Addy’s story: Traveling to Plano for expert epilepsy care

Grisel will never forget the day she got the call from her daughter Addy’s school. Addy, then 13, had suffered a seizure and hit her head. She was in an ambulance on the way to the hospital. Grisel met her at the ER near their home in Tulsa, Oklahoma.

“The ER was so busy that even though she came via ambulance we had to wait outside,” Grisel says. “Addy had never had a seizure before. But then she had another one in my arms as we were waiting to see the doctors.”

Grisel and her family breathed easier when all of Addy’s tests came back normal. The care team explained that having two seizures in a day didn’t necessarily mean Addy had epilepsy. Epilepsy is diagnosed when a person either has two seizures on two separate days, or when tests reveal a high likelihood of another seizure. Addy didn’t fit those criteria so they left the ER with no follow up required.

Six months later, Grisel woke up to her 8-year-old son, Abraham, in a panic. He shares a room with Addy – and Addy was having another seizure. They rushed to the emergency room, where doctors referred them to a local neurologist. But when Grisel called to schedule an appointment, the earliest available slot was six months away.

Grisel is a doctor and knows the rare but scary complications that can happen with seizures, especially during sleep: a child can vomit, choke and even suffocate.

“That fear kept going around in my head,” Grisel says. “I was very concerned about leaving her alone at night and I wasn’t comfortable waiting six months to see a neurologist.”

So she reached out to a Physician Moms Group on Facebook, and got a reply from Afsaneh Talai, M.D., Pediatric Neurologist at Children's Health℠.

Why specialized epilepsy care matters

Grisel’s post resonated deeply with Dr. Talai – not only because Dr. Talai was born and raised in Oklahoma, but also because, as a mom, she understands how important it is to get answers about your child’s health.

“I strive to care for my patients as if they were my own children,” Dr. Talai says. “And part of that is helping get parents prompt answers when they have a concern.”

Oklahoma is one of many places in the U.S. with only a handful of pediatric neurologists and even fewer epileptologists (neurologists with special training in epilepsy). That’s why patients come from across Texas and surrounding states to get epilepsy care at Children’s Health.

“Seizures can happen for many reasons, some serious and some not so serious,” Dr. Talai says. “Seeing a doctor with comprehensive training and experience caring for kids with epilepsy is important to make sure kids get the right diagnosis and treatment.”

Dr. Talai offered to reach out to colleagues in Oklahoma for a consultation. She also mentioned she had openings in the next few weeks, if Grisel could get Addy to Plano, Texas.

“She was so kind to reach out and share advice,” Grisel says. “And when she said she could see Addy sooner, even with the long drive, I didn’t hesitate.”

Getting answers from a doctor you trust

Shortly after, Grisel, Addy and Abraham loaded up the car and made the 4-hour drive to Plano. Addy was understandably scared at first, but learning about epilepsy from her mom and Dr. Talai helped her feel better.

“Dr. Talai was very friendly, welcoming and nice and I’m thankful that she helped me,” Addy says.

Grisel was thankful for Dr. Talai’s explanations and insight both as a physician and a mom.

“She gave me the pathophysiology (how a disease impacts the body) I was looking for because there were things I didn’t understand,” Grisel says. “She explained that sometimes epilepsy is related to genetics or a specific syndrome but often there’s no clear cause.”

They discussed putting Addy on an anti-seizure medication that works well for many kids with epilepsy and makes the likelihood of the complications Grisel feared even lower.

“Dr. Talai showed me studies explaining that one big thing that protects kids when they have a seizure at night is what we were already doing – having another person, like a sibling, sleeping nearby,” Grisel says.

Traveling to Plano for expert care

It took some time to get used to the reality that Addy could have more seizures. Before her seizures, Addy’s parents were starting to give her the freedoms that come with being a teenager, like letting her stay home alone when they needed to run an errand. They’ve been hesitant to do that since her seizures. But with each day that passes without a seizure, they breathe a little easier.

Now Addy is one year seizure free. If she hits the two year mark, they’ll start conversations about weaning her off the seizure medication. In the meantime, Addy is focused on 8th grade, playing the cello and piano, figure skating and soccer. She has some wise words for other kids who experience seizures.

“At first, when you have a seizure, you don't really know what's going on and it might feel scary,” Addy says. “But once you understand, it won’t be scary anymore.”

Dr. Talai offered to refer Addy to a pediatric neurologist closer to home for her ongoing care, or do some visits via telehealth to reduce travel time.

But Grisel, Addy and Abraham keep going to Plano and see Dr. Talai in person. The drive isn't too bad. Plus, they have to keep up with their tradition of getting snacks at Buc-ees and Korean food at H Mart.

“We don’t mind making the trip,” Grisel says. “What’s most important is having a physician who is knowledgeable – and that we trust.”

Find expert epilepsy care for your child

Children’s Health is home to a leading Pediatric Neurology program offering care at five locations including Dallas, Plano, Park Cities and Prosper. Learn more about our Level 4 Pediatric Epilepsy Center in Dallas and Level 3 Pediatric Epilepsy Center in Plano.

Epilepsy 101 (for parents and caregivers)

Explore resources and FAQs to help you support your child with epilepsy and tune in to the Children's Health Checkup podcast for a three-part series focused on understanding and managing epilepsy in children (available in English and Spanish).