Is sweat testing

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anonymous

New member
Push for the genetic blood test -- get the full test over 1300 or 1400 mutation -- don't let them do only a screening for 39 or 89 mutations -- it's too easy to miss them -- that's way too many to not be looking for.

Unfortunately it will take longer to get the results.

You could also ask for the fecal elastase fat test, just for the sake of knowing -- it would still take about a week (I think) and would show if he is pancreatic sufficient or not.

You can check out my blog page (link at the bottom) for some basic info about sweat tests and genetic test -- not exactly what your problem is at the moment but it would be good to know about just in case they say the sweat test is normal.
 
A

Alyssa

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

Push for the genetic blood test -- get the full test over 1300 or 1400 mutation -- don't let them do only a screening for 39 or 89 mutations -- it's too easy to miss them -- that's way too many to not be looking for.



Unfortunately it will take longer to get the results.



You could also ask for the fecal elastase fat test, just for the sake of knowing -- it would still take about a week (I think) and would show if he is pancreatic sufficient or not.



You can check out my blog page (link at the bottom) for some basic info about sweat tests and genetic test -- not exactly what your problem is at the moment but it would be good to know about just in case they say the sweat test is normal.</end quote></div>

Whoops -- not signed in.... that was me -- here is the link to blog
 
A

Alyssa

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

Push for the genetic blood test -- get the full test over 1300 or 1400 mutation -- don't let them do only a screening for 39 or 89 mutations -- it's too easy to miss them -- that's way too many to not be looking for.



Unfortunately it will take longer to get the results.



You could also ask for the fecal elastase fat test, just for the sake of knowing -- it would still take about a week (I think) and would show if he is pancreatic sufficient or not.



You can check out my blog page (link at the bottom) for some basic info about sweat tests and genetic test -- not exactly what your problem is at the moment but it would be good to know about just in case they say the sweat test is normal.</end quote></div>

Whoops -- not signed in.... that was me -- here is the link to blog
 
A

Alyssa

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

Push for the genetic blood test -- get the full test over 1300 or 1400 mutation -- don't let them do only a screening for 39 or 89 mutations -- it's too easy to miss them -- that's way too many to not be looking for.



Unfortunately it will take longer to get the results.



You could also ask for the fecal elastase fat test, just for the sake of knowing -- it would still take about a week (I think) and would show if he is pancreatic sufficient or not.



You can check out my blog page (link at the bottom) for some basic info about sweat tests and genetic test -- not exactly what your problem is at the moment but it would be good to know about just in case they say the sweat test is normal.</end quote></div>

Whoops -- not signed in.... that was me -- here is the link to blog
 
A

anonymous

New member
In some cases, yes it is more accurate.

Howver I have CF and have positive sweat tests but on DNA testing only one mutation of mine has been indentified. However I have classic CF symptoms and positive sweat test
 
A

anonymous

New member
In some cases, yes it is more accurate.

Howver I have CF and have positive sweat tests but on DNA testing only one mutation of mine has been indentified. However I have classic CF symptoms and positive sweat test
 
A

anonymous

New member
In some cases, yes it is more accurate.

Howver I have CF and have positive sweat tests but on DNA testing only one mutation of mine has been indentified. However I have classic CF symptoms and positive sweat test
 
A

anonymous

New member
hmmm...interesting...ill get the doctor to do both tests, what are your symptoms? that is, if you dont mind me asking...my son has had atleast one of them, (that i know of) and that was the meconium plug...what else should i look for just in case?
 
A

anonymous

New member
hmmm...interesting...ill get the doctor to do both tests, what are your symptoms? that is, if you dont mind me asking...my son has had atleast one of them, (that i know of) and that was the meconium plug...what else should i look for just in case?
 
A

anonymous

New member
hmmm...interesting...ill get the doctor to do both tests, what are your symptoms? that is, if you dont mind me asking...my son has had atleast one of them, (that i know of) and that was the meconium plug...what else should i look for just in case?
 
R

Ratatosk

Administrator
Staff member
DS was born with an intestinal blockage due to meconium illeus. Had to have surgery and spent 6 weeks in the NICU. Had a blood test before he was lifeflighted out of local hospital when he was one day old. Took 5 days to get the results back. However, a sweattest was conducted when he was 2 weeks old for some reason and he tested at 32 which is normal. The blood test(s), the CF hospital also did another one showed he had CF.
 
R

Ratatosk

Administrator
Staff member
DS was born with an intestinal blockage due to meconium illeus. Had to have surgery and spent 6 weeks in the NICU. Had a blood test before he was lifeflighted out of local hospital when he was one day old. Took 5 days to get the results back. However, a sweattest was conducted when he was 2 weeks old for some reason and he tested at 32 which is normal. The blood test(s), the CF hospital also did another one showed he had CF.
 
R

Ratatosk

Administrator
Staff member
DS was born with an intestinal blockage due to meconium illeus. Had to have surgery and spent 6 weeks in the NICU. Had a blood test before he was lifeflighted out of local hospital when he was one day old. Took 5 days to get the results back. However, a sweattest was conducted when he was 2 weeks old for some reason and he tested at 32 which is normal. The blood test(s), the CF hospital also did another one showed he had CF.
 
A

anonymous

New member
My son was born with meconium ileus and was diagnosed with cf at two weeks old. We had the genetic testing done.....they kept telling me that a sweat test would not be accurate until at least 3-6 months of age because little ones dont produce enough sweat. I do know that most babies born with a meconium plug go on to find out they do indeed have cf. But on a more positive side....there was a preemie in the NICU when my son was in there that also had a meconium plug. She had to have surgery for it and she does not have cf. She has had genetic testing done. Good luck to you!
Carrie
 
A

anonymous

New member
My son was born with meconium ileus and was diagnosed with cf at two weeks old. We had the genetic testing done.....they kept telling me that a sweat test would not be accurate until at least 3-6 months of age because little ones dont produce enough sweat. I do know that most babies born with a meconium plug go on to find out they do indeed have cf. But on a more positive side....there was a preemie in the NICU when my son was in there that also had a meconium plug. She had to have surgery for it and she does not have cf. She has had genetic testing done. Good luck to you!
Carrie
 
A

anonymous

New member
My son was born with meconium ileus and was diagnosed with cf at two weeks old. We had the genetic testing done.....they kept telling me that a sweat test would not be accurate until at least 3-6 months of age because little ones dont produce enough sweat. I do know that most babies born with a meconium plug go on to find out they do indeed have cf. But on a more positive side....there was a preemie in the NICU when my son was in there that also had a meconium plug. She had to have surgery for it and she does not have cf. She has had genetic testing done. Good luck to you!
Carrie
 
A

anonymous

New member
<div class="FTQUOTE"><begin quote>hmmm...interesting...ill get the doctor to do both tests, what are your symptoms? that is, if you dont mind me asking...my son has had atleast one of them, (that i know of) and that was the meconium plug...what else should i look for just in case? </end quote></div>

Yes, definately push for the extended panel blood test. My son's cf clinic always bases a diagnosis on either 2 positive sweat tests or a pos. sweat test and a positive blood test (genetic testing picking up 2 mutations). Some genetic tests only screen for a fraction of the mutations, so push for an extended panel, such as Ambry's cf amplified or Quest diagnostics extended panel.

While you're waiting for the results, some other symptoms: your son may taste very salty when you kiss his forehead, he may have a ravenous appetite, his stools may be very bulky and oily/greasy, and may be very stinky. But it may be hard to tell in a newborn. And the stools would only be affected if he was pancreatic insufficient, which some people with CF are and some are not. Plus, in the case of my son and some others on this site, pancreatic insufficiency didn't show up for some time. Doctors can test for this with as fecal fat test. They can see if his body is absorbing enough fats by testing his stools.

Try not to freak out too bad in the mean time, and keep us posted if you can. This site is a wonderful source of information and support. People here have gone through exactly what you are now, and know how you're feeling (like myself!). There are a ton of new drugs out or being researched now to help people with cf live long happy lives, its not a death sentence. Please make sure if you do research that you read update information. There's a lot of old, scary info out there! I recommend CFF.org.(the Cystic Fibrosis Foundation)
Feel free to ask us any question you may have! I wish you the best of luck, and I hope your little guy is doing well!
 
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