Friday, September 14, 2012

The STX209 Experience

For those that have read my blog and kept up with our progress thank you for those just discovering my blog  welcome to our journey in the Wild World of Autism.  We are in a clinical trial at Vanderbilt Children's Hospital, the clinical name of the medicine is STX209 I think it sounds cool all futuristic and all....Autism Speaks is funding the trial.  It's the FIRST medicine known to treat core symptoms of autism.

When we joined the trial last year in the latter part of October things in our home were not good this same time last year, frankly it sucked.  Noah was out of control, I mean hitting, kicking, pushing, biting it was really bad.  He could not walk into the room without hitting his sister.  We went to his doctor and we tried to get in to see any psychiatrist that took our insurance, I was DESPERATE, I couldn't get in anywhere.  I had even called Vanderbilt and was out on a wait list there too, was told that they saw kids based on the severity of the disability and they focused on early intervention.  So basically we were screwed.

I was at my wits end and there really appeared to be no hope of getting him in to see somebody anytime soon.  We home school, so that is good because I am not sure how the school would have handled his behavior.  So I was checking my email and there it was the email that changed our lives.  Who would have thought things were changing for us.  I went to hubby told him about the clinical trial, the email said it was looking to improve social skills in individuals with autism HMMM.  So we decided I should call, they gave me a brief questionnaire on the phone.  Called my back the next day and set an appointment, I explained that we lived in Memphis and would be driving to Nashville, oh no problem we will make a reservation for you so we stay at the Holiday Inn Vanderbilt and they even reimburse for mileage!

So the study required us to take him up by 5 mg increments until we hit 30 mg a day, it was a placebo based trial in other words he may be on the medicine or h may be on the placebo, we started seeing changes in him when we hit the 20 mg mark.  The first visit the blood draw resulted in a HUGE meltdown, now he sits there and just watches them do it...he even reminded them one time that they forgot to "Steal his blood" as he calls it.  The changes we started to see was the acquisition of more language, improvement in social skills, less aggression, cognitive improvements across the board, trying new foods, behavior improvements, reading alot more.  I have explained it like an old TV with knobs, the contrast knob that cleared up the fuzziness that's what STX209 does it clears up the fuzziness and allows them to make connections with the environment that they did not previously have.

So FIRST'S this year dentist appointment & cleaning (without having to hold him down), swimming he just started swimming, we went to our 1st movie Madagascar 3, we went to church, he tries all different foods appetite increase, 1st time he went to the fair, I am sure that I missed something.  It has been an INCREDIBLE year for us as a family, and the best is yet to come................

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