Epilepsy: Amelia's Story

Amelia with her book
Credit: Lavenski Family

Patient Story Highlights

  • Amelia started having seizures when she was 15 months old, and was diagnosed with epilepsy.
  • In August 2023, she was rushed to the hospital due to an uncontrollable seizure that lasted a week.
  • Doctors adjusted her medication and implemented a ketogenic diet to help control her seizures. 

Amelia Lavenski is a child with a bright personality who loves laughing and Mickey Mouse. “Every day, she smiles at something new,” says Amelia’s mother, Stephanie. Amelia started having seizures when she was 15 months old, and was diagnosed with epilepsy — a neurological condition that causes seizures. She was also diagnosed with a rare gene mutation (mitochondrial disorder) that causes prolonged seizures, and would experience one or two seizures every year that would require hospitalization.

But in August 2023, an uncontrollable seizure led to a life-changing event. 

Four-year-old Amelia was rushed to the emergency room, and then admitted to the Johns Hopkins Children’s Center pediatric intensive care unit (PICU). Despite efforts to stop her seizure with medication, it continued. “This seizure was really hard to control, and lasted a week,” Stephanie says. To prevent further complications, Amelia was intubated and monitored by an electroencephalogram, or EEG — a test that detects the electrical activity of the brain.

amelia dressed up as a unicorn

Implementing the Ketogenic Diet

Days later, Amelia’s condition improved, and she woke up from the prolonged seizure, after doctors adjusted her medication and implemented the ketogenic diet, one of the oldest treatments for epilepsy. The high-fat, very low-carb diet can be used to help control seizures. Ultimately, Amelia’s prolonged seizure led to inflammation in her brain, creating severe complications. She was no longer able to walk, move one side of her body, or sit or hold up her head on her own. She remained in the PICU for two weeks, and eventually moved to a step-down unit, where her care team, including Pediatric Ketogenic Diet Center Director Eric Kossoff, formulated a treatment plan. In combination with medication, Amelia would continue the ketogenic diet for now.

“The keto diet can be very beneficial, but it does not work for everyone,” says Kossoff. “In Amelia’s case, implementing this was a lifesaving treatment.”  

Amelia was discharged from Johns Hopkins after three weeks. She then spent five weeks at Kennedy Krieger Institute for additional inpatient rehabilitation. Since then, Amelia has remained mostly seizure-free. She initially continued on the ketogenic diet before transitioning back to a regular diet. She also completes therapy at home and at an outpatient clinic, and is relearning to walk in addition to other social and motor skills.

Amelia’s doctors are hopeful she will keep making strides as her recovery continues. “She is making good progress,” says Stephanie. “And we are slowly getting back to things.”

Amelia's Care Team