Working?

The Onfi seems to be working a little bit.  He's down from 33 episodes to about 20 overnight.  But it can take a couple of days for the full dosage to kick in.  We may be discharged today after all.  We'll know in a couple of hours.

The VEEG tech showed me the seizures on the video recording yesterday afternoon.  They don't look like seizures at all to me but once you see them over and over in a repetitive fashion it makes sense.  First he starts chewing, then he grinds his teeth, then he stretches both legs out very straight and then he wipes he nose with his right hand.  That's it.  I am amazed how many times, while he is sleeping, I have seen him do this and never thought anything of it.  But when he does the exact same thing 30 times you can begin to see it as a pattern.    These are what they call "clinical" seizures meaning that there are outward movements.  The "subclinical" spiking is still there unfortunately and that hasn't decreased.  It is still at 80-85% of the night.

So we are marching towards the surgery with these new meds as a precaution until we get there.