Editor’s note: This post is not intended as medical advice. Always consult a medical professional or physician before treatment of any kind.
The moment I saw my 5-year-old son — unconscious and vomiting in my husband’s arms — I knew.
It was 3 AM, and like a video on rewind, my mind raced through the events of the last several years and stopped at the very moment my son’s medical odyssey began. In an instant, it all made sense to me.
“He’s having a seizure,” I said.
Confused from being jarred awake by the sound of our son’s distress, my husband stared back at me blankly. Then he said, “It’s just a vasovagal response to him getting sick” — referring to a common condition where vomiting can cause a person to pass out. “The doctor said it was harmless and not to worry.”
But I was worried, because that didn’t explain his vomiting in the first place. Why did he only vomit in the middle of the night? And if it was just a virus, how come no one else ever got sick?
I wasn’t buying any of it, but after seeing a gastroenterologist, an allergist, and even a cardiologist, none of the tests had pointed to anything more sinister.
But now, even though he wasn’t shaking or contorting in any way, I was sure I was watching my child seize.
“If he were simply ‘passed out,’ his eyes would be closed, not blinking and staring off into space,” I argued, pointing to his fixed and vacant eyes. “I bet these have always been seizures,” I blurted, beginning to cry.
As I reached for the phone to call 911, I made the split-second decision to go against my immediate instinct to get help, and chose instead to record him. I’d learned from every hospital visit before that by the time anyone saw him, we’d once again be sent home with a stomach bug diagnosis.
If my son needed help, then I was going to need to prove it.
The next day in the pediatrician’s office, my voice echoed through the phone while the doctor watched the video thrust in front of him.
“He is breathing, but his eyes are fixed and repeatedly blinking,” I heard myself say in the recording. “He can’t talk or move.”
Then, as the camera zoomed in on his face, my voice cracked as I assured my son. “It’s OK, buddy,” I told him. “Your dad and I are right here, and we are going to get you some help now.”
Then, the video shut off.
“This is a game changer,” the doctor said, looking up at me. “This is the piece that we’ve been waiting for, and this explains everything.”
And by everything, he wasn’t just referring to the vomiting, because that was the shortest leg of our journey.
When my son was just 9 months old, it became apparent that he was behind in his developmental milestones; and by 18 months, he seemed to be regressing. I wasted no time in getting him into therapy. When the therapists acknowledged that he didn’t recognize me, and spent a lot of time absently staring, I feared an autism diagnosis loomed over the horizon.
But autism didn’t quite fit, and two years later, after graduating an intensive therapy program, he had been able to overcome many of his developmental challenges.
“Your son is going to be fine,” I was told. And while I felt blessed to hear that, deep down I knew something still wasn’t right.
His moods swung violently from day to day. He was a good kid, but he was impulsive, fidgety, and had zero attention span. He had trouble making cause-and-effect connections, and I would often watch him struggle to understand things that should have been common sense at his age. He also had extreme difficulty falling asleep at night and would lay awake for hours on end.
Yet a sleep study revealed nothing out of the ordinary, his IQ tests came back normal, and psychological testing revealed no obvious diagnosis.
“Some kids are just born with the volume turned up,” the doctor theorized, before relenting. “Maybe he does have a variation of ADHD.”
That particular diagnosis had been previously ruled out, but as she explained, it was the best theory she had.
Until now.
It turns out, my son doesn’t have ADHD; and his delays, cognitive deficits, and perceived autism were all a result of seizures ricocheting through his frontal lobe while he slept — seizures that have impaired his ability to manage his emotions, form comprehensive thoughts, and learn at an appropriate pace. Even his inability to fall asleep at night was simply his brain being ramped up from faulty electrical activity. His seizures went unnoticed so long and grew in severity to the point where we only noticed them when he began to physically display the grip they had over him.
Pediatric epilepsy is one of the most common conditions a child can have, yet it tends to be one of the most misdiagnosed because of its ability to hide where we can’t see it.
My son has always been the kid that you cannot miss — with a grin from ear to ear and a spunky personality that demands attention. But I’m heartbroken that I didn’t see the signs before.
I know now that my son has epilepsy, but I’m determined to make sure that it no longer has him.