For those with kids taking Orkambi

[humphrey711]

Hi All,
I am the mother of an 8yr old with CF. She is DDF508 and is in a trial for Orkambi now. I know 100% she is on the drug but I don't know the dosage. Her health is great right now (knock on wood). She is gaining weight, her activity level is great, and no coughing at all. While I want to believe Orkambi is having an impact it could also be due to the fact that she is out of school and away from sick kids and is swimming every day.

If your kids are on the drug what are you seeing in terms of impact?

Thanks!

 

[Aboveallislove]

That's awesome! thanks for sharing. I think they are only doing one dose level now, aren't they? Or do you know the different possible doses?
Also, could you share what they are testing re eyes? How do they do the check? Do they dilate and examine? Just examine? Anything special? Looking forward to results in October and then quick approval!!

 

[humphrey711]

My daughter had to have her eyes checked prior to the start of the trial. She couldn't just go to an eye doctor. It had to be an MD who specializes in eyes. The doctor found a spot on her eye so she was seen by a specialist who dilated her eyes and did an ultra sound on her eye. He said she has a little birth mark on her eye and is going to check her again in a year. He didn't think it was anything to worry about.

Not sure of the dosing on the trial drugs.