New diagnosis / Any information / Kaftrio
Hi, my partner and I have just had our first child, (a little boy) and unfortunately he's been diagnosed with CF. He had meconium ileus at birth, very low enzyme count, however his sweat test result was 57, so in the 'grey' / borderline area. The doctors told us given the MI and the lack of enzymes, the clinical picture was that of CF, even though the sweat test result was 57...
I just wanted to ask if anyone has any advice, anything with regards to what to expect as he gets older, any positive info or anything that could help us get to grips with this. We have our clinic but just wanted to hear from people in the same position as us.
I read and hear brilliant things with Trikafta, and wondered if people who are on Trikafta have a reduction in the amount of other meds they have to take - I've read CF people can take up to 100 pills a day!! plus nebulisers etc. Does Trikafta reduce this at all?
Lots of things going on in our head! Any info or general advice or even a similar tale anyone has had would be greatly appreciated !
Thank you!!
Hi Dave, congratulations on your new little bundle of joy! While this is an exciting time for you and your partner, we know how frightening and overwhelming this diagnosis can be. I'm glad you found our community, you will find a lot of information and support here. While you are waiting for others to respond, I'm going to tag two of our advocates, Misty and Meagan, who are parents of children with cf. You can find their helpful articles in the drop down menu on our website under "Community." Warmly, Lynne (team member)
