not diagnosed but have questions

[Ratatosk]

A friend of mine's granddaughter is a few weeks younger than DS and has the same genetic mutation as DS; however, her symptoms were more upper respiratory in nature -- RSV, frequent upper respiratory infections, constipation. Whereas DS was born with a bowel obstruction caused by meconium illeus and he tends to have more sinus issues.

DS's sweat test as mentioned was 32, the granddaughter's I think was well over 100. They both have two copies of delta f508 yet sweat tests done as babies -- results were VERY different.

 

[Ratatosk]

A friend of mine's granddaughter is a few weeks younger than DS and has the same genetic mutation as DS; however, her symptoms were more upper respiratory in nature -- RSV, frequent upper respiratory infections, constipation. Whereas DS was born with a bowel obstruction caused by meconium illeus and he tends to have more sinus issues.

DS's sweat test as mentioned was 32, the granddaughter's I think was well over 100. They both have two copies of delta f508 yet sweat tests done as babies -- results were VERY different.

 

[okok]

Ratatosk,

Don't you think if your son had the sweat test again today the sweat chloride might be much higher??? I've heard you mention salt crystals on your son's head before i think. I am not in anyway trying to invalidate your point. I think you make an incredibly valuable point that even a correctly preformed sweat test is not always accurate and does not always represent the actual physiological sweat chloride number of the individual. This is especially true in young infants/childern that are not getting enough protein due to malabsorbtion. I just mention this because i have had the experience of getting a false negative due to protein malabsorbtion and later the test was high postive.

Still i do think the sweat test is a valuable tool. However it needs to be preformed correctly and interpreted by knowledgable doctors. Doctors who realize that some mutations are associated lower sweat chloride values and are aware of all the circumstances in which a false negative/false positive can occur.

Good luck!

 

[okok]

Ratatosk,

Don't you think if your son had the sweat test again today the sweat chloride might be much higher??? I've heard you mention salt crystals on your son's head before i think. I am not in anyway trying to invalidate your point. I think you make an incredibly valuable point that even a correctly preformed sweat test is not always accurate and does not always represent the actual physiological sweat chloride number of the individual. This is especially true in young infants/childern that are not getting enough protein due to malabsorbtion. I just mention this because i have had the experience of getting a false negative due to protein malabsorbtion and later the test was high postive.

Still i do think the sweat test is a valuable tool. However it needs to be preformed correctly and interpreted by knowledgable doctors. Doctors who realize that some mutations are associated lower sweat chloride values and are aware of all the circumstances in which a false negative/false positive can occur.

Good luck!

 

[okok]

Ratatosk,

Don't you think if your son had the sweat test again today the sweat chloride might be much higher??? I've heard you mention salt crystals on your son's head before i think. I am not in anyway trying to invalidate your point. I think you make an incredibly valuable point that even a correctly preformed sweat test is not always accurate and does not always represent the actual physiological sweat chloride number of the individual. This is especially true in young infants/childern that are not getting enough protein due to malabsorbtion. I just mention this because i have had the experience of getting a false negative due to protein malabsorbtion and later the test was high postive.

Still i do think the sweat test is a valuable tool. However it needs to be preformed correctly and interpreted by knowledgable doctors. Doctors who realize that some mutations are associated lower sweat chloride values and are aware of all the circumstances in which a false negative/false positive can occur.

Good luck!

 

[okok]

Ratatosk,

Don't you think if your son had the sweat test again today the sweat chloride might be much higher??? I've heard you mention salt crystals on your son's head before i think. I am not in anyway trying to invalidate your point. I think you make an incredibly valuable point that even a correctly preformed sweat test is not always accurate and does not always represent the actual physiological sweat chloride number of the individual. This is especially true in young infants/childern that are not getting enough protein due to malabsorbtion. I just mention this because i have had the experience of getting a false negative due to protein malabsorbtion and later the test was high postive.

Still i do think the sweat test is a valuable tool. However it needs to be preformed correctly and interpreted by knowledgable doctors. Doctors who realize that some mutations are associated lower sweat chloride values and are aware of all the circumstances in which a false negative/false positive can occur.

Good luck!

 

[okok]

Ratatosk,

Don't you think if your son had the sweat test again today the sweat chloride might be much higher??? I've heard you mention salt crystals on your son's head before i think. I am not in anyway trying to invalidate your point. I think you make an incredibly valuable point that even a correctly preformed sweat test is not always accurate and does not always represent the actual physiological sweat chloride number of the individual. This is especially true in young infants/childern that are not getting enough protein due to malabsorbtion. I just mention this because i have had the experience of getting a false negative due to protein malabsorbtion and later the test was high postive.

Still i do think the sweat test is a valuable tool. However it needs to be preformed correctly and interpreted by knowledgable doctors. Doctors who realize that some mutations are associated lower sweat chloride values and are aware of all the circumstances in which a false negative/false positive can occur.

Good luck!

 

[okok]

Ratatosk,

Don't you think if your son had the sweat test again today the sweat chloride might be much higher??? I've heard you mention salt crystals on your son's head before i think. I am not in anyway trying to invalidate your point. I think you make an incredibly valuable point that even a correctly preformed sweat test is not always accurate and does not always represent the actual physiological sweat chloride number of the individual. This is especially true in young infants/childern that are not getting enough protein due to malabsorbtion. I just mention this because i have had the experience of getting a false negative due to protein malabsorbtion and later the test was high postive.

Still i do think the sweat test is a valuable tool. However it needs to be preformed correctly and interpreted by knowledgable doctors. Doctors who realize that some mutations are associated lower sweat chloride values and are aware of all the circumstances in which a false negative/false positive can occur.

Good luck!

 

[Ratatosk]

I'm sure his sweat test would be different if tested today. But at the time -- it was quite low.

I guess I have more of a problem with how the sweat test is/was being used at our local cf clinic. Recently the state started newborn screening, but prior to that the sweat test was the one and only test used to determine if someone had CF. And I know of a couple of people with children who have very similar symptoms -- failure to thrive, malabsorption, frequent infections, clubbing, asthma, who've been told their kids don't have CF because they passed the sweat test.

 

[Ratatosk]

I'm sure his sweat test would be different if tested today. But at the time -- it was quite low.

I guess I have more of a problem with how the sweat test is/was being used at our local cf clinic. Recently the state started newborn screening, but prior to that the sweat test was the one and only test used to determine if someone had CF. And I know of a couple of people with children who have very similar symptoms -- failure to thrive, malabsorption, frequent infections, clubbing, asthma, who've been told their kids don't have CF because they passed the sweat test.

 

[Ratatosk]

I'm sure his sweat test would be different if tested today. But at the time -- it was quite low.

I guess I have more of a problem with how the sweat test is/was being used at our local cf clinic. Recently the state started newborn screening, but prior to that the sweat test was the one and only test used to determine if someone had CF. And I know of a couple of people with children who have very similar symptoms -- failure to thrive, malabsorption, frequent infections, clubbing, asthma, who've been told their kids don't have CF because they passed the sweat test.

 

[Ratatosk]

I'm sure his sweat test would be different if tested today. But at the time -- it was quite low.

I guess I have more of a problem with how the sweat test is/was being used at our local cf clinic. Recently the state started newborn screening, but prior to that the sweat test was the one and only test used to determine if someone had CF. And I know of a couple of people with children who have very similar symptoms -- failure to thrive, malabsorption, frequent infections, clubbing, asthma, who've been told their kids don't have CF because they passed the sweat test.

 

[Ratatosk]

I'm sure his sweat test would be different if tested today. But at the time -- it was quite low.

I guess I have more of a problem with how the sweat test is/was being used at our local cf clinic. Recently the state started newborn screening, but prior to that the sweat test was the one and only test used to determine if someone had CF. And I know of a couple of people with children who have very similar symptoms -- failure to thrive, malabsorption, frequent infections, clubbing, asthma, who've been told their kids don't have CF because they passed the sweat test.

 

[Ratatosk]

I'm sure his sweat test would be different if tested today. But at the time -- it was quite low.

I guess I have more of a problem with how the sweat test is/was being used at our local cf clinic. Recently the state started newborn screening, but prior to that the sweat test was the one and only test used to determine if someone had CF. And I know of a couple of people with children who have very similar symptoms -- failure to thrive, malabsorption, frequent infections, clubbing, asthma, who've been told their kids don't have CF because they passed the sweat test.

 

[NoExcuses]

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

0-40 is considered normal

40-60 is considered boderline

60+ considered CF...</end quote></div>


Be careful with this.

Some with CF have 0-40 but still have CF.

Genetic testing will be a much better way to go.

 

[NoExcuses]

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

0-40 is considered normal

40-60 is considered boderline

60+ considered CF...</end quote></div>


Be careful with this.

Some with CF have 0-40 but still have CF.

Genetic testing will be a much better way to go.

 

[NoExcuses]

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

0-40 is considered normal

40-60 is considered boderline

60+ considered CF...</end quote></div>


Be careful with this.

Some with CF have 0-40 but still have CF.

Genetic testing will be a much better way to go.

 

[NoExcuses]

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

0-40 is considered normal

40-60 is considered boderline

60+ considered CF...</end quote></div>


Be careful with this.

Some with CF have 0-40 but still have CF.

Genetic testing will be a much better way to go.

 

[NoExcuses]

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

0-40 is considered normal

40-60 is considered boderline

60+ considered CF...</end quote>


Be careful with this.

Some with CF have 0-40 but still have CF.

Genetic testing will be a much better way to go.

 

[NoExcuses]

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

0-40 is considered normal

40-60 is considered boderline

60+ considered CF...</end quote>


Be careful with this.

Some with CF have 0-40 but still have CF.

Genetic testing will be a much better way to go.