I'm just doing a short post...I will post all about our trip, the Epilepsy Surgery Conference & our interview with CBSnews another day because we just got home & we've been traveling for 12 hours!!!
So on Friday, we were told Cole's EEG was "normal"...which means no seizures & no spiking (spikes are considered abnormal brain activity, which in turn...means the EEG is not normal and they are substitutable to having seizures). On Saturday, Cole's neurologist caught up with us to tell us that they did indeed see 2 (short) spikes this time around. When we went in February for his 6 month post op visit, Cole was not having seizures, but had high amplitude spiking....they saw that on a 1-hour EEG. This was 2 short spikes on a 24-hour EEG. His EEG is considerably BETTER, especially since 8 weeks ago he had seizures from the new medication...but it was pretty disappointing to hear "normal" EEG since this has been our goal for 3 years now. For us, it's like winning a million dollars for 24-hours, only to find out that you really didn't. We will continue to lower his Keppra from 500mg to 400mg...in hopes to help his rage, but hopefully that dose will be "high" enough to keep the Sz's at bay. We will keep praying for his brain to heal, & hopefully at his next EEG, time will help & we will have an even better EEG.