Borderline sweat test--the waiting is hard

[MCMC3]

Hello, I am so grateful to have access to these boards to learn about CF as it seems like all the descriptions on various websites seems to be carbon copies of each other. My son is 13 months and has been hospitalized 2 times in the past month. First for RSV, then for an asthma like attack 3 weeks later. During his second visit (at non-cf center hosp) he tested a 56 borderline sweat test. He is a big boy, always in the 90+percentile for his age. We have sent his blood off for genetic testing and have to wait another few days for a second sweat test (at a cf center hospital). Obviously I am terrified and worried. I am wondering if sweat tests can be wrong. Once a sweat test is borderline, could it ever go down? It doesn't seem possible. The wait is hard. I am using this time to learn more and more about this disease so I can learn what questions to ask. Do CFers always taste salty?
I don't even know what I'm asking but if anyone has any feedback for me I would greatly appreciate it. Thank you.

 

[Printer]

MCMC3:

Sweat tests given at local hospitals are not very accurate, that is the reason that you are being sent to a CF Center. The second test must be done, not only at a CF Center Hospital but in a Approved CF Clinic. For example, the Massachusetts General Hospital has more than 2000 Doctors on staff. Only six of those are CF Specialists. It is not enough to go to a hospital that is approved, you need to be seen by a CF Specialist.

Good luck,
Bill

 

[jshet]

Hi, I was just wondering if he had a 56 on both arms or did they not get enough sweat from one of the arms?m Typically you are given the result for each arm. The numbers are usually close to each other. If they only gave you one number, I would call and inquire why. If they did not get enough, it is good they are repeating the test since it's possible the results are wrong.

 

[jshet]

Hi, I was just wondering if he had a 56 on both arms or did they not get enough sweat from one of the arms?m Typically you are given the result for each arm. The numbers are usually close to each other. If they only gave you one number, I would call and inquire why. If they did not get enough, it is good they are repeating the test since it's possible the results are wrong.

 

[MCMC3]

Hi, I was just wondering if he had a 56 on both arms or did they not get enough sweat from one of the arms?m Typically you are given the result for each arm. The numbers are usually close to each other. If they only gave you one number, I would call and inquire why. If they did not get enough, it is good they are repeating the test since it's possible the results are wrong.

he had an IV in the other arm, so they only did one arm. The hospital where this was done is not listed on the CF website but the hospital where I am getting the re-test is.

Thanks