3 ms·
I have 2 boys with CF, 12 and 14. They got ivacaftor from 4 and 5 yrs old, respectively. Pancreatic function returned for both, but has decreased over the last
by jamesblonde 3y ago
I have 2 boys with CF, 12 and 14. They got ivacaftor from 4 and 5 yrs old, respectively. Pancreatic function returned for both, but has decreased over the last few years, FYI. just a data point. Don't stop the daily treatments either. It's not a full cure. The boy with a 32 mmol sweat is healthier than the boy with a 44 mmol reading.
- bdcravens 3y agoFor sure. I do still take daily Pulmozyme, though the we have taken out the inhaled antibiotics. For reference, I'm 46.
- jamesblonde 3y agoWe also do inhaled natrium chloride. Congrats on taking care of yourself well enough to benefit from tricafta.