My son had to go to the Dr today for this dang cold. Two weeks of it, and the cough is getting worse. We were in last week, the cough had gotten really gunky sounding, but everything looked fine. Today when we were in, the Dr said his lungs didn't sound too bad, but they were not clear, so she started him on antibiotics. <div><br></div><div>While I was there, I asked for the numbers of his sweat test. She printed them off for me. </div><div><br></div><div>Sweat Volume:39</div><div><br></div><div>Sodium, Sweat:53</div><div><br></div><div>Chloride, Sweat: 45</div><div><br></div><div>So, it seems like he is pretty low in the intermediate level. Hopefully this is a good sign for next weeks repeat test! </div>
Sweat test exact numbers
- Thread starter mama647
- Start date
My son had to go to the Dr today for this dang cold. Two weeks of it, and the cough is getting worse. We were in last week, the cough had gotten really gunky sounding, but everything looked fine. Today when we were in, the Dr said his lungs didn't sound too bad, but they were not clear, so she started him on antibiotics. <br>While I was there, I asked for the numbers of his sweat test. She printed them off for me. <br>Sweat Volume:39<br>Sodium, Sweat:53<br>Chloride, Sweat: 45<br>So, it seems like he is pretty low in the intermediate level. Hopefully this is a good sign for next weeks repeat test!
My son had to go to the Dr today for this dang cold. Two weeks of it, and the cough is getting worse. We were in last week, the cough had gotten really gunky sounding, but everything looked fine. Today when we were in, the Dr said his lungs didn't sound too bad, but they were not clear, so she started him on antibiotics. <br>While I was there, I asked for the numbers of his sweat test. She printed them off for me. <br>Sweat Volume:39<br>Sodium, Sweat:53<br>Chloride, Sweat: 45<br>So, it seems like he is pretty low in the intermediate level. Hopefully this is a good sign for next weeks repeat test!
I know you want to hear that his numbers are not indicative of CF and it is true that he very well may not have it. But I've seen a number of people on this board have CF with lower sweat-test numbers. I think the sweat test is fairly accurate to show a person DOES have CF, but not as accurate to rule it out.
I saw your other thread last night and haven't looked back, so forgive me if I'm repeating info from newer responses that I missed. Also, anyone can correct me too
If I were you, I would ask for vitamin levels and fecal elastase test to see if he is pancreatic sufficient. I would also ask for a sputum culture--if possible before he starts those antibiotics--to see what kind of bacteria he is growing. (Certain bacteria are pretty specific to people with CF.)
Then, based on the results of those tests, proceed with asking or not asking for a full genetic sequencing to be done to determine if he has two CF genes.
So, if he is pancreatic sufficient and cultures strep pneumonia or haemophilus, for example, bacterias common in the general population--then maybe you can rest on those sweat test numbers. Not sure, really. Maybe someone else can speak to that.
But if tests show he is having trouble absorbing nutrients and fat, and his sputum shows staph or pseudomonas--then you qualify to get more testing expensive done. Specifically, genetic sequencing. Some of the less common genes--that aren't tested for in the cheaper tests--so result in more normal sweat numbers, BUT the patients still need plenty of respiratory and gastro care--care that is best provided through a CF center.
I hope this makes sense and I hope for the best with any testing he goes through.
I saw your other thread last night and haven't looked back, so forgive me if I'm repeating info from newer responses that I missed. Also, anyone can correct me too
If I were you, I would ask for vitamin levels and fecal elastase test to see if he is pancreatic sufficient. I would also ask for a sputum culture--if possible before he starts those antibiotics--to see what kind of bacteria he is growing. (Certain bacteria are pretty specific to people with CF.)
Then, based on the results of those tests, proceed with asking or not asking for a full genetic sequencing to be done to determine if he has two CF genes.
So, if he is pancreatic sufficient and cultures strep pneumonia or haemophilus, for example, bacterias common in the general population--then maybe you can rest on those sweat test numbers. Not sure, really. Maybe someone else can speak to that.
But if tests show he is having trouble absorbing nutrients and fat, and his sputum shows staph or pseudomonas--then you qualify to get more testing expensive done. Specifically, genetic sequencing. Some of the less common genes--that aren't tested for in the cheaper tests--so result in more normal sweat numbers, BUT the patients still need plenty of respiratory and gastro care--care that is best provided through a CF center.
I hope this makes sense and I hope for the best with any testing he goes through.
I know you want to hear that his numbers are not indicative of CF and it is true that he very well may not have it. But I've seen a number of people on this board have CF with lower sweat-test numbers. I think the sweat test is fairly accurate to show a person DOES have CF, but not as accurate to rule it out.
I saw your other thread last night and haven't looked back, so forgive me if I'm repeating info from newer responses that I missed. Also, anyone can correct me too
If I were you, I would ask for vitamin levels and fecal elastase test to see if he is pancreatic sufficient. I would also ask for a sputum culture--if possible before he starts those antibiotics--to see what kind of bacteria he is growing. (Certain bacteria are pretty specific to people with CF.)
Then, based on the results of those tests, proceed with asking or not asking for a full genetic sequencing to be done to determine if he has two CF genes.
So, if he is pancreatic sufficient and cultures strep pneumonia or haemophilus, for example, bacterias common in the general population--then maybe you can rest on those sweat test numbers. Not sure, really. Maybe someone else can speak to that.
But if tests show he is having trouble absorbing nutrients and fat, and his sputum shows staph or pseudomonas--then you qualify to get more testing expensive done. Specifically, genetic sequencing. Some of the less common genes--that aren't tested for in the cheaper tests--so result in more normal sweat numbers, BUT the patients still need plenty of respiratory and gastro care--care that is best provided through a CF center.
I hope this makes sense and I hope for the best with any testing he goes through.
I saw your other thread last night and haven't looked back, so forgive me if I'm repeating info from newer responses that I missed. Also, anyone can correct me too
If I were you, I would ask for vitamin levels and fecal elastase test to see if he is pancreatic sufficient. I would also ask for a sputum culture--if possible before he starts those antibiotics--to see what kind of bacteria he is growing. (Certain bacteria are pretty specific to people with CF.)
Then, based on the results of those tests, proceed with asking or not asking for a full genetic sequencing to be done to determine if he has two CF genes.
So, if he is pancreatic sufficient and cultures strep pneumonia or haemophilus, for example, bacterias common in the general population--then maybe you can rest on those sweat test numbers. Not sure, really. Maybe someone else can speak to that.
But if tests show he is having trouble absorbing nutrients and fat, and his sputum shows staph or pseudomonas--then you qualify to get more testing expensive done. Specifically, genetic sequencing. Some of the less common genes--that aren't tested for in the cheaper tests--so result in more normal sweat numbers, BUT the patients still need plenty of respiratory and gastro care--care that is best provided through a CF center.
I hope this makes sense and I hope for the best with any testing he goes through.
I know you want to hear that his numbers are not indicative of CF and it is true that he very well may not have it. But I've seen a number of people on this board have CF with lower sweat-test numbers. I think the sweat test is fairly accurate to show a person DOES have CF, but not as accurate to rule it out.
<br />
<br />I saw your other thread last night and haven't looked back, so forgive me if I'm repeating info from newer responses that I missed. Also, anyone can correct me too
<br />
<br />If I were you, I would ask for vitamin levels and fecal elastase test to see if he is pancreatic sufficient. I would also ask for a sputum culture--if possible before he starts those antibiotics--to see what kind of bacteria he is growing. (Certain bacteria are pretty specific to people with CF.)
<br />
<br />Then, based on the results of those tests, proceed with asking or not asking for a full genetic sequencing to be done to determine if he has two CF genes.
<br />
<br />So, if he is pancreatic sufficient and cultures strep pneumonia or haemophilus, for example, bacterias common in the general population--then maybe you can rest on those sweat test numbers. Not sure, really. Maybe someone else can speak to that.
<br />
<br />But if tests show he is having trouble absorbing nutrients and fat, and his sputum shows staph or pseudomonas--then you qualify to get more testing expensive done. Specifically, genetic sequencing. Some of the less common genes--that aren't tested for in the cheaper tests--so result in more normal sweat numbers, BUT the patients still need plenty of respiratory and gastro care--care that is best provided through a CF center.
<br />
<br />I hope this makes sense and I hope for the best with any testing he goes through.
<br />
<br />
<br />
<br />I saw your other thread last night and haven't looked back, so forgive me if I'm repeating info from newer responses that I missed. Also, anyone can correct me too
<br />
<br />If I were you, I would ask for vitamin levels and fecal elastase test to see if he is pancreatic sufficient. I would also ask for a sputum culture--if possible before he starts those antibiotics--to see what kind of bacteria he is growing. (Certain bacteria are pretty specific to people with CF.)
<br />
<br />Then, based on the results of those tests, proceed with asking or not asking for a full genetic sequencing to be done to determine if he has two CF genes.
<br />
<br />So, if he is pancreatic sufficient and cultures strep pneumonia or haemophilus, for example, bacterias common in the general population--then maybe you can rest on those sweat test numbers. Not sure, really. Maybe someone else can speak to that.
<br />
<br />But if tests show he is having trouble absorbing nutrients and fat, and his sputum shows staph or pseudomonas--then you qualify to get more testing expensive done. Specifically, genetic sequencing. Some of the less common genes--that aren't tested for in the cheaper tests--so result in more normal sweat numbers, BUT the patients still need plenty of respiratory and gastro care--care that is best provided through a CF center.
<br />
<br />I hope this makes sense and I hope for the best with any testing he goes through.
<br />
<br />
Dang, I just started the meds today on him before I saw this! <div><br></div><div>I REALLY love my son's Dr, but when I have to see another Dr in the practice... They just don't KNOW him like she does. Like we were back in this afternoon because he was struggling to breath in the car. It only lasted like 20 seconds, but it was SCARY!. The Dr we saw said it was stridor or mucous from his cold, lots of things could cause stridor, and sent us on our way telling us to check in with his regular Dr next week. </div><div><br></div><div>His Dr ran a stool sample test, and everything came back normal a month or two ago, but I am not sure what she was checking for exactly. The thing that I wonder about it, is that the time I got the stool sample he was actually constipated(SUPER rare for him), so a couple of the samples sat in the fridge a couple days, and when he pooped it was all dry and hard, which is totally unlike his normal stuff. And, no, I never thought I would be analyzing poop before, haha. </div><div><br></div><div>I wrote done the names of the tests you suggested so I had them for next time, which I am sure there will be, and the ones for his pancreatic sufficiency. The place where we had the sweat test, and would be going if things show we need to go further down this path, is a wonderful children's hospital and on the accredited list according to the cff. So that makes me happy to know we have good care at least. </div>
Dang, I just started the meds today on him before I saw this! <br>I REALLY love my son's Dr, but when I have to see another Dr in the practice... They just don't KNOW him like she does. Like we were back in this afternoon because he was struggling to breath in the car. It only lasted like 20 seconds, but it was SCARY!. The Dr we saw said it was stridor or mucous from his cold, lots of things could cause stridor, and sent us on our way telling us to check in with his regular Dr next week. <br>His Dr ran a stool sample test, and everything came back normal a month or two ago, but I am not sure what she was checking for exactly. The thing that I wonder about it, is that the time I got the stool sample he was actually constipated(SUPER rare for him), so a couple of the samples sat in the fridge a couple days, and when he pooped it was all dry and hard, which is totally unlike his normal stuff. And, no, I never thought I would be analyzing poop before, haha. <br>I wrote done the names of the tests you suggested so I had them for next time, which I am sure there will be, and the ones for his pancreatic sufficiency. The place where we had the sweat test, and would be going if things show we need to go further down this path, is a wonderful children's hospital and on the accredited list according to the cff. So that makes me happy to know we have good care at least.
Dang, I just started the meds today on him before I saw this! <br>I REALLY love my son's Dr, but when I have to see another Dr in the practice... They just don't KNOW him like she does. Like we were back in this afternoon because he was struggling to breath in the car. It only lasted like 20 seconds, but it was SCARY!. The Dr we saw said it was stridor or mucous from his cold, lots of things could cause stridor, and sent us on our way telling us to check in with his regular Dr next week. <br>His Dr ran a stool sample test, and everything came back normal a month or two ago, but I am not sure what she was checking for exactly. The thing that I wonder about it, is that the time I got the stool sample he was actually constipated(SUPER rare for him), so a couple of the samples sat in the fridge a couple days, and when he pooped it was all dry and hard, which is totally unlike his normal stuff. And, no, I never thought I would be analyzing poop before, haha. <br>I wrote done the names of the tests you suggested so I had them for next time, which I am sure there will be, and the ones for his pancreatic sufficiency. The place where we had the sweat test, and would be going if things show we need to go further down this path, is a wonderful children's hospital and on the accredited list according to the cff. So that makes me happy to know we have good care at least.
If his pediatrician was the one to run the stool test, it was not likely to be one for pancreatic insufficiency but rather one for bacteria, etc. You want the one for fecal fat and elastase.
Borderline results on the sweat test (such as your son had) combined with other symptoms needed to be followed up with genetic testing, imo. There are other tests that need to be done (sputum testing, vitamin levels, etc) but it does NOT replace the need for genetic sequencing. There's a reason your child was sweat tested in the first place, results are indeterminate- I'd push for the genetic testing and minimize the runaround.
I'm glad you'll be headed to a good, accredited center next for care!
Borderline results on the sweat test (such as your son had) combined with other symptoms needed to be followed up with genetic testing, imo. There are other tests that need to be done (sputum testing, vitamin levels, etc) but it does NOT replace the need for genetic sequencing. There's a reason your child was sweat tested in the first place, results are indeterminate- I'd push for the genetic testing and minimize the runaround.
I'm glad you'll be headed to a good, accredited center next for care!
If his pediatrician was the one to run the stool test, it was not likely to be one for pancreatic insufficiency but rather one for bacteria, etc. You want the one for fecal fat and elastase.
Borderline results on the sweat test (such as your son had) combined with other symptoms needed to be followed up with genetic testing, imo. There are other tests that need to be done (sputum testing, vitamin levels, etc) but it does NOT replace the need for genetic sequencing. There's a reason your child was sweat tested in the first place, results are indeterminate- I'd push for the genetic testing and minimize the runaround.
I'm glad you'll be headed to a good, accredited center next for care!
Borderline results on the sweat test (such as your son had) combined with other symptoms needed to be followed up with genetic testing, imo. There are other tests that need to be done (sputum testing, vitamin levels, etc) but it does NOT replace the need for genetic sequencing. There's a reason your child was sweat tested in the first place, results are indeterminate- I'd push for the genetic testing and minimize the runaround.
I'm glad you'll be headed to a good, accredited center next for care!
If his pediatrician was the one to run the stool test, it was not likely to be one for pancreatic insufficiency but rather one for bacteria, etc. You want the one for fecal fat and elastase.
<br />
<br />Borderline results on the sweat test (such as your son had) combined with other symptoms needed to be followed up with genetic testing, imo. There are other tests that need to be done (sputum testing, vitamin levels, etc) but it does NOT replace the need for genetic sequencing. There's a reason your child was sweat tested in the first place, results are indeterminate- I'd push for the genetic testing and minimize the runaround.
<br />
<br />I'm glad you'll be headed to a good, accredited center next for care!
<br />
<br />Borderline results on the sweat test (such as your son had) combined with other symptoms needed to be followed up with genetic testing, imo. There are other tests that need to be done (sputum testing, vitamin levels, etc) but it does NOT replace the need for genetic sequencing. There's a reason your child was sweat tested in the first place, results are indeterminate- I'd push for the genetic testing and minimize the runaround.
<br />
<br />I'm glad you'll be headed to a good, accredited center next for care!
I am SOOOO happy that we moved back to this area 3 years ago. I am from this area, but we moved for 3 years for my dh's work. The area where we were was soooooo small, it would have been a 3 hour drive to anywhere worthwhile, and even then... <div><br></div><div>So if tomorrows test comes back negative, would you still push for more testing? That was my plan. Last week when he had the first test, the Dr at the CF center where I had the testing called his Dr, pulled her out of an appt, and told her the results. I am assuming it will probably be the same tomorrow depending on the results. So if/when his Dr calls, I was planning on saying that I still wanted more tests done. </div><div><br></div><div><br></div>
I am SOOOO happy that we moved back to this area 3 years ago. I am from this area, but we moved for 3 years for my dh's work. The area where we were was soooooo small, it would have been a 3 hour drive to anywhere worthwhile, and even then... <br>So if tomorrows test comes back negative, would you still push for more testing? That was my plan. Last week when he had the first test, the Dr at the CF center where I had the testing called his Dr, pulled her out of an appt, and told her the results. I am assuming it will probably be the same tomorrow depending on the results. So if/when his Dr calls, I was planning on saying that I still wanted more tests done. <br><br>
I am SOOOO happy that we moved back to this area 3 years ago. I am from this area, but we moved for 3 years for my dh's work. The area where we were was soooooo small, it would have been a 3 hour drive to anywhere worthwhile, and even then... <br>So if tomorrows test comes back negative, would you still push for more testing? That was my plan. Last week when he had the first test, the Dr at the CF center where I had the testing called his Dr, pulled her out of an appt, and told her the results. I am assuming it will probably be the same tomorrow depending on the results. So if/when his Dr calls, I was planning on saying that I still wanted more tests done. <br><br>