Melanie Cole, MS (Host): Welcome to Meaningful Medicine, a Novant Health Podcast, bringing you access to leading doctors who answer questions they wish you would ask. From routine care to rare conditions, our physicians offer tips to navigate medical decisions and build a healthier future. I'm Melanie Cole. And today, we're talking about the moments that matter, understanding pediatric seizures and epilepsy.

Joining me is Dr. Mohammad Shahnawaz. He's a pediatric neurologist with Novant Health. Dr. Shahnawaz, thank you so much for joining us today. So as we start, please define for us epilepsy versus seizures. The umbrella that they're under. Explain what epilepsy really is.

Dr. Mohammed Shahnawaz: Absolutely. So, I think, really to best answer that question, you need to understand how the normal brain works, which is it has normal electrical activity, and that's the thing that lets you kind of do everything that we do on a regular basis. So, all of our movements, our vision, our feelings, and sensations, all of that is electrical activity of the brain. And a seizure is really abnormal, continuous electrical activity of the brain that comes out in physical symptoms.

There's lots of different types of seizures out there. And the one that most commonly people know about is what people used to refer to as grand mal seizures, right? This is full body shaking or full body stiffening. Your eyes roll up into the back of your head. This is now what we call a type of generalized seizure, which is your whole brain all at once, having that abnormal electrical activity. It's just coming out looking like that full body shaking.

There are other types of seizures as well, in particular called focal seizures where focal seizures or where it's just one part of your brain that's involved in that seizure. It just depends on what part of the body it controls, how it may appear. So, just the simplest example I give people is, let's say, it's in the part of the brain that controls your right arm. You might just get right arm shaking or right arm stiffening and that's it. And you can keep walking and talking and doing everything else. It's just staying right there.

Seizures are a symptom of what we would call epilepsy. Epilepsy is a term. All it means is that you've had two or more seizures in your life. And you're at risk for having more. And so, that's when we give somebody a diagnosis of epilepsy is once they've had two very clear seizures or in certain cases when they've had one seizure and they have high-risk factors that tell us, "Hey, you're more likely to have a seizure."

Melanie Cole, MS: Well, thank you for telling us that, and the criteria by which you determine that we're going to call it epilepsy to begin with. So, you mentioned a few things that could happen with seizures and there's grand mal. And we hear about petit mal, ones that are bigger and smaller. What are some of the signs? What would we notice? I mean, are they always that obvious, Doctor, or sometimes are they a little bit more subtle?

Dr. Mohammed Shahnawaz: So, some seizures can be relatively subtle, right? So, particularly in children, there's a concept called absence seizures, which is another type of generalized seizure that we talk about, where patients are typically there in the middle of doing something and then they just stop. They stop talking. They stop interacting. Some of them will stare. Some of them will blink, and they'll be unresponsive to people. Often, in many kids, this kind of gets tossed aside as, oh, they're just staring, or they're daydreaming, or other things, and sometimes even diagnosed as ADHD for many years before it's recognized.

Same thing with focal seizures, right? Focal seizures can sometimes just involve a little shake of the hand or a little shake of the arm. People dismiss it as, "Oh, it just happened one time. It's not a big deal." And then, it happens again. They're like, "Hmm, I was tired." It just happened until focal seizures in particular. I will tell you that sometimes, instead of staying in one part of the brain, they can spread to the rest of the brain and become one of those full body convulsions. And that's when it becomes a lot more clear to people.

And so, on that line, I'll say that there's a few things that can help people recognize seizures even when they're being subtle. Because I'll tell you, regardless of the seizure type, they have certain characteristics about it. Number one is seizures. When they happen in individuals, they're often what we call stereotyped, which means they start the same way, progress the same way And the same way every single time. So say one time you see your kid shaking their right arm, another time you see them shaking their left leg makes it a little bit less likely it's a seizure.

But now let's say you see them shaking their right arm two times. It looks kind of very similar. The next thing is that after seizures, people are often confused, sleepy, not themselves. Sometimes if it's a focal seizure, it may involve a weakness of whatever extremity was involved, And so, those are all post-seizure symptoms that you can kind of see.

And the last one I always say is that people should always remember that seizures are abnormal electrical activity of the brain, right? And we all do funny-looking things sometimes. Sometimes we're daydreaming or zoned off so much that, you know, we're thinking of something deeply that somebody could come up and wave in our face or talk to us constantly, and we might not respond necessarily.

And so, I always say, if you're worried about a seizure, don't try and just go wave at somebody or talk to them. Actually go and physically touch them, especially if they're a younger child and you're not sure you can even pick them up, move them. If it stops whatever it is they're doing or changes it, it makes it way less likely that that's a seizure, because your touch can't stop electrical activity of the brain. So, these are some of things that people can try and do that maybe for those more, what we would refer to as subtle seizures, that they could try and recognize in that way.

Melanie Cole, MS: Wow. That was really great advice and something that people should know really right away. Now, if you do notice a child having a seizure, we've always wondered what do we do in that time, Doctor? What are you supposed to do? If it's a big seizure, the kind that, you know, we've seen before and in the media, what are you supposed to do?

Dr. Mohammed Shahnawaz: Yeah. So particularly, for generalized seizures, right? Those are the ones that you really need to be focusing on safety precautions. But really, all seizures, you should be focusing on safety precautions. And particularly for generalized seizures, there used to be a lot of the antiquated kind of approaches that people used to do. There used to be, you know, old tales of, "Oh, you need to watch out for them swallowing their tongue," and all of these things. And as science has kind of progressed and we've shown more evidence and data around it all, these things aren't necessarily true.

And so, it really sounds kind of funny the way I would think about it, but the practical sense of words, you would do nothing as in don't hold them down. Don't restrict their movements in any way, shape, or form. Don't put anything in their mouth. You just want to try and clear out the space around them. Make it a safe space so that when they're shaking or stiffening, they're not hitting up against something or harming themselves that way, and you really want to try and time it.

The reason we time it is because seizures in and of themselves are actually not necessarily life-threatening or dangerous to individuals unless you're having one of those generalized full-body shaking or stiffening seizures lasting longer than five minutes. And really, in particular, you're having a lot of them lasting longer than five minutes.

And so, in these situations, you just want to make sure you know how much time has passed. Especially if it's the first-time you're seeing a seizure, you should probably call EMS as well. If you have a diagnosis of epilepsy, sometimes, you're familiar with what needs to be done. And if you're on medications for that epilepsy, sometimes we need to go on higher doses. And so, it's contacting your neurologist and letting them know in those situations.

Melanie Cole, MS: So, no lying them on their side or spoons in the mouth. The things that we've all heard all these years.

Dr. Mohammed Shahnawaz: Yeah. You can always try and tilt them to their side. But again, you want to do it in a safe way where you're not restricting their movements while you're doing it to get them on their side. Definitely nothing in the mouth, like no spoons, no fingers. The risk there is if you put something in someone's mouth when they're having a generalized seizure, they clamp down and they bite and they can break off whatever it is. They can break their tooth. And now, you've actually created more danger that way rather than safety. So, you really want to stay away from those things.

Melanie Cole, MS: That's great advice, really important to know. So, evaluation, diagnoses, you spoke about the criteria for determining that it's epilepsy. So, what does it look like for a patient if this happens once or more than once? What happens? How do they get diagnosed?

Dr. Mohammed Shahnawaz: Absolutely. So honestly, epilepsy is what we call as a clinical diagnosis. And so, what that means is if you've had two events that sound very consistent with seizures, it has all those features we talked about previously. Really already, that's a diagnosis of epilepsy.

Now, where I like to focus on is because just getting a diagnosis of epilepsy is not necessarily enough, right? You want to find out the why. Why do you have epilepsy? And in particular, can we classify your epilepsy as a very specific type of epilepsy? Because that can make a difference. And so, there's a number of tests that we often do to try and help determine that.

The first test that anybody ever gets once they have their first seizure-like event is an EEG. An EEG is where we hook up little electrode stickers to the brain or to the scalp. And we are looking for electrical activity, that's not something that a patient's going to notice, not something that a family's going to notice. It's just electrical activity that the brain does to let the world know, "Hey, look, something's wrong with me," or "I'm a little more likely to have a seizure." Just that type of EEG could sometimes help us determine do you have a generalized epilepsy or do you have a focal epilepsy or something else going on.

The other test that we can often get is something an MRI of the brain, an MRI of the brain is, at the end of the day, I always describe it to people. It's just a picture, right? And so, a picture, sometimes people get an MRI of their brain when they have epilepsy, and it's normal or reported as normal. I always tell families that just means that that picture looks normal right now. And that's kind of, in a sense, a reassuring thing that we don't see any big, bad, scary causes of epilepsy.

And the last thing that sometimes we have to get in certain patients is genetic testing. Especially in pediatrics, I will tell you there's a number of genetic causes for epilepsy. There's a few hundred. Sometimes there's probably at this point, many hundred, diagnoses that are related to genetic causes of epilepsy. And so, depending on your story, depending on your EEG or your MRI findings, sometimes we need to get genetic testing as well.

And so, those are really the common tests that we get to try and figure out that why question, because it's very important we figure out the why. Because it can help guide treatment, help come up with the best treatments for you or otherwise in the future.

Melanie Cole, MS: Wow. That's so interesting, Doctor. And really an exciting time in your field as we think of the diagnoses and those modalities you use to diagnose now. Speak about treatments, what's going on in the epilepsy world today? What's exciting? What treatment options are available and how do you tailor them for each child's need, because they're all different.

Dr. Mohammed Shahnawaz: Absolutely. Yeah. So number one, when you get a diagnosis with epilepsy, the first treatment anybody should ever get is anti-seizure medications. The goal of anti-seizure medications is that we help reduce and get you to seizure freedom when we start them, and there's always newer medications and things coming out there. But I'll tell you, at least in pediatrics particularly, right, there's certain pediatric epilepsy syndromes that we know have great treatments that are first-line standard treatments that have been around for decades, and they do really good for those patients.

There are those other patients who maybe don't fall into those typical pediatric epilepsy syndromes, where there are newer medications that are coming out that are helpful in certain situations. We always start with the first-line ones that we know can be helpful, And then, if they're not doing well on those, then sometimes we'll go to those newer agents that have different ways that they work compared to the older agents.

I'm a epileptologist actually, also, especially by training. So, I'm a pediatric neurologist. And then, we do extra training to become an epileptologist. And so, I actually have a special interest in what we refer to as drug-resistant epilepsy, which is the concept that you have been on two or more anti-seizure medications at maximally tolerated doses. And you are still having seizures. In those situations, it is very unlikely that a third anti-seizure medication is going to get you to seizure freedom. And so, that's when we really should be talking about other more advanced therapies out there. So, I just kind of briefly walked through those with families.

But the one that's been around for probably a thousand years or longer is something called ketogenic diet, which ketogenic diet, it's not like the thing that layman people use for weight loss or other things like that. In epilepsy patients, it's often a little more strict than that where you're eliminating a lot of carbohydrates and you're getting them a lot of your nutrition from proteins and fats to help redirect the brain and make it less likely to have a seizure. I always help families for that one.

At the end of the day, all of these patients are human beings first, and their epilepsy comes second. So if you have a teenage kid who loves eating his pastas and pizzas and those types of things, keto diet is probably not the best option for that individual.

The next thing that we have is we're talking about more devices and, in particular, what I kind of classify as something called VNS or vagus nerve stimulator. This is a device that's implanted under the skin in the chest, and it stimulates a large nerve called the vagus nerve that goes up to your brain.

It works in many ways. But the main way that it works is it stimulates this nerve over time, throughout the day, and basically kind of quiets down the brain. It makes it a little bit less likely to have seizures over time. And so, it's a good option for many patients, especially when you have genetic epilepsies or other things like that.

But the last option, which I don't say last, but just the last of these three I'll say, is something called epilepsy surgery. This is the concept that, remember we went and talked about focal seizures. It's just one part of your brain that's having this abnormal electrical activity. If we can identify that part of the brain where those focal seizures are coming from, sometimes we can go in and do surgeries, working closely with our pediatric neurosurgeon and actually a multidisciplinary team, including neuropsychologists and everybody to figure out where that part of the brain is that's abnormal or causing you to have focal seizures.

We can go and scar it up, remove it with the surgery, or there's also newer devices, in particular something called RNS, where we can implant the simulation right into that area of the brain where it detects seizures before you notice them and tries to make sure that they don't progress to the extent that it's causing problems. So, there's a lot of newer therapies out there and there's a lot of excitement around it all.

Melanie Cole, MS: Cool. Thank you so much for telling us about all of those. Now, you mentioned the multidisciplinary need for these patients. So, how can families support their child with epilepsy at home, at school, everyday activities because it really creates a fear affect the quality of life, but as you mentioned, the ketogenic diet. And so, there's a lot of people that are involved in helping maintain that normalcy so that families can, really go about and have the best quality of life. How can we support our children?

Dr. Mohammed Shahnawaz: I think the biggest thing is talking about it honestly. One of the things that, like I mentioned, is families get so scared of a diagnosis of epilepsy and having patients who have seizures, because it's one of those diseases that's not outwardly visible. It's one that you walk around and nobody can know it happens until you have a seizure in front of them. And so, for me, it's always kind of trying to focus on reminding families and parents and individuals that you're a human being first. You have to live your life. You need to keep moving forward in life. And we will keep treating the seizures as we need to and with whatever treatment options we have available to us.

In that sense, right, it is important to recognize that patients with epilepsy, they may have more difficulty in certain aspects of their life. In particular, epilepsy patients are known to be at a higher risk for learning difficulties, mental health-related issues and everything else that comes with those.

And so, it's important to recognize those as the issues. And once we do recognize that an epilepsy patients having it is getting that multidisciplinary team involved, getting those supports involved and making sure that they're getting thorough care. For example, again, I'm in pediatrics, so we see a different population of patients with epilepsy, but some of these patients with epilepsy are because they've had a brain injury. And so, they may have also cerebral palsy, which means I've had a brain injury and my muscles don't move right because of it.

It's important to get those patients into physical therapy and treating their cerebral palsy while you're treating their epilepsy. Same thing with those patients who maybe, again, don't have that outward clear like, "Hey, this person has a neurologic disease. They have epilepsy, they have seizures, and they're dealing with severe depression or anxiety or other things like that."

That's when we should get together a multidisciplinary team with a child psychiatrist. A psychologist or a therapist to kind of talk to them more about the long-term coping mechanisms. A neuropsychologist who does evaluations thoroughly to kind of evaluate that overlap between neurologic disease and learning difficulties and mental health and how they all interplay together. And make sure we're getting them all the right supports for it so that they can continue living that full thorough life that everybody wants to live.

It's known that in patients, especially with drug-resistant epilepsy, many of them, they can tolerate the seizures. They're like, it's just a small seizure, it's okay. But the thing that really gets to them is their quality of life, everything else that goes around it. And so, sometimes it gets tossed to the side where we're so focused on the seizures, we're not thinking of the quality of life. And I think talking about it, not just with families, but making sure families feel comfortable talking about it with patients. All of this is very important in that aspect of things.

Melanie Cole, MS: Certainly it is. And especially as you say with children, they want to play and they want to be at school and be with their friends, And that fear can really be pervasive. So Dr. Shahnawaz, as we wrap up, what are some messages of reassurance or hope that you can offer families that have received a recent diagnosis of epilepsy for their child and all of the great work that you're doing at Novant Health?

Dr. Mohammed Shahnawaz: So, I think that's the big thing is know there are options, right? People sometimes, they get so stuck in that medication aspect of things, especially if you haven't had a consultation with an epileptologist. They've tried medicine after medicine after medicine. And then, they're not really getting that alternative treatment.

I think especially with some of the newer therapies and things out there. There are medications that may work better for you or there may be other treatment options that are better for you. And that we can get you to seizure freedom. And at the very least, if we don't get to seizure freedom, it's the goal of, "Hey, let's make these seizures not be so burdensome on you so that you can continue to live life. Make them as small as possible, less, less frequent as possible." There's always hope and there's always options on that front. So, don't be discouraged, right? If one medication doesn't work, that doesn't mean that that's the end of it all, we're done for.

I tell families this too. But particularly, with certain epilepsies, right, people get so worried about, "Oh, my kid, and now he has epilepsy. He can't grow up to be an adult. He can't live a normal life. He can't have a career." But I'll tell you, I know doctors and I know lawyers who have epilepsy and live with epilepsy and have their medications and their seizures are fully controlled. And so, you can live a full professional life well into old age, even with the diagnosis of epilepsy. And it's a scary thing. But just know that there's treatment options, and we can always work together to try and figure that out.

Melanie Cole, MS: Thank you so much, Dr. Shahnawaz, for joining us today and really sharing your incredible expertise for patients and their families. Thank you again. And to find a physician, you can always visit novanthealth.org. And for more health and wellness information from our experts, visit healthyheadlines.org.

 If you found this podcast helpful, please share it on your social channels and check our entire podcast library for topics of interest to you. That concludes this episode of Meaningful Medicine, a podcast from the specialists at Novant Health. I'm Melanie Cole. Thanks so much for joining us today.