10/2005, but continue to have ongoing problems. I saw an allergist this week so am hoping to finally get these under control (fingers crossed)! The only gastrointestinal problems have been pancreatitis during courses of antibiotics.

FEV1 was 100% last November.

Hope that helps! Good luck!

 

[H2OSPORTSMOM]

Thanks to you all for your input. It should help us alot next CF Center visit. I actually faxed my insurance info to Ambrey today for them to check on if it will pay. Baylorcrew07 my husband and I have been together 25 years. We have a gorgeous 5'1" 20 yr old college junior daughter. She plays intermural now but in junior high and high she played Volleyball, Basketball and Fast pitch Softball. She was awarded the highest athletic award given by her high school. Even turned down two colleges who offered her ironically basketball scholarships. We laugh because she is only 5'1". She can run fast and is very healthy as far as we know. Her younger brother is a dreamy surfer and he looks it. He is the one who has not been that healthy. It is because of his not being able to run and quiting basketball as a high school sophomore that convinced me that something was not right. That same year was when I saw crystalized salt on his tennis uniform, but didn't know it was a symptom of anything. He played tennis for 4 years and he is a great surfer ,scurfer (rides surf board behind boat) and wake boards too. When he gave up basketball it was because in the practices when they would run continuosly he would get sick and vomit. My last MD always made me feel I wanted him to be like his sister. My son will tell you that is not the case. He feels I am the only one who believes he has somthing wrong. He has had three sweat tests 64,57,55. At our last visit they said his sinus look like CF however he is not under weight, a litttle chubby because he is not but 5'6" and eats all the time. His lungs are good and clear. He however has to take previcid ever morning and he has bad headaches alot. Both my children have for the most part been healthy children. We have had them in sports since birth. Always spent summers swimming and active. They are both very close to me and we talk about everything. They neither one like smoking and have never been around second hand except for the occasional sleep over at friends homes through the years. My daughter is currently in Chile studing Spanish. My son is working right now at a local University and is getting ready to attend college. Baylorcrew07 I see you run in you picture. If you are ever interested in running in the NC White Lake Triathlon you have a free place to stay- just let me know.
Someone told me this week it has become one of the largest races in NC. Well again thanks to everyone who has given me your info. If my son were to end up not having CF I will know it was meant for me to take this journey to meet so many wonderful people at this sight. Peace and love to you all!!

 

[H2OSPORTSMOM]

Thanks to you all for your input. It should help us alot next CF Center visit. I actually faxed my insurance info to Ambrey today for them to check on if it will pay. Baylorcrew07 my husband and I have been together 25 years. We have a gorgeous 5'1" 20 yr old college junior daughter. She plays intermural now but in junior high and high she played Volleyball, Basketball and Fast pitch Softball. She was awarded the highest athletic award given by her high school. Even turned down two colleges who offered her ironically basketball scholarships. We laugh because she is only 5'1". She can run fast and is very healthy as far as we know. Her younger brother is a dreamy surfer and he looks it. He is the one who has not been that healthy. It is because of his not being able to run and quiting basketball as a high school sophomore that convinced me that something was not right. That same year was when I saw crystalized salt on his tennis uniform, but didn't know it was a symptom of anything. He played tennis for 4 years and he is a great surfer ,scurfer (rides surf board behind boat) and wake boards too. When he gave up basketball it was because in the practices when they would run continuosly he would get sick and vomit. My last MD always made me feel I wanted him to be like his sister. My son will tell you that is not the case. He feels I am the only one who believes he has somthing wrong. He has had three sweat tests 64,57,55. At our last visit they said his sinus look like CF however he is not under weight, a litttle chubby because he is not but 5'6" and eats all the time. His lungs are good and clear. He however has to take previcid ever morning and he has bad headaches alot. Both my children have for the most part been healthy children. We have had them in sports since birth. Always spent summers swimming and active. They are both very close to me and we talk about everything. They neither one like smoking and have never been around second hand except for the occasional sleep over at friends homes through the years. My daughter is currently in Chile studing Spanish. My son is working right now at a local University and is getting ready to attend college. Baylorcrew07 I see you run in you picture. If you are ever interested in running in the NC White Lake Triathlon you have a free place to stay- just let me know.
Someone told me this week it has become one of the largest races in NC. Well again thanks to everyone who has given me your info. If my son were to end up not having CF I will know it was meant for me to take this journey to meet so many wonderful people at this sight. Peace and love to you all!!

 

[H2OSPORTSMOM]

Thanks to you all for your input. It should help us alot next CF Center visit. I actually faxed my insurance info to Ambrey today for them to check on if it will pay. Baylorcrew07 my husband and I have been together 25 years. We have a gorgeous 5'1" 20 yr old college junior daughter. She plays intermural now but in junior high and high she played Volleyball, Basketball and Fast pitch Softball. She was awarded the highest athletic award given by her high school. Even turned down two colleges who offered her ironically basketball scholarships. We laugh because she is only 5'1". She can run fast and is very healthy as far as we know. Her younger brother is a dreamy surfer and he looks it. He is the one who has not been that healthy. It is because of his not being able to run and quiting basketball as a high school sophomore that convinced me that something was not right. That same year was when I saw crystalized salt on his tennis uniform, but didn't know it was a symptom of anything. He played tennis for 4 years and he is a great surfer ,scurfer (rides surf board behind boat) and wake boards too. When he gave up basketball it was because in the practices when they would run continuosly he would get sick and vomit. My last MD always made me feel I wanted him to be like his sister. My son will tell you that is not the case. He feels I am the only one who believes he has somthing wrong. He has had three sweat tests 64,57,55. At our last visit they said his sinus look like CF however he is not under weight, a litttle chubby because he is not but 5'6" and eats all the time. His lungs are good and clear. He however has to take previcid ever morning and he has bad headaches alot. Both my children have for the most part been healthy children. We have had them in sports since birth. Always spent summers swimming and active. They are both very close to me and we talk about everything. They neither one like smoking and have never been around second hand except for the occasional sleep over at friends homes through the years. My daughter is currently in Chile studing Spanish. My son is working right now at a local University and is getting ready to attend college. Baylorcrew07 I see you run in you picture. If you are ever interested in running in the NC White Lake Triathlon you have a free place to stay- just let me know.
Someone told me this week it has become one of the largest races in NC. Well again thanks to everyone who has given me your info. If my son were to end up not having CF I will know it was meant for me to take this journey to meet so many wonderful people at this sight. Peace and love to you all!!

 

[H2OSPORTSMOM]

Thanks to you all for your input. It should help us alot next CF Center visit. I actually faxed my insurance info to Ambrey today for them to check on if it will pay. Baylorcrew07 my husband and I have been together 25 years. We have a gorgeous 5'1" 20 yr old college junior daughter. She plays intermural now but in junior high and high she played Volleyball, Basketball and Fast pitch Softball. She was awarded the highest athletic award given by her high school. Even turned down two colleges who offered her ironically basketball scholarships. We laugh because she is only 5'1". She can run fast and is very healthy as far as we know. Her younger brother is a dreamy surfer and he looks it. He is the one who has not been that healthy. It is because of his not being able to run and quiting basketball as a high school sophomore that convinced me that something was not right. That same year was when I saw crystalized salt on his tennis uniform, but didn't know it was a symptom of anything. He played tennis for 4 years and he is a great surfer ,scurfer (rides surf board behind boat) and wake boards too. When he gave up basketball it was because in the practices when they would run continuosly he would get sick and vomit. My last MD always made me feel I wanted him to be like his sister. My son will tell you that is not the case. He feels I am the only one who believes he has somthing wrong. He has had three sweat tests 64,57,55. At our last visit they said his sinus look like CF however he is not under weight, a litttle chubby because he is not but 5'6" and eats all the time. His lungs are good and clear. He however has to take previcid ever morning and he has bad headaches alot. Both my children have for the most part been healthy children. We have had them in sports since birth. Always spent summers swimming and active. They are both very close to me and we talk about everything. They neither one like smoking and have never been around second hand except for the occasional sleep over at friends homes through the years. My daughter is currently in Chile studing Spanish. My son is working right now at a local University and is getting ready to attend college. Baylorcrew07 I see you run in you picture. If you are ever interested in running in the NC White Lake Triathlon you have a free place to stay- just let me know.
Someone told me this week it has become one of the largest races in NC. Well again thanks to everyone who has given me your info. If my son were to end up not having CF I will know it was meant for me to take this journey to meet so many wonderful people at this sight. Peace and love to you all!!

 

[H2OSPORTSMOM]

Thanks to you all for your input. It should help us alot next CF Center visit. I actually faxed my insurance info to Ambrey today for them to check on if it will pay. Baylorcrew07 my husband and I have been together 25 years. We have a gorgeous 5'1" 20 yr old college junior daughter. She plays intermural now but in junior high and high she played Volleyball, Basketball and Fast pitch Softball. She was awarded the highest athletic award given by her high school. Even turned down two colleges who offered her ironically basketball scholarships. We laugh because she is only 5'1". She can run fast and is very healthy as far as we know. Her younger brother is a dreamy surfer and he looks it. He is the one who has not been that healthy. It is because of his not being able to run and quiting basketball as a high school sophomore that convinced me that something was not right. That same year was when I saw crystalized salt on his tennis uniform, but didn't know it was a symptom of anything. He played tennis for 4 years and he is a great surfer ,scurfer (rides surf board behind boat) and wake boards too. When he gave up basketball it was because in the practices when they would run continuosly he would get sick and vomit. My last MD always made me feel I wanted him to be like his sister. My son will tell you that is not the case. He feels I am the only one who believes he has somthing wrong. He has had three sweat tests 64,57,55. At our last visit they said his sinus look like CF however he is not under weight, a litttle chubby because he is not but 5'6" and eats all the time. His lungs are good and clear. He however has to take previcid ever morning and he has bad headaches alot. Both my children have for the most part been healthy children. We have had them in sports since birth. Always spent summers swimming and active. They are both very close to me and we talk about everything. They neither one like smoking and have never been around second hand except for the occasional sleep over at friends homes through the years. My daughter is currently in Chile studing Spanish. My son is working right now at a local University and is getting ready to attend college. Baylorcrew07 I see you run in you picture. If you are ever interested in running in the NC White Lake Triathlon you have a free place to stay- just let me know.
Someone told me this week it has become one of the largest races in NC. Well again thanks to everyone who has given me your info. If my son were to end up not having CF I will know it was meant for me to take this journey to meet so many wonderful people at this sight. Peace and love to you all!!

 

[H2OSPORTSMOM]

Thanks to you all for your input. It should help us alot next CF Center visit. I actually faxed my insurance info to Ambrey today for them to check on if it will pay. Baylorcrew07 my husband and I have been together 25 years. We have a gorgeous 5'1" 20 yr old college junior daughter. She plays intermural now but in junior high and high she played Volleyball, Basketball and Fast pitch Softball. She was awarded the highest athletic award given by her high school. Even turned down two colleges who offered her ironically basketball scholarships. We laugh because she is only 5'1". She can run fast and is very healthy as far as we know. Her younger brother is a dreamy surfer and he looks it. He is the one who has not been that healthy. It is because of his not being able to run and quiting basketball as a high school sophomore that convinced me that something was not right. That same year was when I saw crystalized salt on his tennis uniform, but didn't know it was a symptom of anything. He played tennis for 4 years and he is a great surfer ,scurfer (rides surf board behind boat) and wake boards too. When he gave up basketball it was because in the practices when they would run continuosly he would get sick and vomit. My last MD always made me feel I wanted him to be like his sister. My son will tell you that is not the case. He feels I am the only one who believes he has somthing wrong. He has had three sweat tests 64,57,55. At our last visit they said his sinus look like CF however he is not under weight, a litttle chubby because he is not but 5'6" and eats all the time. His lungs are good and clear. He however has to take previcid ever morning and he has bad headaches alot. Both my children have for the most part been healthy children. We have had them in sports since birth. Always spent summers swimming and active. They are both very close to me and we talk about everything. They neither one like smoking and have never been around second hand except for the occasional sleep over at friends homes through the years. My daughter is currently in Chile studing Spanish. My son is working right now at a local University and is getting ready to attend college. Baylorcrew07 I see you run in you picture. If you are ever interested in running in the NC White Lake Triathlon you have a free place to stay- just let me know.
Someone told me this week it has become one of the largest races in NC. Well again thanks to everyone who has given me your info. If my son were to end up not having CF I will know it was meant for me to take this journey to meet so many wonderful people at this sight. Peace and love to you all!!

 

[mom2lillian]

your sons sweat test is positive, greater than 60 is positive. Why is he not yet diagnosed? IT is irrelevant that they other two are not +, they are very hgih borderline, that combined with a postivie and symptoms should be a diagnosis IMO. Definately insist on the ambry test, quest can also do a test I am told. If your insurance initially denies the test persist, persist persist, I was told absolutely no coverage multiple times and spent hours on the phone working with doctor, ambry, insurance etc.

 

[mom2lillian]

your sons sweat test is positive, greater than 60 is positive. Why is he not yet diagnosed? IT is irrelevant that they other two are not +, they are very hgih borderline, that combined with a postivie and symptoms should be a diagnosis IMO. Definately insist on the ambry test, quest can also do a test I am told. If your insurance initially denies the test persist, persist persist, I was told absolutely no coverage multiple times and spent hours on the phone working with doctor, ambry, insurance etc.

 

[mom2lillian]

your sons sweat test is positive, greater than 60 is positive. Why is he not yet diagnosed? IT is irrelevant that they other two are not +, they are very hgih borderline, that combined with a postivie and symptoms should be a diagnosis IMO. Definately insist on the ambry test, quest can also do a test I am told. If your insurance initially denies the test persist, persist persist, I was told absolutely no coverage multiple times and spent hours on the phone working with doctor, ambry, insurance etc.

 

[mom2lillian]

your sons sweat test is positive, greater than 60 is positive. Why is he not yet diagnosed? IT is irrelevant that they other two are not +, they are very hgih borderline, that combined with a postivie and symptoms should be a diagnosis IMO. Definately insist on the ambry test, quest can also do a test I am told. If your insurance initially denies the test persist, persist persist, I was told absolutely no coverage multiple times and spent hours on the phone working with doctor, ambry, insurance etc.

 

[mom2lillian]

your sons sweat test is positive, greater than 60 is positive. Why is he not yet diagnosed? IT is irrelevant that they other two are not +, they are very hgih borderline, that combined with a postivie and symptoms should be a diagnosis IMO. Definately insist on the ambry test, quest can also do a test I am told. If your insurance initially denies the test persist, persist persist, I was told absolutely no coverage multiple times and spent hours on the phone working with doctor, ambry, insurance etc.

 

[mom2lillian]

your sons sweat test is positive, greater than 60 is positive. Why is he not yet diagnosed? IT is irrelevant that they other two are not +, they are very hgih borderline, that combined with a postivie and symptoms should be a diagnosis IMO. Definately insist on the ambry test, quest can also do a test I am told. If your insurance initially denies the test persist, persist persist, I was told absolutely no coverage multiple times and spent hours on the phone working with doctor, ambry, insurance etc.

 

[H2OSPORTSMOM]

The CF Center I went to said that the first two tests were not done at a CF Center and that they were not adequate for diagnosis. I think at that point he thought his test at the center would be negative. Like I said my son looks very healthy. It was later on in the day after leaving the CF Center that they called and told us his test was 55 with them and that they wanted to check for 70 most common genes. They did say that out of approx. 500 patients they have two that have tested positive but currently have no lung involvememt. Again on the tests and the procedure of doing them there was very little diference in the two hospitals collection of sweat. The first gathered it on a little tube and the CF Center gathered it on gauze. In my opinion sweat is sweat. Is there any one out there that was first tested for the common 70 and neg. but further gene tests were positive ? Or any one who just has variant genes if that is possible?

 

[H2OSPORTSMOM]

The CF Center I went to said that the first two tests were not done at a CF Center and that they were not adequate for diagnosis. I think at that point he thought his test at the center would be negative. Like I said my son looks very healthy. It was later on in the day after leaving the CF Center that they called and told us his test was 55 with them and that they wanted to check for 70 most common genes. They did say that out of approx. 500 patients they have two that have tested positive but currently have no lung involvememt. Again on the tests and the procedure of doing them there was very little diference in the two hospitals collection of sweat. The first gathered it on a little tube and the CF Center gathered it on gauze. In my opinion sweat is sweat. Is there any one out there that was first tested for the common 70 and neg. but further gene tests were positive ? Or any one who just has variant genes if that is possible?

 

[H2OSPORTSMOM]

The CF Center I went to said that the first two tests were not done at a CF Center and that they were not adequate for diagnosis. I think at that point he thought his test at the center would be negative. Like I said my son looks very healthy. It was later on in the day after leaving the CF Center that they called and told us his test was 55 with them and that they wanted to check for 70 most common genes. They did say that out of approx. 500 patients they have two that have tested positive but currently have no lung involvememt. Again on the tests and the procedure of doing them there was very little diference in the two hospitals collection of sweat. The first gathered it on a little tube and the CF Center gathered it on gauze. In my opinion sweat is sweat. Is there any one out there that was first tested for the common 70 and neg. but further gene tests were positive ? Or any one who just has variant genes if that is possible?

 

[H2OSPORTSMOM]

The CF Center I went to said that the first two tests were not done at a CF Center and that they were not adequate for diagnosis. I think at that point he thought his test at the center would be negative. Like I said my son looks very healthy. It was later on in the day after leaving the CF Center that they called and told us his test was 55 with them and that they wanted to check for 70 most common genes. They did say that out of approx. 500 patients they have two that have tested positive but currently have no lung involvememt. Again on the tests and the procedure of doing them there was very little diference in the two hospitals collection of sweat. The first gathered it on a little tube and the CF Center gathered it on gauze. In my opinion sweat is sweat. Is there any one out there that was first tested for the common 70 and neg. but further gene tests were positive ? Or any one who just has variant genes if that is possible?