EEG Results (June 30, 2009)
Cole got his EEG done on June 30th. Of course on the way to the hospital we had to try & keep him from falling asleep (playing, rolling the windows down, giving him the phone, etc.) Then we get to the hospital & he WON'T fall asleep...he was laughing, crying, screaming, jumping, pulling the cords off his head & unpluged the cords. Then the second we put him in the car...he was OUT!!!
We talked to the Neuro about his EEG and it shows slight imporvement from before the diet. So, we will keep trucking along with the diet for now (she did talk to us about the Vigel Stimulator...which we aren't going to do yet and will be our last resort...it is a battery pack that is inserted into the chest and wires that run up to his brain to send pulses...but like any other medication...it can make it worse, do nothing or help it)
If we can just get is ketones to stay at a consistent 4+ then the diet would work MUCH MUCH better. But we are having a hard time keeping them up through the night. He wakes up at a 1+ or 2+...and by the time he's back up to a 4+ it's time to go to bed. However last night he slept through the night and woke up at a 4+...so we will be plaing detective for a bit. We also switched his butter & oils to coconut oil, MCT oil & Flax seed oil and it seems to help.
1: hearing test (end of July)
2: meeting with Genetics Testing (October)-
to see if he has some disorder or something we don't know about