Well we just got a call from the head nurse who helps Dr. C, Daniel's neurologist.
While doing the Video EEG Daniel didn't have (of course) any of the movements that we guess to be seizures. There were some movements that I wasn't really ever sure about so we mashed the button on 6 different occasions. NONE OF THOSE WERE SEIZURE ACTIVITY! Yeah for that.
Unfortunately, according to just the preliminary report, there are frequent spikes and waves in his left frontal and temporal lobe and a little from the right. So basically bilaterally. Which we knew from previous EEG's. Although they didn't' see an actual seizure, there is still the activity.
Kathy (the nurse) is going to talk to Dr. C about adjusting some medicines because since all the changing of meds Daniel seems to not be himself. He isn't focusing on activities as much, doesn't have the get up and go like he did before. So she thinks that maybe we are too high on the Vigabatrin and we need to cut back so she will consult with the doctor.
Daniel is currently taking for his medicines the following concoction:
Morning: Vigabatrin 500 mg
Robinul 1 mg
Midmorn: 1 tsp Omega 3-6-9
Noon: Robinal 1 mg
Bedtime: Vigabatrin 750 mg
Zonegran 50 mg
My biggest fear, a side from the seizures, is that we have Daniel but we lose him and his personality to all of the meds that he will be taking. Its not fair to have someone, and have them taken away because of the different meds.