SEATTLE -- Sam Cowan is an energetic 5-year-old. He loves a chase, picking up hidden finds and skipping rocks at a lake near his north Seattle home. From a distance, his family looks like others just enjoying a nice day, but what you don’t see is the constant fear of an unpredictable disorder.
“Constant throughout the night, sticking your hand on him, making sure he's breathing -- you just never know,” Sam’s dad, David Cowan, said.
Sam suffers from Febrile Infection Related Epilepsy Syndrome or FIRES. It’s a rare form of epilepsy that hits healthy school-age children out of nowhere.
“There is a lot we don't know about this disease, why it happens, where it comes from,” David said.
All they know is that Sam came down with a high fever, recovered but then several days later Sam had his first round of explosive seizures.
David and his wife, Jennifer, were on the phone with 911, at the same time doing CPR. They will never get over the trauma of having to revive their unconscious child.
“Scary, a lot, at least he's alive,” Jennifer said.
But what was to come days later was even harder.
“We are talking about two to three weeks of constant, maybe 50 to 100, seizures an hour,” David said.
“Watching your child not breathing for that long, I think the longest has been 2 minutes,” Jennifer said.
The seizures temporarily robbed Sam of his body, mind, and even his sight temporarily.
“He said, 'Mom, I can’t see you' -- and I reached out said, I am here,” Jennifer said.
Many kids that suffer from FIRES either don't make it or have long-term brain damage so the fact that Sam is active and developing again is a big deal.
But it wasn’t medication that saved him, it was a new diet
“We typically utilize the ketogenic diet in children that have been on multiple seizure medications that are not fully effective,” said Dr. Jason Lockrow, a neurologist with Seattle Children’s.
Ketogenic means barely any carbs or sugars -- only foods high in good fats.
“When we don't have the sugars available, the body acts to break down fat to produce ketones; those ketones are utilized by the brain as a form of energy,” Lockrow said.
Lockrow says cases have shown that when a child with epilepsy burns fat instead of the typical carbs and glucose, the brain is less stimulated.
“Those changes make the brain less likely to have seizures,” Lockrow said.
And the fact that doctors at Seattle Children’s were able to quickly diagnose and put Sam on the ketogenic diet early on into his seizures is what Lockrow says protected Sam’s brain from further damage.
Sam's now been on the ketogenic diet for almost a year and he's had significantly fewer seizures.
But the lifestyle change means almost everything is off the table and his parents are constantly supervising his food intake.
“He's constantly asking for fruit and veggies so it's really difficult,” David said.
Sam is allowed a tiny serving of a vegetable or fruit every meal, and every meal also starts with a shot of oil like avocado oil.
His parents are spending a lot of time coming up with new ways to make common foods like chicken nuggets, chocolate and ketchup.
Lockrow says the ketogenic diet is helping a third of his patients control their seizures.
Now Seattle Children’s is using the method more often for kids suffering from epilepsy. But Lockrow says what they are doing should not be taken as an endorsement of the diet many are using to lose weight.
“We use this for seizures, we don't use this for weight loss. It's important you to talk to your nutritionist,” Lockrow said.
Lockrow says the ketogenic diet can lead to bone deterioration and other health problems in the long term if people are not getting proper supplemental nutrition.