During a routine morning run, the sound of a nearby siren sent Holly Kearl collapsing onto the dirt trail, hyperventilating and sobbing uncontrollably. This was her first panic attack, triggered by the recent trauma of her five-year-old son experiencing an hour-long seizure that nearly claimed his life.
A Mother's Trauma and a Son's Medical Crisis
The incident that sparked Kearl's anxiety occurred when her son suffered status epilepticus - a dangerous seizure lasting longer than five minutes. His previous seizures had lasted less than 60 seconds, but this one required emergency medics to administer oxygen to save him. After 30 minutes of continuous seizure activity, the risk of death increases significantly.
Just weeks after this traumatic event, another siren triggered an even more public panic attack. While dropping her son at preschool, Kearl dropped to the sidewalk, wrapping her arms around her knees and begging teachers to take her son inside so he wouldn't witness her distress. She needed to call her spouse, Mark, to come help her and their infant child get home.
Her son's epilepsy diagnosis three months earlier was just his latest health challenge. The family had already navigated nine major surgeries, multiple ICU stays, and various infections. They had learned to manage his ostomy and perform urinary catheterization every few hours. Yet nothing had prepared them for the constant threat of prolonged seizures.
The Diagnosis That Changed Everything
Genetic testing revealed the root cause: an SCN1A mutation placing him on the spectrum for Dravet syndrome, a rare genetic form of epilepsy. Though his case was considered mild, the diagnosis came with alarming statistics - up to 20% of children with Dravet syndrome die before reaching adulthood.
The first prolonged seizure prompted a prescription for nasal spray rescue medication. From that point forward, someone had to have eyes on him at all times - whether parents at home or teachers at school - ready to administer the medication if a seizure began. They carried doses everywhere, with two additional doses kept at his school.
Despite these precautions, the rescue medication didn't always work. During his next seizure, medics still had to provide additional medication after approximately 30 minutes. His doctor imposed a strict requirement: they must always remain within minutes of 911 assistance.
Over the next 18 months, the family called emergency services 17 times when their son required medics to administer more medicine and oxygen to save his life. Their world shrank dramatically as many places became off-limits due to distance from emergency help. Air travel, train trips, and even local metro rides became impossible.
Finding Answers Through Community and Science
Kearl's panic attacks continued, often occurring when she heard sirens during solitary moments like morning runs or evening dog walks. She developed coping mechanisms: texting Mark for confirmation their son was safe, blasting calming music by artists like Enya and Jack Johnson, and chanting reassuring mantras.
Remarkably, she noticed that several panic attacks were followed within 24 hours by dangerous seizures requiring emergency help. "It was almost as if something in my body knew it was coming," she reflected.
After joining a Dravet Syndrome Foundation Facebook support group, Kearl found both heartbreaking stories of children lost to prolonged seizures and practical advice that would change their lives. One member suggested trying a different rescue medication not typically approved for children as young as hers.
Thankfully, her son's neurologist agreed to try it, and insurance approved the treatment. The results were transformative: in 16 subsequent major seizures, not once did he require additional medication from medics to stop them.
With faster seizure resolution, his long-term health outlook improved significantly. The family's world expanded again - they visited orchards, pumpkin patches, went hiking, and celebrated family milestones at rural locations previously considered too remote from emergency services.
During this Epilepsy Awareness Month, Kearl reflects with gratitude not only for the medical professionals who saved her son repeatedly but surprisingly, for her panic attacks too. They propelled her to find specialized neurologists, targeted medication, and more effective rescue treatment that ultimately gave her son back his childhood.
