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Concert and fun runs to raise needed epilepsy awareness in Oklahoma
The day Andee Cooper saw her then 3-year-old son fall to the ground, hit his head on a car bumper and go into a full-blown seizure, her world came to a crashing halt.
That was the first of hundreds of seizures Kannon, who is now almost 5, would suffer.
In September 2011 he was diagnosed with epilepsy.
“In one year, I watched my incredible son regress from the child I once knew to a child I never thought I would have,” Cooper said.
Kannon started having as many as 70 seizures per day, Cooper said. After trying a multitude of medications that seemed to only make the situation worse, Cooper took her son to the Mayo Clinic where he was diagnosed with Lennox Gastaut Syndrome, a rare and extremely hard to manage form of epilepsy.
Since his diagnosis, doctors have prescribed a new medication for Kannon, Clobazam, which has helped keep his seizures to a minimum — a few seizures a day, Cooper said. In the past 18 months, Kannon's only had two seizure-free days.
“He's had several black eyes, bumps and bruises. He's got battle wounds to prove it,” Cooper said.
With Lennox Gastaut Syndrome, her son suffers from various kinds of seizures — grand mal, “absence” and, most scary to Cooper, “drop” seizures. Before most of his seizures, Kannon locks eyes with his mother, letting her know a seizure is coming. She gently helps him to the ground and stays by his side until the seizure ends.
“I just reassure him. I feel like he can hear me, whether that's true, I don't know,” she said.
Drop seizures are so frightening, she said, because unlike other seizures, drop seizures come with no warning and are most dangerous because of the risk of injury.
The state of epilepsy
According to epilepsy.com, epilepsy affects more than 3 million Americans of all ages — more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's disease combined.
Children under 2 and seniors are the quickest-growing demographics for epilepsy, said Ramona Hannah, a volunteer at the Oklahoma Epilepsy Association. About 37,000 Oklahoma children have the disease, she said, and Oklahoma needs much more support for the disease than the state currently has.