ANDERSON, Ind. — Joelle Sutton’s bright eyes twinkle above her all-day smile as she takes some of her first steps. She will be 4 in January, but she already has been on a life-changing journey.

Until just months ago, Joelle suffered dozens of seizures every day — sometimes as many as 100 — say her parents, Melissa and Jeff Sutton of Anderson. Her growth and development were stunted.  

“As a mother, I cannot begin to describe the pain you feel watching your child seize every day and not be able to do anything about it. We watched it for three-and-a half years,” Melissa wrote in an e-mail. “I want to help other children and parents not go through this by sharing Joelle’s story.”

The thing that changed Joelle’s life, and her family’s, happened in July. Her parents say that since she went on a specialized diet — they call it a “miracle diet” — she has not had a seizure.

Hard early years

For Joelle’s first years, Melissa says doctors were baffled. They could not explain her frequent seizures. Jeff Sutton says the seizures varied: Sometimes Joelle, frozen, would stare into space. Sometimes she would tremor or her head would jerk from side to side. Jeff says that once, Joelle’s body seized so hard that she turned blue, then gray, then lost consciousness. “It was terrible,” he says.

Joelle had been on anti-seizure medications in varying combinations that worked with limited results. Melissa said side effects from the medications “robbed (Joelle) of who she is.” Sometimes the medications made her lash out violently. Sometimes, they made her seem drunk, Melissa says.

“The first seizure she had was when she was three days old,” she says, recounting a battle the family fought every minute of Joelle’s life. “Sometimes they only lasted 10 or 15 seconds, but a lot can happen in 10 or 15 seconds,” Melissa says.

“Before, everything we did revolved around whether Joelle was going to have seizures or whether she was tired because of having her seizures,” Melissa says. “Every night, going to sleep and praying that your daughter is going to wake up the next day.”

Rare diagnosis

Melissa says the breakthrough came when her gynecologist — the doctor who delivered Joelle — took a fresh look at the medical records. He suggested that Melissa contact a neurogeneticist.

Melissa says Drs. Lisa McGuire at Peyton Manning Children’s Hospital and Dr. Laurence Walsh of Riley Hospital for Children in Indianapolis identified Joelle’s condition as Glut1 ds.

In plain terms, it means Joelle’s body cannot break down and process glucose in the food she eats to provide energy needed for her brain’s development.

Even before Joelle’s diagnosis, Melissa had been scouring the Internet in search of treatment options for her daughter, and she had learned about the ketogenic diet.

“I’d seen it in passing and said, ‘Oh, yeah, right. A diet is going to stop my daughter’s seizures completely,’” Melissa says. But the more she investigated, the more convinced she became. “The poor kid had had so many tests done. ...  We had seen a dozen different doctors.”

Melissa says that when the diagnosis was finally made, Joelle already had been accepted to be placed on a ketogenic diet under the supervision of specialists at Riley.

Small sacrifices

Jeff Sutton still cringes a little when he remembers learning what would happen to his daughter. She would be placed on a diet where the small amount of food she could eat in four daily meals would have to be measured and proportioned on a gram scale. Most of what she would eat would be fats such as oils, butter, cream or mayonnaise.

Because she would be unlikely to voluntarily eat those things, a feeding tube would have to be inserted in her stomach. “I was skeptical,” Jeff says. “At first, I was like, ‘no way.’ ... I was devastated.”

But both parents agreed that if the diet could stop Joelle’s seizures and give her a shot at a life without them, they had to do it. In July, Joelle went to the hospital where doctors supervised her being placed on a diet that would change the way her body makes energy. She would start burning the fat she ate, not fat she stored.

It was a transformation for the parents, too. Melissa would have to learn to measure, proportion and prepare every meal that Joelle ate, and she would have to make sure Joelle ate every bit but nothing more. Anything Joelle ate that was not in the diet could cause the seizures to return.

Melissa says a typical breakfast for Joelle might be a portion of a sausage link, a strawberry, and 30 grams of oil or fat, administered through the feeding tube.

The family polices food and keeps temptations away.  Jeff proudly points out how Joelle closes the gate leading to the kitchen, knowing that she is not allowed before or after mealtime.

“We went to the hospital with one child and came out with a whole different kid,” Melissa says. “The diet’s been proven to work, but they can’t tell you why.”

The diet’s sacrifices are nothing compared with the improvements for Joelle and her parents. “It means we can sleep at night,” Jeff says.

“It makes us appreciate more the things everyone else takes for granted,” Melissa says, giving a sobering example: She now can walk across the room without worrying that Joelle might have a seizure.

Diet makes a difference

“She’s obviously happy,” Melissa says as Joelle plays nearby. She is energetic but calm, almost always smiling, as she works out words in her suddenly expanding vocabulary. Before going on the diet, Melissa says Joelle knew just a few words. Now, it’s more than 50 and growing every day. “She’s talking way more than she ever did,” Melissa says.

She doesn’t cry most of the time like she used to, her mother says. “She cries at appropriate times.”

Melissa’s sister, Juliana, 11, says Joelle “walks in her walker more” and is beginning to walk without it. “She talks more. We play together more,” Juliana says.

When Joelle was having seizures, her physical, mental and motor development suffered. “She was underweight,” Melissa says, “and she just didn’t look healthy. ... She’s gained 12 pounds and grown 4 inches” since going on the diet in July, her mom says. “She’s caught up to her peers.”

Jeff says Joelle loves to go to school at the special needs preschool at Ebbertt Education Center. “She can spell her name and she can color,” he says. “Just a few months ago, she couldn’t even pick up a crayon and make a mark.”

Joelle’s parents say their daughter is in love with Mickey Mouse. “Joelle loves to cuddle, she loves to go places,” Melissa says. “She’ll say, ‘Go, car, bye-bye.’”

That often means going to therapy. Joelle has physical, occupational and speech therapy, as well as her favorite — therapy that involves interaction with horses.

“She surprises us every day,” Melissa says.

Doctor’s view

Riley’s Dr. Walsh, a pediatric neurologist and part of the team of doctors who worked with Joelle, says that medical privacy laws prohibit him from discussing Joelle’s case, but he says the diet she is on probably can have a wider benefit.

“I think I would agree the diet probably hasn’t found its full expression of use across the country,” Walsh says.

“There are some really severe infantile epilepsies the diet has been shown to be very useful for. ... In certain disorders, it has a drastic improvement.”

But Walsh says the diet can be harmful for some metabolic conditions, and those dangers also have to be taken into consideration.

Proponents of the diet say it is infrequently presented as front-line treatment for conditions that it could benefit, if medications are available. And while Walsh says the diet is the preferred treatment for children with Joelle’s condition, he says the diet cannot be taken lightly.

“It’s not a panacea,” he says. “It does take a profound commitment on the family’s part. ... On a day-by-day basis for a family, it gets to be tough. You have to go into it with your eyes open.”

Looking ahead

Joelle’s parents are realistic: Their daughter will continue to have developmental challenges. But the diet will enable her to learn and grow like her parents never dreamed possible.

“She lost three years,” Melissa said, anguished that so few doctors are familiar with the diet and its possible help for children who could benefit.

She will stay on a ketogenic diet at least until puberty, her parents say. At that point, she might be able to transfer to a modified Atkins or suitable low-carb diet.

Talking with other children who have experienced the diet, Joelle’s parents say some of the older children have been able to have a bit of fun with it — some take their oil straight from a shot glass.

But every child and parent on the diet must be vigilant, Joelle’s parents say. Many of Joelle’s old favorites such as spaghetti are off limits. She and her family will have to treat candy and sweets like poison. Special occasions centered around food will have to be adapted for Joelle.

Melissa says she’s gotten some strange looks when she goes to a restaurant and pulls out a gram scale to measure her daughter’s food. “I know they don’t want to be rude,” she says, “but I wish people would just ask.”

She says she hopes that Joelle’s experience with the diet might help just parents and children who might be going through something similar.

“I never thought it would help as much as it did,” Melissa says. “I would not wish this diet on my worst enemy, but we thank God we have it.”

Contact Dave Stafford: 648-4250, dave.stafford@heraldbulletin.com