Local family deals with childhood epilepsy

MARION — Michelle Tillman was first told her 4-year-old daughter had a virus. She was bewildered when Kaycee, the youngest of four daughters, would sometimes stare off into space, completely unresponsive to mom’s voice.

Tillman and her husband, Clay, now recognize all the types of seizures that have racked Kaycee’s mind and body. They’ve become walking encyclopedias of childhood epilepsy, its many manifestations and the pharmacopeia designed to help their girl be a little more normal again.

Now, they are raising money for a new dog to be an extra set of eyes and ears for Kaycee.

“We were lucky,” Tillman said. “We were at Closer to Home, an urgent care center in Marysville, sitting right in front of the doctor, when Kaycee had a staring seizure. He recognized it as an ‘absence seizure’ immediately.”

“The convulsions didn’t start until March,” he said. “The seizure lasted several minutes, and it was terrifying. We eventually were Life Flighted to Children’s Hospital in Columbus. Kaycee is mad to this day because she didn’t remember the flight. She thought she’d get to fly back home in the helicopter.”

One in 26 people in the U.S. will develop epilepsy, a spectrum condition with a wide range of recurrent seizure types, according to the data compiled by the Epilepsy Foundation. Seizures are caused when neurons in the brain fire abnormally, sending an intense wave of of signals that overwhelms the brain and results in muscle twitching or spasms, a loss of consciousness, convulsions and falling.

Diagnosing seizures is difficult because they happen without warning and are often over in seconds. Epilepsy can be caused by brain injuries or infections such as meningitis or encephalitis, but the cause of epilepsy is unknown in 70 percent of people. Children and people who are elderly are most often affected.

Many children outgrow their seizures, according to data collected at Nationwide Children’s Neuroscience Center, where Kaycee is being treated. That’s especially true if the child has normal electroencephalogram and magnetic resonance imaging results, as is the case with Kaycee.

Many symptoms can be controlled by medications, but finding the right epilepsy drugs has been a challenge for Kaycee’s treatment team. One drug caused a dangerous allergic reaction and behavior problems. However, it’s dangerous for epilepsy patients to abruptly stop taking a medication, so they must be slowly weaned off before attempting another drug therapy.

Kaycee, who now takes four medications twice daily, has been be designated as medication resistant by her care team.

“I think her preschool teacher saw the biggest change in her,” Tillman said. “When she started, she hadn’t had any seizures yet, wasn’t being medicated, and was doing fine in school. Now, she’s more like a kid with ADHD, with hyperactivity. She’ll always be Kaycee to me, but in some ways she is so different now.”

Kaycee started kindergarten class at McKinley Elementary School this fall, but she must be closely watched because of her condition.

Kaycee experiences three types of seizures in addition to the absence, or staring, seizures: atonic, or drop seizures, when her muscles go limp and she falls; clonic seizures, which cause repeated jerking of her muscles; and tonic-clonic seizures, which are a combination of symptoms and most terrifying as her muscles stiffen, causing a moan or cry, before she loses consciousness and the clonic phase begins with the rhythmic jerking of her arms. The seizures can last 10 minutes or more.

“She doesn’t remember them. She doesn’t seem scared,” Tillman said. “Afterward, she can’t move the right side of her body.”

Her father, Clay Tillman said: “The biggest change is she really can’t do much now. She can’t be left alone, even in the bathroom. We’ve even coached her to slide down the stairs on her bottom, for fear that she might have a seizure on the way down.”

He described a recent visit to the Prairie Park in Marion where Kaycee experienced a seizure while munching on a chicken nugget. An ambulance was called before a friend was able to extract the nugget, saving Kaycee from choking.

But the real fear for the family is the risk of sudden unexpected death in epilepsy. About one in 1,000 people with epilepsy die inexplicably, often at night.

“Kaycee has about 10 seizures a day, so she now sleeps with us,” Michelle Tillman said. “We’ve considered a monitor, but they don’t detect all types of seizures, so we are trying to get a service dog. I’ve talked to some parents who have taken this step, and they’ve been so relieved.”

The Tillmans have teamed up with the Chelsea Hutchison Foundation of Colorado, named for a child who died in her sleep during a seizure in 2009. The foundation’s main focus is to raise money to provide grants to help families obtain a seizure response dog, a trained companion dog that can cost up to $10,000. Seizure dogs are trained to be alert to seizures in their owners and get the attention of another adult or sound an alarm.

Melody Towns, owner of M&R Pet Academy in Grove City, said: “Our dogs are trained to detect seizures and move potentially dangerous items away from a child in the event of a fall.”

Towns is a certified dog trainer who has placed about 50 seizure dogs with families and individuals during the last four years. Towns says the training takes 18 to 24 months, starting with 8-week-old puppies that she often breeds herself. The final two weeks of training are done with the new owner to assure bonding between dog and handler and to teach the owner the verbal commands and hand signals the dog learns over two years.

The dogs must be recertified through American Kennel Club’s Canine Good Citizen test every year and must pass a public access test defined by the American Disabilities Act for all service dogs. The dog and owner must take and pass the test as a team, she said.

“Our dogs become the constant companion to their owners. They are trained to sense a seizure and use a canine-abled phone, which is preprogrammed to dial 911 and as many as five phone numbers. They also can retrieve medications or go retrieve the nearest adult in an emergency,” Towns said.

She said she first leaned to train service dogs after her husband, Roy Towns, was wounded during combat in Afghanistan. His traumatic head injury led to seizures. His golden retriever Buddy was trained to assist him, especially during his seizures, his wife said.

“Most people are not fully functional after a seizure, so our dogs are taught to stay and provide comfort to their owners,” she said. “Not all dogs make good companion dogs. We have the best luck with golden retrievers, who really want to learn, they want to please. They are also very docile, so they are perfect for children.”

Towns believes in the therapeutic value of properly trained dogs, but she cautions people to do their research about breeders and trainers, who sometimes exaggerate the abilities of their dogs. There are no national standards or certification for seizure dogs. The dogs must be drilled monthly on their skills to keep them sharp.

“I know the benefit of having a dedicated service dog for my own family,” she said. “And helping people overcome disabilities and helping others is a positive thing.”

The Tillmans are collecting donations through Red Basket, an online, nonprofit philanthropy corporation that matches causes with donors. People interested in helping out can go to www.redbasket.org for information. The Tillmans haven’t talked up the idea of a new dog to Kaycee too much.

“If we can raise the money, any service dog still is two years away, given the training time,” Michelle Tillman said. “And for a 5-year-old, 24 months in the future is more than she can comprehend. Still, in my heart, I know it’s the right thing for her. It’ll be an additional level of help for Kaycee.”

jsmiller@gannett.com

740-375-5148

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