10 things to know about Epilepsy

Epilepsy is one of the most common of all neurological diseases. More than 45,000 children in the U.S. are diagnosed with the condition each year, and more than 11,000 Arizona kids have active epilepsy. The disease is characterized by recurrent, unpredictable seizures caused by abnormal electrical activity in the brain. Seizure symptoms vary widely; some people stare blankly for a few moments, while others may fall with twitching of their arms and legs. Others experience seizures that cause sudden bursts of laughter or crying.

Epilepsy affects males and females and is most commonly diagnosed in childhood and in the elderly. Some children grow out of it, while others experience symptoms throughout their lives. For many people, medications are effective in controlling their epilepsy, but more than 30 percent of children and adults with epilepsy do not fully respond to medication.

The good news is that there are a number of other epilepsy treatments when medications don’t work. Still, the disease remains highly misunderstood. That’s why I’m sharing 10 must-knows about this common, yet complex, disease.

1. Epilepsy is no one's fault. Parents often believe they’re to blame for the condition – that it’s due to some flaw in their genetics or that something went wrong during pregnancy. But epilepsy is no one’s fault. For hundreds of years, it was believed to be a violent or evil madness that needed to be exorcised. This seems laughable today, but even modern parents misunderstand the disease and worry they did something that caused their child’s epilepsy.
2. Seizures and epilepsy are incredibly common. Very few parents know much of anything about epilepsy when their child is first diagnosed. Of course, they quickly become experts on the topic. The truth is: Seizure disorders are incredibly common. Here, at the Barrow Neurological Institute at Phoenix Children’s, we treat nearly 3,000 kids with epilepsy each year.
3. Children with epilepsy can live full and happy lives. This is the most important piece. Our ability to diagnose and treat epilepsy has improved dramatically in recent decades. New technologies allow us to see the brain at an incredible level of detail, to understand why our patients are experiencing seizures and to design a treatment plan to manage their symptoms and improve their quality of life.
   Today, many children with epilepsy play sports, spend time with their families, enjoy their friends and excel in school. The disease is part of their lives, but with treatment, it doesn’t have to define their childhood.
4. The symptoms of epilepsy aren’t always dramatic. While some children experience classic seizure behavior, other signs of epilepsy are much subtler. Common symptoms in children include staring or rapid blinking, confusion, “zoning out,” changes in consciousness and loss of bladder control.
5. Uncontrolled epilepsy can worsen over time; it may even spread. Seizures beget new seizures as the brain becomes more accustomed to seizure activity. Simply stated, the brain becomes more effective at having seizures, meaning the condition can spread from one area of the brain to another. This sounds scary, but with proper treatment, the condition can be well-managed and even cured.
6. The stigma of epilepsy deeply affects patients and their families. Although epilepsy is a well-documented, highly common neurological condition, it continues to be stigmatized. Parents often experience confusion and shame when their child is diagnosed. They may not feel confident advocating for their child with their pediatrician or other medical providers, and they may be apprehensive about approaching their child’s teacher for support.
   For children, it’s even worse. Classmates may not want to befriend a child who has seizures. In fact, kids with epilepsy are often bullied at school. In addition, they may face serious academic challenges, either because of uncontrolled seizures or because the anti-seizure medications cause significant side effects that impair learning. Given these challenges, it’s no surprise that a large percentage of epileptic adolescents and adults suffer from depression, too.
7. Research and funding are also affected by the negative public perception of epilepsy. Although epilepsy is a common condition affecting 65 million people worldwide, it receives a much smaller slice of the funding pie than many other conditions. Unlike Lou Gehrig’s disease, Parkinson’s and muscular dystrophy – very rare neurological diseases that receive a high level of awareness and funding – no celebrity has carried the torch for epilepsy.
8. New treatments are changing the way we treat epilepsy. Antiseizure medications are the first course of treatment for children with epilepsy, but not every child responds to these drugs. In the past, children with uncontrolled epilepsy have faced serious challenges, but this is changing. Medical breakthroughs have dramatically improved outcomes for children with all types of epilepsy. Among the most exciting new treatments available at the Barrow Neurological Institute at Phoenix Children’s:
   • Our physicians use Precision Laser Ablation to cure children whose epilepsy is caused by seizures with focal onset. This highly technical, though minimally invasive, procedure uses laser light to heat the region of concern and eradicate the lesion and its connections to the seizure network.
   • In January 2021, the Barrow Neurological Institute at Phoenix Children’s became the first hospital in the nation to use the Medtronic Stealth Autoguide™ robotic guidance system for laser ablation. Using this system, our team has improved surgical precision to within sub-millimeter accuracy. And even though it’s brain surgery, the procedure is minimally invasive and requires a very short hospital stay.
   • Vagus Nerve Stimulation (VNS), a “pacemaker for the brain,” is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain through the left vagus nerve in the neck. Neurologists can adjust the strength and timing of the pulses to personalize treatments for individual patients. A type of neuromodulation, the latest models of VNS offer the ability to detect and abort certain types of seizures.
   • With Responsive Neurostimulation (RNS), another neuromodulation option, electrodes are surgically implanted in the area of the seizure focus and connected to a pacemaker device, which is implanted in the skull under the scalp. Leads from the device constantly monitor brainwaves, looking for brain activity that may lead to a seizure. The RNS sends pulses that instantly disrupt impending seizures and normalize brainwaves, often before the patient feels any symptoms.
9. Surgery is not the “last resort.” While antiseizure medication is the first course of action for children with epilepsy, the meds may come with significant side effects including drowsiness, mood swings, memory loss and the experience of feeling “drugged” or “in a fog.” Moreover, unless the child outgrows the disease, he/she likely will need medication for life.
   Surgery should not be considered a last resort. Surgical procedures like laser ablation may cure some children of their epilepsy altogether, negating the need for drugs and dramatically improving their quality of life.
10. You are not alone. Families often feel afraid or isolated when they receive an epilepsy diagnosis, but soon realize there are many families facing a similar battle. Family, friends and your child’s healthcare team are eager to help.