Living near the bayou in Louisiana, Taylor Huey liked to do all the things most adolescent boys enjoy: fishing, four-wheeling with his friends, going on overnight campouts. But that all came to a sudden halt three years ago, when Taylor, then 13, began having epileptic seizures. “He would have them about every two weeks at first, but then they started getting closer and closer together, to the point where he would have seizures almost every day,” says his mother, Cheryl.
Because Taylor also has a blood-clotting disorder, the risk of falls and injuries was even greater, and his once-rambunctious life quickly became limited. “I couldn't let him go outside by himself,” says his mother. “He'd have to sleep in our room. He just couldn't do the stuff that normal boys do, and he was really ready for some independence.”
That independence finally came last fall–in the form of Chelsea, a big-hearted golden retriever. Chelsea is a seizure-response dog, adopted from a shelter and trained to meet the unique needs of people with seizures by a nonprofit group called Canine Assistants.
On the organization's 18-acre farm in Alpharetta, Ga., dogs like Chelsea learn their paces from puppyhood. During an intense 18-month process, Canine Assistants' 30-person staff (including 8 full-time trainers) instructs seizure-response dogs in 89 commands, just like the other service dogs they work with.
“They learn things like retrieving items and opening doors, so they can get medications or tug the door open to go for help,” says Jennifer Arnold, Canine Assistants' founder and executive director. “Once a dog is matched with a client, then they go through further training working with that person to respond to seizures in the way that's most appropriate for them.”
Canine Assistants has placed some 50 dogs like Chelsea in the nine years since it first began training seizure-response dogs–and the demand keeps increasing. The Huey family waited nearly two years for Chelsea, and the waiting list is longer now. One reason is the organization's unique financial philosophy: it charges clients nothing for a trained seizure-response dog and guarantees free food and veterinary care throughout the dog's life. (Those costs, including approximately $16,000 to train each seizure dog, are underwritten by UCB Pharma.)
“The number one reason people have to turn service dogs in to shelters is that they can't afford to feed them or provide vet care,” Arnold says. “You're talking about a population who already has a lot of costs in their lives, and often limited ability to earn income. I can't bear the thought of giving someone a fabulous dog, who has the ability to transform their life, and not giving them the tools for the dog's upkeep.”
When Taylor Huey finally reached the top of Canine Assistants' waiting list and journeyed to its weeklong camp for new clients, he knew almost immediately that Chelsea was the dog for him. “During the first couple of days, everyone works with all the dogs, and he just kind of knew when he got to Chelsea,” says Cheryl Huey. “That was almost the case with everyone: the dogs would pick them. She was really in tune with his commands, and she just gravitated to him. At the end of the second day, you had to write down three dogs that you liked best, and Taylor just wrote, ‘Chelsea, Chelsea, Chelsea.’”
That happens with most of Canine Assistants' clients, says Arnold. “There seems to be something very special about the dogs that choose people who have seizures. It's that intensity of connection that they make. They are amazing in their intuitiveness. One of the reasons why dogs react to seizures, and anecdotally are reported to alert to seizures before they happen, is because the alpha is so important to the safety of the pack.”
Arnold is always cautious to use the word “anecdotally” when she describes dogs that warn of seizures before they happen. That's because reports of such abilities remain scientifically unproven. But for the Huey family, there's no question about Chelsea's abilities to warn of an impending seizure.
“The first night at camp that we brought Chelsea back to spend the night with us, she woke up at four in the morning and jumped off Taylor's bed and onto mine, pawing at me to get up,” says Cheryl. “I thought she just had to go outside, so I got Taylor up and we took her out. It wasn't five minutes later that he had a seizure in the parking lot. Chelsea had crawled on top of him and was just laying there across his body. I told her to stay and I ran inside to get help. I knew then that this was the right choice.”
“We can't guarantee that any dog will develop the ability to anticipate onset,” cautions Arnold. “But we've seen some pretty amazing things.”
Some researchers have theorized that dogs, with a sense of smell 300 to 400 times more powerful than humans', may sniff out biochemical changes that occur prior to a seizure.
Perhaps that's what happens with Skitter, another golden retriever, who has changed the life of the Florida teenager who's his constant companion. Before Skitter came along, Ryan's tonic-clonic seizures had grown so severe that he refused to return to high school, where he'd suffered the humiliating experience of losing control of his bowels in front of his friends. Now Ryan is so confident in Skitter's ability to anticipate a seizure that he's happily back in school.
“The dog seems to give him about 20 minutes' warning, which gives him time to go to the nurse's office,” says Arnold. “He hasn't had a seizure in front of the class since he got Skitter.”
Skitter's instincts seem to extend beyond Ryan. A couple of months ago, Skitter suddenly began pacing around the classroom, something that isn't his traditional “seizure alert” behavior. The teacher suggested Ryan go to the nurse's office anyway. Half an hour later, Ryan was fine–but another child in the class had had a seizure.
“Another time, Skitter woke Ryan's mother in the middle of the night, something she only does when it's an emergency,” Arnold says. “The mother is an insulin-dependent diabetic, and she remembered it being so hard to wake up. Ryan came in, and they checked her blood sugar and it was dangerously low.”
Every night, Skitter does his “nightly rounds,” checking on each family member, his acute sense of smell apparently finely attuned to the slightest changes that might mean danger.
Yet another Florida golden retriever has meant the difference between an independent life on her own and a nursing home for her companion, now in her 70s. “Carol is very active and capable, except for when she has seizures,” says Arnold. “In five years, Lindsay has anecdotally anticipated every seizure Carol has had. She makes her lie down on the floor when one is coming. These dogs seem to instinctively know that it's safer to be lying down.” Then the dog will retrieve medicine from the drawer and a bottle of water from the refrigerator, bring Carol the portable phone and press a button to alert apartment management, and lie down on top of her “mom” until the seizure passes.
Taylor Huey, now 16, has also regained his independence thanks to his dog. “I don't worry about him because Chelsea is with him,” says his mother. “He goes to the neighbors', out with friends, and out walking by himself. The whole family, really, is more relaxed now. And Taylor feels so much more independent. I think the more people learn about seizure-response dogs, the more of a demand there will be.”
Teaching Seizure Dogs New Tricks to Assist
Dogs trained to respond to seizures perform a host of services for people with epilepsy and other seizure disorders.
Here are just a few of them:
▪ Standing guard over the owner during a seizure
▪ Urging the owner to the ground at the onset of a seizure
▪ Lying across the chest to keep the owner from standing up while still disoriented from a seizure and thus risking a fall
▪ Pulling potentially dangerous objects away from the owner's body
▪ Removing pillows and blankets from someone having a seizure while in bed, so the person doesn't smother
▪ Summoning help, either by finding another person or pressing a button on the phone to call 911, an alert service or a neighbor for assistance
▪ Retrieving medications
▪ Carrying information about the owner's medical condition–often a card that they can pull out and give to a nearby person if a seizure occurs in public
A seizure-response dog is not necessarily a seizure-alert dog. Many people with seizure-response dogs also report that their dog seems to be able to anticipate when a seizure is coming on, letting them know with signals such as forcing them to lie down, barking urgently, or pacing and acting restless. The “lead time” prior to a seizure varies from dog to dog, and so does the behavior that heralds an oncoming seizure. Most reputable service-dog organizations won't claim to train seizure-alert dogs–rather, they say, it's something that often develops naturally when dog and owner have a tight bond, but it can't be guaranteed.
For more information about Canine Assistants and seizure-response dogs, see RESOURCE CENTRAL on page 46.