Managing Epilepsy and Seizures: A Q&A With Dr. Rusty Novotny
May 5, 2021
Dr. Rusty Novotny is the director of Seattle Children’s Epilepsy Program.
How common is epilepsy?
Dr. Novotny: About 0.6% of kids have active epilepsy. If you imagine an elementary school with 500 students, that’s about 3 kids.
The highest incidence of pediatric seizures is in the newborn period and then it drops dramatically; it’s lowest in adolescence and continues to gradually increase as a function of age. Febrile seizures (from fever) are most common in children between 6 months and 6 years old. We rarely see febrile seizures in kids over 6 years old in the absence of other underlying risk factors. This is great because it means that kids can “outgrow” the risk of a seizure recurrence with febrile seizures and certain types of seizures in epilepsy syndromes we see in children.
One in 10 people will have a seizure at some point in their life.
Do you want to see every child who has a seizure?
Dr. Novotny: Yes. Unless it’s clearly a febrile seizure — in which case they should see their PCP — we want to see every child who experiences a seizure. We have a First Seizure Clinic, and we try to see kids within 5 to 10 days of their first seizure. We’ve designated these visits “urgent” so we can see someone quickly, 5 days a week.
Do most of the kids in your First Seizure Clinic turn out to have epilepsy?
Dr. Novotny: No. Only about half are having epileptic seizures. There is a wide range of other behaviors and events mistaken for seizures: movement disorders, tics/stereotyped behaviors, psychological disorders and fainting. Making an accurate diagnosis up-front is critical to knowing if this is a neurological issue or something else that warrants further evaluation by different specialists.
Why is it important to see kids quickly after the first seizure?
Dr. Novotny: The sooner we can see these kids, the better. Although one seizure is not epilepsy, and a provoked seizure (i.e., fever, hypoglycemia, stroke, etc.) is not epilepsy, a provoked seizure can lead to the development of epilepsy. It’s critical to act fast to make an accurate diagnosis. In particular:
- In infants 3 to 12 months old, there are certain types of seizures that are critical to see, diagnose and treat early.
- In young children under 5 years old, providers should feel free to send them in sooner rather than later. This is an age range where, if there’s a surgical intervention we can offer, it’s better to do it sooner to give them lifelong benefits.
If we do an MRI and it shows developmental brain abnormalities, tumors or other lesions, the child is highly likely to need surgery. It doesn’t take long for these kids to get to the point of being medically intractable. They need early evaluation and surgical management rather than additional medication (say, going from two to three, four or five medications).
Where is the First Seizure Clinic offered?
Dr. Novotny: We have it at the main hospital campus in Seattle and also at North Clinic in Everett, South Clinic in Federal Way and our Bellevue Clinic. Kids aren’t necessarily seen by an epilepsy specialist at the clinic, but by a neurology provider. Epilepsy specialists are readily available and read the EEG studies for the children where their provider determines if this test is warranted.
What are you looking for when you evaluate kids with seizure?
Dr. Novotny: First we want to know if this is an epileptic seizure or something else, as noted earlier.
If it’s an epileptic seizure, we need to follow a child and their treatment to identify whether they have a specific epilepsy syndrome. There are several epilepsy types in children that are self-limited where the child just needs treatment for a short period of time. Also, children with certain epilepsy syndromes have infrequent seizures. If they occur only a few times a year, we may not recommend daily medication. We want to know if there’s a family history of epilepsy.
Often there are immediate steps we can take to help a child. One thing we see fairly frequently is absence seizures, where the seizure lasts just 3 to 10 seconds and consists of staring with or without blinking (“zoning out”). By itself, this isn’t causing any damage to the brain and could be mistaken for something else, but if correctly identified and treated properly, it will improve the child’s ability to learn in school.
There is also a lot of education that needs to happen with the family in the early days, including what to do when a seizure happens and where to find support.
Are kids getting to you in time?
Dr. Novotny: About one-third of the time, patients should have seen us sooner. It’s not uncommon for new patients to come to us who are on three or four medications and really only need one or two of them; the others aren’t needed and sometimes are causing more harm than good. Some patients come to us misdiagnosed with epileptic seizures and they are on medications they don’t need to be on. In some cases, it’s clear they should have had surgery or been evaluated for surgery.
That said, I think it’s important to note that the majority of the time, kids come to us with a good workup from their PCP or specialist, and we just take it from there to get them across the finish line. We appreciate the wonderful work our colleagues in the community are doing, and we are committed to being available if you have questions about your patient. (Our Provider-to-Provider Line is 206-987-7777.)
Do you encourage families to send video of the seizure?
Dr. Novotny: Yes, it’s very helpful to get video from families to give us a clearer picture of what’s going on. We encourage families of patients to video-record behaviors they are concerned about and send them to us through MyChart.
How effective is medication for stopping seizures?
Dr. Novotny: Medication is effective about 70% to 80% of the time, although it can take a combination of one, two, or three medications to bring the seizures under control. Forty-seven percent of children can get their seizures under control with a single medication. Adding more medications comes with diminishing returns. Using two medications brings that number to 60%. For children who try adding a third and fourth medication, the likelihood of improvement is fairly small.
We have about 40 different medications we can offer. Some come with some pretty serious side effects. Our patients and their families often dislike having to use them, even when they are effective.
The definition of drug-resistant or intractable epilepsy is defined as failure of adequate trials of two tolerated and appropriately chosen and used medications with the goal to achieve sustained seizure freedom. We want these kids to be evaluated by our epilepsy specialists in particular. Kids who fail one medication are seen by our broader neurology group.
Can diet help?
Dr. Novotny: Some kids with seizures respond very well to the ketogenic diet, which is very strict and requires a big support team of nutritionists and epilepsy specialists in addition to an initial hospital stay to get started. There’s also a modified form of the Atkins diet that works for some kids and is a little easier to work with and tolerate. These diets help some kids reduce or stop their seizures, reduce or stop their medication and see improved behavior. These diets must be managed by a team familiar with the side effects, closely monitored and adjusted to maximize seizure control.
Can cannabidiol (CBD) help?
Dr. Novotny: CBD is being used for pain, behavioral and psychological disorders and many other problems. A derivative from the cannabis plant, cannabidiol (CBD) has been established to control certain types of seizures in patients with specific epilepsy syndromes. A highly purified form of cannabidiol is available as a prescription for children with Dravet, Lennox-Gastaut and other epilepsy syndromes.
CBD and cannabis products from other sources are highly variable and may contain other cannabis derivatives and contaminants. In general, these should not be used to treat epilepsy.
Children and teens with epilepsy syndromes who may benefit from CBD should be managed by a pediatric neurologist. There are known interactions with CBD and standard antiseizure medications that may result in complications and significant side effects. We have managed many patients with prescription and “artisanal” CBD and cannabis.
When is the right time for surgery?
Dr. Novotny: One problem we see is families waiting too long to see us to learn about their child’s alternatives to medications and options for surgery. Many kids referred for surgery for refractory epilepsy started seizing at about 1 to 3 years of age. By the time they get to surgical evaluation, they are in their teenage years.
I can’t say it strongly enough: earlier is better with epilepsy surgery, due to the plasticity of the brain. Our neurosurgeons can resect near the motor strip of a 2-year-old and when she is age 12, you would have a hard time telling she had ever undergone surgery. You can’t do that with an 18-year-old. Because of the plasticity of a young child’s brain, they can shift their language or other functions to other areas of the brain and relearn.
Kids who are surgical candidates who don’t get surgery young enough (or at all) don’t do as well in their adult years either. They tend to leave school earlier, have less job success, are more likely to be on disability and have less happy marriages. The mortality risk of uncontrolled epilepsy is 0.5% per year and accumulates over a lifetime.
What surgical advancements do you offer as a level 4 epilepsy center?
Dr. Novotny: Our diagnostic equipment is world-class and puts us miles ahead of most other programs in being able to determine exactly where a child’s seizures originate and how best to safely surgically remove or deactivate sections of the brain. A recent story about 11-year-old Giorgia Graham illustrates this well.
We use PET scans to show areas of the brain that are not functioning normally and may be the source of seizures. Functional MRIs map patients’ language, vision, motor function, etc., to help us safely operate; our neuropsychologists work closely with us and our patients in this work. Other tools we use include Ictal SPECT, diffusion tensor imaging and our robotic-assisted stereotactic EEG (SEEG), nicknamed “Rosa.” SEEG allows us to place electrodes in the brain to record activity, very safely and without a craniotomy, using light anesthesia. Patients experience minimal pain during recovery. SEEG has allowed us to shift many of our invasive procedures to this more minimally invasive type.
We also are now able to offer neural modulation/stimulation, which is a whole new treatment modality to regulate the brain (like a pacemaker regulates the heart). These devices include vagus nerve, deep brain and responsive neurostimulators. We’ve implanted the devices in children with certain forms of epilepsy who are in the approved age range of from 2 years old and older, depending on the device.
What sets us a program like ours apart is not just having world-class diagnostic tools, but more importantly, having the expertise to know how to pull all the information together — using software our team created — to give us a full picture of each unique patient. That’s precision medicine!
Does surgery cure seizures?
Dr. Novotny: Overall, 50% to 80% of kids are seizure-free after surgery and about half of those will have their seizure medications completely withdrawn. Surgical mortality is very low.
How young can kids have surgery?
Dr. Novotny: We have done surgery at 28 days of age. We recently did an invasive (intracranial brain mapping) study on an infant at 2 months old.
When do you consider genetic testing for refractory epilepsy?
Dr. Novotny: We recommend genetic testing in cases where refractory epilepsy is of unclear origin or there is developmental delay, dysmorphic features, associated movement disorders, suspicion of a neurocutaneous disorder, metabolic abnormalities or a strong family history of epilepsy.
Seattle Children’s also has a very strong genetics department especially in terms of evaluating neurological diseases.
What does it mean to be a level 4 epilepsy center?
Dr. Novotny: It means we have everything a family needs to receive excellent diagnosis, care and outcomes for their child with seizures. We have the most advanced technology available to diagnose epilepsy and evaluate patients before surgery, and we perform a broad range of complex surgeries to treat epilepsy. We are also part of the University of Washington Regional Epilepsy Center, which means we are able to give our patients access to more research studies and technologies, including responsive neurostimulation and SEEG.
We have the largest epilepsy program for kids on the West Coast, and we are the only children’s hospital in the Northwest accredited level 4 by the National Association of Epilepsy Centers (NAEC).
Does Seattle Children’s do research on epilepsy?
Dr. Novotny: Yes, we have over a dozen research studies ongoing at different levels. Some are clinical trials of different medications or devices for treatment. We are helping move some of the newer and even some older drugs through FDA approval in younger kids (many of our older epilepsy drugs have never had rigorous clinical trials in children). We are about to be involved with a clinical trial of seizures in neonates.
We have several studies underway related to genetics in collaboration with UW Genomics. This work is exciting because a correct genetic diagnosis can lead to a very targeted precision medicine treatment. When I was in medical school, about 80% of the time we couldn’t diagnose the cause of a patient’s epilepsy and we’d just call it idiopathic. Today, with help from our genetic colleagues, we can identify about half of those underlying genetic diagnoses.
We are embarking on a clinical trial soon for an implantable responsive nerve stimulator device for 12- to 17-year-olds. It continuously records a patient’s electrical brain activities, identifies seizures and can provide an electrical stimulus to abort it. We’ve implanted one so far.
Do you have any final words of advice?
Dr. Novotny: A big issue in the epilepsy community is comorbidity. A child may have epilepsy and also psychological issues like depression or anxiety. A lot of kids with epilepsy also have autism and learning disabilities. Our patients often need to be seen by other specialists outside neurology. One of the benefits of being a patient in our Epilepsy Program is the access families have to a wealth of other specialty providers they may need.
- Article: “Minimally Invasive Imaging and Laser Surgery Solve Elusive Epilepsy” in On the Pulse.
- Epilepsy Program at Seattle Children’s
- Robot Assisted Neurosurgery
- Our Team