EEG

Macayla had a 24-hour EEG this week at the hospital. She had three seizures Sunday, three seizures Monday, and none on Tuesday or Wednesday while she was on the EEG. That's the way it usually works out. But it probably means that she is having "storms" of seizures and not any consistent epileptic activity. I say not consistent, but she has always started her "storms" on Sundays. We have increased her meds again and hope that with the right increases we can keep these to a minimum. But we have to be prepared for the fact that this could just be part of the next phase and that grand mals are part of our lives now.

We got a pulse oximeter to monitor her heart rate and oxygen levels. Hopefully, it will alert us to a seizure if she stops breathing. My understanding from our pediatrician is that when the lips turn blue, the blood oxygen level is in the mid 70% range. We have set the oximeter to alert us if she falls below 85%. We had a apnea monitor, but it did not alarm at all during a seizure because it detects a lack of movement to alarm that breathing has stopped. During a seizure, Macayla moves even if she is not breathing. So, it didn't work. We hope the pulse/ox will work better.