Johnny finished phase 1-Talampanel

[Valya]

It's been a year now and my son Johnny finished Phase 1 of the Talampanel trial out of Forbes Norris in San Francisco on March 29th. We won't know for a few more months, if he was on the placebo or the meds. He agreed to also taking the real meds. He's on the high dosage, three x a day. This should be increased in another week, I believe. His only side effect so far, has been some lightheadedness.

He is supposed to eat when he takes a pill but he will only eat if he is hungry. I guess that's the teenager in him coming out. :roll:

If he was on the med during Phase 1, then it was either of no effectiveness or it was very slight. The als continues to progress steadily.

Teva is said to be releasing data on effectiveness throughout the study in a couple of months.

 

[John1]

Thanks for posting this Valya. Let's hope he was on the placebo.

 

[mare]

Thanks for the update, Valya. It's nice to see you back; my best to Johnny & all the family!

 

[Valya]

Thanks Mare and John. We can only hope.

 

[Zaphoon]

Thanks for the news, Valya! I've been wondering how Johnny has been doing.

 

[halfin]

While we're on a clinical trial we hope it's the real thing, but after it's over we hope it was the placebo!

 

[irismarie]

Whatever it was I hope and pray they find the cure for your son.

 

[Valya]

Johnny finished the trial in March and was put on the actual meds at that time. After about a month, we received a call that Teva found the med was of no effectiveness and that he had been on the placebo during the trial. We had assumed he was on the placebo, when he experienced extreme lightheadedness after beginning the actual meds. We have sent back all remaining pills.

He's thrilled to be off so many pills and plans on burning the medical bag at some opportune time.