Does the sweat chloride number tell you anything?

[KsMom]

HI,
We are the parents of a newly diagnosed 6 week old baby who is asymptomatic at this point.
We are wondering if the number of your sweat chloride results means anything? If its higher does that correlate to any physical symptoms?
We are still waiting on our gene type to come back so it feels like we are just really in a holding mode and not sure what to expect.
Thanks

 

[KsMom]

HI,
We are the parents of a newly diagnosed 6 week old baby who is asymptomatic at this point.
We are wondering if the number of your sweat chloride results means anything? If its higher does that correlate to any physical symptoms?
We are still waiting on our gene type to come back so it feels like we are just really in a holding mode and not sure what to expect.
Thanks

 

[KsMom]

HI,
<br />We are the parents of a newly diagnosed 6 week old baby who is asymptomatic at this point.
<br />We are wondering if the number of your sweat chloride results means anything? If its higher does that correlate to any physical symptoms?
<br />We are still waiting on our gene type to come back so it feels like we are just really in a holding mode and not sure what to expect.
<br />Thanks
<br />

 

[Jana]

Hi! I'm sorry to hear you're going through this. That waiting deal always seems like the hardest part to me.

I'm certainly no expert on this topic but am pretty sure the sweat chloride results don't have any real bearing on prognosis. Back when I was diagnosed, testing consisted of only the sweat test, and mine was very conclusive--don't know the numbers but am told it was high enough to mean no question.

Although I was diagnosed about 7 months old as a result of being very sick, I had quite a healthy childhood after getting on the right track. That's not to imply there was no sickness, but no IVs, no hospitalizations, etc. For a cf patient, especially in the 70s and 80s when there was far less in the way of treatments, I was incredibly healthy. That really didn't change a lot until I was about 25, and even now I can't complain--I'll be 38 next month and am still in relatively good health.

The best advice I can give you is to just take it one day at a time--enjoy this healthy time--long may it last =)

 

[Jana]

Hi! I'm sorry to hear you're going through this. That waiting deal always seems like the hardest part to me.

I'm certainly no expert on this topic but am pretty sure the sweat chloride results don't have any real bearing on prognosis. Back when I was diagnosed, testing consisted of only the sweat test, and mine was very conclusive--don't know the numbers but am told it was high enough to mean no question.

Although I was diagnosed about 7 months old as a result of being very sick, I had quite a healthy childhood after getting on the right track. That's not to imply there was no sickness, but no IVs, no hospitalizations, etc. For a cf patient, especially in the 70s and 80s when there was far less in the way of treatments, I was incredibly healthy. That really didn't change a lot until I was about 25, and even now I can't complain--I'll be 38 next month and am still in relatively good health.

The best advice I can give you is to just take it one day at a time--enjoy this healthy time--long may it last =)

 

[Jana]

Hi! I'm sorry to hear you're going through this. That waiting deal always seems like the hardest part to me.
<br />
<br />I'm certainly no expert on this topic but am pretty sure the sweat chloride results don't have any real bearing on prognosis. Back when I was diagnosed, testing consisted of only the sweat test, and mine was very conclusive--don't know the numbers but am told it was high enough to mean no question.
<br />
<br />Although I was diagnosed about 7 months old as a result of being very sick, I had quite a healthy childhood after getting on the right track. That's not to imply there was no sickness, but no IVs, no hospitalizations, etc. For a cf patient, especially in the 70s and 80s when there was far less in the way of treatments, I was incredibly healthy. That really didn't change a lot until I was about 25, and even now I can't complain--I'll be 38 next month and am still in relatively good health.
<br />
<br />The best advice I can give you is to just take it one day at a time--enjoy this healthy time--long may it last =)

 

[SadiesMom]

I was told that the sweat test results don't have any correlation to prognosis or physical symptoms.

 

[SadiesMom]

I was told that the sweat test results don't have any correlation to prognosis or physical symptoms.

 

[SadiesMom]

I was told that the sweat test results don't have any correlation to prognosis or physical symptoms.

 

[Ratatosk]

I don't believe it does. DS had a 32 for his test and he has double delta f508. His issues are more digestive although we do cpt/vest 3 times a day -- always have. He was diagnosed at birth. A friend of mine's daughter has the same mutation and the number was much higher 100+. Her issues were more respiratory and she wasn't diagnosed until she was 18 months old

 

[Ratatosk]

I don't believe it does. DS had a 32 for his test and he has double delta f508. His issues are more digestive although we do cpt/vest 3 times a day -- always have. He was diagnosed at birth. A friend of mine's daughter has the same mutation and the number was much higher 100+. Her issues were more respiratory and she wasn't diagnosed until she was 18 months old

 

[Ratatosk]

I don't believe it does. DS had a 32 for his test and he has double delta f508. His issues are more digestive although we do cpt/vest 3 times a day -- always have. He was diagnosed at birth. A friend of mine's daughter has the same mutation and the number was much higher 100+. Her issues were more respiratory and she wasn't diagnosed until she was 18 months old

 

[NancyLKF]

I'm not positive, but I don't think they do. Maggie has DDF08 and her sweat test was 94. So far she only has digestive aspects and takes enzymes. No lung involvement but she has chest pt twice a day and she is 20 months old.

 

[NancyLKF]

I'm not positive, but I don't think they do. Maggie has DDF08 and her sweat test was 94. So far she only has digestive aspects and takes enzymes. No lung involvement but she has chest pt twice a day and she is 20 months old.

 

[NancyLKF]

I'm not positive, but I don't think they do. Maggie has DDF08 and her sweat test was 94. So far she only has digestive aspects and takes enzymes. No lung involvement but she has chest pt twice a day and she is 20 months old.

 

[meteoras69]

Congratulations on your new baby, and welcome to the message board. I'm so sorry to hear about your baby's diagnosis; we were there just 15 months ago with our newborn son. His sweat chloride levels were "sky high," way beyond the cut-off levels, and his mutations are DDF508. They told us there is no way to predict how his individual sympmtoms will be based on sweat chloride levels or mutations. So far, he has done very well. He seems to be sick less often than the other kids in playgroup, etc. No one around him would ever guess he has CF, unless they seem him taking his enzymes or are told about his condition. I hope you will find this board to be helpful, I know I have.

 

[meteoras69]

Congratulations on your new baby, and welcome to the message board. I'm so sorry to hear about your baby's diagnosis; we were there just 15 months ago with our newborn son. His sweat chloride levels were "sky high," way beyond the cut-off levels, and his mutations are DDF508. They told us there is no way to predict how his individual sympmtoms will be based on sweat chloride levels or mutations. So far, he has done very well. He seems to be sick less often than the other kids in playgroup, etc. No one around him would ever guess he has CF, unless they seem him taking his enzymes or are told about his condition. I hope you will find this board to be helpful, I know I have.

 

[meteoras69]

Congratulations on your new baby, and welcome to the message board. I'm so sorry to hear about your baby's diagnosis; we were there just 15 months ago with our newborn son. His sweat chloride levels were "sky high," way beyond the cut-off levels, and his mutations are DDF508. They told us there is no way to predict how his individual sympmtoms will be based on sweat chloride levels or mutations. So far, he has done very well. He seems to be sick less often than the other kids in playgroup, etc. No one around him would ever guess he has CF, unless they seem him taking his enzymes or are told about his condition. I hope you will find this board to be helpful, I know I have.

 

[NYCLawGirl]

tough question. generally i would agree with the posters above and say that sweat chloride numbers are not predictive. and certainly i would say that it isn't conclusive in any case. each individual with CF is different and there's a LOT that goes into determining outcome.

all that said, i will go out on a limb here and say that very generally speaking, young children with higher sweat chloride levels who are diagnosed as infants tend to have more severe presentation than people who are diagnosed as adults, who not coincidentally also tend to have lower (often normal) sweat chloride levels. for example, the average age of needing transplant is significantly younger for CFers diagnosed as infants vs. adult diagnosis (according to the data released by my tx center, anyway). keep in mind that back when i was diagnosed (28 years ago) sweat chloride was the only way to diagnose CF, since the gene wasn't discovered until '89. so among my generation of CF adults, higher sweat chloride is the primary differentiation between people who were diagnosed as infants and those diagnosed as adults. and we do tend to have a more severe presentation.

but of course that just means that people with chloride levels high enough to clearly indicate CF might have a more severe presentation than those with normal levels. it doesn't say anything about whether a number of 100 means a less severe presentation than, say, 160. however, since it is the chloride transfer defect that causes the build up of thick mucus, it would make sense to say that the higher the number, the worse off the transfer and thus the higher the possibility of severe symptoms.

honestly though, i wouldn't try to predict the future based on a number, esp. since sweat chloride levels often change with age.

 

[NYCLawGirl]

tough question. generally i would agree with the posters above and say that sweat chloride numbers are not predictive. and certainly i would say that it isn't conclusive in any case. each individual with CF is different and there's a LOT that goes into determining outcome.

all that said, i will go out on a limb here and say that very generally speaking, young children with higher sweat chloride levels who are diagnosed as infants tend to have more severe presentation than people who are diagnosed as adults, who not coincidentally also tend to have lower (often normal) sweat chloride levels. for example, the average age of needing transplant is significantly younger for CFers diagnosed as infants vs. adult diagnosis (according to the data released by my tx center, anyway). keep in mind that back when i was diagnosed (28 years ago) sweat chloride was the only way to diagnose CF, since the gene wasn't discovered until '89. so among my generation of CF adults, higher sweat chloride is the primary differentiation between people who were diagnosed as infants and those diagnosed as adults. and we do tend to have a more severe presentation.

but of course that just means that people with chloride levels high enough to clearly indicate CF might have a more severe presentation than those with normal levels. it doesn't say anything about whether a number of 100 means a less severe presentation than, say, 160. however, since it is the chloride transfer defect that causes the build up of thick mucus, it would make sense to say that the higher the number, the worse off the transfer and thus the higher the possibility of severe symptoms.

honestly though, i wouldn't try to predict the future based on a number, esp. since sweat chloride levels often change with age.