‘It’s soul-crushing,” mother shares what it’s like having a child with epilepsy

BATON ROUGE, La. (WAFB) - About 54,000 Louisiana residents are living with Epilepsy. The term means recurrent seizures, and it’s the fourth most common neurological disorder.

Epilepsy is characterized by repetitive seizures, which are brief changes in the brain’s normal functioning, and can affect people of all ages.

From the outside looking in, 5-year-old Jackson Mitchell is just a regular kid.

“He’s just an absolute joy to have in our house,” said Amanda Mitchell, his mom.

Mitchell says he was born perfectly healthy. But when he turned four months old, their lives changed forever in one day.

“My son’s first seizure was a prolonged seizure, it lasted over 40 minutes. We had to go to the ER, they had to use medications to force it to stop,” said Mitchell.

Jackson suffers from epilepsy, which means the same thing as a seizure disorder. The only way his mom can describe it is this….

“It’s terrifying, it’s soul-crushing The only I’ve kind of been able to describe it, is to imagine watching your child or someone you love drown and stand on the sidelines and wait. Not being able to help them, not being able to make it stop, and with seizures, you pray that it stops,” said Mitchell.

She says her son’s seizures are well controlled right now, but for a while, that wasn’t the case.

“It’s really hard for us. We want to keep our kids in bubbles, we want to keep them safe and make sure nothing ever bad happens to them, and when they have seizures, that makes them even worse,” she said.

“It’s a constant process of planning ahead of time, that most people probably would brush aside, but this family of four must worry about.

“Things like trying to go on vacation, how far is the nearest hospital, are they going to handle if we leave the city or the state and we go somewhere else and he has a seizure, what’s going to happen then,” said Mitchell.

Never knowing if or when her son will have another episode.

“We realize that seizures would likely be a part of his life, for his whole life. And we don’t want his life defined by seizures,” said Mitchell.

So how would you find out if someone you know suffers from epilepsy?

“You would have unusual episodes, some of them would be big jerking seizures, with eyes rolled back and on the ground, and unresponsive. They can also be simply staring spells,” said Dr. Charlotte Hollman, who’s a pediatric neurologist.

Dr. Hollman treats children with brain disorders. She says more people than you know suffer from frequent seizures which are epilepsy.

“Overall, 1 in 100 have epilepsy. Now, it gets more common as people age. So, the older population over 65 is three in 100. But seizures can happen, they can start at any age. So, we have a high incidence in the first year of life, then it settles down a little bit. then they can start at every age, and then they increase again after 65,” said Dr. Hollman.

She says parents should look out for repetitive episodes.

And there are many genetic causes of epilepsy as well.

“So, the cure, we’re not there for a cure yet, but we do have good treatments. Secondly, children, especially children with onset under the age of 12 can outgrow their epilepsy. Teenagers not so much maybe, and adults may have epilepsy for the rest of their lives,” she said.

It’s an everyday journey for Amanda, her son Jackson, and their entire family.

She says sometimes folks can feel alone and isolated when they first get the diagnosis that their kid has epilepsy. But there is a community out there who’s willing to support, through the Epilepsy Alliance Louisiana.

“He has no idea he has epilepsy; he has no idea that this can stop him, and he wants to do everything all the other kids want to do. And he’s not going to be left behind.

“If he can do it, then I can do it. If he can live with this every day, then I can live with what I have to live with,” said Mitchell.

There are some important tips to keep in mind if you see someone having a seizure in public.

• Call 911
• Start timing the seizure
• Turn the person on their side if you can
• Cushion their head
• Never put anything in someone’s mouth

The Epilepsy Alliance Louisiana is hosting their annual ‘Seize the Day’ 5K and 1-mile fun run Saturday.

RELATED: Epilepsy advocacy group to host 5K Saturday

Click here to report a typo.

Copyright 2022 WAFB. All rights reserved.