Curiouser and curiouser: Life with Alice in Wonderland syndrome

After Alice found the little cake "on which the words eat me were beautifully marked in currants," and after she did, indeed, eat it, Alice could feel herself growing.

"Curiouser and curiouser," she cried. "Now I'm opening out like the largest telescope that ever was! Goodbye, feet!"

Today, 150 years after Lewis Carroll wrote Alice's Adventures in Wonderland, numerous events are being held to celebrate it. One of the more unusual may be a lecture Tuesday at 6:30 p.m. at the Mutter Museum of the College of Physicians of Philadelphia - "Medical Oddities of Alice: Potions, Poisons and Pathology." (Information and registration: http://muttermuseum.org/events)

Museum curator Anna Dhody will discuss a small exhibit of Alice-related items, including laudanum pills such as the ones the Rev. Charles Dodgson - a.k.a. Lewis Carroll - took for migraines.

Migraines also figure in a talk that Grant T. Liu will give about Alice in Wonderland syndrome, which occurs mostly in children.

Liu, who was senior author of a paper on the syndrome published in 2014 in the journal Pediatric Neurology, is a professor of neurology and ophthalmology at the University of Pennsylvania and the Children's Hospital of Philadelphia, where he also is the Raymond G. Perelman Endowed Chair in Pediatric Neuro-ophthalmology.

He spoke to us recently about the syndrome.

What is Alice in Wonderland syndrome? What do the patients experience?
In the purest form, patients experience a perception that part of their body is changing shape, or size, or both. Their arm gets stretched out, or their head gets too small. Or their whole body gets too big. That's the purest form because that's what is mostly in Lewis Carroll's book, what Alice experienced.

Then there's what I call Alice in Wonderland-like syndrome, where the person experiences changes in shapes or sizes of things in their environment. Like, Mommy looks too small, or looks too close.

The third category is where there's a mix. A little boy just told me his hands were too small, and Mommy was too far away.

By far, the most common form is where things in the environment change shape or size.

Are the children frightened by this?
Most were not scared by it. It was an, "oh, well." The parents were more frightened than the kids. In some instances, the parents would say, "How long has this been going on?" And the child would say, "Oh, it's been going on for a year."

Now, this has captured the attention of the press, and people.

First of all, the symptomatology is fascinating - "My environment is changing size." And the name is so catchy. Everyone knows the story, so people get it right away. If we were to call this "micropsia teleopsia phenomenon" [one term for the condition], no one would care.

How much do we know about what causes the syndrome?
Very, very little. There are some reports of this being set off by infections, migraine headaches, seizures, and medications. But there is no common thread among all those reasons as to why someone would have it.

I think that it's a dysfunction of what's called the parietal lobe in the brain. The parietal lobe, particularly on the right side, governs individuals' perceptions of shape and size - their own, and in the world. If they have a migraine or a seizure or a viral illness, it may cause dysfunction of that area.

Tell us about your recent paper, analyzing the cases of 48 patients at CHOP.
There were two notions prior to us writing the paper.

The first is that this was almost always associated with migraine.

Secondly, people felt this was a self-limited condition - children would have it, and it would go away.

We were interested in what diseases were associated with it, and what happened to people years later.

We found that migraines occurred only in a minority of the patients. The most common associated condition was infection. Many children - 52 percent - had it for no reason at all. There was no obvious trigger.

In about 20 percent of children, the symptoms ended shortly after diagnosis. For others, it continued. When we called people back - the average time was six years later - 40 percent of the patients were still having symptoms. Two patients had developed new symptoms. One mixed up numbers and saw figures and shapes that were not there. Another viewed things in a wave-like sort of motion.

Another extremely interesting thing is that, initially, we didn't find that other family members had the syndrome. But when we called people back, we found that there were some parents who didn't own up to having it when they were in the exam room with their child. It was almost like they were embarrassed. They only told us about it when we called them back 5 or 10 years later.

Also, if only one parent came in with the child, we found out from the subsequent phone interview that the parent went home and asked the spouse, who sometimes said, "Oh, yeah, I had that when I was a kid." So we think it sometimes does run in families.

Is there a treatment or a cure? What's next?
No. There's no treatment needed. It's benign. It does not lead to any visual or neurological problems.

Patients and parents are reassured by that. When the description is typical and the child has a normal exam, we don't even do an MRI or EEG to make sure the child doesn't have a brain tumor. I did those for a number of years, and they were all negative.

The important point here is that it's a benign condition, and we can educate patients and families. Before, they were going from doctor to doctor and no one knew what it was. They were getting too many tests.

I was contacted by a researcher in England about the genetics. He wanted to take saliva samples and check the DNA. I do want to find out what part of the brain is causing this.

sandybauers10@gmail.com