Annie’s Story – Epilepsy Center

Annie Sapone sitting on the beach

UPMC Children’s and UPMC Hamot partnership helps Erie family connect to specialized pediatric care.

In November 2022, Megan Sapone noticed her 4-month-old daughter, Annie, acting strangely.

As a stay-at-home mom to Annie and her son Chase, then two years old, Megan was accustomed to their day-to-day behavior. So, when Annie went quiet and then made a movement her mother hadn’t seen before, Megan knew something was wrong.

“Annie was in her lounger chair, which she loved,” Megan says. “Her eyes started to water, and she made a movement where her arms reached up. She almost looked like she was trying to sit up. When she made this motion, her eyes rolled slightly to the side.”

Concerned, Megan grabbed her phone and started recording Annie. The movements went on for a few minutes, then they stopped. “I called the pediatrician right away, and explained what I saw,” says Megan. “They told me it sounded like seizure activity and to go to the hospital right away.”

Annie Sapone in a onsieMegan and her husband, Bryant, took Annie to the Emergency Department at UPMC Hamot. Through a partnership with UPMC Children’s Hospital of Pittsburgh, UPMC Hamot provides emergency care to kids and helps connect their families to pediatric specialists, if needed.

When they arrived at the hospital, they met with Cory Gotowka, DO. As a pediatric hospitalist, Dr. Gotowka cares exclusively for children in the hospital. While he was examining Annie, she had another episode.

“I remember Dr. Cory telling us that he thought he knew what was going on and not to panic,” Megan says.

Dr. Gotowka admitted Annie to UPMC Hamot and ordered an electroencephalogram (EEG), a test that measures electrical activity in the brain. After a virtual consultation with pediatric neurologists at UPMC Children’s, Annie was transferred by ambulance to the Pittsburgh hospital.

After a series of tests at Children’s, which revealed that a small portion of the lower left quadrant of her brain was different than the right side, Annie was diagnosed with infantile spasms, a rare type of epilepsy. She was in the hospital for 12 days.

“The way that they took their time to run multiple tests to get to the bottom of exactly what was going on with Annie felt amazing,” Megan says. “They didn’t want to miss a thing and you could tell.” Annie’s parents appreciated that an entire team of doctors visited with them to explain her diagnosis and condition. “Everyone at UPMC Children’s was beyond amazing,” Megan says. “As scary as that time was, we knew we were right where we needed to be, seeing the best doctors who specialize in cases like Annie’s.”

A little more than a year after her first seizure, Annie is a happy and thriving toddler. She loves playing with her brother, her puppy, Willow, and her cat, Tiger. She is also walking, talking, and responding to questions about objects by pointing at them.

“At the time all of this was happening I was completely fearful for Annie’s future,” Megan says. “I feared the unknown, like is she going to be able to understand me? Is she going to be able to walk and talk?”

To manage her condition, Annie takes a liquid seizure medicine twice a day and is learning to walk with the help of her physical therapist, who she sees once a week.

Every few months, she follows up with Yoshimi Sogawa, MD, pediatric neurologist at Children’s. Annie’s most recent EEG in November 2023 showed no seizure activity.

“I am so hopeful, and I pray for a bright future for Annie,” Megan says. “I feel like with the team of neurologists at UPMC Children’s, we will be able to overcome anything that may come our way. I would one million percent recommend UPMC Children’s to anyone and everyone.”

For more information about the Epilepsy Center or to make a referral, schedule an appointment, or request an evaluation for a child, call 412-692-6928.