But her mother, Debbie Rogers, would notice that at times, Grace would appear to be off balance. And she thought it odd that ever since Grace was 2, she slept excessively—12 hours a night, plus an afternoon nap.
“She was so coordinated, but then she would trip or fall,” Debbie says. “And all that sleeping. It didn’t make any sense.”
It wasn’t until she was 6, when Grace’s kindergarten teacher noticed the same things—as well as Grace appearing inattentive for brief spells—that Debbie and her daughter began a journey at CHOC Children’s that continues to this day.
That journey has brought Grace and her mother to a new unit at CHOC Children’s at Mission Hospital that specializes in the evaluation and treatment of the disorder afflicting Grace: epilepsy.
A program like no other
Opened in late 2012, the four-bed inpatient epilepsy monitoring unit (EMU) at CHOC Mission augments the eight-bed inpatient EMU in Orange.
Developed and run by world-renowned pediatric epileptologist Mary Zupanc, M.D., director of the Comprehensive Epilepsy Program and CHOC
Children’s Specialists division chief of neurology, the epilepsy program at CHOC Children’s has been designated as Level 4 by the National Association of Epilepsy Centers, making it the only Level 4 program in the state run by a free-standing children’s hospital.
The new EMU at CHOC Mission offers quiet, private rooms for patients like Grace to undergo intensive neuro-diagnostics monitoring that includes long-term video EEG (electroencephalogram) recording to help CHOC specialists monitor patients around the clock to pinpoint exactly where and why the child is having seizures. CT scans and MRIs also are used.
According to Dr. Zupanc, the EMU at CHOC Mission is for patients with lower-acuity epilepsy whose disorders generally are under control. Patients with more intractable epilepsy are treated at CHOC’s main campus in Orange, where they also undergo surgery if medication fails to control their seizures.
The EMUs provide the highest level of medical and surgical evaluation and treatment for patients with complex epilepsy, says Dr. Zupanc.
Finding an answer
CHOC’s epilepsy program team consists of clinical and support staff, including epileptologists, neurosurgeons, neurologists, neuropsychologists, neuroradiologists, social workers, physical therapists, dietitians, nurses and nurse practitioners, child life specialists and case managers.
“Epilepsy provides multiple challenges for families,” says Dr. Zupanc. “And nobody wants to talk about epilepsy, because unfortunately there’s still a lot of stigma attached to the disorder.”
Epilepsy is a brain disorder in which a person, over time, has repeated seizures, or episodes of disturbed brain activity that cause changes in attention or behavior. Although much more common than a disorder like ALS (Lou Gehrig’s disease), which affects nerve cells in the brain and spinal cord that control voluntary muscle movement, epilepsy has yet to be a primary focus of extensive attention and research, says Dr. Zupanc.
The epilepsy specialists at CHOC Children’s are determined to help change that.
Grace was diagnosed with so-called absence seizures, which usually last less than 30 seconds and start and end quickly. She was unaware of her seizures—which is common. Sometimes episodes of absence seizures are mistaken for inattentiveness, as was the case with Grace. Sensing something wasn’t right, her kindergarten teacher called Grace’s mom.
“That’s when I knew I wasn’t imagining things—that I wasn’t crazy,” Debbie says.
Grace ended up in the care of the Neuroscience Institute in June 2011. An EEG detected abnormal activity in Grace’s brain, and she was put on medication.
The medication controlled her seizures, but Grace still was sleeping an abnormal amount, which is common for people with epilepsy. CHOC neurologist, Anjalee Galion, M.D., conducted a sleep study in Orange.
A positive place
Grace was among the first patients to stay in the new EMU at CHOC Mission when admitted in January 2013.
Hospital volunteers kept Grace busy with crafts and activities. She even made a banana split. Therapy dogs also regularly visited her. A television and various electronic devices helped Grace pass the time.
“She would love to order food,” Debbie says. “with the room service and all the fun activities, it was almost like a hotel for kids”
CHOC epilepsy specialists still are working to determine what’s happening inside Grace’s brain. Recent tests have detected abnormal brain activity but no seizures, though Grace continues to sleep as much as 16 hours a day. Another sleep study at the EMU at CHOC Mission is planned.
Says Debbie: “We’re going to keep digging. The doctors say that Grace is a unique patient. She doesn’t fit into a pretty box.”
But it sure is a gift, Debbie adds, that Grace, now 7, is being treated at CHOC.
“It’s been wonderful.”
- Despite her happy disposition, Rylee had a big roadblock: frequent disruptive seizures. Six months past her epilepsy surgery, she hasn’t had a single seizure.
- On bad days, Gabriel would experience up to 50 seizures. Today, he is an intelligent, creative and artistic 12-year-old who dreams of being a paramedic when he grows up.
- Seizures are mysterious. They’re hard to predict and they can’t be seen, except with special tests of the brain. So, what causes seizures?