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