Personalized Epilepsy Treatment for Each Child
Nov 17, 2023 Victoria Pelham
A parent notices their usually active young daughter seems dazed and sleepy, staring and blinking. Another child falls over out of the blue. Others might shake, jerk, stiffen up—or even pass out.
A child’s first seizure is almost always a shock and can be scary and confusing for the whole family. Afterward, many have to wait years for a diagnosis and even longer to find treatment that works for them.
The number of pediatric neurologists in the U.S. falls approximately 20% below the national need, according to the Child Neurology Foundation. Pediatricians caution shortages increase wait times and travel for specialty care, leaving kids and families cycling through emergency rooms and increasing the likelihood of complications.
With epilepsy—the most common childhood neurological condition—delays can lead to developmental and learning disabilities and treatment-resistant, disruptive disease, said Deborah Holder, MD, director of Cedars-Sinai Guerin Children’s new Pediatric Epilepsy Program.
“Seizures are not good for the brain, especially when it’s still developing, and we'd like to stop them as quickly as possible,” she said.
Thankfully, the roughly 470,000 children with epilepsy have more care options than ever before. Recent medical advances and an onslaught of genetic discoveries have resulted in tailored treatments for each child—giving them much stronger, earlier disease control.
“If we can end seizures while kids are young, then we really give them the best chance they can have in the future,” Holder emphasized.
1. Anti-Seizure Medications
The brain’s nerve cells speak to each other through electrical signals. Sudden electrical bursts in one side of the brain (a partial or focal seizure) or both (generalized seizure) interfere with normal nerve communication. This “short circuit” triggers changes in behavior, awareness and body function, causing vision problems, muscle tensing or weakness or tremors—depending on which part of the brain is affected.
A neurologist’s first line of defense is usually prescription medicine to prevent or limit future seizures, considering a child’s seizure type, side effects and lifestyle. Medications come in many forms and can be taken orally as pills, sprinkles or syrup, nasally, rectally or by IV.
For the best results, be consistent about medication timing, the Epilepsy Foundation suggests.
Holder notes about half of kids can eliminate seizures with the right dose of one drug, and another 15% by trying a second medication.
"If we can end seizures while kids are young, then we really give them the best chance they can have in the future."
2. New Options for Brain Surgery
For about 30% to 35% of children with epilepsy, “medications just don’t work,” said Holder.
Leaps in surgery are transforming care for these children who used to have few options.
Children who have seizures in a small part of the brain can undergo the newer minimally invasive laser ablation. This procedure uses an MRI scanner to monitor the temperature, while the laser treats the part of the brain responsible for the seizures. Software allows the neurosurgeon to set a protective barrier to preserve critical, functioning areas that control language or movement.
Kids can go home the day after surgery—much quicker than with traditional brain surgery.
Those with widespread disease typically need a more invasive surgical resection. Neurosurgeons open the skull and cut out the unhealthy piece of the brain. They use sophisticated EEG brain mapping to ensure the surgery is precise, and children typically need a few more days in the hospital and a few weeks of recovery time.
Two other surgeries implant “brain pacemakers,” devices that send electrical signals to the brain to prevent or quickly stop focal seizures.
- The vagal nerve stimulator (VNS) is a chest implant that both prevents and can stop seizures through automatic activation, triggered by a seizure-induced heart rate increase, or by a handheld magnet.
- Responsive neurostimulation (RNS) is a skull implant that records daily brainwaves like an EEG and responds to abnormal electrical activity, decreasing seizures.
Seizures fall by around 65%, on average, and can become less severe, lifting worries and improving quality of life.
“Epilepsy is a disease where people often feel out of control of their lives because they can’t predict when their seizures will occur,” Holder said. “These devices give them some control back.”
3. DNA Clues
Genetic insights are rewriting the playbook for pediatric epilepsy.
Scientists have found more than 500 genes tied to the brain condition, around five times the amount identified just a decade ago. Through saliva tests, neurogenetic counselors identify gene mutations and which treatments could help or hurt a child’s epilepsy, matching care plans to the child.
Doctors can pinpoint drugs—even those normally used for heart disease or another condition—that eliminate a child’s seizures, Holder said. One day, expanded genetic testing and gene therapy research could lead to cures even before the first symptom.
4. Medically Tailored Meals
Diet therapy can bring kids with epilepsy newfound freedom.
A ketogenic (high-fat, low-carbohydrate) diet helps about two-thirds of patients, sometimes without any other medications, according to Holder. And with so many keto-friendly options now available, kids can easily eat special meals with friends and family.
“It’s been really exciting to watch the transition of this diet over the last 20 years,” Holder said.
With such dramatic, rapid leaps, epilepsy care is in a critical moment. Holder added that within the next five years, neurologists could start children on personalized treatment from day one—helping some avoid developmental disorders entirely.