Tuesday, January 17, 2012

Update On Clinical Trial

Noah is in a clinical trial for new medicine for ASD to improve social skills At Vanderbilt in Nashville. We are 2 months into the study and its a "blind study" we don't know if he is on the medicine or not. I firmly believe he is on the medicine because I have seen a remarkable changes in his behavior, his communication, he is noticing his environment, he is reading billboards that we pass its been amazing.
The thing is with the study is we are going to have to withdraw in the next month or so. We will be able to put him back on it after the withdrawal period. Since we participated in the study we have that option when its over. I am so afraid that when we withdraw him the behaviors will come back, the aggression and so on. But I know that it won't last but about a month, we will decrease the medicine over a 4 week period. The medicine is used now for individuals with Fragile X.
We are experiencing some MAJOR sleep issues right now, that's one of the side effects insomnia so I don't know what we are going to do about that.  This past week as been really tough at night one night he didn't sleep at all!!  He hasn't been to bed before 2:30 this week.  He is in a great mood, he just can't shut his body down to go to sleep, melatonin is not working right now.
I think it will really make a difference for some kids on the spectrum. I am so truly blessed that we were able to participate!!

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