Dogs always have been known as man’s best friend, but when it comes to seizure-response dogs for those with epilepsy, these special canines become invaluable protectors.
The Walker family in north suburban Grayslake — mom Candace and children Colin, 11, Carson, 9, and Cailean, 5 — know this all too well. They own a golden retriever seizure-response dog, Donut. The 4-year-old Donut helps Colin, who has Dravet syndrome a progressive childhood disorder characterized by epilepsy.
Before the family acquired Donut in 2007, Candace said she had her hands full caring for Colin. In addition to the possibility of hurting himself during a seizure or not getting his medicine quickly enough, Colin can become disoriented and wander away from his family, especially at stores.
“Colin had been ‘Code Adam’ [store term for a missing child] more times than I can count,” Candace said. “Now Donut is tethered to him when we go out, so he doesn’t wander away any more. Plus, Donut has a harness that carries his seizure medicine, which also is important.”
Candace says Donut also is able to alert her in advance of Colin having a seizure. “He’s trained to alert us by barking. I think he can pick up the scent of the seizure in advance. Typically he ‘woofs’ right before one, but one time he warned us 45 minutes in advance. Donut also lies down next to Colin during a seizure,” Candace said.
Donut also has picked up on Colin’s sister Cailean, who also has Dravet syndrome. “He watches her, too, and often alerts us,” she said.
Although Candace believes Donut can predict a seizure, experts from the Epilepsy Foundation of Greater Chicago are cautious in agreeing.
“Right now, it’s only a theory that these dogs can smell a seizure in advance,” said Epilepsy Foundation spokesman Garett Auriemma. “We call these dogs ‘seizure-response dogs’ and caution people when it comes to the concept of an alert dog. What we think is these dogs form a strong bond with the owner and learn to recognize signs or things people do before they have a seizure. So the dog may say, ‘Oh, that usually leads to the thing I need to do, like bark,'” Auriemma said. “It’s very rare for a dog to predict a seizure without knowing you first.”
America’s interest in seizure dogs began in the mid-1980s, when a woman with epilepsy who was taking part in a Washington state prison project involving dogs discovered that one of the dogs seemed to know when she was going to have a seizure. The news media picked up the story, and the phrase “seizure dogs” was born, according to the national Epilepsy Foundation’s Web site, www.epil epsychicago.org.
Now the term is used to include a variety of activities associated with epilepsy. Some dogs have been trained to bark or otherwise alert families when a child has a seizure while playing outside or in another room, the national foundation said. Some dogs learn to lie next to someone having a seizure to prevent injury. Others are able to activate alarm systems.
“The most important thing about these dogs is that they have definitely saved lives and for many people these dogs are there literally as a lifeline to take part in life’s experiences,” Auriemma said. “They’re incredible dogs.”
Despite the increased media attention, seizure-response dogs are still a rare breed, Auriemma said.
“The cost is a huge factor — $10,000 to $25,000 — and is usually not covered by insurance. That’s why it’s important that people who are interested in obtaining these dogs do their homework and work with [dog training] agencies that are specialized in placing these dogs with families,” said Auriemma, noting that Epilepsy Foundation of Greater Chicago will give referrals if requested.
For the Walker family, getting Donut was a major effort.
“We did our research and found 4 Paws for Ability,” Candace said. The nonprofit Xenia, Ohio-based group specializes in training service dogs. “Part of our requirement to get Donut was to raise funds and we did a variety of fund-raisers,” Candace said. After six months they’d raise not only enough to get Donut, but enough to help another child obtain a seizure dog.
Karen Shirk, executive director of 4 Paws for Ability, says their service dogs are trained for people with a variety of disabilities besides epilepsy, such as autism and hearing impairment.
“Our dogs receive 500 or more hours of professional dog training for about a year. We train all kinds of breeds — golden retrievers, Labradors, border collies and German shepherds,” Shirk said. “These dogs absolutely change people’s lives. There’s no doubt about that.”
As for Donut and the Walkers: “Having Donut is amazing and having him with me out in public looking after Colin is a comfort,” Candace said. “I’m also free to do more household things because I know Donut is watching Colin.”
For more information on 4 Paws for Ability, call (937) 374-0385 or visit: www.4PawsforAbility.org. For information on the Epilepsy Foundation of Greater Chicago, call (312) 939-8622, or visit www.epilepsy chicago.org.
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