As a CF carrier, do you suffer any of the CF symptoms?

[stringbean]

We adopted my daughter, so as far as I know, I'm not a CF carrier. My daughter is seven and is basically healthy, but just can't put on any weight so our pediatrician recommended we look into reasons why. She tested negative for food allergies and celiac.

Her two sweat tests were borderline and she has one (rare) mutation. So the report said she is not considered to have CF, which is very good news. However, she is pancreatic insufficient and I know that's caused by <i>something</i>. Last week we saw a geneticist and she ruled out a lot of conditions, such as Johansson Blizzard Syndrome, which our gastroenterologist thought could explain the PI.

So I'm wondering for all of you who are carriers, do you have any of the same symptoms that your kids are suffering? My daughter has a constant nasal drip, which makes her cough (a little bit) every morning and clear her throat all day. Her lung x-ray was "not clear" but that was all the pulmonologist disclosed -- but whatever was "not clear" did not make her think my daughter has CF.

OR... For those of you who were diagnosed as a kid or teen (or maybe an adult) were you often sick, but no one knew why, or where you mostly healthy and then the symptoms began to appear as you grew older?

I can't quite figure out why my daughter has PI, but no accompanying disease that would explain it. Could it be explained just by virtue of being a CF carrier or am I possibly seeing the beginning stages of CF?

Thanks!

 

[stringbean]

We adopted my daughter, so as far as I know, I'm not a CF carrier. My daughter is seven and is basically healthy, but just can't put on any weight so our pediatrician recommended we look into reasons why. She tested negative for food allergies and celiac.

Her two sweat tests were borderline and she has one (rare) mutation. So the report said she is not considered to have CF, which is very good news. However, she is pancreatic insufficient and I know that's caused by <i>something</i>. Last week we saw a geneticist and she ruled out a lot of conditions, such as Johansson Blizzard Syndrome, which our gastroenterologist thought could explain the PI.

So I'm wondering for all of you who are carriers, do you have any of the same symptoms that your kids are suffering? My daughter has a constant nasal drip, which makes her cough (a little bit) every morning and clear her throat all day. Her lung x-ray was "not clear" but that was all the pulmonologist disclosed -- but whatever was "not clear" did not make her think my daughter has CF.

OR... For those of you who were diagnosed as a kid or teen (or maybe an adult) were you often sick, but no one knew why, or where you mostly healthy and then the symptoms began to appear as you grew older?

I can't quite figure out why my daughter has PI, but no accompanying disease that would explain it. Could it be explained just by virtue of being a CF carrier or am I possibly seeing the beginning stages of CF?

Thanks!

 

[stringbean]

We adopted my daughter, so as far as I know, I'm not a CF carrier. My daughter is seven and is basically healthy, but just can't put on any weight so our pediatrician recommended we look into reasons why. She tested negative for food allergies and celiac.

Her two sweat tests were borderline and she has one (rare) mutation. So the report said she is not considered to have CF, which is very good news. However, she is pancreatic insufficient and I know that's caused by <i>something</i>. Last week we saw a geneticist and she ruled out a lot of conditions, such as Johansson Blizzard Syndrome, which our gastroenterologist thought could explain the PI.

So I'm wondering for all of you who are carriers, do you have any of the same symptoms that your kids are suffering? My daughter has a constant nasal drip, which makes her cough (a little bit) every morning and clear her throat all day. Her lung x-ray was "not clear" but that was all the pulmonologist disclosed -- but whatever was "not clear" did not make her think my daughter has CF.

OR... For those of you who were diagnosed as a kid or teen (or maybe an adult) were you often sick, but no one knew why, or where you mostly healthy and then the symptoms began to appear as you grew older?

I can't quite figure out why my daughter has PI, but no accompanying disease that would explain it. Could it be explained just by virtue of being a CF carrier or am I possibly seeing the beginning stages of CF?

Thanks!

 

[stringbean]

We adopted my daughter, so as far as I know, I'm not a CF carrier. My daughter is seven and is basically healthy, but just can't put on any weight so our pediatrician recommended we look into reasons why. She tested negative for food allergies and celiac.

Her two sweat tests were borderline and she has one (rare) mutation. So the report said she is not considered to have CF, which is very good news. However, she is pancreatic insufficient and I know that's caused by <i>something</i>. Last week we saw a geneticist and she ruled out a lot of conditions, such as Johansson Blizzard Syndrome, which our gastroenterologist thought could explain the PI.

So I'm wondering for all of you who are carriers, do you have any of the same symptoms that your kids are suffering? My daughter has a constant nasal drip, which makes her cough (a little bit) every morning and clear her throat all day. Her lung x-ray was "not clear" but that was all the pulmonologist disclosed -- but whatever was "not clear" did not make her think my daughter has CF.

OR... For those of you who were diagnosed as a kid or teen (or maybe an adult) were you often sick, but no one knew why, or where you mostly healthy and then the symptoms began to appear as you grew older?

I can't quite figure out why my daughter has PI, but no accompanying disease that would explain it. Could it be explained just by virtue of being a CF carrier or am I possibly seeing the beginning stages of CF?

Thanks!

 

[stringbean]

We adopted my daughter, so as far as I know, I'm not a CF carrier. My daughter is seven and is basically healthy, but just can't put on any weight so our pediatrician recommended we look into reasons why. She tested negative for food allergies and celiac.
<br />
<br />Her two sweat tests were borderline and she has one (rare) mutation. So the report said she is not considered to have CF, which is very good news. However, she is pancreatic insufficient and I know that's caused by <i>something</i>. Last week we saw a geneticist and she ruled out a lot of conditions, such as Johansson Blizzard Syndrome, which our gastroenterologist thought could explain the PI.
<br />
<br />So I'm wondering for all of you who are carriers, do you have any of the same symptoms that your kids are suffering? My daughter has a constant nasal drip, which makes her cough (a little bit) every morning and clear her throat all day. Her lung x-ray was "not clear" but that was all the pulmonologist disclosed -- but whatever was "not clear" did not make her think my daughter has CF.
<br />
<br />OR... For those of you who were diagnosed as a kid or teen (or maybe an adult) were you often sick, but no one knew why, or where you mostly healthy and then the symptoms began to appear as you grew older?
<br />
<br />I can't quite figure out why my daughter has PI, but no accompanying disease that would explain it. Could it be explained just by virtue of being a CF carrier or am I possibly seeing the beginning stages of CF?
<br />
<br />Thanks!

 

[ashmomo]

Sounds like she has CF, but from what I have heard, a carrier will not have symptoms. Maybe she has another rare mutation that was not found? What kind of testing did they do to find that other gene they found?

 

[ashmomo]

Sounds like she has CF, but from what I have heard, a carrier will not have symptoms. Maybe she has another rare mutation that was not found? What kind of testing did they do to find that other gene they found?

 

[ashmomo]

Sounds like she has CF, but from what I have heard, a carrier will not have symptoms. Maybe she has another rare mutation that was not found? What kind of testing did they do to find that other gene they found?

 

[ashmomo]

Sounds like she has CF, but from what I have heard, a carrier will not have symptoms. Maybe she has another rare mutation that was not found? What kind of testing did they do to find that other gene they found?

 

[ashmomo]

Sounds like she has CF, but from what I have heard, a carrier will not have symptoms. Maybe she has another rare mutation that was not found? What kind of testing did they do to find that other gene they found?

 

[stringbean]

I should probably clarify my question... I don't mean to sound like I'm unable to face the truth and grasping at straws, trying to deny that my daughter may have CF. We had an amplified panel (?) done, so it covered as much as they can cover at the moment. So if she has a second mutation, it is an undiscovered one...

Actually, I'm the one that believes my daughter has CF, but the pulmonologist says absolutely no "at this time" (Can she have it at another time?) She told me to get a second opinion. And since we had an appointment with a geneticist, I figured I would ask her about CF or any other condition that could explain the PI.

The geneticist was the one who said that they are discovering new things about CF all the time and there is a theory that carriers may exhibit some of the symptoms. I figured that there are a lot of CF carriers who visit this site, so I was curious if having symptoms was part of their experience. I'm guessing no, but I have no basis for that belief.

I am assuming that my daughter actually has CF and maybe she will only have the PI part of it, but I don't want to ignore the possibility of more issues presenting themselves as she gets older. So I was wondering about those who were diagnosed as kids. Did you have symptoms, but no one ever put it all together or did some or all of your symptoms begin to appear at a later age?

None of it makes any sense to me, but until my daughter's sweat test came back borderline in January, I didn't know anything about CF. So I feel kind of silly thinking I know more than the doctor that spend everyday working with CF patients -- but I really think my daughter has it even if her doctor doesn't.

 

[stringbean]

I should probably clarify my question... I don't mean to sound like I'm unable to face the truth and grasping at straws, trying to deny that my daughter may have CF. We had an amplified panel (?) done, so it covered as much as they can cover at the moment. So if she has a second mutation, it is an undiscovered one...

Actually, I'm the one that believes my daughter has CF, but the pulmonologist says absolutely no "at this time" (Can she have it at another time?) She told me to get a second opinion. And since we had an appointment with a geneticist, I figured I would ask her about CF or any other condition that could explain the PI.

The geneticist was the one who said that they are discovering new things about CF all the time and there is a theory that carriers may exhibit some of the symptoms. I figured that there are a lot of CF carriers who visit this site, so I was curious if having symptoms was part of their experience. I'm guessing no, but I have no basis for that belief.

I am assuming that my daughter actually has CF and maybe she will only have the PI part of it, but I don't want to ignore the possibility of more issues presenting themselves as she gets older. So I was wondering about those who were diagnosed as kids. Did you have symptoms, but no one ever put it all together or did some or all of your symptoms begin to appear at a later age?

None of it makes any sense to me, but until my daughter's sweat test came back borderline in January, I didn't know anything about CF. So I feel kind of silly thinking I know more than the doctor that spend everyday working with CF patients -- but I really think my daughter has it even if her doctor doesn't.

 

[stringbean]

I should probably clarify my question... I don't mean to sound like I'm unable to face the truth and grasping at straws, trying to deny that my daughter may have CF. We had an amplified panel (?) done, so it covered as much as they can cover at the moment. So if she has a second mutation, it is an undiscovered one...

Actually, I'm the one that believes my daughter has CF, but the pulmonologist says absolutely no "at this time" (Can she have it at another time?) She told me to get a second opinion. And since we had an appointment with a geneticist, I figured I would ask her about CF or any other condition that could explain the PI.

The geneticist was the one who said that they are discovering new things about CF all the time and there is a theory that carriers may exhibit some of the symptoms. I figured that there are a lot of CF carriers who visit this site, so I was curious if having symptoms was part of their experience. I'm guessing no, but I have no basis for that belief.

I am assuming that my daughter actually has CF and maybe she will only have the PI part of it, but I don't want to ignore the possibility of more issues presenting themselves as she gets older. So I was wondering about those who were diagnosed as kids. Did you have symptoms, but no one ever put it all together or did some or all of your symptoms begin to appear at a later age?

None of it makes any sense to me, but until my daughter's sweat test came back borderline in January, I didn't know anything about CF. So I feel kind of silly thinking I know more than the doctor that spend everyday working with CF patients -- but I really think my daughter has it even if her doctor doesn't.

 

[stringbean]

I should probably clarify my question... I don't mean to sound like I'm unable to face the truth and grasping at straws, trying to deny that my daughter may have CF. We had an amplified panel (?) done, so it covered as much as they can cover at the moment. So if she has a second mutation, it is an undiscovered one...

Actually, I'm the one that believes my daughter has CF, but the pulmonologist says absolutely no "at this time" (Can she have it at another time?) She told me to get a second opinion. And since we had an appointment with a geneticist, I figured I would ask her about CF or any other condition that could explain the PI.

The geneticist was the one who said that they are discovering new things about CF all the time and there is a theory that carriers may exhibit some of the symptoms. I figured that there are a lot of CF carriers who visit this site, so I was curious if having symptoms was part of their experience. I'm guessing no, but I have no basis for that belief.

I am assuming that my daughter actually has CF and maybe she will only have the PI part of it, but I don't want to ignore the possibility of more issues presenting themselves as she gets older. So I was wondering about those who were diagnosed as kids. Did you have symptoms, but no one ever put it all together or did some or all of your symptoms begin to appear at a later age?

None of it makes any sense to me, but until my daughter's sweat test came back borderline in January, I didn't know anything about CF. So I feel kind of silly thinking I know more than the doctor that spend everyday working with CF patients -- but I really think my daughter has it even if her doctor doesn't.

 

[stringbean]

I should probably clarify my question... I don't mean to sound like I'm unable to face the truth and grasping at straws, trying to deny that my daughter may have CF. We had an amplified panel (?) done, so it covered as much as they can cover at the moment. So if she has a second mutation, it is an undiscovered one...
<br />
<br />Actually, I'm the one that believes my daughter has CF, but the pulmonologist says absolutely no "at this time" (Can she have it at another time?) She told me to get a second opinion. And since we had an appointment with a geneticist, I figured I would ask her about CF or any other condition that could explain the PI.
<br />
<br />The geneticist was the one who said that they are discovering new things about CF all the time and there is a theory that carriers may exhibit some of the symptoms. I figured that there are a lot of CF carriers who visit this site, so I was curious if having symptoms was part of their experience. I'm guessing no, but I have no basis for that belief.
<br />
<br />I am assuming that my daughter actually has CF and maybe she will only have the PI part of it, but I don't want to ignore the possibility of more issues presenting themselves as she gets older. So I was wondering about those who were diagnosed as kids. Did you have symptoms, but no one ever put it all together or did some or all of your symptoms begin to appear at a later age?
<br />
<br />None of it makes any sense to me, but until my daughter's sweat test came back borderline in January, I didn't know anything about CF. So I feel kind of silly thinking I know more than the doctor that spend everyday working with CF patients -- but I really think my daughter has it even if her doctor doesn't.

 

[JazzysMom]

This has been in ??? for some time. Some people even think that the carriers that exhibit severe symtptoms are actually undiagnosed CFers due to undiscovered genes.

Given that you daughter has a rare mutation, but yet one that is actually discovered....IMHO its safe to say she probably has another rare one that isnt discovered yet.

I was diagnosed at 7 years old after tons of allergy testing due to the EAT/CRAMPS/STINKY POOP SYNDROM that plagued me for years.

I was like a new kid once I "failed" my sweat test & was put on enzymes. My lungs did present symtpoms until after my diagnosis tho.

Was she tested for Schwachman Syndrom? Its also genetic & has the PI aspect. Given that she has a rare CF gene tho, I would stick with the CF.

GOod Luck!

 

[JazzysMom]

This has been in ??? for some time. Some people even think that the carriers that exhibit severe symtptoms are actually undiagnosed CFers due to undiscovered genes.

Given that you daughter has a rare mutation, but yet one that is actually discovered....IMHO its safe to say she probably has another rare one that isnt discovered yet.

I was diagnosed at 7 years old after tons of allergy testing due to the EAT/CRAMPS/STINKY POOP SYNDROM that plagued me for years.

I was like a new kid once I "failed" my sweat test & was put on enzymes. My lungs did present symtpoms until after my diagnosis tho.

Was she tested for Schwachman Syndrom? Its also genetic & has the PI aspect. Given that she has a rare CF gene tho, I would stick with the CF.

GOod Luck!

 

[JazzysMom]

This has been in ??? for some time. Some people even think that the carriers that exhibit severe symtptoms are actually undiagnosed CFers due to undiscovered genes.

Given that you daughter has a rare mutation, but yet one that is actually discovered....IMHO its safe to say she probably has another rare one that isnt discovered yet.

I was diagnosed at 7 years old after tons of allergy testing due to the EAT/CRAMPS/STINKY POOP SYNDROM that plagued me for years.

I was like a new kid once I "failed" my sweat test & was put on enzymes. My lungs did present symtpoms until after my diagnosis tho.

Was she tested for Schwachman Syndrom? Its also genetic & has the PI aspect. Given that she has a rare CF gene tho, I would stick with the CF.

GOod Luck!

 

[JazzysMom]

This has been in ??? for some time. Some people even think that the carriers that exhibit severe symtptoms are actually undiagnosed CFers due to undiscovered genes.

Given that you daughter has a rare mutation, but yet one that is actually discovered....IMHO its safe to say she probably has another rare one that isnt discovered yet.

I was diagnosed at 7 years old after tons of allergy testing due to the EAT/CRAMPS/STINKY POOP SYNDROM that plagued me for years.

I was like a new kid once I "failed" my sweat test & was put on enzymes. My lungs did present symtpoms until after my diagnosis tho.

Was she tested for Schwachman Syndrom? Its also genetic & has the PI aspect. Given that she has a rare CF gene tho, I would stick with the CF.

GOod Luck!

 

[JazzysMom]

This has been in ??? for some time. Some people even think that the carriers that exhibit severe symtptoms are actually undiagnosed CFers due to undiscovered genes.
<br />
<br />Given that you daughter has a rare mutation, but yet one that is actually discovered....IMHO its safe to say she probably has another rare one that isnt discovered yet.
<br />
<br />I was diagnosed at 7 years old after tons of allergy testing due to the EAT/CRAMPS/STINKY POOP SYNDROM that plagued me for years.
<br />
<br />I was like a new kid once I "failed" my sweat test & was put on enzymes. My lungs did present symtpoms until after my diagnosis tho.
<br />
<br />Was she tested for Schwachman Syndrom? Its also genetic & has the PI aspect. Given that she has a rare CF gene tho, I would stick with the CF.
<br />
<br />GOod Luck!