Dayton family copes with child's severe epilepsy

It is hoped that eventually diet will keep it in control without needing drugs.

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DAYTON -- Until about 18 months ago, Jayden was a typical preschooler, busy mastering riding his bike, playing with his little sister, kicking a soccer ball. The stuff of a 4-year-old's life.

It all changed on Aug. 31, 2009, a day his mother Kassandra Dedloff remembers as "a normal summer day."

Jayden had a grand mal seizure. Two weeks later he had another one, and "then it all started," Dedloff said.

After several months of seizures and failed medications, Jayden was diagnosed with intractable/refractory epilepsy.

The seizures occurred day and night.

Not all the seizure events were the grand mal type. He also had drop seizures, where he would simply fall, and absent seizures, where he would stare and be unresponsive.

At night, there were night seizures when he first fell asleep, and during the night he would experience at least one grand mal seizure.

His mother, and father Steven Dedloff, began the search for help from the medical community. Children's Hospital in Seattle offered them their first respite with a diet and medications.

The diet, a modified Atkin's diet, helped for a while, but last August he was taken off one of his medications, and he started having more seizures, to the point of being in a constant state of seizure, called "status epilepticus."

He spent eight days at Children's Hospital in September, was hospitalized again in late November and again on Christmas Eve.

Soon after the Christmas holiday the Dedloffs decided to seek a second opinion and took him to Swedish Hospital in Seattle.

Testing included a 72-hour EEG to study Jayden's brain activity. After testing, his pediatric epileptologist at Swedish prescribed the Ketogenic Diet, a regimen high in fat and low in carbohydrates and protein. He started the diet Jan. 31.

"I'm very excited about the diet. I've actually met a family whose daughter is now seizure-free and on no medication, so it gives me hope," she said.

Because of the Ketogenic diet, restaurant dining as a family is out of the question. And traditional sweet treats are forbidden, although Dedloff planned to make a Ketogenic Diet cupcake for his sixth birthday party.

But the diet, despite its demands, may be the answer.

"We're seeing a positive change. He's up and he's playing. He's having seizures, but his days are good, Dedloff said.

The barrage of seizures has taken a toll on Jayden's development, Dedloff said. "It's been very hard for us to see his skills decline."

Physically, he is within the normal development range, but is falling behind in fine motor skills and speech. His parents decided to hold him back from starting school, but are hopeful he can attend next year.

Attending to Jayden's needs has changed the family's life, Dedloff said. She left her job in August to be able to care for him full time, although she continued as coach of the Dayton cheerleaders.

The cheerleaders are holding a "Cheering for Jayden" dinner as their community service project March 1.

The Dedloffs have health insurance, but there are uncovered costs associated with treatments and travel to medical facilities.

The Dedloffs will return to Swedish on March 4 for a follow-up with the diet team and specialist. Jayden is still on four medications, but "our goal is for the diet to work 100 percent for Jayden," Dedloff said.

"We're ready for him to be feeling better."

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