|50 Shades of Me|
|Written by Brooke Pankonin|
November is a time to truly give thanks
November. The month we give thanks. The month my firstborn entered the world. The month we raise awareness for the terrible monster that almost took that firstborn away from us. Epilepsy.
Austin, who will be 11 this month, began having seizures at the age of 3. The first one I saw was a tonic-clonic, aka a grand mal, aka the scariest moment of my life.
After seeing several doctors and neurologists and undergoing oodles of tests, it was discovered he was having at least five different types of seizures, and there was seizure activity happening in his brain even when he wasn’t having a seizure.
One neurologist told us to expect mental retardation. Our fun, loving, outgoing boy was fading fast.
The meds didn’t work, and we tried several. He was having anywhere from 50-100 seizures a day and wore a helmet at all times to protect his head from the constant falls.
After failing another med and being terrified of the side effects of the one they wanted to try next, I began to research other options and found our lifesaver at Johns Hopkins Hospital in Baltimore, Md. I emailed Dr. Eric Kossoff Austin’s story on a Sunday, and he responded within an hour.
We were flying to Baltimore two weeks later.
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