Back to school with no more seizures
July 22, 2019
Riley and her parents, Helaina and James Crump, in the Healing Garden at the University of Chicago Medicine Comer Children's Hospital.
From the time Riley started walking at 18-months-old, Helaina and James Crump knew there was something different about their youngest daughter. On family walks around the neighborhood, the toddler would suddenly stop in her tracks. After a few seconds, she’d snap out of it as if nothing happened.
“Her brain is just big, she’s going to be a genius,” James would say.
The family’s pediatrician in Mississippi told them Riley was just learning about the world around her. But as she grew older, her “daydreams” became more worrisome. Riley would not respond to someone calling her name or shaking her.
“I told my family to stop grabbing her when she would daydream because it was dangerous, and it would startle her once she would come to,” Helaina recalled.
The family accepted it as just a part of life, waving it off as “Oh, Riley is just daydreaming.” But Helaina was concerned about her daughter’s well-being, including her performance in school and how teachers and classmates would treat her. At the start of each school year it was important to Helaina to explain her child’s behavior to school administrators.
“I would tell them that she’s a sweet kid and keeps to herself, but she has this daydreaming problem, Helaina said. “Fortunately, her teachers loved her. They were patient with her. We were really blessed.”
By the time Riley was 7 years old, her daydreams started occurring more frequently. Even more alarming, she’d come out of one daydream and then fall right back into another one.
“If it was just daydreaming, it shouldn’t have gotten worse,” Helaina said.
“That’s when it became real to me,” James said. “We couldn’t snap her out of it. She wouldn’t know anything that was going on around her.”
Now living in the south suburbs of Chicago, Helaina called her family medicine doctor and asked for an appointment as soon as possible. The family was referred to Denice Cook, MD*, an independent community pediatrician practicing at the University of Chicago Medicine Ingalls Memorial.
“From that point on it has just been a blessing,” said Helaina. ”As soon as I walked in, I told Dr. Cook what was going on and she immediately referred us for an EEG (an electroencephalography), gave us a referral to a neurologist and more. She was on it.”
Riley’s parents took her to the University of Chicago Medicine Comer Children’s Hospital for the hour-long test, which records the electrical activity of the brain. An hour later, the Crumps learned that Riley’s “daydreams” were seizures, and she was having 20 to 30 an hour.
“I broke down in there,” Helaina remembered. “I felt hopeless and sorry for Riley.”
The EEG technologist asked the Crumps to stay at the hospital a little longer while the results were discussed by the epilepsy experts in the New Onset Seizure Clinic.
“The clinic’s goal is that early on every child who has an unprovoked seizure will quickly see a team with special expertise in epilepsy,” explained Douglas Nordli Jr., MD, chief of child neurology at Comer Children’s. “We call it a ‘reverse referral’ because the specialist sees the child at the onset of the problem and often accurately determine if the patient can safely follow up with their primary care team or who might benefit from specialized care. Many times families can receive a definitive diagnosis before they leave.”
That’s exactly what happened.
Nurse practitioner Audrey Oetomo, MSN, RN, CPNP, told Riley’s parents that what looked like daydreaming was actually a condition called childhood absence epilepsy.
“I was a little afraid at first because when you think of seizures you think of convulsing,” Helaina said.
Once called petit mal seizures, absence seizures are a type of generalized onset seizures. “When a seizure begins in both sides of the brain at the same time it’s called a generalized onset seizure, and causes a temporary loss of consciousness,” Oetomo explained.
The condition typically affects children age 4 to fourteen. Like Riley, when someone suffers an absence seizure they are unaware of what is going on at that time. They will be very still and their eyelids may flutter or a limb may suddenly jerk. When the seizure is over, they will suddenly return to whatever activity they were performing with no memory of what happened. It’s common for a child to start having trouble in school because the seizures cause them to miss part of their lessons.
Most children will outgrow absence epilepsy. But until then, they are prescribed medication to help control the frequency of seizures.
The Crumps were given a prescription and created an action plan. Within a week on the medicine they noticed a drastic difference.
“She has not had an episode since,” Helaina said.
By the time the school year was ending, Riley was a straight A student. She received a certificate for perfect attendance and a tablet for being a star pupil. The principal even gave the Crumps a personal call to commend them and Riley.
As Riley enters second grade this fall, Helaina is relieved she won’t have to warn the school about Riley’s daydreams. “I’ll just tell them that they have a genius on their hands,” she said.
* Dr. Cook is an independent medical practitioner and is not an employee or agent of Ingalls Memorial Hospital or University of Chicago Medical Center (“UChicago Medicine”).
Recognizing Symptoms of Absence Seizures
Because absence seizures typically last for only a few seconds, they are often missed. However, if your child experiences any of the following symptoms, contact your doctor.
- Sudden stop of motion without falling
- Staring off blankly, as if in a daydream
- Unable to be roused from a seemingly frozen state
- Blinking over and over or eyelids fluttering
- Smacking lips or making a chewing motion
- No recollection of what happened
- A teacher noticing the child’s inability to pay attention
Our Level 4 Pediatric Epilepsy Center
At Comer Children's Hospital, we offer the skill, experience and technology to definitively diagnose childhood epilepsy. Our team of experts provides the highest level of medical and surgical care for complex epilepsy in children of all ages.Childhood Epilepsy & Seizures