6-year-old fights mysterious, frightening epilepsy

PRATTVILLE, Ala. (AP) — Spider-Man and Iron Man face off on top of a couch, with Zack Nelson making sure the fight is worth the effort. The kindergartner stands, leaning up against cushions, and while Iron Man receives a blow to the chest from Spidey, the 6-year-old answers questions about living with epilepsy.

“A seizer is something that’s worser than headaches and sickness,” he says of the epileptic seizures. “I’m trying to think what seizures is. Seizures is stuff, when you see stuff that’s not really there. Like … dots.”

Epilepsy is a medical problem with seizures being the outward sign, according to the Epilepsy Foundation of Alabama. Seizures are caused by brief disturbances in the brain’s electrical activity and can affect the whole brain and disrupt consciousness or just part of the brain in which consciousness may or may not be affected.

November is Epilepsy Awareness Month, and Prattville Mayor Bill Gillespie Jr. recently presented Zack Nelson a proclamation acknowledging the month.

“This is a very challenging medical condition,” Gillespie said. “Having Zack Nelson come in gives me an opportunity to recognize him and his family’s challenges. It also gives a face to this condition and will hopefully bring more awareness to the millions who suffer from epilepsy.”

Diagnosed in September 2012, the disorder also has caused Nelson to have migraines, vomit and sometimes causes him to “flip out,” said his mom, Lisa Nelson, who has chosen to share her story during Epilepsy Awareness Month. The mother of three doesn’t know what caused the seizures to begin, but remembers the first one when Zack was 4 years old.

It was 2 a.m.

“We were sound asleep,” she said. “I felt his leg and arm kicking me. I thought he was having a bad dream. I looked at him and his eyes … they were the scariest thing I’ve ever seen. His eyes just looked like, dead.

“Not even like he was staring through you. His whole body, it wasn’t shaking real, real bad, but just like you are cold. His lips weren’t blue, blue … but it didn’t feel like he would ever wake up. But when he did, he looked at me and my husband like he was terrified.”

Nelson shares her son’s story for other parents who might not understand what their children go through. And, why.

“We hear this from a lot of parents because they are frightened and they don’t know much about epilepsy or seizures,” said Caroline Foster, director of the Mobile-based Epilepsy Foundation of Alabama. “It’s when you have reoccurring seizures that you have epilepsy.”

Every year, one in 100 people will develop epilepsy, with about 30 percent diagnosed being children, according to epilepsy.com. More than two million Americans have epilepsy — and 65 million people worldwide — with 150,000 new cases in the U.S. every year.

“It’s prevalent among children and the elderly,” Foster said. “The elderly … that’s the greatest rise in the cases among the two groups. Sometimes, they don’t know what the cause of it is. In the elderly, it could be from strokes or falls can cause seizures. In children, they can have real high fevers or seizures. Or, they could be exposed to paint that has lead in it.

“Sometimes, they just don’t know and sometimes it’s just a birth defect. It doesn’t manifest itself until the child has a seizure. It’s hard for parents to accept the fact that there’s not really a known cause.”

After Zack Nelson’s first seizure, his parents took him to the hospital.

“He started looking crazy again, so doctors took his temperature and it was 103, but then it went away and he was fine again,” Lisa Nelson said. “They diagnosed him with tonsillitis. So that is where our journey began. They didn’t have a clue. They couldn’t discharge him without a diagnosis. They put that on there and sent us to Children’s Hospital in Birmingham.”

The disorder was diagnosed by conducting an EEG, which measures brain activity.

Educating others about epilepsy helps, said Foster, especially people associated with a person who lives with the disorder — and that can include a teacher, school bus driver, the cafeteria worker or almost anyone.

“If they are in seizure for over five minutes, you need to call a paramedic because they are having one seizure after another,” Foster said. “You do not put anything in their mouth when they are having a seizure. Roll them on their side.

“You mainly watch them and make sure they come out of it. You ask them questions they have to answer. Not yes/no questions, but ask their name. Who the president is.”

Zack Nelson is on three medications — for seizures, his blood pressure and for attention deficit hyperactivity disorder, something he developed after the seizures began. He sees a psychometrist every week, which is a person who has received training in psychology or related field with an emphasis in tests and measurement.

“He went to bed a perfectly healthy boy and woke up and had a seizure,” Lisa Nelson said. “We went to the beach, came back, a week later he got sick. He would vomit. His migraines were the worst. He’d get sick, have a high fever for a few minutes, then he’s fine. That was all day long, every day.”

Her son has been to three neurologists, and along with the ADHD, has been diagnosed with a depressive disorder.

“But in kids, they describe it as a rage kind of thing,” Nelson said. “Because he will totally flip out. He sees stuff that’s not there. I guess it’s kind of like double vision. Floating faces or something. But I think that was a side effect of the medicine.

“We learn as we go. I don’t understand why they can’t figure out what it’s from. I can’t imagine how it makes him feel. It’s crammed in there. All he wants to do is go back to when he was 4 years old, when he wasn’t sick.”

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Information from: Montgomery Advertiser, http://www.montgomeryadvertiser.com

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