Sweat test

J

JazzysMom

New member
I dont know if "scientifically" sweat tests can change, but it would seem possible to me. Based on meds, hydration/dehydration, age etc.

I dont see how it cant change. I also know that we have quite a few members who had low sweat test results, but came back with 2 identified mutations from genetic testing.

Given that he is DDF508....dont really count on him continuing to show no symtpoms. Lungs & Digestive are linked to this mutation.

I wasnt diagnosed until 7 & after my diagnosis is when my lungs started showing symptoms.

I also think you are focusing too much on the sweat test results. Not sure why, but you have a diagosis so IMHO it doesnt really matter.

If you think the sweat test helps give an idea of what to expect it doesnt. Just like knowing what to expect from gene mutations. You can know the characteristics, but environment, compliance, attitude & plain old luck also contribute to the clinical outcome.

Good Luck & Welcome to the Site!
 
J

JazzysMom

New member
I dont know if "scientifically" sweat tests can change, but it would seem possible to me. Based on meds, hydration/dehydration, age etc.

I dont see how it cant change. I also know that we have quite a few members who had low sweat test results, but came back with 2 identified mutations from genetic testing.

Given that he is DDF508....dont really count on him continuing to show no symtpoms. Lungs & Digestive are linked to this mutation.

I wasnt diagnosed until 7 & after my diagnosis is when my lungs started showing symptoms.

I also think you are focusing too much on the sweat test results. Not sure why, but you have a diagosis so IMHO it doesnt really matter.

If you think the sweat test helps give an idea of what to expect it doesnt. Just like knowing what to expect from gene mutations. You can know the characteristics, but environment, compliance, attitude & plain old luck also contribute to the clinical outcome.

Good Luck & Welcome to the Site!
 
J

JazzysMom

New member
I dont know if "scientifically" sweat tests can change, but it would seem possible to me. Based on meds, hydration/dehydration, age etc.

I dont see how it cant change. I also know that we have quite a few members who had low sweat test results, but came back with 2 identified mutations from genetic testing.

Given that he is DDF508....dont really count on him continuing to show no symtpoms. Lungs & Digestive are linked to this mutation.

I wasnt diagnosed until 7 & after my diagnosis is when my lungs started showing symptoms.

I also think you are focusing too much on the sweat test results. Not sure why, but you have a diagosis so IMHO it doesnt really matter.

If you think the sweat test helps give an idea of what to expect it doesnt. Just like knowing what to expect from gene mutations. You can know the characteristics, but environment, compliance, attitude & plain old luck also contribute to the clinical outcome.

Good Luck & Welcome to the Site!
 
J

JazzysMom

New member
I dont know if "scientifically" sweat tests can change, but it would seem possible to me. Based on meds, hydration/dehydration, age etc.

I dont see how it cant change. I also know that we have quite a few members who had low sweat test results, but came back with 2 identified mutations from genetic testing.

Given that he is DDF508....dont really count on him continuing to show no symtpoms. Lungs & Digestive are linked to this mutation.

I wasnt diagnosed until 7 & after my diagnosis is when my lungs started showing symptoms.

I also think you are focusing too much on the sweat test results. Not sure why, but you have a diagosis so IMHO it doesnt really matter.

If you think the sweat test helps give an idea of what to expect it doesnt. Just like knowing what to expect from gene mutations. You can know the characteristics, but environment, compliance, attitude & plain old luck also contribute to the clinical outcome.

Good Luck & Welcome to the Site!
 
J

JazzysMom

New member
I dont know if "scientifically" sweat tests can change, but it would seem possible to me. Based on meds, hydration/dehydration, age etc.
<br />
<br />I dont see how it cant change. I also know that we have quite a few members who had low sweat test results, but came back with 2 identified mutations from genetic testing.
<br />
<br />Given that he is DDF508....dont really count on him continuing to show no symtpoms. Lungs & Digestive are linked to this mutation.
<br />
<br />I wasnt diagnosed until 7 & after my diagnosis is when my lungs started showing symptoms.
<br />
<br />I also think you are focusing too much on the sweat test results. Not sure why, but you have a diagosis so IMHO it doesnt really matter.
<br />
<br />If you think the sweat test helps give an idea of what to expect it doesnt. Just like knowing what to expect from gene mutations. You can know the characteristics, but environment, compliance, attitude & plain old luck also contribute to the clinical outcome.
<br />
<br />Good Luck & Welcome to the Site!
 
B

Buckeye

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>laurakaura</b></i>

however everyone is sort of confused by his situation because he passed the sweat test and isnt showing any symptoms anywhere. they are thinking he is atypical or a very mild case which i would love for it to stay. We were told he has two delta 508 genes which are two of the more severe ones. but the doctor cant figure out why he is doing so well.

</end quote></div>

Are you going to a CF Clinic? The reason I ask is if it is a Pediatrician or some other regular doctor that is saying they are confused about why he is doing well, why he isn't showing any symptoms, that he's a mild case, etc. then that is because <b>they don't understand CF</b>. Most doctors do not understand it unless they specialize in it - it is a very complex disease and most doctors have only heard about it in medical school and even then what they have learned is outdated.
 
B

Buckeye

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>laurakaura</b></i>

however everyone is sort of confused by his situation because he passed the sweat test and isnt showing any symptoms anywhere. they are thinking he is atypical or a very mild case which i would love for it to stay. We were told he has two delta 508 genes which are two of the more severe ones. but the doctor cant figure out why he is doing so well.

</end quote></div>

Are you going to a CF Clinic? The reason I ask is if it is a Pediatrician or some other regular doctor that is saying they are confused about why he is doing well, why he isn't showing any symptoms, that he's a mild case, etc. then that is because <b>they don't understand CF</b>. Most doctors do not understand it unless they specialize in it - it is a very complex disease and most doctors have only heard about it in medical school and even then what they have learned is outdated.
 
B

Buckeye

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>laurakaura</b></i>

however everyone is sort of confused by his situation because he passed the sweat test and isnt showing any symptoms anywhere. they are thinking he is atypical or a very mild case which i would love for it to stay. We were told he has two delta 508 genes which are two of the more severe ones. but the doctor cant figure out why he is doing so well.

</end quote></div>

Are you going to a CF Clinic? The reason I ask is if it is a Pediatrician or some other regular doctor that is saying they are confused about why he is doing well, why he isn't showing any symptoms, that he's a mild case, etc. then that is because <b>they don't understand CF</b>. Most doctors do not understand it unless they specialize in it - it is a very complex disease and most doctors have only heard about it in medical school and even then what they have learned is outdated.
 
B

Buckeye

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>laurakaura</b></i>

however everyone is sort of confused by his situation because he passed the sweat test and isnt showing any symptoms anywhere. they are thinking he is atypical or a very mild case which i would love for it to stay. We were told he has two delta 508 genes which are two of the more severe ones. but the doctor cant figure out why he is doing so well.

</end quote>

Are you going to a CF Clinic? The reason I ask is if it is a Pediatrician or some other regular doctor that is saying they are confused about why he is doing well, why he isn't showing any symptoms, that he's a mild case, etc. then that is because <b>they don't understand CF</b>. Most doctors do not understand it unless they specialize in it - it is a very complex disease and most doctors have only heard about it in medical school and even then what they have learned is outdated.
 
B

Buckeye

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>laurakaura</b></i>

however everyone is sort of confused by his situation because he passed the sweat test and isnt showing any symptoms anywhere. they are thinking he is atypical or a very mild case which i would love for it to stay. We were told he has two delta 508 genes which are two of the more severe ones. but the doctor cant figure out why he is doing so well.

</end quote>

Are you going to a CF Clinic? The reason I ask is if it is a Pediatrician or some other regular doctor that is saying they are confused about why he is doing well, why he isn't showing any symptoms, that he's a mild case, etc. then that is because <b>they don't understand CF</b>. Most doctors do not understand it unless they specialize in it - it is a very complex disease and most doctors have only heard about it in medical school and even then what they have learned is outdated.
 
L

LouLou

New member
I would discourage them from being so skeptical about your child's case if they want to continue getting paid :) Get a copy of the genetic test results and move on. If insurance learns of the fact that there's doubt about the diagnosis they may start denying his cf coverage. Trust me my son has cf. He's 2 and has no symptoms. Lay low. Go to clinic every 3 months and do pt and albuterol preventative. Enzymes if he shows any PI. Keep your fingers crossed that he makes it even just one more clinic visit with no symptoms.

My son has G551D and S1235R mutations and sweat tested an 11 and a 12 when he was 8 weeks and then at 21 months he tested an 11 and an 11. The two numbers are for each arm. The first numbers were done at CHOP and 2nd set at Yale. Luckily both clinics are very good ones and neither got hung up on the fact that he wasn't/isn't showing signs. His presence on clinic day is a breath of fresh air for everyone. They are very hopeful for his future largely because they know we take such good care of him. Prevention is key.

Oh and by the way I have cf too. THat's why we found out about his cf. I have G551D and DF508 with a sweat test of 89 (without V770!)
 
L

LouLou

New member
I would discourage them from being so skeptical about your child's case if they want to continue getting paid :) Get a copy of the genetic test results and move on. If insurance learns of the fact that there's doubt about the diagnosis they may start denying his cf coverage. Trust me my son has cf. He's 2 and has no symptoms. Lay low. Go to clinic every 3 months and do pt and albuterol preventative. Enzymes if he shows any PI. Keep your fingers crossed that he makes it even just one more clinic visit with no symptoms.

My son has G551D and S1235R mutations and sweat tested an 11 and a 12 when he was 8 weeks and then at 21 months he tested an 11 and an 11. The two numbers are for each arm. The first numbers were done at CHOP and 2nd set at Yale. Luckily both clinics are very good ones and neither got hung up on the fact that he wasn't/isn't showing signs. His presence on clinic day is a breath of fresh air for everyone. They are very hopeful for his future largely because they know we take such good care of him. Prevention is key.

Oh and by the way I have cf too. THat's why we found out about his cf. I have G551D and DF508 with a sweat test of 89 (without V770!)
 
L

LouLou

New member
I would discourage them from being so skeptical about your child's case if they want to continue getting paid :) Get a copy of the genetic test results and move on. If insurance learns of the fact that there's doubt about the diagnosis they may start denying his cf coverage. Trust me my son has cf. He's 2 and has no symptoms. Lay low. Go to clinic every 3 months and do pt and albuterol preventative. Enzymes if he shows any PI. Keep your fingers crossed that he makes it even just one more clinic visit with no symptoms.

My son has G551D and S1235R mutations and sweat tested an 11 and a 12 when he was 8 weeks and then at 21 months he tested an 11 and an 11. The two numbers are for each arm. The first numbers were done at CHOP and 2nd set at Yale. Luckily both clinics are very good ones and neither got hung up on the fact that he wasn't/isn't showing signs. His presence on clinic day is a breath of fresh air for everyone. They are very hopeful for his future largely because they know we take such good care of him. Prevention is key.

Oh and by the way I have cf too. THat's why we found out about his cf. I have G551D and DF508 with a sweat test of 89 (without V770!)
 
L

LouLou

New member
I would discourage them from being so skeptical about your child's case if they want to continue getting paid :) Get a copy of the genetic test results and move on. If insurance learns of the fact that there's doubt about the diagnosis they may start denying his cf coverage. Trust me my son has cf. He's 2 and has no symptoms. Lay low. Go to clinic every 3 months and do pt and albuterol preventative. Enzymes if he shows any PI. Keep your fingers crossed that he makes it even just one more clinic visit with no symptoms.

My son has G551D and S1235R mutations and sweat tested an 11 and a 12 when he was 8 weeks and then at 21 months he tested an 11 and an 11. The two numbers are for each arm. The first numbers were done at CHOP and 2nd set at Yale. Luckily both clinics are very good ones and neither got hung up on the fact that he wasn't/isn't showing signs. His presence on clinic day is a breath of fresh air for everyone. They are very hopeful for his future largely because they know we take such good care of him. Prevention is key.

Oh and by the way I have cf too. THat's why we found out about his cf. I have G551D and DF508 with a sweat test of 89 (without V770!)
 
L

LouLou

New member
I would discourage them from being so skeptical about your child's case if they want to continue getting paid :) Get a copy of the genetic test results and move on. If insurance learns of the fact that there's doubt about the diagnosis they may start denying his cf coverage. Trust me my son has cf. He's 2 and has no symptoms. Lay low. Go to clinic every 3 months and do pt and albuterol preventative. Enzymes if he shows any PI. Keep your fingers crossed that he makes it even just one more clinic visit with no symptoms.
<br />
<br />My son has G551D and S1235R mutations and sweat tested an 11 and a 12 when he was 8 weeks and then at 21 months he tested an 11 and an 11. The two numbers are for each arm. The first numbers were done at CHOP and 2nd set at Yale. Luckily both clinics are very good ones and neither got hung up on the fact that he wasn't/isn't showing signs. His presence on clinic day is a breath of fresh air for everyone. They are very hopeful for his future largely because they know we take such good care of him. Prevention is key.
<br />
<br />Oh and by the way I have cf too. THat's why we found out about his cf. I have G551D and DF508 with a sweat test of 89 (without V770!)
 
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