Deepti Rawal, of Avon, CT, was at home celebrating her twin son and daughter’s birthdays with them when she noticed something strange happening to her little girl. “The kids were having a snack, and all of a sudden I noticed Mehek spilling milk and experiencing a jerking movement in her arm.”

Deepti, who is a doctor, thought Mehek might have had a partial seizure, when an electrical disturbance of the brain is limited to one area. “But you never want to think about anything like that for your own kid,” she said. In November 2017, Deepti took Mehek to her pediatrician who scheduled an electroencephalogram (EEG), a test that assesses electrical activity of the brain. During the two-week wait for the results, the number of seizures Mehek was experiencing grew to at least two a day.

The results from the EEG confirmed that Mehek was, indeed, having seizures. “Her EEG looked really awful,” said Deepti. Mehek was admitted to a local children’s hospital immediately for further testing, and they tried several medications with very limited improvement.

Over the next few months, Mehek started having as many as eight seizures a day and her cognition began declining. “She went from being a 3-year-old to a 1-year-old,” said Deepti. “It was devastating for all of us,” she said, adding that Mehek lost her speech during that time. “Mehek’s twin brother and her older brother couldn’t help but notice that something was going on.”

One of Deepti’s physician colleagues suggested she reach out to a neurologist at the Cleveland Clinic in Ohio who then recommended she contact Sanjeev Kothare, MD, chief of Pediatric Neurology at Cohen Children’s Medical Center.

Deepti first got in touch with Dr. Kothare, who reviewed Mehek’s prior EEG reports and shared them with Shefali Karkare, MD, the director of the Pediatric Epilepsy Center at Cohen Children’s. Suspecting electrical status epilepticus during slow-wave sleep (ESES), he ordered an overnight EEG. ESES is a rare form of epilepsy in which patients have seizures while sleeping. The overnight EEG showed continuous epileptic activity of Mehek’s brain during the slow-wave portion of sleep, confirming her ESES diagnosis.

Dr. Kothare has treated about 300 patients nationwide with ESES and knew that Mehek would need aggressive treatment for her brain to develop properly. She received multiple antiseizure medications, including high-dose steroids, which broke the pattern of overnight epileptic activity in her brain. Her seizures were reduced to two to three a day and her cognitive abilities have steadily improved over the last year.

“She’s growing and developing,” said Deepti. “Dr. Kothare has been amazing every step of the way. He’s a brilliant physician who was very invested in our daughter and did her justice.”

To help address Mehek’s remaining seizures, Dr. Kothare referred her to Shaun Rodgers, MD, a neurological surgeon at Cohen Children’s. He recommended vagus nerve stimulation, which involves implanting a small device into the left chest area. It sends mild pulses to the brain through the left vagus nerve in the neck at regular intervals, helping to deter seizures. It requires a short outpatient procedure that typically takes an hour or two. Mehek underwent the procedure about three months ago.

Deepti hasn’t noticed a reduction in seizures yet, “but the treatment can take up to six months to start working, so we continue to remain hopeful,” she said. 

In the meantime, Mehek is enjoying playing with her siblings and connecting with them a lot more. “All three play together and are very happy kids nowadays,” she said, adding that the overall treatment plan at Cohen Children’s and the doctors there have “definitely helped Mehek to become much, much better.”