Sunday, May 27, 2007

Living with seizures is not an easy task for little Darian!

Two years ago, tiny Darian Falon was in her car seat when she had her first seizure. Within days, more seizures controlled her body, leaving her incoherent and unable to remember what took place. Drop attacks, in which her entire body would go limp, and staring spells followed."She was getting worse by the day, after the first seizure," says her dad, Justin Falon, 35, of Renner.

"Over a few weeks, she went from one seizure per day to a few more, to a point where she was having dozens each day."At first a neurologist diagnosed that Darian had epilepsy, offering hope that medication would control the problem. But in time, doctors found that Darian, now 4, has Lennox-Gastaut syndrome, a difficult to treat form of epilepsy. Usually striking children between the ages of 2 and 6, the syndrome produces a wide range of seizures.

"Darian was a healthy child for the first 21/4 years of her life," says her mother, Shannon, 32. "And then she had a seizure. Then life changed."The Falons hope Darian will reach age 7 without major mental regression. Many children who suffer from Lennox-Gastaut syndrome do not develop abstract thinking skills.

So far, Darian has done well.Through her little girl grit - which her parents say is beyond her years - she willingly sticks to a strict diet that mimics starvation. And more recently, she added Lotus to her arsenal to fight epilepsy, a Siberian husky trained to help predict her seizures."He's her new best friend," says her father, speaking of the service dog Darian received through the Make-A-Wish Foundation.

"He's been a wonderful addition to the family and a fantastic companion for Darian."

A year ago, after numerous medication changes and doctor visits, including a 24-hour observation in St. Paul where she had more than 100 seizures, the Falons began a difficult but rewarding treatment option. They started Darian on a ketogenic diet, a high fat, low carbohydrate diet used to treat epilepsy."She calls it her 'magic diet,' " says Justin Falon, who works as a mental health therapist for the State of South Dakota. "She's a very responsible 4-year-old."

The ketogenic diet mimics starvation and in some ways tricks the brain into reducing the number of seizuresDarian suffers."Today she is doing remarkably well for a kid with her condition," says Shannon Falon, a lawyer with Johnson, Heidepriem, Janklow, Abdallah & Johnson law firm. "And while the diet is helpful in controlling the seizures, her meals are weighed to the gram. She eats at four times per day, and she has supplements, and she has 32 ounces of water, each day, no more, no less."

For the diet to work, Darian must comply to the letter. There are no days off, no slip-ups allowed, no birthday cake. Her mother says even a single Cheerio could, in due time, lead to hundreds of seizures."The components (of the diet) are not very palatable," says Shannon Falon. "It's a high-fat, low carbohydrate diet. She drinks heavy whipping cream four times a day."

The cream is mixed with oil, and Darian must finish her entire meal - every bite - in a set amount of time."When she started the diet, she was having probably 100 seizures a day. Some days, she would have 20; those were good days," she says. "Initially the struggle with the diet was that she was so ketonic - the diet worked so well - that she was nonfunctional."

'Atkins on steroids'

Nausea and hypoglycemia were part of the sickness. In time, Darian's parents found the balance, but they continue to fine-tune as they go.A typical meal in this "Atkins on steroids" style diet, as it is described by Shannon Falon, might include heavy whipping cream, eggs, oil from safflower or flax seed and fruit, such as strawberries.

But there's no one template for patients and their families to follow. Myriad solutions and recipes have to be accounted for, from toothpaste to sunscreen to types of fruit.Justin and Shannon Falon found several canned fruits that were listed with no sugar added actually did have enough glucose to give their daughter seizures. "We are helping her, but she is busy teaching us," Justin says. "The miracle of the diet is the fine-tuning it takes to get the foods just right."He says it's a balance of keeping your child just sick enough to avoid seizures but well enough that she will continue to eat. She takes supplements for better nutrition, and the diet makes her nauseous.

During the initiation period for the diet, the Falons found that Darian's body adapted quickly, switching to burning fat instead of carbohydrates. In two days, the seizures stopped altogether.Dr. Raymund David, a pediatric neurologist with Avera Children's Clinic, says the diet is often a last resort, especially for patients who fail drug treatment.

For 75 percent of epilepsy patients, the disease starts before age 20."Some seizures will be a singular event, and if it is detected early, most can be very well controlled," he says. "With Lennox-Gastaut (syndrome), it is the most difficult form to treat."

Dr. John Freeman, professor of epilepsy emeritus and member of the Johns Hopkins Pediatric Epilepsy Center's department of neurology in Baltimore, says the ketogenic diet not only works, but that children on it are often very compliant.

"The diet can even cure seizures, and that's something you can't say about any of the drugs," Freeman says. "If the child gets rid of some of their seizures, they will comply. Many who stay on the diet can come off it, eventually, and some can come off of medication and remain seizure free."

The guidebook

Freeman wrote a guidebook on the treatment called "The Ketogenic Diet: A Treatment for Epilepsy," which the Falon family used as a template towards helping Darian.Justin Falon says his daughter has made the connection. "She's kind of a spokesperson for the diet," he says. "She says the 'magic food' is working."

Even her 2-year-old sister, Kendall, knows the benefits. When her mother asks her what the food does, she says, "Stops sweezurs."Lotus joined the family, which already has dogs Dante and Diego, about two months ago. With Libby, 8, as her sister's "greatest cheerleader" and her little sister Kendall's love and affection, Darian does not fight the illness alone; the family is united as a team.Through a local Make-A-Wish effort, Darian chose the dog over wishes such as a trip to Disney World or a shopping spree.

Service dogs such as Lotus are able to recognize the minute changes in the body of a person with epilepsy, such as a change in sweating or secretion. Dogs who help people with epilepsy pay close attention to their masters as well.Dr. Bonnie Bunch, a board-certified pediatric neurologist and assistant professor of pediatric and adolescent medicine at Sanford USD Medical Center says service dogs like Lotus are helpful tools for families fighting epilepsy.

"No one knows for sure how the animals know a seizure is coming," she says. "But the use of seizure dogs is growing."The service dog helping Darian will do several things, says Dr. Gregory Barkley, a member of the Epilepsy Foundation Board and a doctor with the Henry Ford Medical Group in Detroit."Dogs, by their genetic make-up, are programmed to do work for humans, so on a simple level, the dogs protect their charges," he says. "They can be trained to activate an alarm. That's straight-forward. But there's lots of evidence that shows strong interpersonal relationships will help the patient."

As the process of wish-granting began, Justin and Shannon Falon never coached Darian to choose a dog. "We had begun research on our own, and I had asked her if she would want a dog to help her," says Shannon Falon. "But that was before the whole wish thing even started. We mentioned a dog once."

When the foundation's staff visited Darian, they spoke with her, but Justin Falon says they came upstairs more than once to say she was fixed on her decision."We were not surprised. We just wanted that wish to be Darian's and Darian's alone," Justin Falon says."We kept telling her to think bigger," he says. "But she said she wanted a dog that'll let her know if she was going to have a seizure." Wells Fargo sponsored the purchase of the dog.

Lotus will have his first birthday soon, and he's still finding his place in the family. Justin says he has not yet predicted a seizure but has shown promise. The only missing element is developing a tighter bond between Lotus and Darian, which is coming, says Justin.Choosing a dog over a fantasy trip is just one of many choices for Darian. Tough decisions are part of her life, and while she keeps her "magic diet" and develops her relationship with Lotus, her family says they have learned from her.

"You get the feeling that while things are hard, every day, she will not give up," says Justin Falon. "She is very sick, but she has willpower like a small army."The diet is a learning process that is helping for now, says Shannon Falon. "We are confident, in this fine-tuning phase, that we'll get her seizure-free."Reach reporter Jarett C. Bies at 977-3925.


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