Going in for a sweat test

M

mom2three

New member
Our daughter has been very sick this past year (actually most of her life) she is soon to be 7 (in Feb) she was about 8wks premature but not hospitalized although she went home on the walabie system (sry ? sp) due to jaundice. She's always had bowel problems, and breathing problems, wheezing etc. but until we recently were relocated (husband is with dept. of defense) doctors always just said "she has a cold or virus" last Aug is when we moved ~ by Sept we had found a new pediatrican ~ who had questions herself, our daughter had unusually large adnoids tonsils, wheezing, etc. she questioned us we told her previous peds had never really done anything except give us anti's or the "just take tylenol" in Nov she was diagnosed with Asthma, Corn, Peanut and wheat allergies in Feb. she was hospitalized with Pneumonia, in April she had her tonsils and addies taken out, over the summer she was in the ER for breathing problems, we started to really keep track of peek flow, snoring, wheezing and humming (when she starts to have a hard time breathing she will hum) we noticed that after a breathing treatment she can breath alot better ~ so her pedi referred us to a pulminologist (that was yesterday 11/2) he did a series of breathing tests looked at her records and chest xrays from this last year ~ and then out of no where ~ he said "you need to take her for a sweat test" ~ he tried to reassure us that is would probably come back negative ~ but he kept mentioning the fact of her small frame, only 6 and barely weighing 44lbs (we've always called her our petite princess) ~ and that she's got "spots" on her lungs ~ can someone tell me if this sounds familiar or am I feaking out over nothing?
Her signs: premature, abornally large foul bowel movements since birth (for about 6 months she lived off of suppositories because she had such a hard time going that was at about 3) she has food allergies, asthma, pneumonia history, humming, adnoids and tonsils removed, this goes on, we are at a stand still right now ~ but I found this sight and just wanted someone else in our situation to explain the test / how can a child not be diagnosed until almost 7 ~ thank you
 
M

mom2three

New member
Our daughter has been very sick this past year (actually most of her life) she is soon to be 7 (in Feb) she was about 8wks premature but not hospitalized although she went home on the walabie system (sry ? sp) due to jaundice. She's always had bowel problems, and breathing problems, wheezing etc. but until we recently were relocated (husband is with dept. of defense) doctors always just said "she has a cold or virus" last Aug is when we moved ~ by Sept we had found a new pediatrican ~ who had questions herself, our daughter had unusually large adnoids tonsils, wheezing, etc. she questioned us we told her previous peds had never really done anything except give us anti's or the "just take tylenol" in Nov she was diagnosed with Asthma, Corn, Peanut and wheat allergies in Feb. she was hospitalized with Pneumonia, in April she had her tonsils and addies taken out, over the summer she was in the ER for breathing problems, we started to really keep track of peek flow, snoring, wheezing and humming (when she starts to have a hard time breathing she will hum) we noticed that after a breathing treatment she can breath alot better ~ so her pedi referred us to a pulminologist (that was yesterday 11/2) he did a series of breathing tests looked at her records and chest xrays from this last year ~ and then out of no where ~ he said "you need to take her for a sweat test" ~ he tried to reassure us that is would probably come back negative ~ but he kept mentioning the fact of her small frame, only 6 and barely weighing 44lbs (we've always called her our petite princess) ~ and that she's got "spots" on her lungs ~ can someone tell me if this sounds familiar or am I feaking out over nothing?
Her signs: premature, abornally large foul bowel movements since birth (for about 6 months she lived off of suppositories because she had such a hard time going that was at about 3) she has food allergies, asthma, pneumonia history, humming, adnoids and tonsils removed, this goes on, we are at a stand still right now ~ but I found this sight and just wanted someone else in our situation to explain the test / how can a child not be diagnosed until almost 7 ~ thank you
 
M

mom2three

New member
Our daughter has been very sick this past year (actually most of her life) she is soon to be 7 (in Feb) she was about 8wks premature but not hospitalized although she went home on the walabie system (sry ? sp) due to jaundice. She's always had bowel problems, and breathing problems, wheezing etc. but until we recently were relocated (husband is with dept. of defense) doctors always just said "she has a cold or virus" last Aug is when we moved ~ by Sept we had found a new pediatrican ~ who had questions herself, our daughter had unusually large adnoids tonsils, wheezing, etc. she questioned us we told her previous peds had never really done anything except give us anti's or the "just take tylenol" in Nov she was diagnosed with Asthma, Corn, Peanut and wheat allergies in Feb. she was hospitalized with Pneumonia, in April she had her tonsils and addies taken out, over the summer she was in the ER for breathing problems, we started to really keep track of peek flow, snoring, wheezing and humming (when she starts to have a hard time breathing she will hum) we noticed that after a breathing treatment she can breath alot better ~ so her pedi referred us to a pulminologist (that was yesterday 11/2) he did a series of breathing tests looked at her records and chest xrays from this last year ~ and then out of no where ~ he said "you need to take her for a sweat test" ~ he tried to reassure us that is would probably come back negative ~ but he kept mentioning the fact of her small frame, only 6 and barely weighing 44lbs (we've always called her our petite princess) ~ and that she's got "spots" on her lungs ~ can someone tell me if this sounds familiar or am I feaking out over nothing?
<br />Her signs: premature, abornally large foul bowel movements since birth (for about 6 months she lived off of suppositories because she had such a hard time going that was at about 3) she has food allergies, asthma, pneumonia history, humming, adnoids and tonsils removed, this goes on, we are at a stand still right now ~ but I found this sight and just wanted someone else in our situation to explain the test / how can a child not be diagnosed until almost 7 ~ thank you
 
R

Ratatosk

Administrator
Staff member
I'm sorry you're going through this, though it sounds like this new doctor is on the ball and hopefully you'll get some answers. She does seem to have CF-like symptoms. It's not something doctors usually look for or are familiar with. There are several people on this site who were misdiagnosed as having asthma.

DS is 7 and was diagnosed because he was born with a bowel obstruction due to Meconium Illeus. No family history.

Have you noticed if her stools are better if she eats something that isn't very high in fat such as fruit? Does she "taste" salty when you kiss her? Does she devlop salt crystals in her hair when she sweats? Does she get REALLY pruny in the bathtub?

The sweat test involves putting little bands on each arm to collect a sample of sweat. 0-40 is considered normal. 40-60 is borderline. and 60+ is usually CF. Based on the results of that test, which you should get back within a day or so, they may do additional genetic blood testing. In fact, I would suggest that you have them do blood testing as well as in some cases sweat tests aren't exactly accurate.
 
R

Ratatosk

Administrator
Staff member
I'm sorry you're going through this, though it sounds like this new doctor is on the ball and hopefully you'll get some answers. She does seem to have CF-like symptoms. It's not something doctors usually look for or are familiar with. There are several people on this site who were misdiagnosed as having asthma.

DS is 7 and was diagnosed because he was born with a bowel obstruction due to Meconium Illeus. No family history.

Have you noticed if her stools are better if she eats something that isn't very high in fat such as fruit? Does she "taste" salty when you kiss her? Does she devlop salt crystals in her hair when she sweats? Does she get REALLY pruny in the bathtub?

The sweat test involves putting little bands on each arm to collect a sample of sweat. 0-40 is considered normal. 40-60 is borderline. and 60+ is usually CF. Based on the results of that test, which you should get back within a day or so, they may do additional genetic blood testing. In fact, I would suggest that you have them do blood testing as well as in some cases sweat tests aren't exactly accurate.
 
R

Ratatosk

Administrator
Staff member
I'm sorry you're going through this, though it sounds like this new doctor is on the ball and hopefully you'll get some answers. She does seem to have CF-like symptoms. It's not something doctors usually look for or are familiar with. There are several people on this site who were misdiagnosed as having asthma.
<br />
<br />DS is 7 and was diagnosed because he was born with a bowel obstruction due to Meconium Illeus. No family history.
<br />
<br />Have you noticed if her stools are better if she eats something that isn't very high in fat such as fruit? Does she "taste" salty when you kiss her? Does she devlop salt crystals in her hair when she sweats? Does she get REALLY pruny in the bathtub?
<br />
<br />The sweat test involves putting little bands on each arm to collect a sample of sweat. 0-40 is considered normal. 40-60 is borderline. and 60+ is usually CF. Based on the results of that test, which you should get back within a day or so, they may do additional genetic blood testing. In fact, I would suggest that you have them do blood testing as well as in some cases sweat tests aren't exactly accurate.
 
A

AleksandraKaczynska

New member
Our daughter was diagnosed at birth by screaning test - something new in Poland - made in our regional hospital only since 4 years. Joanna is now 3 years old so it would be possible if she was born in a different hospital and the screening tests didn't inclued the test for cf.
we have no history of cf in our families. So we where very surprised.
Joanna has never been sick so far and has no simptoms but those shown by her sweat test - it was exactly 60! ) and genetis test made later. I know we keep her safe now - no kindergarden and so on... but she looks and behaves like any kid her age and even our relatives still disbelieve her having cf.
We still learn what to do and how but many people share their knowledge with us.
At first we disbelieved and got angry at the doctor who dignossed her. Now I'm glad because the doctor gave Asia a chance to be treated according to her ilness - not just the symptoms.
There are a few discussions on this site about the test - but I remember it was no problem with Joanna - she had two done - one when she was 2 months old and one when she was 2 years old.
As I remember the numbers change with age - so I know that 60 was the border amount for newborns. I don't know the amount for 7 yearolds.
Sorry you have to go through this but you already whent through alot and maybe this will clear out the situation. Our doc says:
If it's not cf - good - if it is - it's good to know.
Good luck
 
A

AleksandraKaczynska

New member
Our daughter was diagnosed at birth by screaning test - something new in Poland - made in our regional hospital only since 4 years. Joanna is now 3 years old so it would be possible if she was born in a different hospital and the screening tests didn't inclued the test for cf.
we have no history of cf in our families. So we where very surprised.
Joanna has never been sick so far and has no simptoms but those shown by her sweat test - it was exactly 60! ) and genetis test made later. I know we keep her safe now - no kindergarden and so on... but she looks and behaves like any kid her age and even our relatives still disbelieve her having cf.
We still learn what to do and how but many people share their knowledge with us.
At first we disbelieved and got angry at the doctor who dignossed her. Now I'm glad because the doctor gave Asia a chance to be treated according to her ilness - not just the symptoms.
There are a few discussions on this site about the test - but I remember it was no problem with Joanna - she had two done - one when she was 2 months old and one when she was 2 years old.
As I remember the numbers change with age - so I know that 60 was the border amount for newborns. I don't know the amount for 7 yearolds.
Sorry you have to go through this but you already whent through alot and maybe this will clear out the situation. Our doc says:
If it's not cf - good - if it is - it's good to know.
Good luck
 
A

AleksandraKaczynska

New member
Our daughter was diagnosed at birth by screaning test - something new in Poland - made in our regional hospital only since 4 years. Joanna is now 3 years old so it would be possible if she was born in a different hospital and the screening tests didn't inclued the test for cf.
<br />we have no history of cf in our families. So we where very surprised.
<br />Joanna has never been sick so far and has no simptoms but those shown by her sweat test - it was exactly 60! ) and genetis test made later. I know we keep her safe now - no kindergarden and so on... but she looks and behaves like any kid her age and even our relatives still disbelieve her having cf.
<br />We still learn what to do and how but many people share their knowledge with us.
<br />At first we disbelieved and got angry at the doctor who dignossed her. Now I'm glad because the doctor gave Asia a chance to be treated according to her ilness - not just the symptoms.
<br />There are a few discussions on this site about the test - but I remember it was no problem with Joanna - she had two done - one when she was 2 months old and one when she was 2 years old.
<br />As I remember the numbers change with age - so I know that 60 was the border amount for newborns. I don't know the amount for 7 yearolds.
<br />Sorry you have to go through this but you already whent through alot and maybe this will clear out the situation. Our doc says:
<br />If it's not cf - good - if it is - it's good to know.
<br />Good luck
 
Z

zoe4life

New member
It can happen and it does. Especially if you have moved a few times. My bestfriend wasn't diagnosed until she was 7. She had the 2 most common cf genes, DF508.
I know it is scary to think about, but hopefully you can get some answers soon so you can treat her properly. It could also just be bad asthma....hang in there and keep us posted! When is her sweat test scheduled for?

Take care,
 
Z

zoe4life

New member
It can happen and it does. Especially if you have moved a few times. My bestfriend wasn't diagnosed until she was 7. She had the 2 most common cf genes, DF508.
I know it is scary to think about, but hopefully you can get some answers soon so you can treat her properly. It could also just be bad asthma....hang in there and keep us posted! When is her sweat test scheduled for?

Take care,
 
Z

zoe4life

New member
It can happen and it does. Especially if you have moved a few times. My bestfriend wasn't diagnosed until she was 7. She had the 2 most common cf genes, DF508.
<br />I know it is scary to think about, but hopefully you can get some answers soon so you can treat her properly. It could also just be bad asthma....hang in there and keep us posted! When is her sweat test scheduled for?
<br />
<br />Take care,
 
M

mom2three

New member
thank you very much ladies ~ the last 24hrs I have not felt myself and feeling overwhelmed ~ we hear from her doctor tomorrow with her test date ~ I just firmly believe a doctor wouldn't throw this out there is he didn't feel it could possibly be ~ and doing what I knew I shouldn't which was spent most of today while the kids were at school on the computer researching etc etc ~ just makes me more nervous that this is what it is ~ luckily we live not to far from Chicago children's which where one of the CF clinics are located ~ hopefully though we can (obviously still not sure) do anything and everything here localy ~ I'm just praying and keeping faith that what ever the outcome is we'll finally have answers ~ to why all of the sudden she just seemed "sick" all the time ~ and yes our daughter was born in PA ~ and since she was born in 2004 we've moved twice ~ but hopefully and prayfully this group of doctors we have are younger and seem to really take to listening to parents instead of the old days where they just sent you home with a bottle of meds and called it a day.

Thank you and God Bless all of you ~
 
M

mom2three

New member
thank you very much ladies ~ the last 24hrs I have not felt myself and feeling overwhelmed ~ we hear from her doctor tomorrow with her test date ~ I just firmly believe a doctor wouldn't throw this out there is he didn't feel it could possibly be ~ and doing what I knew I shouldn't which was spent most of today while the kids were at school on the computer researching etc etc ~ just makes me more nervous that this is what it is ~ luckily we live not to far from Chicago children's which where one of the CF clinics are located ~ hopefully though we can (obviously still not sure) do anything and everything here localy ~ I'm just praying and keeping faith that what ever the outcome is we'll finally have answers ~ to why all of the sudden she just seemed "sick" all the time ~ and yes our daughter was born in PA ~ and since she was born in 2004 we've moved twice ~ but hopefully and prayfully this group of doctors we have are younger and seem to really take to listening to parents instead of the old days where they just sent you home with a bottle of meds and called it a day.

Thank you and God Bless all of you ~
 
M

mom2three

New member
thank you very much ladies ~ the last 24hrs I have not felt myself and feeling overwhelmed ~ we hear from her doctor tomorrow with her test date ~ I just firmly believe a doctor wouldn't throw this out there is he didn't feel it could possibly be ~ and doing what I knew I shouldn't which was spent most of today while the kids were at school on the computer researching etc etc ~ just makes me more nervous that this is what it is ~ luckily we live not to far from Chicago children's which where one of the CF clinics are located ~ hopefully though we can (obviously still not sure) do anything and everything here localy ~ I'm just praying and keeping faith that what ever the outcome is we'll finally have answers ~ to why all of the sudden she just seemed "sick" all the time ~ and yes our daughter was born in PA ~ and since she was born in 2004 we've moved twice ~ but hopefully and prayfully this group of doctors we have are younger and seem to really take to listening to parents instead of the old days where they just sent you home with a bottle of meds and called it a day.
<br />
<br />Thank you and God Bless all of you ~
 
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