When “slam dunk” EEG evidence is missing

My daughter played video games to deliberately provoke photosensitive seizures during extended, inpatient EEG monitoring. She had plenty of seizures, but they weren’t detected by the EEG sensors on her scalp. Although she was exhausted and cognitively slow from all the seizure events, the clinicians said–based entirely on the EEG data–that they saw no sign of seizures. We’ve tried this at several hospitals, always leaving with this frustrating result.

Many patients with inconclusive EEGs are dismissed by neurologists and told there’s no evidence of seizures. This is probably even more frequently the case with visually induced seizures, since most neurologists know little about them. In their training they were taught that photosensitivity is extremely rare and that photosensitive seizures are big, generalized (grand mal) episodes.

Typically, neurologists are very conservative about issuing a diagnosis of epileptic seizures (although this was not always the case). If there’s an unmistakable seizure pattern on the EEG, they feel comfortable stating that you have seizures. Without clear EEG evidence, many neurologists may not feel a seizure diagnosis is justified. If this has happened to you, you’re not alone. Although clinicians are supposed to diagnose epilepsy based on the patient’s history as well as EEG and other tests, most often EEG results are considered more indicative than all other data–even though EEG is extremely imprecise. The result is that it can take years before a patient is properly diagnosed.

Here is a sampling from various reports we received on my daughter’s video game-induced seizures and the EEG recordings done during the events:

  • “It is interesting that they almost always occur when she is alone.” [when she can concentrate fully on the game and more easily lose contact with her surroundings]
  • “Most photosensitive seizures are primary generalized with bursts of spike waves, polyspike waves, or polyspikes. It is possible for some types of visual stimuli to bring on a partial seizure. These are more rare. Even in those instances, usually there is some sort of epileptic discharge.” [Oh.]
  • “It is true that with surface EEG, we could miss partial seizures. At the same time, there are also many clinical signs that make a seizure unlikely…MRI has been normal and our clinical suspicions are quite low.” [Don’t seek and you shall not find.]
  • “The EEGs have never shown epileptiform activity, nor has there been a photosensitive response.” [See my post on testing for photosensitivity using photic stimulation]
  • “Due to the normal EEG and the precipitation of events with only limited stimuli, we feel it is unlikely that these events represent seizures.” [In other words, if only video games precipitate seizures, these can’t really be seizures.]
  • “The patient was playing a video game and then stopped…There was no obvious change in the patient’s observed behavior in that she was sitting on a stool in front of a monitor playing a game…The EEG also did not show significant change…[She stopped playing the game—isn’t this a change in behavior?]
  • “The two…events that were recorded…failed to reveal an identified behavioral change that would appear to be convulsive in nature.” [Since when are all seizures convulsive?]
  • “The patient had a few jerks of her limbs during photic stimulation, but there was no electrographic correlate.” [Hmmmmm.]
  • “There is a generalized irregular slow wave burst…at which time the patient is swaying her head to and fro while watching a video. This activity is not epileptic and most likely related to movement.” [An unsupported guess with no effort to gather more evidence. Ask the family if swaying the head to and fro is typical behavior. Or ask the patient if she recalls swaying while playing.]

Sound familiar? Anyone else want to share similar results?


Canaries, autism, and sensory overload

Like canaries testing air safety in a coal mine, people with autism are the first to be affected by hazards in our everyday environment.

“I believe that when the science is in, we will see that people with autism are ‘canaries in the coal mine,’ the most susceptible, who are affected first by problems that may eventually reach us all.”

–from The Autism Revolution by Martha Herbert, MD, PhD, with Karen Weintraub (Ballantine Books, 2012)

Martha Herbert reasons in her remarkable book that the rapidly increasing prevalence of autism indicates the disorder can’t possibly be due to genetics alone. She makes the case, based on findings in diverse fields of medical research and on her own clinical experience, that autism is not a genetic trait destined to be lifelong. Instead, she’s suggesting that the rise in autism is a consequence of the environment we live in, and that many autism symptoms can be reduced by making environmental changes. It’s compelling reading whether or not someone you love has autism, because, Herbert contends, many of the environmental influences that probably contribute to autism will likely affect all of us in time.

While the development of autism may begin with genetic vulnerability, she argues, the emergence of the disorder begins after a tipping point is reached following a multitude of modern-day environmental exposures. The cumulative effects of these environmental stresses influence the expression of genes associated with autism, leading to a cluster of brain and body dysfunctions typical of this spectrum disorder. Autism rates are sharply rising because the biological systems of growing numbers of young people are running out of the resilience required amid burgeoning environmental challenges.

Sensory overload as environmental stressor 

Dr. Herbert explores environmental influences including toxins, emotional stress, infection, diet, and sensory overload. She cites many cases where people with autism got a lot better when specific changes in these environmental factors were made, thereby reducing assorted stresses on the brain and body. Eliminating the right stressors, which may require considerable trial and error, can allow some children to become significantly higher-functioning, healthier individuals.

city-night-explosion-fireworkIn any individual, whether or not autism is present, identifying and avoiding environmental seizure triggers can produce big improvements in a range of physical, cognitive, and emotional difficulties associated with seizure activity. Dr. Herbert suggests that seizures, which are not uncommon in people with autism, can cause or exacerbate some problem behaviors in this population.

The only study done to date on autism and photosensitivity indicates children on the autism spectrum have much higher rates of photosensitive epilepsy. Given the high rate of other types of epilepsy in those with autism, this is not surprising. To be quite clear, I’m not suggesting that video games cause autism, nor does Dr. Herbert. But preventing seizures that exacerbate autism symptoms can be a major stepping-stone to wellness.

Dr. Herbert outlines many steps parents can take, beyond seizure reduction, to limit exposure to things that can magnify autism symptoms and may contribute to its emergence. While not every approach works for every child with autism, she provides a range of additional strategies such as eliminating gluten, dairy, and food additives, regulating sleep, getting rid of toxic household chemicals, and reducing sensory overload.

“Too much sensory stimulation, trouble being coordinated, not enough sleep, seizures, not being able to say what you want—all can contribute to frustration and stress. Looking for solutions at each of these levels can help reduce the stress and increase the time spent truly learning and enjoying life.”

“Gray zone” electrical activity

Dr. Herbert does not assume that a finding of “no seizures” on an EEG means that visual stimuli are not affecting the brain’s normal electrical firing. The consequences of brain waves that are “somewhere between ‘normal’ and ‘disease,'” she contends, could be “subtle but still important”–even if no actual seizures are triggered. In other words, even mildly abnormal rhythms in the brain, which can be provoked in some individuals by exposure to visual overstimulation, may result in impaired neurological functioning. Even if your child has not been experiencing actual seizures, Dr. Herbert says these abnormal rhythms due to excessive sensory stimulation from visual media may actually affect the brain’s ability to process information.

“…A lot of kids with autism might be having ‘gray zone’ electrical problems—too mild to meet the formal definition of seizures, but enough to interfere with their quality of life.”

These “gray zone electrical problems” are not limited to those with autism. Other populations likely to be in this gray zone include people with learning disorders, intellectual disability, or psychiatric conditions—the more vulnerable among us. In other words, it may not make sense to dismiss as irrelevant the EEG abnormalities that don’t clearly indicate seizures.

Reducing overload

If your child is on the autism spectrum, you probably already know to reduce your child’s sensory overload. One way to do that is to limit screen time and avoid overstimulating content. Try eliminating video games for a few days and see if your child begins to feel better and struggle less with learning, attention, emotions, and behavior. (Your child may be initially quite resistant to this experiment, which will temporarily make things more stressful. To get a fair reading on the effect, you need a few days free of any withdrawal symptoms.) During this video-game-free time all visually overstimulating media should be avoided, including fast-paced cartoons, movies, and music videos.

Those whose children aren’t on the autism spectrum should also take note. By applying the canary-in-the-coal-mine model, we may yet learn that visual overstimulation can profoundly affect the functioning and health of many people, including those without autism. When the visual system of anyone with hidden photosensitivity is no longer overloaded by daily video games, lives can be transformed.

Could anyone in your family be affected? It’s something to think about.