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Lilah's epilepsy was difficult to manage—until she came to the Ketogenic Diet Clinic at Gillette Children's.
Eight-year-old Lilah Schwab loves to wrestle—her parents, her siblings, even her teachers and aides at school have all met “The Silencer," Lilah’s wrestling alter-ego.
Lilah also has been wrestling with medical challenges since birth. She was placed on a CPAP machine, and within a day of coming home, her mother noticed her skin turning blue. Lilah turned blue again at the hospital, prompting an emergency helicopter transfer to a larger facility. Despite extensive tests and imaging, doctors found no clear cause. An EEG showed random apnea episodes, but no definitive diagnosis. Lilah eventually returned home with an apnea monitor, and although the apnea eased, she continued to experience concerning neurological symptoms.
A Visit to Gillette Children's Leads to Solutions
Pediatric neurologist Nicole Williams Doonan, MD, examines Lilah's reflexes during a follow-up appointment to discuss Lilah's progress on the ketogenic diet.
Eventually diagnosed with FBRSL1 gene disorder, which is known to cause epilepsy, Lilah and her family came to Gillette Children’s with a goal in mind: solve the big mystery of how to help alleviate Lilah’s seizures, which occurred nearly 100 times a day. Lilah tried medications, but they did not work to control her seizures and left her feeling agitated and grumpy. She and her family needed another solution.
Lilah, along with her parents Ariana and Ryan, met with pediatric neurologist Nicole Williams Doonan, MD, who immediately impressed them. “She showed us how compassionate she was and how much she wanted to solve the mystery,” Ariana remembers. “We felt so comfortable with her.”
Dr. Williams Doonan was excited to partner with the Schwabs to explore the ketogenic diet as a treatment option. The classic ketogenic diet is a specialized high-fat, low-carbohydrate diet that causes the body to continually produce ketones. Ketone production causes a state called ketosis, which decreases seizures in some children.
Ketogenic Diet Provides Relief for Lilah's Seizures
Lilah Schwab was all smiles at a recent appointment to follow up on her use of the ketogenic diet alongside her father, Ryan.
Lilah began the ketogenic diet with a four-day inpatient stay at Gillette, where her blood sugar levels, vital signs, and ketone levels could be closely monitored. During Lilah’s time at Gillette, a team of experts —including a dietitian— worked to help the Schwabs with keto-friendly menu planning, resources, and tips. Ariana and Ryan found recipes that allowed Lilah to enjoy things like birthday cake and favorite family meals.
“Lilah had an excellent response to the ketogenic diet,” says Dr. Williams Doonan. “Several years later, her seizures remain well-controlled on the diet alone. Because her seizures started when she was a baby, finding an effective treatment has had an even greater impact on Lilah’s brain development, behavior, and quality of life.”
Every three months, Lilah visits Gillette for screenings to ensure she is still responding to the ketogenic diet in healthy and beneficial ways. Today, Lilah enjoys music class, watches Bluey (her favorite show), and eats her keto-friendly lunch in the school cafeteria with friends.
“Lilah’s care at Gillette and the keto diet have really improved her quality of life,” says Ariana. “Without her seizures progressing and impacting other parts of her brain, Lilah can relax and fall asleep at night. As her parents, we can feel comfortable leaving her with her grandparents and bringing her to school without a catastrophe happening. It’s been a big, big help.”
Has your child experienced a seizure or recently been diagnosed with epilepsy? Request an appointment with one of our pediatric neurology experts today.
