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Dr. Judith Weisenberg (Guest): Hi, I’m Dr. Judy Weisenberg. I’m a Washington University Pediatric Neurologist and a MomDoc at St. Louis Children’s Hospital.

Melanie Cole (Host): Seizures can be so scary for anyone witnessing them, but is it always epilepsy? This is MomDocs with St. Louis Children’s Hospital, and today we’re talking about epilepsy. Dr. Weisenberg, I’m so glad to have you join us today, because as I said when people witness these seizures, it can be terrifying. Tell us first, what is epilepsy?

Dr. Weisenberg: Well that’s a great question. Epilepsy actually refers to a very broad diagnosis, and basically what it means is that you have demonstrated that your body has a tendency to go into unprovoked seizures at a much higher incidence than the general population. We’re all capable of having a seizure, an epileptic seizure from the brain in the right situation; if you hit your head and a bad traumatic brain injury or if you have an infection of the brain, but epilepsy refers to a condition in which without something directly happening to your brain at that moment, your body is more likely to go into seizures.

Host: Do we know what causes them?

Dr. Weisenberg: Well so there are many, many, many different causes of epilepsy. We roughly divide the causes of epilepsy into about six categories with the three most common being, what we call structural, meaning there’s something we can see if we look at a picture of the brain such as a history of a stroke or an abnormality in how the brain is formed. The second most common is genetic, and this is the most rapidly field – or the most rapidly growing identified cause, and unknown. There are also people who have epilepsy from a history of a remote infection, meaning an infection that occurred in the past, or an autoimmune condition, but those are much less common.

Host: If a child has a seizure, how many do they have to have before they’re officially diagnosed with epilepsy? Is there like a certain number or a marker that you docs use?

Dr. Weisenberg: So in the past, the definition required greater than two unprovoked seizures, but the definition has actually changed in the past few years. These definitions are set up by the International League Against Epilepsy, which consists of a committee of doctors and scientists who study epilepsy, but he current definition of epilepsy does actually only require a history of one seizure, but clear evidence of increased risk of more seizures in the person’s lifetime, greater than approximately a two-thirds chance that they would have another seizure in the near future, and the pieces of information that we might use if we don’t have a history of two ore more seizures might include findings on an EEG and helping us make that diagnosis.

Host: Then tell us, Dr. Weisenberg, what happens when a child does have a seizure, what does that look like?

Dr. Weisenberg: Well so seizures can look like many different things. So to review, an epileptic seizure consists of an abnormal electrical discharge from the brain to the rest of the body, and they can either come from just a small part of the brain or even from the whole surface of the brain, and if they come from just a small part of the brain, the seizures may be as simple as a very unusual sensation or rhythmic movements of just one part of the body, one part of the face, one arm. It might consist of the person just losing awareness and not being able to respond for a short period of time. The most common presentation that people identify readily as seizures are what we refer to generalized tonic-clonic seizures, which consistent of whole body shaking, but it’s important to know that there are many different things that will look different from that but are seizures.

Host: Are there certain triggers for seizures for parents with children that have epilepsy? Are there environmental factors, stress factors, lifestyle factors, anything that can bring on a seizure?

Dr. Weisenberg: So for people who do clearly have epilepsy, that increased tendency to have seizures, the two most common triggers would either be sleep deprivation, so not getting enough sleep, or infection, which of course is very hard to avoid in our younger children. So a fever or any kind of virus, if they already have that tendency for seizures, may bring them out. Once we are dealing with older individuals, teenagers if they are drinking alcohol, of course not legally, that can also lower your seizure threshold. There are a few medications that are important for any child with epilepsy factor to know if they have a history of epilepsy because they can also increase their risk for seizures.

Host: Well I think that every parent’s biggest question doctor, is can seizures be dangerous and what should a person do if they see someone having one?

Dr. Weisenberg: So seizures absolutely can be dangerous; however, most of the time the dangerous thing about a seizure is not the seizure itself but where you are when you have it because fortunately most seizures do stop quickly in usually less than five minutes, but if you’re in an unsafe situation when you don’t have control over your body, it can be very dangerous. So the most important thing is to avoid those situations. The most dangerous situation would of course be water, so any child who has an increased risk for seizures should not be in a bathtub unattended. We also of course recommend that nobody swim alone, but particularly any child with a history of seizures should be very closely supervised in any water activity. We also strongly recommend caution with heights, so we generally recommend that children not climb anything taller than themselves. Of course it’s important to keep a balance, so close monitoring and making a judgement on areas like playgrounds is also key. We want all of our kids to lead as normal and happy and healthy a life as possible.

Host: Is there anything we need to do if we see a child, you know, we’ve seen in the movies they talk about them biting down on something – what are we supposed to do?

Dr. Weisenberg: So in the event that a person is having a seizure, the most important thing is to get them into a safe position. So if they’re in a dangerous spot, we certainly want to get them out of that spot, but then the next thing to do is put them into what we call safe position. We want to have them lying on their side, and actually we do not recommend putting anything into their mouth. That was many, many years ago a recommendation of first aid to put something in the mouth, but we now know that actually is not helpful. The key thing is though to have that person on their side and make sure there’s nothing around them that if their body is jerking they would accidentally hit themselves against or get hurt. If the seizure then is going on for more than five minutes, there’s a concern about breathing, or really if a family or observer is uncomfortable, it is always best to contact emergency services, call 911 as soon as possible.

Host: That was a great explanation doctor. Thank you for that. How does the Washington University Pediatric Epilepsy Center treat seizures?

Dr. Weisenberg: So we do a variety of things to treat seizures. The first thing of course is to make sure that any individual with a history of seizures has been properly evaluated. It’s very important that one of our providers, whether it’s one of our nurse practioners in our new onset seizure clinic or one of our physicians has taken a detailed history to make sure we understand the specific characteristics of the seizures so that we can best classify the type of seizures and the type of epilepsy that we think that person has. Most often they require some tests including an EEG or an electroencephalogram and a brain MRI, but we may also recommend additional blood tests or other forms of testing. After that, we of course also review the important factors involved in keeping somebody safe with epilepsy and then move on to discussing what the appropriate treatment to try to prevent future seizures is. For most people, the first line of treatment would be a medication, and the reason for this is that’s still the majority of people with a history of seizures will respond to a medication and be able to have their seizures well controlled, and so we have a huge list of medications to choose from, and we want to find a medicine that has the best odds of controlling the seizures with a minimum of side effects. Our goal is to not feel like you’re on a medication and to not have seizures. If, however, medications are either not working, either because of side effects or are simply not succeeding in controlling the seizures, then we would consider whether they are a candidate for a type of surgery to prevent the seizures or hopefully cure them or special diet.

Host: Well you went right to where I was going to go from here. So before we talk about some of the surgeries available, tell us about the dietary therapies that are involved in epilepsy and the ketogenic diet and some of these others that we’re hearing can possibly help.

Dr. Weisenberg: So there are roughly three diets, though they technically all sort of fall into the same big category. So there’s something called the ketogenic diet. There’s something else called the modified Atkin’s diet, and there’s something else called the low glycemic index diet, and these are all diets that really if you think about it were attempting to do the same thing as the medication; lower that tendency to have seizures. The difference is that rather than taking a medication, one, two, three times a day, we’re monitoring every single thing that, that person eats. We even pay attention to what lotions and shampoos and toothpaste the use because what we’re trying to do is alter the body’s metabolism and these diets can work for the right group of patients but they are a fair amount of work, and they do carry some side effects, particularly the ketogenic diet because it is a high fat diet with almost no carbohydrate in it.

Host: And if parents have tried the medications and these diet therapies, what does surgery look like? What does that discussion look like and what treatment options might be available?

Dr. Weisenberg: So anybody who has failed two effective medication choices at appropriate dosing should be exploring alternative treatments including specific – including both diets and surgeries and surgeries can roughly be divided into two types; curative and palliative. Curative is where we’re really hoping to eliminate the cause of the seizures and eliminate seizures for life. Palliative is where we expect to improve the overall seizure burden, but don’t expect that it will eliminate them completely. These surgeries range very much depending on what the cause is. In some cases, we know that the child was born with a very small area of the brain that didn’t develop quite right, and a surgery in which we remove that small area after careful evaluation and testing, might involve an open brain surgery. For other people if we’re looking, for instance, at what I refer to as that palliative category, it might refer to some sort of implanted device, kind of like a pacemaker but it’s for the brain. So this includes something called a vagal nerve stimulator, and there’s a huge range of surgeries that we offer, both within the curative and palliative surgeries. So within brain surgeries sometimes it involves a very small open surgery. Sometimes it doesn’t even involve an open surgery, it might be a laser technique to remove that area, other times it is a very big brain surgery.

Host: Wow, that’s a lot of treatment options doctor, thank you for sharing those with us. The Washington University Pediatric Epilepsy Center is a level 4 center. What does that mean?

Dr. Weisenberg: So there is something called the National Association of Epilepsy Centers, and it provides an accreditation. Most epilepsy centers are either a level 3 or a level 4, and it is recommended that anybody with what we call drug resistant epilepsy be referred to at least a level 3 center. What a level 4 center means is that we provide detailed evaluation, have trained epileptologists and a wide variety of surgeries as well as diagnostic testing available to provide all the different modalities of treatment for epilepsy.

Host: What great information, such an interesting topic. Doctor, wrap it up for us, what would you like parents listening that may or may not have a child with epilepsy but are really interested in what treatments are available and what a seizure looks like, what we should do if a child has one – please wrap it up with your best advice.

Dr. Weisenberg: So there are so many things. I could probably talk all day about this topic, but I think the biggest take home message is if you have a child with epilepsy or know somebody with a child with epilepsy who’s seizures are not well controlled and has not been evaluated at an epilepsy center, it’s so important that they do, do that because the number of treatment options and all the modalities that we have continue to grow every day. We are learning more every day about how to diagnose and treat epilepsy and it’s changing quickly, so it’s very important to be getting the most up to date evaluation.

Host: Thank you so much for being with us today and sharing your incredible expertise in this area. If you found this podcast informative, please share on your social media and be sure to check out all our other helpful podcasts in our library, head on over to the website at stlouischildrens.org to get connected with one of our providers. I’m Melanie Cole.