parents' perspective

Sometimes I feel like no one gets it. Yesterday I had to bring Elija to the ER because of some rapid seizures. I’m having a hard time getting him to take his medication because one of his new symptoms is tongue thrusting and excessive drooling. He has to take liquid Depakote three times a day, two syringes full each time. So clearly this is a constant struggle. I told the doctor how exasperated I am with the situation and said I wasn’t sure what to do. The doctor informed me, quite matter-of-factly, “Perhaps you should try harder.”

Waterville, Maine
Today Ronan had several rolling seizures, and when Rick swam with him to the opposite end of the therapy pool, this day before the day of the full moon, I imagined the day when Ronan’s body will not just float away to the other side of the pool—a sight I can barely stand—but will be gone

Santa Fe, New Mexico

Lisbeth was normal and healthy until the onset of her seizures at the age of six due to a traumatic brain injury caused by a viral illness. One of the most painful aspects of this turn of events was the before and after of her/our life. We lost the little girl that she was. It was a death of sorts.  And Lisbeth has had the torture of remembering her old self—popular, spunky, bright—as compared to her new condition with constant seizures, severe learning disabilities and deficits, and days on end of post-ictal fog.

Woolwich, Maine

When he had seizures (every night, multiple times) he would hold his breath. This breath holding would alert the heart to pump even more blood to the brain, making the heart increase in size until a wall finally blew out ... My wife and I live every day missing him.

Auburn, Washington

I heard Elijah behind the sofa banging around and I assumed falsely that he was playing with his toys. My boyfriend came in the front door and screamed. I turned around and there Elijah was, his face ashen gray and his lips blue. He wasn't breathing and his body was rigid.

Waterville, Maine

Poor guy seized when on hands and knees, crashed to the wood floor and broke a tooth - could have been worse as we all hear so often. It still sucked and we are freaking out about how to protect the little guy.

South Portland, Maine

Details about Eoin: no issues at birth, normal delivery. Began having seizures at 3 mos. following DPT immunization. Hundreds of myoclonic seizures per day. Lived this way until aged 7, when seizure type flipped abruptly to grand mal. About 80% of his seizures last longer than 30 minutes. They can go up to 90 minutes. He desaturates in many of them. Significant brain damage. Fourteen years old but developmentally about 3-4 years.

Newburyport, Massachusetts

Watching her adjust to the Keppra has just reminded me how powerful these drugs are. She was just so out of it during the day. She seems tired and a bit drugged. It stinks because I over-analyze all of her behaviors now ... can't just let her be tired, I am always reading into it. She struggles so much in school.

Cape Elizabeth, Maine

We tried weaning her off her med. Soon as she was off her med, the seizures came back and now she is on double the med that she was on and we still can't stop them. So frustrating. I can't figure out why the same formula of Keto diet and a certain dose of med didn't bring her back to the place where she was seizure free for so long.

Spokane, Washington

We gave her Diastat (rectal Valium) to stop the seizure ... the entire scene at the pool with strangers and my other kids freaking out just added to the situation ... I cannot separate the drama from the actual seizure ... This is awful.

Cape Elizabeth, Maine

Our daughter Savannah was healthy and typically developing until age two.  Our introduction to epilepsy came when we were abruptly woken to the sound of Savannah shaking and gagging.  We didn’t know she was seizing.  We thought she was choking.  Doctors called her seizures "attacks" and "spells," but never seizures, and we were repeatedly told she would outgrow them.  Savannah is now 18 and seizes daily.  She is intellectually disabled from the seizures and will never be independent.

San Diego, California

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drawing by Martha Miller

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