Bethany
Bethany was a typical bright and bubbly little girl until shortly after her 3rd birthday when she had her first grand mal seizure. A few months later a 24-hour EEG revealed she was having hundreds of absence seizures during the day and her brain was seizing constantly while she was asleep. Her doctor warned us that her condition would worsen unless the right treatment could be found.
Three years later we are still looking for the right treatment.
We’ve tried more than 15 different medications, the Ketogenic Diet, and had a VNS implanted, yet Bethany’s condition continues to decline. Her daytime seizures happen every 1-3 minutes apart, her brain seizes more than 85% of the time while she is sleeping, she has grand mal seizures during the night, and about every other day she goes into non-convulsive status epilepticus which causes her to be in an almost catatonic state for hours on end. She can no longer attend school, she requires assistance to do everything, and she has regressed to a child several years younger than she is.
Still, she is waiting on someone to find her the right treatment.