Life with epilepsy

11/29/2017  By HealthNews

November 30, 2017

Brody Boehm has epilepsy. He also lives his life to the fullest.
(Photo: Sara Boehm, KVH employee - and, more importantly, Brody's mom)

About 3.4 million people nationwide have active epilepsy. 

Many of us grew up knowing at least one relative or classmate with the condition. And while we may not have witnessed a seizure, an imaginary film of what it must look like played vividly in our heads.

Like a lot of childhood mysteries, epilepsy is a big deal. And while it is serious, "it's not contagious," says Sara Boehm. "You don't need to treat people with epilepsy any differently than anyone else."

She should know.

Her son Brody began exhibiting symptoms at age 1. "He'd be playing and then he'd pause and his eyes would roll back," Boehm recalls. She wasn't sure what was happening.

According to Boehm, it took three tries before he was properly diagnosed. "I was told he was rolling his eyes because he was annoyed," she says of the first trip to the doctor. The second time around, "it was his shoes making him fall." It wasn't until she showed another doctor a photo of Brody in mid eye-roll that she heard, "He's having seizures."

Of the 74,600 active epilepsy cases reported in Washington State in 2015, 10,200 occurred in the 0-17 year age range, while 64,400 were 18 years or older. Source: CDC Epilepsy Data and Statistics

A trip to Seattle Children's clarified Brody's eye rolling episodes as petite mal or "absence" seizures, and falling down was attributed to atonic or "drop" seizures. Both types are considered generalized seizures that affect both sides of the brain.

Brody was put on medication, and everyone let out a big sigh of relief. Then, in August 2005, some three years after Brody's first episode, everything changed.

"I was on my way to daycare to pick up the kids when an ambulance blows by me," she recalls. "Call it mother's instinct, but I knew something was wrong with Brody." She was right. When she arrived at Brody's daycare, he was in the throes of a tonic-clonic (grand mal) seizure.

Brody was taken to KVH Hospital by ambulance, where more medications were given. He was then transported Children's where he was diagnosed with both grand mal and petite mal seizures.

As a result, "we went through a lot of trial and error with finding the right medication plan," says Boehm. Brody underwent MRIs and EEGs. It was determined that he'd had a stroke, either in utero or as an infant.

"Will he grow out of this? We don't know," says Boehm. But she's hopeful. Brody has been seizure free for nearly two years. He's currently on two medications to control the seizures, and "we have rescue meds with us - just in case."

Boehm advises parents of children with epilepsy to not try to do it alone. "It's been a roller coaster. The support of family and friends helps during those times of highs and lows." Boehm is also part of an epilepsy Facebook support group. And she's grateful for a good relationship with Children's epilepsy team.

As for Brody, he's every bit the energetic 16 year old. "Brody lives a full and active life. Yes, he takes medication, and he uses common sense. With the love and care of our family and healthcare community, we expect Brody will keep following his dreams and grow up to be whatever he wants to be."

Managed by Kittitas Valley Healthcare, HealthNews does not provide medical advice. For medical advice, please see your healthcare provider.