Riding the Brain Wave: When Childhood Epilepsy Appears
Meet Michael Madaio, our chosen hero for November, Epilepsy Awareness Month.
In 2016, eight-year-old Michael Madaio was a fun, quirky, curious kid with a natural love of learning. He started third grade as a playful, outgoing Lego aficionado and an expert in lightsaber battles. Then with no warning, seemingly overnight, he lost his spark and turned inward. Michael became withdrawn and didn’t want to leave the house or even his mother’s side. Suddenly he was no longer the happy-go-lucky kid who loved to ask questions and pipe up with answers. His parents worried his shift in behavior was a response to the bullying he’d been experiencing at school. They resolved to address it, and kept a worried eye on Michael.
A month later, Michael had his first seizure.
Terrified at the five-minute seizure that caused their son to start turning blue, Michael’s parents, Stephanie Frederick and Mike Madaio, rushed him to the emergency room. He was admitted to CHOP, where he was tested and scanned to rule out the most serious indicators for a seizure, including viral infection, bacterial infection, stroke, aneurysm, brain tumor, and other life-threatening conditions. Relieved that nothing dire was found, and that Michael’s brain appeared normal, they were sent home. Michael had lost a week’s worth of memory, but he felt well and went back to school under his parents’ close observation for the next few weeks.
The weekend after Thanksgiving, after a visit to the Franklin Institute’s dinosaur exhibit, Michael had his second seizure. Then, later that same night, his third, fourth, and fifth. Michael went back to CHOP, where he was diagnosed with epilepsy.
A neurological condition marked by repeated seizures and abnormal electrical activity in the brain, epilepsy is much more common than most of us realize, affecting 3.4 million people nationwide and 64 million globally. Nearly half a million children in this country have epilepsy.
Not all epilepsies are created equal. Coming in two types with a variety of subclassifications, epilepsy can affect the brain and body differently according to category. Generalized epilepsy affects both sides of the brain, while focal epilepsy originates from a specified area. Within each type, the category of epilepsy is defined by awareness versus lack of consciousness, as well as what happens in and to the body during a seizure, from uncontrolled spasmodic movements to repetitive motions like pacing or chewing to hallucinatory experiences and more. Some people with epilepsy experience warning signs, a variable collection of sensations called an aura, that a seizure is coming. Some have little to no warning at all and entirely lose consciousness while seizing, putting them at risk for injury.
After Michael’s diagnosis was refined to partial-complex epilepsy, or focal impaired awareness epilepsy, what followed was a period of extreme difficulty in trying to keep Michael safe while finding a treatment that worked to keep his seizures under control. Allergic to the first two medications prescribed, his seizures started coming every couple of months, then every month, every week, every day, then twice a day. He was tested every three months, and even used an ambulatory EEG to try to help neurologists understand the pattern to his seizures, if there was a pattern to be found. Then finally, after a year, an MRI revealed a previously unapparent spot on his brain. After a week at CHOP, seizing every hour, Michael’s team of forty doctors was able to pinpoint the seizures’ location of origin.
“It was scary,” says Stephanie Frederick, Michael’s mom and Senior Designer for Main Line Parent and Philly Family. “Medication was messing with his personality. Kids were giving him a hard time for not being in school, making him feel worse. I didn’t have anybody to go to or talk to about it.”
For a child who experiences even one peer-witnessed seizure, or side effects of medication like loss of coordination and confusion, the stigma of epilepsy and the emotional and social damage can be devastating. Bullies used his condition as fodder for insults. “What are you going to do, have a seizure?” Michael, already embarrassed about school-day seizures and anxious over a probable recurrence, came home crying every day.
But, ever a fighter, in fourth grade Michael was inspired to turn the bullies’ slander on its ear, opting to rise above, educate, and shine, organizing a school-wide presentation for World Epilepsy Day in which he gave a speech, and the Epilepsy Foundation came out to present. Michael spoke to the whole school about epilepsy and how it affected his life, then hosted a question and answer session for the student audience.
“We wanted him to own his epilepsy,” says Stephanie of her newly empowered child, “to educate, and to help people understand how to help him.”
For many with epilepsy, seizures are controlled or even eliminated with medication or proven alternative therapies like CBD oil. Surgery, only applicable to some candidates, is a last resort. For Michael, surgery on the location in his brain that was causing the seizures was the scariest but best option. In January of 2019, with his family at his side, he underwent the surgery that would change his childhood. Since the surgery, for the first time since 2016, Michael has been seizure-free.
Now eleven and in sixth grade, more than three years after his first seizure, Michael has come full circle. While he may require medication for the rest of his life, he remains well and seizure-free. A renegade who continues to lobby his middle school’s administration for the opportunity to create another learning session to educate his peers on epilepsy and seizure disorders, he also wants to help support several schoolmates who have, just this year, had seizures on site during school hours. Michael understands the need for empathy, and the vital importance of opening up, reaching out, and sharing information for the purpose of greater understanding, acceptance, and community.
“He’s happier,” says Stephanie. “He’s doing so well in his classes. He’s been going outside to play with the neighborhood kids, he’s not so sullen and shy. Everyday it gets better. He’s starting to be a kid again.”
Learn more about how to support the people you know with epilepsy with The Epilepsy Foundation.
Special thanks and love to Stephanie, Mike, and Michael for sharing their story with the Main Line Parent and Philly Family Community.