Sonia might be 6 years old, but she’s wise beyond her years. “She’s wicked smart on what she can pick up on—takes after my wife in that way,” her dad, Ryan Lais, explained. Although Sonia is a lot like her mom, she and her dad have one major thing in common: Epilepsy.
“I felt really guilty that I passed on this not so great deal to her,” said Ryan. “It also gives me hope, though, I think I have a unique insight into what she’s going through.”
Sonia’s first seizure
Just after Sonia’s 4th birthday, she started experiencing seizures. These seizures didn’t look like the seizures you see in the movies—where a person may convulse or twitch. But Ryan knew it was a seizure because he experiences them, too.
The Lais family lives outside of the Twin Cities so they brought Sonia to their local emergency department; however, they wanted the best possible care for Sonia, so they eventually decided to have her air lifted to Children’s Minnesota for further testing and treatment. There she was first seen by the Minnesota Epilepsy Group team.
Children’s Minnesota experience
Ryan, along with Sonia’s mother, Jinette Lais, decided that Children’s Minnesota along with Minnesota Epilepsy Group was the best place to go because we care exclusively for pediatric patients and understand the needs of kids better than anyone else.
This was evident during Sonia’s hospital stay when child life specialists would help distract Sonia with things like arts and crafts while her care team performed tests.
“Child life specialists are gifts from God,” said Ryan. “To not see your daughter go through pain was priceless. That alone made me not want to go anywhere else.”
Sonia’s treatment journey
It wasn’t just child life specialists that made an impact on the family’s experience. Sonia’s entire care team took amazing care of her. From empathetic nurses who cared for her without judgement when experiencing side effects to new medications, to doctors who listened to Ryan’s and Jinette’s concerns, allowing them to be part of the decision making. Everyone at Children’s Minnesota and the Minnesota Epilepsy group made a difference in Sonia’s care.
“It’s really important to know you have an advocate who genuinely cares,” said Ryan.
And the Lais family found advocates at Children’s Minnesota and the Minnesota Epilepsy Group: “They listened to us and respected us. We felt like we were part of the decision.”
Due to his own experiences with epilepsy medications, Ryan is sensitive to starting Sonia on new medications because he understands some of the side effects firsthand. But Sonia’s entire care team allowed Ryan and Jinette to be part of the process, and have helped them make the best decisions for their daughter.
Today, Sonia is thriving as the proud oldest sister in a busy family of six. Just two years after her diagnosis, Sonia’s quality of life has improved dramatically. She has been weaned off of two medications, and is now only taking one epilepsy medication and has had successful treatment with FDA approved CBD oil. She has only had three seizures in the past year, and her future looks as bright as ever!
Epilepsy care at Children’s Minnesota
Children’s Minnesota is home to a level 4 epilepsy center, which boasts a full range of pediatric epilepsy experts from Minnesota Epilepsy Group and Children’s Minnesota.
As one of the largest pediatric epilepsy centers in the United States, we treat more than 700 patients with epilepsy. That’s more than any other hospital in the Upper Midwest! We offer the highest level of diagnosis and treatment options to children with epilepsy and their families.