My Kid Had Alice in Wonderland Syndrome—Here’s What That Means

When her son was having strange visual disturbances, she learned he had Alice in Wonderland Syndrome, a rare but temporary condition. Here's what experts say.

Boy Sleeping in Bed

Maryanne Gobble / Stocksy

I had just tucked my sick 9-year-old son into bed for the night when he looked up at me with a confused expression. "You look teeny tiny, Mom—like you shrunk," he told me. Since he had been running a fever of 102 degrees, I chalked it up to his mind playing tricks on him, and said he'd feel better in the morning. But the next day it happened again—and this time, when his fever was low and well-controlled. He explained to me that out of nowhere the room around him would appear to shrink. 

This prompted me to take him to the pediatrician where he tested positive for the flu. But there was no clear answer for the visual distortions—and by this point, they were occurring more frequently.

A few days later, I was talking to a friend with a son the same age who was just getting over the flu. She expressed her son had also experienced some strange visual distortions while he was sick. He had told his mom the bedroom door looked miles away even though it was right in front of him. As a reporter, I was intrigued that our seemingly strange experience had also happened in a different household just down the road. But as a mom, I was concerned. Was the flu having some sort of impact on their brains?

Fortunately, I found (what I believed) was the answer in the medical literature. What my son and my friend Jaime's son had experienced was most likely Alice in Wonderland Syndrome (AIWS)—a neurological condition in which the brain's ability to process sensory input is disrupted. As scary as that sounds, it isn't something harmful on its own and is usually temporary. 

What Is Alice in Wonderland Syndrome?

The aptly named syndrome (referencing the famous children's story by Lewis Carroll) is said to be rare. But that could be due to the fact that research is limited. And in many cases, it's probably unreported or even misunderstood. Experts say it is commonly written off as being a vision problem or even a hallucination—but it is neither.

Instead, Anjan Chatterjee, M.D., a cognitive neurologist and founding director of the Penn Center for Neuroaesthetics, says AIWS is a "sensory distortion.” He explains this often comes in the form of either micropsia, where visual objects are perceived to be smaller than they are, or macropsia, where visual objects are perceived to be larger than they are.

MaryAnn Mays, M.D., a neurologist with the Cleveland Clinic who specializes in headache medicine, says some reports have also indicated AIWS can cause other distortions such as objects in a room looking flat (two-dimensional) or the room appearing tilted. Some people have even reported a distorted sense of time such as everything feeling sped up or slowed down.

“There can also be a sense of depersonalization during an episode, where a person might feel like they are looking down at themselves as though they are detached from their body,” Dr. Mays continues. 

While it appears to be a more common occurrence in children, Dr. Chatterjee says adults can also experience AIWS. In fact, Dr. Mays says it’s possible adults experience AIWS just as frequently but are uncomfortable talking about it. 

MaryAnn Mays, M.D.

There can also be a sense of depersonalization during an episode, where a person might feel like they are looking down at themselves as though they are detached from their body.

— MaryAnn Mays, M.D.

Alice in Wonderland Syndrome Causes

AIWS can be triggered by a migraine, epilepsy, or sometimes, a viral infection like the flu or Epstein-Barr, which can cause encephalitis. AIWS can also be a side effect of various medications

In rare cases, AIWS might also be the result of something more serious like a brain tumor—but that would typically be accompanied by other tumor-related symptoms like difficulty walking or speaking.

Dr. Mays says anytime a child is experiencing an onset of unusual symptoms, it is worth checking with a health care provider about what could be causing them. She also advises to be careful not to mistake mental changes that accompany a very high fever for AIWS, as the former might require hospitalization. But if a fever is well-controlled and there are no emergency symptoms, AIWS itself does not require immediate attention.

Alice in Wonderland Syndrome Treatment

An experience with AIWS might prompt a trip to the eye doctor, but Dr. Chatterjee says this is not actually vision related.

"When AIWS occurs, an ophthalmologist would see nothing wrong with the patient's retina because this is not related to vision but instead to the higher order regions of the brain that actually help us put together the objects that we see in front of us," explains Dr. Chatterjee. "This is why we assume it has something to do with the brain's processing of visual input that is being interrupted."

For my son, these "episodes" lasted for several minutes at a time—which Dr. Chatterjee says is pretty typical. They also persisted throughout the duration of his recovery, even lingering as other symptoms, like his fever, subsided. While at his sickest, this occurred several times a day, the episodes started to taper off slowly until they were gone entirely.

"Parents should know there is no treatment for AIWS other than to treat what is causing it in the first place," says Dr. Chatterjee.

That might mean treating a seizure, a migraine, or in my son's case, letting the flu run its course. I kept up with pain medication, helped keep him hydrated, and encouraged him to rest.

“If AIWS is being caused by a migraine, parents should know that many migraine medicines we have available do appear to be helpful in preventing these visual processing disturbances,” adds Dr. Mays.

Anjan Chatterjee, M.D.

Parents should know there is no treatment for AIWS other than to treat what is causing it in the first place.

— Anjan Chatterjee, M.D.

Why We Need More Awareness For AIWS

More awareness of this condition may help prevent a misdiagnosis. "It's very important to distinguish episodes of AIWS from hallucinations, which have other associations, like schizophrenia," says Dr. Chatterjee. "This is not a condition in the category of mental illness."

Anecdotally speaking, fears over an improper diagnosis of hallucinations or a mental illness might even prevent some patients (or their parents) from reporting episodes of AIWS. That could be a reason it remains under-discussed, even in the medical community.

"It's difficult to say whether it's truly rare or if it's just not being reported as often as it occurs," Dr. Chatterjee says. "It's quite possible, kids or their parents just don't bring it up."

What to Do if Your Kid Has AIWS

While it was alarming to witness my son experience these episodes, he was never overly scared himself. Dr. Chatterjee says it can help if parents remain calm and provide reassurance as these episodes are not harmful even though they can be unnerving.

“It might help to listen to as much of a description as your child can share with you so that you can relay that information to their provider,” says Dr. Mays. “Ask them to describe what they are experiencing and make note of the time and any other symptoms they might have.” 

It’s also critical not to dismiss any symptoms that could be a sign of something more serious.

Everything about my son's experience pointed toward it being due to the flu (after all, he had never had these episodes before and he did test positive for the virus right when they began). But Dr. Chatterjee says that in some cases, further testing could be warranted if these episodes persist with no explanation—or if they are accompanied by other symptoms. It's always worth checking with a doctor and finding out whether further testing including an electroencephalogram (EEG) or magnetic resonance imaging (MRI) might be warranted. 

At the end of the day, it's another example of being our children's best advocates and recognizing that we are the ones who typically know them best.

With this experience behind both of us, Jaime and I recently chatted about the value of our "mom gut"—and of knowing when something just doesn't feel right. We agreed with so many viruses circulating during this difficult season, those instincts are more important than ever.

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