I would like to share a picture with you:
This is the picture of a gorgeous little boy with autism. A little boy who as of now is seizure free. The government reopened when, Thursday morning? The neurologist, who I admire a bit more each day, called me at about 9:45 on Thursday to let me know that Nate’s EEG did not show any blatant seizure activity. She had not had the opportunity to fully analyze the sleep study. Remember, we finished it on Monday morning and the government shutdown went into effect that day at midnight. She could tell me that she did not see any major REM disturbances in the one night of good sleep that Nate had. She explained that she had been in touch with the research board, and that in order for them to fully analyze and qualify Nate for the double blind portion of the study, we would need to repeat the whole 48 hour ordeal. She further stated that in light of how the first night looked that she didn’t think it was necessary. He doesn’t look like a good candidate for that portion of the study.
What does this mean for Nate? In my eyes, it means that we got really good news intervention-wise. She offered us participation in the third arm of the study which is the open label trial of the medication. Basically, there is no chance, if he participates in this portion, that he will receive placebo. Everyone in this area receives the medication. If you remember, my biggest concern going into this was that we would go through all of this and eventually find out that he received placebo. That would suck. Well, that’s not going to happen. In about a week, he will start the medication. He will be on it for 6 months, and then his sleep, and developmental assessments will be monitored for a year after this for any improvements. This is what we wanted.
The medication is Aricept- here is the study…