Last September, just after his 2nd birthday, my son was brought to Mount Sinai’s PICU, and my wife, Meredith, and I felt a sense of calm wash over us. I realize it’s strange for a parent to say, that having her toddler land in the intensive-care unit is a relief. But for nearly a year, our child, Theo, had been exhibiting a series of increasingly debilitating, seemingly discrete symptoms that we suspected were connected to something larger, but none of his doctors could see it. They weren’t even able to diagnose the individual issues. We were terrified we were running out of time—that we were losing him.
But I promise this is a story with a happy ending about how a harrowing bout of stomach flu, two teams of doctors at Mount Sinai, and, strangely enough, a hit song by Justin Bieber saved my child’s life. Yes. I’ll explain.
Right after Thanksgiving 2012, our then-14-month-old son landed in the ER after having a seizure. A 48-hour EEG was inconclusive, and an MRI came back normal. His neurologist, an epilepsy specialist, put him on a medication called Keppra, which left him sluggish and nauseated. That is, during his few waking hours. He slept a 12-hour night and napped for four hours a day—and could sometimes sleep even longer if we didn’t wake him. Meredith and I decided to go against our doctor’s orders and, under the supervision of my wife’s pediatrician father, weaned Theo off the drug. But he was still enervated, and the seizures returned.
Our neurologist warned us that seizures were dangerous: They could erase memory and cause cognitive delays. Which was worse, we had to ask ourselves, a zombie toddler or the risk of brain damage? They were both devastating, we quickly discovered. Because although Theo was initially hitting his milestones—walking, running, climbing, jumping, and talking just as much as his peers—he began to stagnate as his friends were stringing words together. And then he was forgetting the ones he knew. We were frightened that our son as we knew him was disappearing before our eyes. What choice did we have but to grudgingly heed the neurologist’s advice and put Theo back on Keppra—at least his lethargy would be temporary, right? We had one condition, though: that we gradually decrease the dose.
It didn’t help. He was collapsing on the playground. During playdates. In his highchair. He was groggy all the time.
Though his seizures began at 14 months, things didn’t get really bad until four months later. Theo was like a drained battery when he woke up, until he’d pound an eight-ounce bottle of whole milk with a scoop of brown-rice cereal mixed in. Some mornings, he’d projectile-vomit soon after. He didn’t cry, he wasn’t feverish, and he’d proceed with his day as if it had never happened. His room stank of vomit for months.
Although his need for fuel was becoming constant, my wife and I could never get him to eat enough—sometimes, he swatted us away, refusing every bite. We felt incompetent. How was it that we couldn’t nourish our kid? Why was he rejecting food? Throwing up? We were especially frustrated because when his caretaker, Erin, arrived at 9 a.m., she could get him to eat scrambled eggs with cheese, yogurt, cereal—a meal fit for a kid twice his age and size. Why? And why was he suddenly chanting “Bee-bee, bay-bee” every five minutes?
Because, we eventually discovered, she’d bribe him by playing a music video on our iPad: Justin Bieber’s “Baby.” The song came to be Theo’s life raft, as well as our measuring stick for how long it would take to feed him. I’d sworn that Bieber would never be allowed in our household, but desperate times call for desperate measures, and the track was playing so frequently it became like white noise: Theo would demand the video repeatedly until his meal—or any task we needed him to endure—was done. It was an easy request to oblige.
It became obvious to Erin, Meredith, and me that there was a correlation between what he was eating and his energy levels. His little body craved carbohydrates and especially sugar—foods rich in protein appeared to have almost no effect on him. Meredith and I asked his pediatrician: Could he have hypoglycemia? The doctor dismissed it. Something has to be causing hypoglycemia, he said, as Theo snored away in the stroller. Low blood sugar would certainly explain the energy dips, the vomiting, the seizures. But the doctor didn’t order glucose tests. So we fired him.
We arrived at Mount Sinai this past September, panicked and desperate, after a brief stay at our local ER, when a simple bout of stomach flu pushed him over the edge. He couldn’t keep anything down. His blood sugar had plummeted to a dangerously low 23 (a normal range for an unmedicated kid is between 50 and 140), setting off two seizures, a minute-long one during his nap, followed by a five-minute seizure that would have gone on if we hadn’t stopped it with a dose of lorazepam given to us by his neurologist in case of such an emergency. The doctors at Sinai surmised that Theo’s glucose levels had likely regularly hovered around 40 to 60. There was comfort in finally having a half-explanation for every weird thing that had been plaguing him. At the hospital, two teams of doctors—pediatric endocrinologists and metabolic doctors—would be trying to solve the mystery of Theo’s case. And so they did: running tests, holding daily meetings together, often consulting with teams at other hospitals. That’s when the relief set in, because we were finally someplace that was determined to give us a diagnosis and, we all hoped, a treatment.