Just curious differences in repeat sweat test?

Lovemykids2017

New member
We are going for a repeat sweat test on Wednesday. Just curious if your child's repeat test came out very similar? Or a big difference between 1st and 2nd?
 

emason

New member
My son has had 5. They have all been within 10 points of each other. The second one was a few points higher than his first but then the 3rd was actually his lowest and the 4th was a little higher than the 3rd and 5th a little higher than the 4th (but still lower than the first 2!) I have heard of situations where they continue to climb from the start though so I know that it's truly individual. It's hard to know what to expect!

Good luck!
 

Lovemykids2017

New member
Thank you for your reply. We're at the beginning of diagnosis, like anybody in this situation, I'm hoping I'll get news that the first sweat test was a fluke. 58/59. My almost 6 year old's newborn screen was normal. Only 7th percentile. He's been an asthma/reflux kid. I know I'm probably kidding myself it will go to normal. But I'm hoping...

My son has had 5. They have all been within 10 points of each other. The second one was a few points higher than his first but then the 3rd was actually his lowest and the 4th was a little higher than the 3rd and 5th a little higher than the 4th (but still lower than the first 2!) I have heard of situations where they continue to climb from the start though so I know that it's truly individual. It's hard to know what to expect!

Good luck!
 

emason

New member
Ah what a shake up. You know, the thing to focus on is that IF he has CF, he's always had it. So the results are not changing anything but your awareness. All this time while you were trying to treat other symptoms they were really were missing the true cause of the problems. If the diagnosis comes back positive then you can begin to treat the REAL issues and your son should hopefully experience a great boost in general health.

Regardless of the sweat test result I would think at this point it's worth asking about a full genetics panel as well. It is possible to have 2 mutations and a negative sweat (although less common of course but that is actually our situation hence why they keep repeating the sweat test on my son!) but also if he's pancreatic sufficient at this point which I assume he is since you have made it this far without diagnosis, there is a good chance that at least one of his mutations has residual function and those ones tend to be likely to qualify for Kalydeco! So knowing genetics as soon as possible could be beneficial.

Keep us posted!
 

Lovemykids2017

New member
Thank you. He's going to Boston Children's Hospital for the repeat, testing a stool sample and probably genetic blood test. Unless the sweat test comes back much lower (which I'm of course hoping, but preparing for not), I think his original test requires the genetic test. Good luck to you and your son! And thank you for your thoughtful reply. I'm feeling very nervous and uneasy as we wait to get through the process.


Ah what a shake up. You know, the thing to focus on is that IF he has CF, he's always had it. So the results are not changing anything but your awareness. All this time while you were trying to treat other symptoms they were really were missing the true cause of the problems. If the diagnosis comes back positive then you can begin to treat the REAL issues and your son should hopefully experience a great boost in general health.

Regardless of the sweat test result I would think at this point it's worth asking about a full genetics panel as well. It is possible to have 2 mutations and a negative sweat (although less common of course but that is actually our situation hence why they keep repeating the sweat test on my son!) but also if he's pancreatic sufficient at this point which I assume he is since you have made it this far without diagnosis, there is a good chance that at least one of his mutations has residual function and those ones tend to be likely to qualify for Kalydeco! So knowing genetics as soon as possible could be beneficial.

Keep us posted!
 

slk317

New member
To the OP: I think we’re in similar stages. My 14 year old had two sweat tests in November, 2.5 weeks apart. First was 42, second was 41. Low enough that doctors say don’t worry, but high enough that there’s reason to worry! ��. Since then, he’s been to a wide range of doctors and had dozens of tests done while waiting for the insurance company to approve genetics testing. One good thing is having the CF doctor/clinic be aware of what’s happening. He’s been there twice; the original visit after the sweat tests to go over the options, then last week when my son had been sick for 2 weeks with no end in sight. It’s great having someone actually know what they’re talking about and know what to do to get your child feeling better. I know exactly what you’re feeling right now, I’m right there with you! Just have confidence in knowing that there is plenty of help out there, and read up on CF as much as you can!
 

Lovemykids2017

New member
Thank You. I hope we both get answers soon.

To the OP: I think we’re in similar stages. My 14 year old had two sweat tests in November, 2.5 weeks apart. First was 42, second was 41. Low enough that doctors say don’t worry, but high enough that there’s reason to worry! ��. Since then, he’s been to a wide range of doctors and had dozens of tests done while waiting for the insurance company to approve genetics testing. One good thing is having the CF doctor/clinic be aware of what’s happening. He’s been there twice; the original visit after the sweat tests to go over the options, then last week when my son had been sick for 2 weeks with no end in sight. It’s great having someone actually know what they’re talking about and know what to do to get your child feeling better. I know exactly what you’re feeling right now, I’m right there with you! Just have confidence in knowing that there is plenty of help out there, and read up on CF as much as you can!
 

Lovemykids2017

New member
Crazy actually. It came back 19. 40 points lower! Both arms. They believe this is correct and with his newborn screen being very low (7th percentile)(mandatory newborn screens in my state), they believe he doesn't have it. HOWEVER... They obviously have to repeat the test to get 2 consistent results. So we go back next week. I'm feeling cautiously optimistic. Some people who do not have C.F. just test higher sometimes too. The first lab was also C.F. certified, so they're not sure why such a difference.

Wishing everybody here the very best.

Wanted to check back - How'd the sweat test go?
 

slk317

New member
Crazy actually. It came back 19. 40 points lower! Both arms. They believe this is correct and with his newborn screen being very low (7th percentile)(mandatory newborn screens in my state), they believe he doesn't have it. HOWEVER... They obviously have to repeat the test to get 2 consistent results. So we go back next week. I'm feeling cautiously optimistic. Some people who do not have C.F. just test higher sometimes too. The first lab was also C.F. certified, so they're not sure why such a difference.

Wishing everybody here the very best.
That’s good news! Hoping for another negative result for your family! We’re still waiting on genetics results. Should know by the end of February. It’s been a waiting game since October, so knowing for sure (finally) will be a relief, either way!
 

Lovemykids2017

New member
Thank you so much for your kind words. We go back tomorrow. Your intermediate level results make it even more up in the air. I hope that whatever the results are, there is some positive news coming your way. Sometimes people who don't have C.F. test intermediate OR have a "mild form" that responds well to Kalydeco. I'm going to walk for Cystic Fibrosis. This disease needs to be stopped.


That’s good news! Hoping for another negative result for your family! We’re still waiting on genetics results. Should know by the end of February. It’s been a waiting game since October, so knowing for sure (finally) will be a relief, either way!
 

slk317

New member
Dr called us yesterday with the news....no CF genes found, not even one!! Thank the Lord, we’ve been on this roller coaster since October! Because of his sweat chloride numbers and his symptoms, he’ll still be seen once or twice a year and be classified as having CRMS, but I’ll take it!

I continue to pray for all of you fighting the fight, and I hope a cure can be found very soon!
 

Lovemykids2017

New member
I'm very happy for you!
Our final sweat test was normal. We are obviously grateful. I'm praying for all of the people here. I WILL be walking for Cystic Fibrosis, and donating. May a cure, or a simple drug management be in the near future! And the medication seems within reach.

Dr called us yesterday with the news....no CF genes found, not even one!! Thank the Lord, we’ve been on this roller coaster since October! Because of his sweat chloride numbers and his symptoms, he’ll still be seen once or twice a year and be classified as having CRMS, but I’ll take it!

I continue to pray for all of you fighting the fight, and I hope a cure can be found very soon!
 
Top