Our son was 5 years old the first time it happened. It was the middle of the night, and we were sound asleep. I woke to the sound of our front door creaking open.
I elbowed Dustin to wake him up. “I think someone just broke in,” I whispered.
That’s when the security alarm went off.
Dustin jumped out of bed and did whatever a man needs to do when he believes his home is being invaded. Then he dashed out the bedroom door, while I cowered under the covers.
A few minutes later, Dustin walked back into the bedroom carrying our sleeping son. Neither the alarm nor the commotion had woken him as he sleep-walked right out the front door. Dustin found him standing on the front porch.
When the alarm company called to check in, I had a very awkward conversation with them. “Yes, everything is fine. Our son walked out the front door while he was sleeping. No, we don’t normally let our son go outside at midnight. Yes, he was really sleeping.”
History of Sleepwalking
For the next few years, our son would startle us multiple times by sleepwalking. He could not be easily woken, and if we tried, he was confused. Eventually we learned to silently guide him back to his bed.
Over time, however, the sleepwalking changed. Now he was talking in his sleep, too. If you found him in the kitchen at midnight, you would swear he was wide awake: eyes open, making conversation, possibly even making a sandwich.
I grew used to these nighttime disruptions. I even thought they were funny. And then one night, our son came to the side of our bed mumbling gibberish. He was cold but sweaty, and he was terrified. He said his hands were too big for his body. He wanted me to make it stop. And then, as I hugged him tight, he said, “Mom, you look too far away.”
These episodes of hallucinations continued and intensified, but one thing was clear: They were always followed by an illness. In fact, this is how I knew our son was sick. If he appeared next to our bed talking nonsense, I knew he’d be sick with a fever by morning.
One time, my son went to bed earlier than the rest of the family, which was not unusual. At 9 p.m., however, he came into the living room and said, “I have something I’d like to talk to you about, Mom.”
He looked completely coherent and wide awake. I froze as I wondered what he was about to tell me. Was he in trouble? Had he done something wrong?
Then he said, “I think we should have a desire wire that goes from the pizza box directly to the toaster oven.”
My other children laughed, but I knew I had a long night ahead of me.
Sure enough, a few hours later, my son woke up with fever and those horrible visions: hands too big for his body and a room that seemed far away.
These episodes terrified me. I called my friends at odd hours of the night to come see him while he was doing “the thing.”
“Is he OK?” I’d ask frantically.
“It’s nothing to worry about,” they said. “Kids can react strangely to fever.”
But his fevers didn’t even need to be high. A low-grade fever would cause it, too. The only common denominator was headache. No matter the degree fever, he always had a debilitating headache.
Alice in Wonderland Syndrome
Then one day, while researching my own migraines, I stumbled across something: Todd’s Syndrome, or it’s more common name “Alice in Wonderland” syndrome.
Alice in Wonderland syndrome is a migrainous-like condition of childhood that usually is brought on by fevers or infections. In one study, ” Alice in wonderland syndrome: presenting and follow-up characteristics,” published in 2014 in Pediatric Neurology, MRIs performed on children as they were experiencing AWS revealed absolutely nothing abnormal. In fact, according to a March 2015 article, “ Objects in Brain May be Bigger Than They Appear,” in The Atlantic, in order for a child to be diagnosed with AWS, he cannot have anything else organically or mentally wrong with him that might account for the distortion in perception.
“[AWS] is sometimes considered a form of pediatric migraine and thought to be a precursor to adult migraines,” K. Suchari Rutledge, MD, a Pediatric Inpatient Physician at Eastern Maine Medical Center, says. “It’s actually strongly correlated with sleep-walking and motion-sickness. Although very frightening to the family, it is benign and presents no danger to the child.”
Kids usually grow out of AWS in their late-teens. The literature says AWS is rare, but as I’ve been talking about it with friends, I’ve found many people who had AWS and either didn’t talk about it or didn’t know what it was.
My grandmother will say that moms today know too much, that she didn’t have Google and parented on intuition and gut. Maybe she’s right. But it’s hard to be a parent — especially in the middle of the night, when you feel scared and alone and you can’t help your son. Sometimes, in these moments, Dr. Google offers peace of mind. I hope my sharing this story will, too.