Surgical and clinical advances help providers and patients strip away the stigma of the disease.
By P. David Adelson, M.D.
A pediatric epilepsy diagnosis can be devastating. Parents, and especially mothers, often worry they're to blame for their child's condition—that it's a problem with their genetics, or that something happened during their pregnancy. Few of them really understand the condition, though they're all too familiar with the terror and helplessness they feel when their son or daughter experiences a seizure.
In fact, awareness is alarmingly low, especially since epilepsy is the most common of all neurological disorders. One in 26 people suffers from the condition—including more than 470,000 children in the U.S. alone—yet few people know about the disease.
The stigma of epilepsy
Epilepsy carries a stigma with wide-ranging consequences. Often, parents don't receive the support they need because they're apprehensive to share the diagnosis with their loved ones, and don't feel comfortable or confident advocating for their child with his or her medical providers.
For kids, this stigma creates hurdles socially and academically. Classmates may not want to befriend a child who has seizures, and kids with epilepsy often are the targets of bullies. In addition, they may face serious challenges with their schoolwork, either because of their seizures or because the anti-seizure medications cause significant side-effects that impair learning.
On a larger scale, the stigma even affects the level of public and private funding available for research. Although epilepsy is the most common of all neurological diseases, it receives a much smaller slice of the funding pie than other less common conditions.
New treatments, new promise
At Barrow Neurological Institute at Phoenix Children's Hospital, our goal is to provide hope and healing to kids with epilepsy. As a Level 4 center, the highest designation possible from the National Association of Epilepsy Centers, we treat some of the toughest cases using the most advanced medicine available.
Cutting-edge treatments are less invasive, lower risk and deliver excellent outcomes—even for children who don't respond to traditional anti-seizure medications. For some patients, we can eradicate the disease altogether. Here are some of the options we use to treat epilepsy:
Laser ablation: a cure for epilepsy
Many epileptic children suffer from hypothalamic hamartoma (HH) a rare, noncancerous brain lesion that forms in utero in the hypothalamus, a region of the brain that regulates many critical functions. Typically, HH causes a seizure type known as gelastic or "laughing" seizures. In the past, treating HH required removing the lesion through open surgery or an endoscope. Patients with tumors in an inoperable area of the brain had very few treatment options, but this is changing.
Using a cutting-edge laser ablation procedure pioneered by Angus Wilfong, M.D., associate director of Barrow Neurological Institute at Phoenix Children's Hospital and chief of Pediatric Neurology, we are curing epilepsy in children with HH and other types of seizures with focal onset.
This highly technical, minimally invasive procedure requires the expertise of neurology, neurosurgery, neuroradiology, pediatric anesthesia and numerous other disciplines. First, a small, flexible laser applicator is guided to the target area using a precise computer targeting system. The child is then placed in an MR scanner, and MRI is used to guide and monitor the effects of the laser treatment on the tissue. The laser light naturally heats the region of concern and eradicates the lesion and its connections to the seizure network, but it's necessary to view these tissue changes in real-time to prevent damage to surrounding, healthy tissues.
The treatment is accurate within millimeters, and the surgery is minimally invasive, requiring just a single stitch when the laser is removed. The effectiveness of the procedure, combined with our careful decision-making with HH patients, has resulted in 100 percent success; every one of our laser ablation patients is now cured of epilepsy.
Neuromodulation: an option for intractable epilepsy
Of course, surgery isn't an option for all patients, and many children don't respond adequately to medication. However, technologic advances like neuromodulation or ketogenic diet have dramatically improved outcomes for these patients, too.
Vagus nerve stimulation (VNS) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve, which passes through the neck as it travels between the abdomen, chest and the lower part of the brain. The pulses are generated by a pacemaker-like device that is placed under the skin on the left chest wall.
FDA-approved in 1997, newer VNS models transmit seizure data and allow neurologists to adjust the strength and timing of the pulses to personalize treatments for individual patients.
Responsive Neurostimulation (RNS) is nearing FDA approval for children. Electrodes are surgically implanted in the area of the seizure focus and are then connected to a device 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.
This device comes with a simple remote monitor that collects brainwave data and seizure activity, giving us a better understanding of patients' seizures.
VNS and RNS work 24 hours a day, and the outcomes are astounding. In addition to reducing or eliminating seizures, patients don't suffer any of the side effects associated with anti-seizure medication. It's truly a breakthrough for patients with uncontrolled epilepsy.
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 and to understand why our patients are experiencing seizures. But, to continue innovating and identifying solutions, we must first be willing to talk about the problem. Our work is in treating epilepsy patients, but our mission is to strip away the stigma of the disease—to help children live happy, normal lives, free of the symptoms and shame of epilepsy.
P. David Adelson, M.D, is director of Barrow Neurological Institute at Phoenix Children's Hospital and chief of Pediatric Neurosurgery. Send questions or comments to firstname.lastname@example.org.