The first time it happened, I was on a run near my home. Recently, my then 5-year-old had experienced an hour-long seizure that could have ended his life if medics hadn’t brought him oxygen when they did.
When I heard the sound of a nearby siren, I dropped onto the dirt trail hyperventilating and sobbing until someone running by asked if I was OK. Their words broke me out of my panic, and I made it home.
There, I managed my son’s medical care and readied him for preschool, leashed up my dog and loaded my 3-month-old infant into a stroller. My older child’s classroom had a door on the side of the building, and one of his teachers came out to hug him when we walked up.
Then another emergency vehicle’s siren began blaring.
My body’s response was immediate — I dropped onto the sidewalk, my arms wrapped around my bent knees. “Take him inside, don’t let him see me,” I blurted out, and his teacher did.
A few minutes later, she came back to check on me, and her presence helped me pull myself together to start walking my infant and dog back home. After one block, I sat on the curb crying; I had to call my spouse, Mark, to come help us.
My child had been diagnosed with epilepsy three months earlier, but that was his first time experiencing an emergency seizure called status epilepticus. These are seizures that last longer than five minutes — and they can be dangerous. After 30 minutes, the chance of death increases. His handful of previous seizures had lasted less than one minute.
Nearly 3.4 million Americans live with epilepsy. For him, epilepsy was just his latest health condition — Mark and I had helped him through nine major surgeries, many emergency room and intensive care unit stays, and multiple infections. We had learned to manage his ostomy and perform urinary catheterizing every few hours.
There had been plenty of scary days, like when he had an infection after major spine surgery. As I clutched our son in the emergency room and Mark sat on a plane flying home from a work trip, we read on our phones that around 1 in 5 people die when they have a spine infection. But, aside from the day of a subsequent major surgery, after which he had yet another scary post-surgery infection, I had not panicked like this before.
A few weeks later, genetic testing prompted by this seizure showed that my child has an SCN1A mutation. A footnote in the testing said he is also on the spectrum for a rare, genetic form of epilepsy called Dravet syndrome. However, because he was on the mild end, his neurologist didn’t focus on it.
His first prolonged seizure also prompted a prescription for a nasal spray seizure rescue medication. From then onward, someone — me, Mark, or a teacher at school — was required to have eyes on him at all times in case a seizure began and we had to administer the spray. We always have a dose nearby at home or in our backpack of supplies when we go out. There are two doses at his school.
During his next seizure, we used the rescue medication, but medics still had to provide additional medication to stop the seizure at around 30 minutes; another dangerous seizure. As a result, our son’s doctor said we needed to keep him within a few minutes of 911 help, always.
It was true, because sometimes his rescue medication stopped the seizure, and sometimes it didn’t. There were 17 times over the next 18 months that we called 911 because we needed medics’ help to administer more medicine and oxygen to save his life.
Because of the distance restriction, many places became off-limits. Before I agreed to go anywhere with my son, I looked up the closest fire station or hospital, and many times, we had to stay home because of the distance from emergency help. We couldn’t fly, take a train or even get on the underground route of the local metro. Our world shrank.
It wasn’t until my child had a seizure that put him in the ICU – prompting one of my longest panic attacks a week later ― that I looked up Dravet syndrome. Among the many alarming facts about the syndrome, I read that up to 20% of children die before adulthood. I joined a Dravet Syndrome Foundation Facebook support group for caregivers, where people periodically post about their child dying from a prolonged seizure. It is heartbreaking and terrifying.
My panic attacks reminded me that his situation was growing dire. I needed to act.
The author’s two children on a recent rural outing to pick apples and hike.
Photo Courtesy Of Holly Kearl
I found and made appointments with three Dravet syndrome specialists out of state. They all agreed his seizures were frequent and severe enough that he should take medication targeted for people with Dravet syndrome. We switched his care to one of these doctors. Five months after we received the genetic testing, he began targeted medication.
Given the trajectory he was on, we think this medication stopped his condition from getting worse overall. However, we were still calling 911 every few weeks, and I was still having panic attacks.
Usually, the panic attacks occurred when I heard sirens while alone on a quick morning run or walking our dog alone in the evening. I didn’t have them if my son was with me. In time, I often could ward off the panic until the siren sound faded by texting Mark for confirmation that our son was OK, and I learned to blast calming music by musicians like Enya or Jack Johnson.
Sometimes I’d chant, “He’s OK. It’s not for him. He’s OK. It’s not for him.”
But my tactics didn’t always work. There were several times that I had a panic attack, and within the next 24 hours, he had a dangerous seizure requiring 911 help. It was almost as if something in my body knew it was coming and was warning me to stay alert and not to let my guard down.
Looking back, I see the panic attacks were telling me in a way I couldn’t ignore that I needed to figure out how to help my son.
One year ago, after another siren triggered a panic attack, I posted in the Dravet Syndrome Foundation caretaker support group about having them. One member suggested we try a new rescue medication. It was one that is not usually approved for kids as young as mine, but she said it had helped her young son.
Thankfully, my child’s neurologist agreed to try it when I asked, and insurance approved it. I am grateful.
Since we began using the new rescue medication, my child has had 16 major seizures, and not a single time did he need additional medication from medics to stop them. The faster the seizure ends, the more likely it is that he will fully recover, so his long-term health outlook has improved.
And since making the switch to the new medication, we have been able to expand his and our world again. This fall, we went to an orchard with friends to pick apples, we went to a pumpkin patch and we went hiking. We were also able to join Mark’s family at his granny’s rural farmhouse to celebrate her 90th birthday.
As I reflect on my son’s journey this Epilepsy Awareness Month, I am grateful for all the medics and medical staff who have helped him, but also, surprisingly, I am grateful for my panic attacks. I see how they helped propel me to find a more specialized neurologist, targeted medication, more effective rescue medication and a support group that has become a lifeline.
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It’s been months since I’ve had a panic attack when I hear sirens. But if they start up again, I will know to listen carefully to what they might be telling me.
Holly Kearl is a writer and nonprofit professional based in Northern Virginia.
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