rad001 study

Ben's hands are sore from all the climbing he's been doing. They aren't red or blistered, so I'm guessing the muscles are sore. I told him to lay off the climbing for a day or two...which is turning out to be easier said than done. Update: he does indeed have a blister that popped open. Poor dude.

Still waiting to hear if Alex is a candidate for the RAD001 study. I did learn...

There are extensive screening / baseline tests/ assessments which would need to be done including neuropsychological assessements, MRIs, fasting labs, pulmonary function tests and a 24 hour video eeg. Once treatment starts, blood work needs to be done every 2 weeks for 8 weeks and every 4 weeks thereafter. It is not allowed by the protocol which we are mandated to follow exactly, for patients to have their labs or MRIs or other studies done at different facilities.

So we'd be going down A LOT. Not sure how we'd afford the gas and such...plus time off school and work. If it's found that Alex is a candidate, which will happen here SOON I hope, there's an informational meeting on July 23rd from 6-7:30pm where I'll find out more info on the logistics of everything. Even though it's going to be very very very hard to travel down so often, I still want him in this study....assuming that the neuro was correct that he would be unblinded if he showed any growth. I'd hate to do all this travel just for him being on a placebo.

So, which aunt wants to adopt Alex for the duration of this study? He'd live with you, be enrolled in school (and probably be getting better instruction than here) and you'd take him to Oakland for all the testing. C'mon......no need to fight over who gets to do it. ;) Ugh, why couldn't we still be living in Concord???

Still working on getting his 4 day VEEG set up.