When 4-year-old Lillee Haynes runs through the doors of Seattle Children’s South Clinic for her speech therapy appointment and heads straight for a table covered in crayons, it’s hard to imagine that nearly two years ago she faced hundreds of epileptic seizures each day.
“Her seizures happened so often that I installed a camera above her bed to record any she had at night,” said Aimee Haynes, Lillee’s mom. “One night the camera recorded 200 movements. I was shocked to see how many seizures disrupted her sleep.”
Lillee’s brain didn’t rest until she underwent not one, but two neurosurgeries at Seattle Children’s to remove the diseased area of her left brain, allowing her healthy brain to grow and develop.
“You could say Lillee is most definitely right-brain dominant,” laughed Haynes. “That might explain why she has such a spicy personality.”
The not so Magic Kingdom
Lillee experienced her first known seizure shortly after her first birthday on a family trip to Disneyland.
The episode, described by Haynes as “gentle” and “not your typical soap opera seizure” lasted only 30 seconds. Regardless, intuition kicked in for the mother of four.
“I started researching seizures on my phone,” she said. “I immediately called our pediatrician when the descriptions closely matched what had just happened.”
He advised Haynes to continue watching Lillee, but wasn’t alarmed. He noted it could be a one-time occurrence potentially due to a number of causes, including teething or a fever.
The next morning while the family was getting ready for a day at the theme park, Lillee had another seizure. Again it lasted 30 seconds, but this time it was followed by another and then another.
“The seizures just kept coming and wouldn’t stop,” said Haynes. “That’s when I called 9-1-1.”
After an MRI at the hospital in California confirmed that something major like a tumor wasn’t causing Lillee’s seizures, Haynes flew home to Tacoma with Lillee for further testing.
A few days later, doctors at a local hospital diagnosed Lillee with epilepsy. They started Lillee on an anti-seizure medication and told Haynes that even with treatment she should expect Lillee to have seizures on a regular basis.
Controlling the uncontrollable seizures
The Haynes sought out the expertise of Seattle Children’s when Lillee was admitted to the hospital one day after returning home because her seizures would not stop.
“I didn’t feel like we were in control,” said Haynes. “We wanted to work with Lillee’s doctors to get to the bottom of her seizures.”
Dr. Jonathan Lopez, a neurologist in Seattle Children’s Epilepsy Program began caring for Lillee in the spring of 2015. He started by fine tuning Lillee’s medications to see if different combinations or doses would keep her seizures at bay.
“We eventually had Lillee on a cocktail of four medications,” said Lopez. “Even though we saw some improvement, I prepared the Haynes to look at other treatment options if the seizures returned.”
According to Lopez, if a child’s seizures fail to respond to more than one medication, the likelihood that the next medication will stop seizures for good is very low, about 5-10%. For Lillee, this meant determining if surgery was an option or if a nutrition therapy, like the ketogenic diet, could help.
“Surgery seemed like the best route for us because she was so young,” said Haynes. “We believed it offered her the best chance at a normal childhood because she could still adapt.”
Removing the cause through surgery
Surgery is an option for epilepsy when doctors can pinpoint the area of the brain responsible for the seizures and remove or disconnect the affected brain tissue with limited impact on functions like memory, speech and eyesight. Better imaging and new surgical tools, like laser ablation surgery, continue to improve its precision and safety.
Surgery often helps patients like Lillee who have focal cortical dysplasia – a common type of epilepsy seen in children where patches of abnormal brain tissue cause seizures. To find out if Lillee was a candidate for surgery, she underwent a series of tests, including a week-long video monitoring and an electroencephalogram (EEG) study at Seattle Children’s. The tests measured Lillee’s brain activity to map where her seizures started.
“We narrowed down the source of Lillee’s seizures to the left back side of her brain,” said Dr. Jeffrey Ojemann, division chief of neurosurgery at Seattle Children’s and Lillee’s surgeon. “While her test results weren’t conclusive enough to recommend laser ablation, which needs a clearly defined area, they suggested that removing this small area of tissue could have a significant impact on her seizures.”
Lillee’s surgery was scheduled for September 2015. Since the left side of the brain dictates expressive speech and vision, Ojemann removed as little tissue as possible to fully preserve those functions.
While Lillee’s seizures ceased following surgery, the progress was short-lived. On the morning of Haynes’ 40th birthday, just a month later, Lillee’s seizures started again.
Subsequent testing, once again, showed activity on the left side of her brain.
“It was clear that the tissue spared in the first surgery continued to cause seizures,” said Ojemann. “By removing the rest of the abnormal tissue, we would enable the good parts of Lillee’s brain to work better.”
In a second surgery in early 2016, Ojemann removed the rest of the affected parts of Lillee’s left brain with as minimal impact as possible to the tissue responsible for speech and vision.
Finally breaking free from the grip of seizures
Later that day, Lopez visited Lillee in the hospital. The seizures that gripped her and her family’s life for the last two years had finally stopped.
“When Dr. Lopez stopped by, I let him know that Lillee didn’t receive her normal dose of medication that day,” said Haynes. “From that moment, we started gradually weaning Lillee off her medication.”
Lillee took her last dose of medication in April 2017.
“Considering how many seizures she’s had, Lillee’s progress is nothing short of amazing,” said Lopez. “Speech and occupational therapy continue to help her brain grow and develop.”
Now an adventurous toddler with an independent streak, Lillee loves riding her bike and dancing. This year, she enrolled in the same school her brothers attend outside of Tacoma. She’s also learning to ski. Haynes acknowledges Lillee will face hurdles, which include peripheral vision loss and other developmental issues. For now, they are taking it one day at a time.
“We were very blessed that Lillee was a candidate for surgery and we had the level of expertise at Seattle Children’s right in our backyard,” said Haynes. “If there’s anything I would have done differently, it would have been getting off that plane at Sea-Tac and going straight there.”
Advice to other parents
When asked if there’s anything she’d want to share with other parents who have a child diagnosed with epilepsy, Haynes takes a moment to collect her thoughts.
“If I can help any parent, I want to talk to them. I want them to know there is support out there,” she said. “I would tell them to ask a lot of questions, be a strong advocate for their child, trust their gut and stay hopeful.”
She’s also all about making the best of life going forward.
“We made sure that Lillee still got to meet Minnie Mouse at Disneyland before her second surgery,” said Haynes. “The whole family went on a trip to Hawaii just weeks after her last surgery too. It’s important to remember to continue to find the joy in life, no matter what.”
We are on the cusp of treating the causes – and not just the symptoms – of some of the most common and complex neurological disorders that kids face, which is one of the reasons we launched It Starts With Yes: The Campaign for Seattle Children’s. It Starts With Yes is a $1 billion initiative with a bold vision to transform children’s health. With your help, we will continue to provide financial assistance for families in need; expand necessary healthcare and research facilities; and invest in clinical and research programs to advance pediatric medicine. Learn more or It Starts With Yes to improve how we care for kids like Lillee and transform childhood health for generations to come.