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Darien family opens up about Dravet syndrome

Updated 11:08 am, Thursday, January 31, 2013

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  • Lindsey Clark and her son, Jeremy, 4, who suffers from Dravet Syndrome play trains together. Photo: Megan Davis
    Lindsey Clark and her son, Jeremy, 4, who suffers from Dravet Syndrome play trains together. Photo: Megan Davis

 

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1 in every 40,000 children are born with Dravet syndrome
The disease usually presents itself in the child's first year of life
More than 40 percent of people with Dravet are photosensitive
Dravet sufferers die from sudden unexplained death from epilepsy more often than with other types of epilepsy
Seizures related to Dravet syndrome are extremely difficult to control
Twice as many boys as girls develop the syndrome
Mental development begins to deteriorate around age 2 and stabilizes again around age 4
Source: epilepsyfoundation.org
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Two weeks ago, Jeremy Clark had his 52nd seizure. He and his identical twin brother, Miles, are 4 years old and suffer from a rare form of epilepsy called Dravet syndrome.

According to the Epilepsy Foundation, it is estimated between 1 in 40,000 children develop Dravet syndrome.

Jeremy's first seizure happened after the twins had their six-month immunizations. The hospital conducted tests and the results were normal, Lindsey Clark, the boys' mother, said. When Jeremy was released from the hospital, Miles had his first seizure.

"They dismissed Miles' seizure as a muscle spasm, and then he had his first real seizure in January of his first year," Lindsey said.

The twins were put on Trileptal, which caused an increase in seizure activity and led doctors to believe something else was going on, Lindsey said. After genetic testing was done, it was determined the twins had Dravet syndrome.

Dravet syndrome covers the entire spectrum of seizures and is not specific to what may trigger a seizure. Jeremy usually has seizures that are triggered by heat, whereas Miles' seizures are more "out of the blue," Lindsey said.

Miles and Jeremy are on different kinds of medication for their seizures.

"They're on the mild end," Lindsey said. "Thankfully; there are children who can't go outside without sunglasses."

Dealing with Dravet syndrome can be taxing not only for the twins, but also for the parents. Last year, Lindsey, the twins and her husband, Cyrus, attended Ciara's Butterfly Bash in Greenwich, an annual event that benefits the Dravet Syndrome Foundation, because they were looking for support.

"We loved it," Lindsey said of her first time at the bash. "It was a nice connect for us because you go through life and no one really knows what you're going through. I found it very calming."

At the fundraiser, Lindsey was fortunate enough to receive two cooling vests to help control the boys' seizures. Heat is a more common trigger for children with Dravet syndrome.

The vests, she said, "have cooling packs inside that cover their heart and cool the blood down so they don't overheat and seize."

Early on, Lindsey said, their seizures were worse and both boys would end up in critical care at the hospital. Today, the boys have to take three medications daily in order to help control the seizures, which don't always involve convulsions. For instance, she said, Jeremy's face has turned blue and he hasn't been able to breathe, but he didn't convulse.

"One time, Miles was climbing a (pool) ladder and he froze with his eyes looking to the side, and that was it," Lindsey said. "That's one of the scary things because a lot of people wouldn't know it's a seizure."

Drave syndrome is de novo, Lindsey said, which means it starts with the twins and is not hereditary. "And more often than not, it's not passed down," Lindsey said.

The disease will stay with the twins for life.

Lindsey's eyes fill with tears as she explains the most difficult part about dealing with Dravet is trying to not worry 24 hours a day that she's going to lose the twins.

"I mean they could go," Lindsey said. "One of (the seizures) could not stop."

Lindsey said 15 percent of people with Dravet die from Sudden Unexplained Death of Epilepsy [SUDEP], the sudden, unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death of patients with epilepsy with or without evidence of a seizure, and according to the Dravet Syndrome Foundation, individuals with the disease face a higher incidence of SUDEP than those with a different form of epilepsy.

As for how the disease will progress, Lindsey is optimistic.

"It's gotten so much better," Lindsey said. "And I'm grateful most of (the seizures) stop after a few minutes now."

Miles' medication comes with more side effects than Jeremy's.

Miles' speech is "delayed and he's not as social," Lindsey said, adding that they're currently in the process of weaning the twins down to smaller doses of the medication and possibly replace one of Miles' medicines with another that has less side effects.

"I'm excited, but a little nervous," Lindsey said. "I'm hoping it's a step in the right direction."

Aside from medication, there are other options families have to help their children, such as their diet. The idea of using diets came from research from years and years ago when doctors found that seizures would decrease when they starved their patients, Lindsey said.

Lindsey said the twins tried a modified Atkins diet.

"It's basically all meat. There's no sugar, no milk, no breading. You have to make everything," Lindsey said. "It was hard."

Another diet is the KETAGENIC diet, which is stricter and involves vitamins.

"They usually bring them to the hospital for a few days to start it," Lindsey said.

The twins have tried the diet twice, Lindsey said, but it never panned out.

"My guess is if they were more severe, we probably would have stuck with the diet," Lindsey said.

Despite Dravet syndrome affecting the kids physically, mentally and socially to a degree, Jeremy and Miles still manage to have as normal a childhood as they can. Jeremy loves to play with trains and Miles likes listening to music and watching television.

Lindsey and her family will be attending Ciara's Butterfly Bash again this year.

"We can't afford to fly all over for a lot of fundraisers, so that's why I'm so happy that it's here," Lindsey said. "It's local for us because we can't go trekking across the country."

This year Ciara's Butterfly Bash will be held at the Hyatt Regency Greenwich from 6:30 to 11:30 p.m. on Saturday, March 23. This year's event will honor Dr. Jack Parent, a professor of neurology at Michigan University and associate editor at Epilepsy Currents and Experimental Neurology. He has also conducted a study involving Miles and Jeremy.

For more information on Dravet syndrome, visit www.dravetfoundation.org.

mdavis@bcnnew.com; 203-972-4407; twitter.com/megdariennews