Kylen’s Story: Ketogenic Diet to Control Seizures
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Just a few days after he was born, Kylen suffered four seizures and was diagnosed with epilepsy. Nothing worked to stop his seizures until CHOP’s Dietary Treatment Program helped his family establish the ketogenic diet. Since then, his daily seizures have stopped completely, among many other benefits.
Kylen has mild cerebral palsy, is a stroke survivor, is on the autism spectrum, and has a type of epilepsy called Lennox-Gastaut syndrome (LGS). It is one of the most difficult-to-treat epilepsies. He has been tried on many combinations of medications in an attempt to control the seizures.
When he was 7 years old, Kylen had a vagus nerve stimulator (VNS) implanted under the skin of his chest. The VNS sent electricity through a nerve in his neck to his brain to reduce the frequency of his seizures. Still, nothing worked to stop the seizures completely. The longest Kylen ever went without a seizure was two weeks.
Frustrated at seeing her child suffer, Kylen’s mother, Lisa, made the decision to travel from their home outside Pittsburgh to Children’s Hospital of Philadelphia (CHOP) for a consultation to see if Kylen was a candidate for a surgery known as corpus callosotomy. Kylen underwent a positron emission tomography (PET) scan to pinpoint where in his brain the seizures were coming from to determine if the surgery was an option.
The PET scan found that Kylen’s seizures were coming from all over his brain, so corpus callosotomy wasn’t an option. But there was one treatment option the family hadn’t yet pursued: the ketogenic diet.
The ketogenic diet is a very high-fat diet that has been used for 100 years to treat epilepsy. It is the only metabolic treatment of epilepsy that is currently available. It is often turned to as a treatment option for kids with epilepsy who are not successfully treated with medication or are not candidates for surgery. About two-thirds of children on the diet have a greater than 50% reduction in seizures, and up to 25% can become seizure free.
CHOP’s Dietary Treatment Program uses a family centered care approach to establishing a ketogenic diet plan tailored to each child, with expert input from a team that includes neurologists, dietitians, a medical chef educator, nurses and a social worker. The team determined how much fat, protein and carbohydrates Kylen should have and created a keto diet plan tailored specifically for him.
Kylen was admitted to CHOP to begin the diet gradually. During that time, his mother learned all the details about diet management and how to cook keto meals. All the food that Kylen eats must be weighed on a food scale to the tenth (0.1) of a gram.
Before starting the ketogenic diet, Kylen had been having at least one seizure a day. Once on the diet, the daily seizures stopped completely. After starting the diet, Kylen enjoyed 36 wonderful, seizure-free days. Then, unfortunately, his VNS device malfunctioned and had to be removed. The malfunction paralyzed his left vocal cord.
Kylen’s seizures returned, but thanks to the diet, they were nowhere near as frequent. He got a service dog named Loki that was trained to alert Lisa when a seizure would occur. Loki, now 11 years old, recently retired; Kylen’s new dog, Jason, is 1 year old dog and training to be his new service dog. Jason has already alerted Lisa to seven seizures, and every time Kylen has a meltdown or big emotions, Jason is right there licking Kylen’s face and comforting him.
Being on the keto diet has had benefits beyond reduced seizures for Kylen.
“He felt better and was more awake, alert, active and social,” says Lisa.
His teachers noticed a huge change in him at school. He could go on walks without needing to sit down frequently, was more attentive during class, socialized more and seemed to be in better spirits.
The diet also opened Kylen up to trying new foods. Before keto, there were only five or so foods he would eat. Now he eats broccoli and all sorts of things he never would have tried before, says his mom.
Since being on the diet, Kylen has also lost excessive weight that he had gained from medications. He is currently down 110 pounds since starting the diet.
“He's at a much healthier weight, is no longer considered pre-diabetic, and is able to help more around the house,” says Lisa. “He definitely has a better quality of life now than before keto. And it’s such an awesome feeling to know we are doing it. It’s me putting in my blood, sweat and tears, and him being open to new foods.”
Kylen's keto regimen has been modified twice since beginning the diet because he missed some non-keto foods.
“The keto diet is much easier to transition for younger kids who don't know what they're missing,” says Lisa. “I think we've found a good compromise with this last modification. He's happier with the food options and his seizure frequency hasn’t changed much.”
Despite the burden of his health conditions, Kylen has a lot in common with other 16-year-old boys. He loves video games and anime, and he “is absolutely hilarious,” says his mom.
“He’s sarcastic and witty,” she says. “He’s just a really sweet kid who loves to hang out with his friends. If he wasn’t on the diet, he would be in a much worse position. I'm glad we finally gave it a shot. It’s working wonders for him; it’s what’s keeping him going.”