Vestavia Hills family works together to overcome seizure diagnosis

When her daughter Pearl was 8 years old, Lori Ennis started noticing her staring into space, with the episodes growing more and more frequent.

After finding a doctor at Children’s of Alabama hospital, Pearl, now 15, was diagnosed with absence seizures, which are non-convulsive, but she and her family have yet to find medication to effectively treat them. The best they can do is to try and slow them down, Ennis said.

“It’s tough being that age, especially in middle school,” Ennis said.

Learning how to navigate the seizures was tough, she said.

“Early on, you’re just in the trenches,” Ennis said. “You’re trying to do what’s right for your child.”

Panic attacks would strike in the middle of the night, her dad, J.T., said. The only thing that seemed to help was getting in the shower because it relaxes her. One night, after a particularly bad attack, Lori was in the shower with Pearl but wasn’t having success making the situation better, so Lori turned to her husband for help. J.T. went in and said while he was trying to do his best to help, he eventually realized he had only one move left in his arsenal: dirty jokes.

“She cracked up,” J.T. said.

Realizing they needed help, the family reached out and eventually found more help in the form of a psychologist, Dr. Christine Le at Vulcan Psychology. Finding that help “felt like a weight was lifted off my shoulders,” J.T. said.

While it’s possible Pearl will grow out of her seizures, as many children do, she’ll need to stay on medicine until there is no abnormal activity in her brain, Ennis said. The seizures and panic attacks have slowed down, and the seizures are in stasis, but Pearl still suffers from underlying anxiety.

Going through the diagnosis and learning how to help their daughter helped strengthen the couple’s faith, even as they realized their limitations as parents.

“You want to fix it,” Ennis said. “You can’t fix this.”

The couple also has help in Pearl’s 8-year-old sister, Eloise, who has had to learn about things most children her age don’t have to.

“We have bigger talks with an 8-year-old or 7, 6-year-old than most parents probably do,” Ennis said.

Eloise sees the panic attacks and seizures and is now able to tell her parents when she notices it so they can help Pearl, Ennis said.

Over the years, Pearl has also learned how to help herself, her mother said.

“She’s got a lot of years under her belt now,” Ennis said. “She goes on with life just like every other 15-year-old.”

Pearl has adapted to excel in her studies, and her dad said she is an excellent student, with study skills that are “so far … above mine at her age.”

The Vestavia Hills school system has been very helpful, especially the nurses, he said.

In the spring of 2022, Pearl will have an EEG and see what it shows, which will determine what the next steps are, Ennis said.

The family also has benefited from the Epilepsy Foundation and has taken part in its annual Walk to End Epilepsy event, Ennis said. The event “breathes life” to Pearl, she said as she learned she is not the only person who is suffering with the same issues.

Sara Franklin, executive director of the foundation, said knowing about epilepsy can make a huge impact.

“While everyone should know basic seizure first aid, becoming seizure first aid certified takes you further,” Franklin said. “You can become certified in seizure first aid by visiting our learning portal at learn.epilepsy.com. You will learn about both epilepsy and seizures, including how to recognize signs of a seizure and how to use basic first aid steps and when emergency medical help is necessary.”

While everyone should know basic seizure first aid, becoming seizure first aid certified takes you further.

Sara Franklin

The foundation also helped in terms of gaining knowledge. Ennis said she didn’t realize how broad epilepsy is and how much research is still needed. “There’s plenty of work tobe done.”