Cathy
  • Female
  • Henderson, KY
  • United States
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PTC124 - Can ANYBODY please share info

Started this discussion. Last reply by Cathy Jul 8, 2009. 2 Replies

 

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Profile Information

About my family:
My grandson has DMD
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
St. Louis, MO

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At 9:34am on October 31, 2008, brad stringer said…
Cathy,

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 Brad
At 2:48am on October 31, 2008, brad stringer said…
Cathy,

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?
At 11:14pm on October 29, 2008, brad stringer said…
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?
Thanks, Brad
At 1:50am on October 22, 2008, brad stringer said…
Cathy,
Hi...just wondering how your family and grandson Tim are doing with the 2b trial so far and how difficult it was to decide to start it?

(Please resad my post on the PTC124 2b discussion group...) Thanks best...Brad
At 9:27am on August 13, 2008, Ellen Wagner said…
HI Cathy,
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.
Ellen
At 4:58pm on August 7, 2008, Kari said…
Welcome Cathy and what a sweetie grandma you are to your grandson by showing your support!
 
 
 

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