Ketogenic diet offers hope for epileptic Ind. girl
FORT WAYNE, IND. — The little girl with long, dark hair sat on the sofa and nestled protectively beside her parents as they took turns telling a remarkable story of how she fought epilepsy and how she has beaten it for a year and a half.
For 10 about minutes - not much longer - Autumn Forti listened patiently, perhaps reliving moments she would prefer to forget and maybe someday will. Her small, soft hands were folded in the lap of her ankle-length print skirt, and her shoulders were rolled forward ever so slightly, the way shy 9-year-olds scrunch down to make themselves smaller.
It wasn't until her mother, Ann, remembered the conversation that the then-unexplained seizures might be attributed to a possible allergic reaction to the newest family dog - and that they might have to give away Taffy - that Autumn ended her silence and began to weep out loud.
Simultaneously, Ann and Scott Forti embraced their sobbing daughter and, almost in unison, said reassuringly, "But we didn't have to, did we?"
No, they sure didn't.
Taffy, a Bernese mountain and sheep dog mix, still roams the backyard, along with dogs Cosette and Tusker that woof and yelp and greet visitors to the Fortis' rural home a few miles outside of St. Joe in DeKalb County.
In that backyard, a deck had been constructed off the back of the home, a children's swing set was assembled, and, on a gorgeous Sunday, April 29, 2012, a wedding was held. And it's because of that outdoor wedding of Autumn's oldest brother, Kyle, and his wife, Hope, that the narrative begins of a little girl, an outpouring of love and a change of diet that may have saved her life.
It was March 29, exactly a month before the wedding, when Ann and Autumn were inside the Hobby Lobby craft store off Coldwater Road to buy supplies for Hope's wedding shower when, without warning, Autumn, then 7, dropped to the floor and began to uncontrollably spin in circles.
Scared and puzzled, the following day they saw their family physician, who suggested that it could be anxiety, since Autumn was to take part in her brother's wedding. But as she was leaving the doctor's office, Autumn went into another seizure. And then another when they got home.
By Monday, they were seeing a neurological specialist, Dr. Atiya Khan, who prescribed medication for what was diagnosed as pediatric epilepsy, The Journal Gazette reported (_http://bit.ly/1exiAGv ).
"Looking back, I was just desperate," Ann Forti says. "(Dr. Khan) gave me some medicine, and we were gone. We went right from there to Walgreens to taking that and putting it in. At the end of the week, (the seizures) are getting worse."
Ann called Khan again.
"She called me, and we said, 'OK, let's do some other medications,' " Khan says.
"But that didn't work. She called me back and said she's doing it much more often. So in the end, we wound up admitting her to the (Parkview Regional Medical Center). I can't remember how many, but she had three or four IV medications, and that didn't help."
Khan noticed that whenever Autumn seized, she always spun in the same direction, even on the bed.
"So I called the Cleveland Clinic," Khan says. "I said, 'Do you have any other suggestions?' And they said, 'You've done everything that we would do.' . But they said there were some other things. 'Either you could do it, or send her to us.' "
In a matter of hours, Autumn and her family were headed to Cleveland.
Ann and Scott Forti were now on a mission to educate themselves about epilepsy. They talked to more doctors. They devoured brochures. They read books. And there was this one book - there were so, so many - in which there was a brief mention of a little-known TV film about an epileptic child, ". First Do No Harm," starring Meryl Streep, whose performance earned her an Emmy nomination.
Intrigued, Ann and Scott told their son, Kyle, who had left finals week at his college in Hillsdale, Mich., to join his family in Cleveland, to find a copy of the movie, no matter how much it cost. At a DVD store a few blocks away from the clinic where his youngest sister continued to seize, he found one copy - for 99 cents.
The film, which debuted on ABC in February 1997, was directed by Jim Abrahams, whose real-life son, Charlie, had his own battle with epilepsy.
After heavy doses of medication and even surgery - all unsuccessful - Charlie eventually becomes seizure-free shortly after Abrahams is told about, and adopts, the ketogenic diet.
It is a strictly measured, high-fat, low-carbohydrate diet with adequate protein developed at the Mayo Clinic in 1921. Because seizure-free results were seen in epileptic patients who fasted, the ketogenic diet is used as a substitute for fasting, which cannot be sustained for a long period of time.
Abrahams' sole purpose in making the film was to educate the public about the diet that saved his son.
Ann and Scott Forti prayed for the same miracle for their youngest daughter.
"Watching that movie in the hospital room, while simultaneously watching Autumn continually seizing in her hospital bed, tears rolled down my face," Ann wrote in her blog. "I was sure that the diet was going to be our only hope, but it also instilled fear in me - what if the diet didn't work either?"
For nine days, the Cleveland Clinic treated Autumn. Yet with no real cure to stop the seizures, the Fortis were sent back home with $1,000 worth of medication and uncertainty about a diet they were about to attempt.
All this, and a wedding was 48 hours away.
"Every one of the kids had 'Autumn duty,'" Scott Forti says of Autumn's four brothers and three sisters.
"I would not let her walk anywhere without somebody next to her for fear that she would fall through a window, fall down the steps, hit something outside. There were times when you'd turn your back, and all of a sudden, she dropped."
And although Autumn had a couple of seizures in the process, Kyle and Hope were wed that evening in the outdoor ceremony.
Another immediate challenge was how to continue giving Autumn medications the Cleveland doctors prescribed while, at the same time, start her on the ketogenic diet. How much medicine? How much food, and what kind? Where to turn? Who to ask?
The Forti family remained steadfast in their deep religious faith. And when Ann returned home at 11:30 p.m. from a women's prayer meeting, there was a message on her phone.
"I don't know your name, but I know if you are a seizure mom, you are still up."
It was from Tresa Gibson, calling from Canada. She had heard about Autumn from a woman named Kate, who exercised with Ann's sister, Lisa, in Wisconsin.
Gibson was also a "seizure mom" whose son Fletch suffered seizures "for hours on end," according to Ann Forti, and even showed symptoms of autism. "But she brought him back to health through the ketogenic diet."
It was Gibson, Ann and Scott say, who would always be there to answer their ketogenic questions.
Not only did they have a path, but now they had someone to light the way.
A few days into the diet, of weighing foods a gram at a time, the way a ketogenic cookbook they acquired explained how to do, an hour of Autumn being seizure-free turned into two, and she had a night of peaceful sleep. Two days turned into four. A week became almost a month.
Almost.
"It was skating night, and we all got our skates, and we're ready to go," Ann says. "It's 2 o'clock, and she has a seizure. Then she had another one, and another one. They're about 20 minutes apart. I just remember going into the bathroom and crying."
Ann told Tresa the horrible news; that the seizures returned. But Gibson told her to think back on what was made that day, what was different than before. It had to be something.
Like a movie being played in reverse, Ann's thoughts retraced everything she did and everything she made.
"I was making her ice cubes, with a little bit of lemon juice and some Stevia (an artificial sweetener) in there," Ann says. "I'm talking about a minute amount of lemon juice. It was the lemon juice. There was too much carb.
"We almost took her off the diet and put her back on the medications," Ann says. "But we said, 'Let's give it one more shot.' "
At 9:08 a.m. on May 30, 2012 - one of the kids remembered the exact time - Autumn had her last seizure.
In those early days, the entire household held its breath. One by one, whether it was brothers Joshua, now 19; or Joe, 18; or Russell, 16; or sisters Rebekah, 13; Kristen, 12; or Promise, 10, they would almost whisper to their mom or dad, "Has she had one yet?"
No, not yet.
And now it's November, which happens to be Epilepsy Awareness Month.
Perched on a step stool in the kitchen, Autumn can make her own food now with the precision of her mother. Milkshakes. Chocolate chip cookies. The cheesecake berry crunch. And pizza.
How does she make the pizza?
"With macadamia nut butter, and then mayonnaise, and oil, and egg whites," Autumn sheds her shyness long enough to rattle off the ingredients.
To further illustrate her daughter's cooking skill, Ann brings forth a full plate of peanut butter granola bars.
"Fourteen grams of coconut oil," Ann says with satisfaction.
"Twelve!" Autumn corrects her.
The little girl nods when she's asked if she remembers the seizures.
"I don't like them," she says sadly, then appears to grow small again, as though she is hiding from the demon.
With Autumn and Ann in the kitchen, both attacking the cheesecake berry crunch, Scott shares the worst days, and he says there were many.
"I'm on my knees, crying, and it's like every four minutes. . I'm like, 'This isn't happening.' I'm watching her every four minutes with a seizure. And I'm holding her. She goes, 'Daddy!' Then, 'Uhhhhhh.' Then, 'Daddy!' Then, 'Uhhhhhh.' "
The doctors, the pamphlets, the books, the small army of "seizure moms" who still share their stories and recipes and tears - they all say the same thing: The ketogenic diet cannot be sustained throughout a lifetime, because it will cause kidney and liver complications.
"Here's the deal," Ann Forti says: "Kids are generally on it from one to three years, then they go off it, and they're eating Pizza Hut and Dairy Queen."
It's been a year and a half now since Dr. Khan first treated little Autumn Forti; a year and a half since the child spun relentlessly from epileptic seizures that, during her stay at the Cleveland Clinic, tangled and matted her long hair so violently, there was concern they would have to cut it off.
"It is very dramatic to where she was to where she is - extremely dramatic," Khan says. "I'm thrilled."
Since then - "because of Ann," Khan says - Parkview has added a ketogenic dietitian.
"It's very difficult," Khan says of maintaining the discipline of the diet. "First of all, you have to have an intelligent child to do this - to make sure she doesn't eat something she shouldn't.
"And Autumn's mom is very unique, because she did most of it on her own. What a wonderful family."
While the family email address is cleverly named "ten40s," Ann Forti now points out the family has grown to 11, with the addition of Hope.
Yes, Hope. Of course.
