Our teen has been on Symdeko since last August. He'd done well on Orkambi for two years, but wanted to try Symdeko. He's continued growing -- prior to either med we struggled with maintaining weight, barely 50th percentile. He's now probably considered a tad overweight. So no more cream or protein shakes. Has surpassed his parents in height.
We still have him do vest treatments and nebs 3x a day. They've decreased some of his meds --- a prophylactic antibiotic and tobi. And while he no longer seems to culture pseudo and has had a few normal results -- steno. maltophilia appears every once in a while.
Next month he'll have his 2 hour glucose tolerance test, so we'll see if there's been any improvement there. With the pancreas being affected by CF it's not surprising if he has issues -- levels have gradually increased thru the years, but we've managed to dodge CFRD so far. Fingers crossed.
On another note, while on Orkambi, he had liver function tests every few months the first year, which were normal. A few months ago one of his ALT? was elevated. Apparently doctors aren't concerned unless it's double the high range or normal and they'll discuss putting him back on Actigall during his appointment next month if there's still an increase. Guess we'd heard/thought Symdeko had less of an affect on the liver compared with Orkambi. Hopefully just a fluke.
We still have him do vest treatments and nebs 3x a day. They've decreased some of his meds --- a prophylactic antibiotic and tobi. And while he no longer seems to culture pseudo and has had a few normal results -- steno. maltophilia appears every once in a while.
Next month he'll have his 2 hour glucose tolerance test, so we'll see if there's been any improvement there. With the pancreas being affected by CF it's not surprising if he has issues -- levels have gradually increased thru the years, but we've managed to dodge CFRD so far. Fingers crossed.
On another note, while on Orkambi, he had liver function tests every few months the first year, which were normal. A few months ago one of his ALT? was elevated. Apparently doctors aren't concerned unless it's double the high range or normal and they'll discuss putting him back on Actigall during his appointment next month if there's still an increase. Guess we'd heard/thought Symdeko had less of an affect on the liver compared with Orkambi. Hopefully just a fluke.