Trikafta mini-update: DS has been on Trikafta for just about 2 months. Before his lungs have been so healthy (thank you God), he hasn't noticed any real changes. We'll know more when he does his annual Xray if the minimal lung inflamation has decreased & re nasal polyps & 1
2/ whether he still colonizes staph, which he has since 2 weeks old. BUT the huge yippee is his GI issues which have always been the worst--worst his CF doctor has seen. Since he was ~1 year horrible problems, daily
3/ stomach pain w/ me basically rocking him all day other than meals & treatments, one obstruction hospitalization. Things stable for about 4 years after we found solution which requires 6 full doses of Miralax per day, plus 2 shots of milk of mag per day & senna ~3 per week.
4/ Well, we've slowly been tritrating things down & he has now been a full month without any senna and down to 4 Miralax doses per day instead of 6 and still not GI issues. In past even missing 1/2 dose & he'd be miserable for 3 days. We're still going down, but very slowly
5/ 1/2 down, wait 2 weeks, etc. Today DS said his afternoons feel like this with him thinking he forgot something (the something being 2 full glasses of Miralax).
6/6 Yippee Trikafta. Thank you @VertexPharma
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