sure that is a big help...thank you.
Just wondering ...how exactly was the importance of the PTC Trial was explained to him, so that it didn't scare him too much?
I guess we will have to do this soon...
Thanks...so what was rough about the biopsy, and do you have some tips for getting him through the blood tests?
How does he like the taste of the PTC Powder, and having to take it three times a day??
Also, is he on deflazacort?
Cathy, just wondering if your family had any factual information about the degree of improvement from the first study,(ie, information about percentage of increase of dystrophin, and reduction of CK levels?) on which you based your decision to proceed?
How has your grandson dealt with the many blood draws? any secrets about making it easy for him?
We saw improved physical abilities such as running jumping and endurance as well as improved attention and behavoir. Even Tim's performance in school improved. Also his level of frustration decreased. We are excited to have Tim back on the drug. Good luck with your grandson.