Unlocking the Stigma of Epilepsy

Dr. Brad Schlaggar (BS): Welcome to Your Child's Brain, a podcast series produced by Kennedy Krieger Institute with assistance from WYPR. I'm Dr. Brad Schlaggar, Pediatric Neurologist, and the president and CEO of Kennedy Krieger Institute. Epilepsy is a chronic neurological condition defined by recurrent seizures. Recognition of epilepsy as part of the human condition goes back nearly 4,000 years. Indeed, the word epilepsy comes from an ancient Greek word that means to be seized upon or attacked. Seizures themselves are caused by abnormal and excessive synchronized electrical discharges from neurons, the nerve cells in our brains. That abnormal activity can stay localized to a single place in the brain, or can spread to encompass much of the brain. Consequently, seizures can take a wide variety of forms depending to a large extent on what part or parts of the brain have that abnormal activity. Thus, during a seizure, we can see changes in movement, function, sensation, behavior, alertness, awareness, and thinking. Because there are so many paths to having abnormal brain activity that results in seizure, any one of us is at risk of having one or more seizures, say from low blood sugar, head trauma, hypothermia, as examples. These are provoked seizures. By contrast, in general, we think of epilepsy when a person has two or more unprovoked seizures. Seizures may not always be recognized in children when they first occur. People often think of seizures as convulsive, with stiffening and or shaking behavior. But some seizures can be subtle and very brief, such as an absence seizure in which a patient has brief episodes of loss of awareness and responsiveness, with immediate return to full awareness and responsiveness after. These episodes are easily mistaken as daydreaming or inattention. Epilepsy is one of the most common serious neurological disorders seen in children and in adults with the highest incidents in the first year of life. In the US alone, nearly three million adults, 1% of the population, and about 500,000 children around half a percent of the population of children have epilepsy. In fact, one in 26 people will develop epilepsy during their lifetime. It can occur on its own or alongside other health conditions of the brain, such as cerebral palsy, autism, stroke, migraine, intellectual disability, and others. Despite it being relatively common, there are many myths, misunderstandings, as well as a great deal of stigma associated with epilepsy. In today's episode of Your Child's Brain will address these topics, as well as approaches to diagnosis and treatment, and what research hold and store for pediatric patients with epilepsy. To do so, I'm joined today by my exceptional colleagues from Kennedy Krieger and Johns Hopkins School of Medicine. They are Dr. Sid Gupta. He's the director of the Kennedy Krieger Epilepsy Monitoring Unit, and is an assistant professor of Neurology and Pediatrics at the Johns Hopkins University School of Medicine. Dr. Sarah Kelley is director of the Pediatric Epilepsy Monitoring Unit. She is also an Associate Professor of clinical Neurology. Dr. Eric Kossoff is a professor of neurology at the Johns Hopkins University School of Medicine. He's also director of the Child Neurology Residency Program at Johns Hopkins as well. All three of our guests, were recognized by Baltimore Magazine this year as top doctors for 2024. Welcome Sid, Sarah, and Eric. Sid, I'll start with you. Let's talk about how is epilepsy defined, and are all seizures or seizure disorders considered to be epilepsy.

Dr. Sid Gupta (SG): The brain consists of specialized cells called neurons that communicate with each other through electrical activity. A seizure is an uncontrolled burst of electrical activity in the brain that causes temporary transient changes in muscle tone, sensations or altered awareness. A seizure can be an event that may be provoked or precipitated by an acute cause, such is high fever, toxin, certain medications. We don't consider that epilepsy. Epilepsy is a chronic condition that causes a person to have repeated recurrent unprovoked seizures.

BS: What are the different types of seizures? Sticking with you, Sid?

SG: Seizures come in various different shapes and sizes. Most people are familiar with convulsions. This type of seizure involves stiffening, shaking of the entire body, falling to the ground, loss of consciousness. This is the most dramatic of all seizure types and clinically more obvious. But other seizures may be more subtle. For example, seizures may look like just staring spells or zoning out episodes. We call them absence seizures. They may involve quick uncontrolled body jerks. We call them myoclonic seizures or sometimes they may just involve sudden fall to the ground, we call them atonic seizures. Broadly, these seizures are divided into two major groups or classes depending on where the seizures are starting from. They are the focal onset seizures and generalized onset seizures. Generalized onset seizures start throughout the brain on both sides at once. Focal onset seizure, on the other hand, as the name suggests, start in one part of the brain and they may or may not spread to the other side. The symptoms of focal onset seizures are very variable, and they really depend on the area of the brain the seizures are starting from. For example, if the seizures start in the occipital lobe, the area of the brain that is responsible for your vision, you may see flashing lights or colored dots. If they start in the area of the brain that control movements, then those seizures may be associated with jerking or shaking of different parts of the body and so on.

BS: Eric, let's talk about the many causes of epilepsy. How would you characterize the causes? Suppose you were in clinic talking to a family with a new diagnosis, how do you present the causes of epilepsy?

Dr. Eric Kossof (EK): This is definitely a big question that our families ask us is why? What's the cause of epilepsy in their child? Why is this happening? A lot of times we'll see children and their families for second opinions, and they're under the impression we don't know. Usually, that's the farthest thing from the truth. I think we're in an era now where most of the time we know the causes for epilepsy. It isn't just one disease, like many of the disorders you've covered on the podcast, epilepsy is multiple different conditions that can cause it. It can be due to a structural problem in the brain, a malformation, or what we call a cortical dysplasia where the gray matter and white matter get confused during development. It can be due to a tumor. Although that's relatively rare. Parents and of course, their children, too, are sometimes very worried about it being due to a tumor. It certainly can happen, but it's less common. Metabolic conditions, genetic conditions. This is really the new frontier in epilepsy. Our genetic work has gotten just to the point now where we can diagnose with a swab in the cheek and be able to know what the cause of their epilepsy is genetically. Dr. Gupta, Sid, he's really an expert in the genetics of epilepsy, may talk about this more. It can be due to strokes. It can be due to head trauma, as you mentioned earlier. Sometimes it's a syndrome where it's a constellation of features that we know about like absence epilepsy or a condition called juvenile myoclonic epilepsy. It's a constellation of symptoms in EEG. We know a lot about these, and many children can outgrow these syndromes. Then there is actually a small percentage of children, where despite all the tests that we do, no causes identified. We sometimes call this idiopathic or unknown causes of epilepsy. It certainly does happen, but that number is getting, much smaller over the years.

BS: Sarah, Eric just mentioned EEG. I think we'll have a chance to talk about what that means in the context of how is epilepsy diagnosed? Can you take us through the approach to diagnosing epilepsy?

Dr. Sarah Kelley (SK): When we think about epilepsy, we really think about it as what we call a clinical diagnosis. What that means is we really need the information from the family, from the child to determine what happened and whether or not the child has epilepsy. When we see you in clinic, we usually ask about what you saw. What did the child look like when they were having the spell? Did they have movement on one side of their body or the other? Were they awake, or did they lose consciousness? Did the child feel something? We ask them directly, did they feel anything before the seizure? We asked the parents what they saw afterwards. Did it take them a while to wake up after the event, or were they immediately back to themselves? Also, we ask what happened around that time? Was the child very sick with a high fever or were they sleep deprived? Did something else happen that may have triggered an event? All of these things help us determine whether or not this was a seizure and possibly epilepsy or was it some other event that was not a seizure and would be treated differently? After we have all this information, a lot of times we can make a diagnosis. Another thing that can help a lot is if the family is able to capture a video of the event. If they're able to get a video, we can look at it and say, yes, this looks like a seizure from our experience, or maybe it doesn't. Then also in addition to asking what the seizure looks like and seeing a video, we will often obtain what's called an EEG, or an electroencephalogram. An EEG looks at the brain waves of the child. What we do is we put electrodes on the scalp, they're putting stickers on the scalp, and they record information from the brain. When we look at those brain waves, we can see discharges that occur between seizures. When patients have epilepsy, we can see what are called interictal discharges. What these are are little sparks. We call them seizure discharges or epileptiform discharges, and they occur between seizures in some patients who have epilepsy. When we see these, they can help us determine what type of seizure a patient has and whether or not they have epilepsy. Sometimes just capturing a short EEG is enough, but sometimes if a patient doesn't have a seizure or an event during that time, we might need a longer recording in order to determine whether or not there is underlying epilepsy.

BS: You just mentioned video and how helpful it is, how transformative it's been to have the readily available video recording now with smartphones in most people's pockets that has changed our ability to go from a description to actually seeing it, it matters immensely. I appreciate you underscoring the importance of the captured on video, if at all possible. I described that both you, Sarah, and Sid lead epilepsy monitoring unit. Let's talk about what that means. What is EEG monitoring, and when is it called for?

SK: Absolutely. The short EEG that I just mentioned is what we call a routine EEG. That's typically 20-30 minutes in length and can give us information between seizures or between events, but sometimes it's not enough. Sometimes we have additional questions that need to be answered, and so we want a longer EEG. There is the option of performing an EEG that's a few hours in length and over night EEG. But sometimes we really need to bring the child into the hospital to determine what's going on and to best treat them. There are a few reasons we could do that. One is a child is having a spell that we're not sure if it's seizure or not. The best way to figure that out is to bring them into the monitoring unit, capture the spell, and determine if there is abnormal electrical activity on the EEG during the spell. If there is, that can give us a diagnosis of epilepsy, and if there isn't, that might give us a diagnosis that is something other than epilepsy. The other reasons to bring patients into the monitoring unit would be if we know they have epilepsy, but it's what we call refractory or intractable, meaning that they failed two medicines two adequate doses, and they're still having seizures. If that's the case, then we will be thinking about other options for treatment in addition to medicines. These could be diet therapy, and they could also be surgery. If someone has seizures coming from one area of the brain, it's possible that surgical resection or taking out that part of the brain could lead to a reduction in seizures or even seizure freedom in some children. We will bring the children into the epilepsy monitoring unit to determine exactly where the seizures are coming from and see if surgery is an option for them. Another reason that we might bring someone into the epilepsy monitoring unit is to determine whether or not a different treatment can be instituted while they're there in a safe environment. A patient may be on certain medications that aren't working and we want to quickly switch them in the safe environment of the epilepsy monitoring unit to give them better seizure control. Or a child may be having side effects from medicine, and we want to wean those medicines, take them off while they're in a safe environment while changing around medicines. Lots of reasons to bring the kids into the epilepsy monitoring unit.

BS: Sid I can imagine the challenge that if there's a young child or a child perhaps with an intellectual developmental disability or behavioral disruption, it might be hard to have the leads on that child for the duration that Sarah just described. Talk about how you take on the challenges of making sure that children with those conditions can get in an EEG monitoring study done as well.

SG: Yes, of course. Great question. Yes. But I'll start by saying that EEG is a painless, non-invasive procedure, and most children actually tolerate it pretty well. Sometimes in kids with developmental disabilities, they may have more anxiety with the unfamiliar equipment or have sensory dysregulation that may pose a challenge. In such cases, we do take some extra measures to ensure a successful study. For example, if a difficult EEG hookup is anticipated based on the patient's history, the preparation for the test starts even before the patient comes in for the study. We provide ample materials, resources in the form of pictures, stories, videos to the families so that they get more familiarized with the tests. This helps mitigate some anxiety on the day of testing. On the day of testing, the EEG technologists are often assisted by certified child life specialists who can help play with the child or distract the child when the leads are being placed. We are very lucky here at Kennedy Krieger Institute and Johns Hopkins to have the support of a very strong and dedicated child life specialist team. Now, if these strategies are unsuccessful, then occasionally, we do refer patients to our behavior psychologists who then work with the child on various strategies to improve cooperation with the test. These approaches help in majority of the difficult cases, and finally, if still unsuccessful and the EEG data is absolutely essential to make management decisions, then we also perform EEGs under sedation, a service that is available at Kennedy Krieger.

BS: Eric, let's dive into talking about treatment for seizures in epilepsy. There's myriad approaches. Again, if you're in the clinic with a patient's family, talking about options, how do you describe the pathway into treatment?

EK: One thing that's really great now, is that we have, as you mentioned, so many different treatments available, that for the most part, if one treatment doesn't work, we can move on to another one, or if a treatment has side effects that are really causing a problem, we can find something else. When I'm talking to families, maybe not at the first visit, usually we try medications first, and I'll get into that in a minute. When we see families that have had children that have had seizures that have been going on for a long time and their refractory, as we call them, where therapies haven't helped, I usually tell family that there are four major treatments that are medical available. I use the analogy. It's like four seasons of the year, spring, summer, fall and winter. We have medications, diet, neurostimulation, and surgery. they're not mutually exclusive. We often do two or three at once. which one you pick first, nowadays can actually be very different for every child. Although we often use medications first, in some situations, we might try the diet first or surgery even if we think that's the right thing to do. Medications are typically Brad, what we do first. There are 20-30 different medications out there. We've had medications for the last 150 years. They all have very different mechanisms of action, different pros, different cons, different side effects that we have to be aware of. Sometimes the medications may work on what we call comorbidities. Might help migraines. It could cause weight loss in someone who's overweight or weight gain in someone who's underweight, things that we may play off each other to give us two things for one. Most of the medications now are very child-friendly. They come in liquids, they come in chewables, they come in sprinkles, and, of course, they come in pill forms. For the most part, we try to do it twice a day, so like breakfast and dinner to make it convenient for the families. We even have sometimes once a day long-acting medications, which I like to use for my teenagers and college kids. It just makes life a little bit easier. Medications are very successful. They work about 70-80% of the time, and that may be all we need to do. But if they don't work, we have three other major options. We have epilepsy surgery. Epilepsy surgery is used if we know exactly where in the brain the seizures are coming from, and that has been identified through MRIs or EEGs, as was mentioned earlier, and we think it's in an area of the brain that's safe to remove. Epilepsy surgery can be curative. It can be a wonderful thing that can really alter the course of that child's life. As epileptologists, that's what we call ourselves. It's a fancy word for those of us in the field. We're all trained to think about epilepsy surgery even at the first visit, even if we're not necessarily going to do it, just to remember it and think about it. If that's not an option, or perhaps the family doesn't want surgery, then we think about what we call the non-pharmacologic treatments, things other than medications, and that's diet therapy, and then neurostimulation. Neurostimulation are things like the vagas nerve stimulator. There's deep brain stimulation. We even have a device called the neuropate device, which is responsive neurostimulation. These are all therapies that work through using electricity to stop seizures sometimes before the child even knows they're having them. These are done through surgery. Usually, a neurosurgeon will place these. They're on 24 hours a day, seven days a week, and usually done again in conjunction with medications. Then finally, the therapy that is my specialty is ketogenic diet therapy. This is using high fat, low carbohydrate diets. Again, usually in combination with medications to help suppress seizures, and in some situations, even completely stop them. Again, which of these therapies are done is really to some degree up to the parents, along with consultation with their providers?

BS: Eric picking up on the ketogenic diet. I know this is a major part of your career. Let's tell a little story about how was this diet discovered. What do we know about how it works?

EK: This could almost be a podcast in and of itself, Brad. We've been [OVERLAPPING] really in a renaissance of using the ketogenic diet over the last 20 years. Although the history of it goes back to 1921. Just three years ago, we had 100 year anniversary of the ketogenic diet, which led to actually a lot of meetings and review articles and chapters all highlighting this. This is a high fat, moderate protein, low carbohydrate diet. For most children who are on it, it will be foods like whipping cream, bacon, avocados, mayonnaise, oils. Sometimes, again, fruits and vegetables and meats that are carefully calculated by a dietitian in most situations. There are actually several different diets, but they're all variants on that theme. These therapies are usually started in the hospital, but they can be done as an outpatient. What these diets do is actually like we know many of the causes for epilepsy. There are actually a multiple mechanisms by which the ketogenic diet works. It is known to probably help suppress seizures by keeping the blood glucose stable. May also work interestingly through the gut microbiome. Some bacteria in your gut may increase GABA, an inhibitory neurotransmitter and help suppress seizures. There are other mechanisms, and, of course, it's called the ketogenic diet for a reason. Your body will make ketones if you give it fat at the expense of sugar. Those ketone bodies, and there are several of them, may act directly to stop seizures or indirectly through the mitochondria in your brain cells to improve seizure control as well. We've been doing this for a long time here at Johns Hopkins and through Kennedy Krieger Institute. These are again, great therapies in certain situations. Again, the family has to be invested in the process because it is a lifestyle change. It's not something that is necessarily easy to do. There are some children who are formula fed only. They're babies or they have gastronomy tubes, and they're relatively easy to start them on the ketogenic diet through changing their formula. But even that has potential risk, and there are side effects to this therapy. It can cause constipation, high cholesterol, sometimes kidney stones, and weight loss. This is not something that we recommend that a family do on their own. They should talk to their neurologist. Probably consult with a dietician before embarking on this journey. But when it works, it's amazing, it works in about half of the children we tried on, and about one out of 10 will become seizure free. These are again, typically Brad children who have failed multiple medications, so it can be quite an impressive, powerful therapy that we use.

BS: It really is a fascinating story, really in the history of medicine. I take your point, Eric. It's a good topic for a subsequent episode. Thank you.

EK: Indeed.

BS: Sarah, can a child with epilepsy outgrow it?

SK: Yes, they can. About half of children who have epilepsy will outgrow their seizures. There are some groups of children who are more likely to outgrow their seizures than others. There's certain seizure syndromes that are really only seen in the childhood time period, and so those kids are more likely to grow out of their seizures. But everyone has the opportunity to as they get older. The brains are less excitable as someone gets older, and so there is more of a chance that their seizures will stop. When we think about treating seizures, we always typically treat for two years. If the child has no seizures for two years on therapy, then we think about weaning the therapy to see if they will successfully come up their medication if their EG has normalized and everything is going well.

BS: One of the areas, I think that really anybody listening, whether you're a parent of a child with epilepsy or just somebody that might witness somebody having a seizure. Out in the community would want to know how do you keep a child or a person having a seizure safe during that seizure.

SK: I think that's really important. It's important to think about it ahead of time also because it is very scary to see a seizure, especially if it's a big shaking event. Knowing what you're going to do in that situation is very important. What we tell families is that you want to keep the child safe. You want to move everything away from them, that could injure them. You don't want something sharp or hard near their head, if they're shaking and may hit their head on it. You also want to turn them on their side. The reason for that is if they're going to throw up, you don't want them to breathe that back in. Additionally, you don't want to put anything in their mouth. There's some old wise tales out there that you can swallow your tongue when you're having a seizure. It's not true and it's much more dangerous to have something in the mouth that you could bite, choke on, hurt someone else, if it's someone else's finger. All of those things are much less safe. Additionally, you want to think about whether or not you need help and whether or not the patient needs a rescue medication. A lot of children we see in clinic, we will prescribe a rescue medication to be given typically if the seizure lasts longer than five minutes. Most seizures will end on their own within 1-2 minutes. If they're not ending within that time frame, you want to think about either giving a rescue medicine or calling 911 to get extra help as they will have rescue medicines on the ambulance.

BS: Sarah, there are known triggers for some people with seizures, like flashing lights, famously, a video game some years ago, had a whole spate of people having seizures as a consequence. When you're doing an EEG study, we often flash strobe lights to try to elicit a response. What's happening there with these responses to stimuli that can drive seizure activity?

SK: There are a small group of seizure disorders. There are generalized seizure disorders that can be what we call provoked or stimulated by flashing lights. In those particular seizure types, that ability to be stimulated by flashing lights can be reduced by providing certain medications. Usually it's within a certain flash frequency. There are those movies that we've heard about. There's the video games that we've heard about that have triggered seizures. In general, the media tries to stay away from those specific flash frequencies, so that doesn't happen. But there are other everyday occurrences that we do need to look out for, as well. For example, if a child is riding in a car on a sunny day and the sun is flashing through the trees, that could also potentially trigger a seizure. There are certain types of glasses we can recommend. We recommend certain medications for those seizure types, and we monitor how they're doing by getting the EEGs and using the flashing lights during the EEGs to see how they progressed.

BS: Sid, we've talked about how something like intellectual disability can lead to a seizure or be part of a seizure syndrome that brain injury can result in having recurrent seizures. What about the other direction? Do seizures themselves cause brain injury?

SG: When we talk about brain damage from seizures, the extent and the type of brain injury that a seizure causes really depends on the seizure and how long the seizure lasts. What we do know is that convulsive seizures that last for a long time in the order of several minutes, two hours, has the highest risk of loss of brain cells. This particular seizure type is called status epilepticus and is a medical emergency. Short seizures, on the other hand, lasting seconds to a couple minutes, may not cause a similar physical injury to the brain. However, we do know that repeated seizures and epilepsy is often associated with a number of cognitive neo-developmental comorbidities such as intellectual disability, autism spectrum disorder, ADHD, or even specific learning disorder. Now, every child is different and the risk of developing such comorbidities can be multi-factorial and different for every child. It is also important to recognize that the underlying cause of epilepsy, for example, genetic or congenital brain malformations may well be an independent risk factor for developing such comorbidities. How much the seizures additionally contribute to developmental issues in such cases can sometimes be a little difficult to disentangle. Periodic neuropsychological assessments can sometimes be helpful in such scenarios to answer that question and to effectively identify this specific group of epilepsies that we call epileptic encephalopathies, where we believe that the epileptic activity itself contributes to cognitive impairments above and beyond what is expected from the underlying cause.

BS: Eric, are there things that kids, and they grow up to be adults, when they're adults, that they can and can't do if they're living with epilepsy?

EK: Brad, that's an excellent question that comes up a lot, usually at the end of our clinic visits where concerned parents will ask what things can my child do? What can they not do? Usually, the child is there for the conversation too, and of course, wants to do everything. We do discuss this at length with the families. One thing that's really interesting is you make get different answers from different neurologists. This is one of the topics you brought up today where we all may have a little bit of a different way in which we approach this and maybe some different opinions because I think for the most part, there are no rules. There are no set criteria. I tell families swimming is fine. You just have to make sure that there's either a lifeguard around or someone who knows how to swim that can help the child. Usually, we say to be a little careful in streams and oceans and lakes where maybe there can be currents that could cause a problem, but again swimming should be fine. Sports comes up quite a bit. Children want to play football, lacrosse, soccer. Again, for the most part, not only is this an okay thing to do, it's a good thing to do for them to have exercise and social interactions with other children, but to some degree, I do tell families if it's something that could cause a head injury maybe take it slow or maybe try a different sport if they're really worried about repeated concussions. The final topic that really comes up for our teenagers is driving. Driving is a big concern for parents, and even more of a topic that the children themselves when they approach driving age want to talk about. Every state is different. It's important for anybody to know what the individual state rules are. We are all here in Maryland, but what may be occurring in Pennsylvania, DC, Virginia could be very different. In Maryland, the rules are you have to be three months seizure-free, and the state itself will look at the patients forms, they'll look at all the information, and they actually make the decision. Maryland is also a patient-reporting state. It is the parent's responsibility, and eventually the child and the adult responsibility to inform the motor vehicle association about their epilepsy. Some states are physician reporting states where the physician has to report each child, whether they can drive or not, but it's important to know there are nuances to it. In some situations, we might get an extended EEG to make sure they're not having subtle seizures like absent seizures that could affect driving. We also really want to make sure that they're compliant, that they're taking their medications as they should. Then again, they have to be honest, and they have to report as soon as a seizure happens and pause driving for a temporary period of time.

BS: Sarah, patients with epilepsy have long dealt with societal and other kinds of stigma. Why is that, and how do you address that issue when you're in a clinic?

SK: We do think about stigma a lot because it definitely continues to persist today. It is something that was a lot more recognized in older times when there was concern that someone was possessed when they had a seizure or had epilepsy, and this led to how people thought about children and adults with epilepsy as time went on. It has persisted even though there's a lot more education out there. I think people in general understand that epilepsy is not contagious. Seizures are not contagious. They're not going to hurt someone else because of it, but still a lot patients are very concerned about telling other people that they have seizures or have epilepsy. This can be problematic when they have a seizure at school or when they have a seizure when our young adults get older and go off to college and don't tell their roommates about their seizures. This can be problematic if someone sees the seizure and doesn't know how to react to it because they're not aware it's going to happen. Also, just so other people can keep them safe if they're to occur, but I think what's really important to talk about is what Brad mentioned earlier in that one in 26 people will have epilepsy at some point in their life, and that's a huge number. What that means is that there is someone else in their class at school who has epilepsy. I really try to stress that with the patients and the families so that they do feel comfortable telling other people what's going on. Sometimes they will go and do that, and they'll come back to me the next clinic and say, "Hey, I found out that this friend of mine has epilepsy too," and it really helps them in terms of making connections with others with epilepsy and doing well going forward.

BS: Eric, are there some areas in the space of epilepsy that are myths that continue to hold firm that you'd like to debunk?

EK: There definitely are a lot of myths out there. Sarah mentioned one of the biggest myths that epilepsy is contagious. They've actually done studies where they've surveyed young children and even teenagers about epilepsy. It's amazing, and these studies were done pretty recently, how many think that it's contagious? There's one study where they talked about dating and social lives. These children said, "No, I would not date someone with epilepsy, and it's horrible." This really does need to change. There's so much stigma out there and myths and misperceptions. The Epilepsy Foundation, and every state has their own chapter of the Epilepsy Foundation really tries to raise awareness. Their website is spectacular. It's Epilepsy.com, couldn't be more simple. They have walks, and they have events to raise awareness about that. One of the things that I think is the truth about epilepsy and probably a few other conditions is that it's an invisible condition unless you're actually having a seizure, which is a good thing. You see somebody, you won't know that they have epilepsy, and the teenager or young child can choose who they want to tell. They don't have to tell everybody or they can tell everyone if they wish to, but a problem of that too is that, I think because of the stigma, there are not a lot of celebrities and sports stars who have talked about their epilepsy on the national stage, and I think that would be good for our field, but at least right now, it is still a condition that in some ways is in the shadows. There's definitely some other myths. Again, families will think that we don't know why it happens. We don't know why the medications work, which is not true. There's definitely a myth out there that I do hear repeatedly that a lot of our medications cause intolerable side effects. Certainly, while they can cause side effects, most of them are manageable, and we can adjust the medications or find another medication, but again, most children do amazingly well. Most children become seizure-free with minimal or even no side effects. We do tell families about this. We talk about it in a book that we wrote, we talk about it Internet, and certainly, the Epilepsy Foundation really tries to get across the message you heard from Sarah that they're not alone. It's one out of 26. Most families are very surprised to hear that, but I think it does give them some comfort that their child is not alone.

BS: Epilepsy.com, we'll include that link and links to other resources that our expert panelists will provide us that could be on the page devoted to this episode of the podcast. Sid, I'll close with you. What new research is happening that excites you and shows promise that is likely to change outcomes for patients with epilepsy?

SG: One of the most exciting frontiers in epilepsy care is precision or personalized medicine in epilepsy, especially in cases of genetic epilepsies, where the genetic change resulting in one's epilepsy can inform management. Over the past decade, we have seen an explosion in gene discoveries and in our understanding of genetic basis of many different childhood epilepsies. That has paved the way for development of what we call targeted therapies, such as gene therapies, or in development of anti-seizure medications with novel mechanism of action. It has also enabled the smart and strategic use of existing anti-seizure medications rather than traditional trial-and-error method of choosing from different medications. For example, we use a class of medication called sodium channel blockers in patients with epilepsy related to a pathogenic variant in a gene called SCNAD, but we avoid them in patients with epilepsy related to a variant in a different sodium channel gene called SCN1A. Some other examples could be the use of ketogenic diet in Glut1 deficiency syndrome or the use of mTOR inhibitors in tuberous sclerosis, and this list is long and ever-increasing.

BS: That's an excellent place to end, and I want to thank our guests, Dr. Sid Gupta, Sarah Kelley, and Eric Kossoff. We hope that you, our listeners have found this discussion about epilepsy, both interesting and informative. Please check out our entire library of topics on your child's brain at wypr.org, KennedyKrieger.org/ycb, or wherever you get your podcasts. You've been listening to your child's brain. The child's brain is produced by Kennedy Krieger Institute with assistance from WYPR and Producer Spencer Bryant. Please join us next time as we examine the mysteries of your child's brain.