Actor Cameron Boyce’s Legacy and Raising Awareness About SUDEP

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Nath:
And I'm Dr. Audrey Nath.

Dr. Correa:
This is the Brain & Life podcast.

Dr. Nath:
Welcome back. Hi Daniel. So this week I spoke with an absolutely fascinating family of Cameron Boyce. So Cameron Boyce was a Disney star and absolutely talented dancer who also had a bunch of other acting roles on HBO shows and General Hospital. So you might have seen him on various places in film and TV. I got to chat with his family about his incredible career as well as SUDEP. Daniel, you're also an epileptologist, and this is just something so tragic that we see with our patients and families, sudden unexpected death in epilepsy. So we have a whole discussion about his epilepsy, how he didn't have that many seizures in his life and still died as a result of a grand mal seizure.

Dr. Correa:
Such a tragedy every time that it occurs. Thankfully it's rare, but just brings up the importance of controlling seizures and epilepsy and working towards a future where we'll have more information about SUDEP. I'm happy that his parents and his family have continued efforts to advocate for SUDEP while also celebrating Cameron's career and the impact in stories that he brought to people.

Dr. Nath:
Absolutely. They talk about how they didn't know what SUDEP was, they didn't even realize it was on the table, that it was even a thing. And so part of what they're doing is getting the word out. So everybody is aware of how dangerous epilepsy can be and how important it is to control seizures.

Dr. Correa:
With one in 26 people in our society being diagnosed with epilepsy during some point in their lifetime, it's important for everyone to learn more and understand about SUDEP and epilepsy. In the coming weeks, join me for an episode where I interview Michelle Boyaner. She is a documentarian and talks with caregivers from around the country helping support individuals and family members living with different types of dementia.

Dr. Nath:
Fantastic. Shout out caregivers all over the place. And on February 23rd, we will be doing another brain health episode. I'm so excited about this. It's about nutrition with Dr. Reeta Achari.
Today on the Brain and Life podcast, we are honored to be joined by Victor and Libby Boyce, parents of Cameron Boyce. Many of you may have heard about Cameron from his acting work with Disney. And many of us heard on the news in 2019 when it was announced that he suddenly passed away from complications of epilepsy and sudden unexpected death and epilepsy, SUDEP. I wouldn't really be able to make it through Cameron's entire resume right now in the time that we have, as he accomplished more than most kids and adults could dream of. Many of you know him as Jake in the Disney Junior series, Jake and the Never Land Pirates, and he was in a whole bunch of movies. He was an accomplished dancer. And there is this clip of Cameron on set with Michelle Obama making her laugh so hard that they had to stop filming.
And so I'm not going to do justice to Cameron's striking talent and body of work. But even beyond his incredible career in acting and in dancing, he also used the platform that he had to give back to important causes including clean water to people who needed and homelessness. These things that he didn't have to do. So today of course we are going to be talking about the neurological condition that Cameron lived with, epilepsy and sudden unexplained death in epilepsy or SUDEP. But in addition to that, we will also be celebrating his incredible life. Thank you Mr and Mrs Boyce for keeping his voice alive. Welcome to the Brain and Life podcast.

Libby Boyce:
Thank you Dr. Nath for having us. We really appreciate it and we're happy to be here to join you and share our story.

Dr. Nath:
I'd like to start from the beginning. For anyone who doesn't remember Cameron from TV and movies, give me a sense, what was he like as a kid and how did this whole entertainment industry come into your lives?

Libby Boyce:
Cameron was very musical, very rhythmic from day one. His dad used to actually... In order to keep him from crying as a newborn, music was a thing that he just immediately would... His eyes would get big, he would stop crying. And he had colic so he was crying and crying and we couldn't figure it out. And then his dad one day put on hardcore rap, literally. He was, okay, I don't know what to do. And he's rocking him and his front pack that they have for the kids and then he just noticed in the mirror that the kid was like... That was it. And from that day forward, we didn't really realize he's honestly a dance prodigy. And in preschool they had a dance teacher that would come in once a week. We had no idea that even happened. So one day they said, oh, come to the dance recital. And we went and Cameron stole the show and all the kids just sort of stopped and just stared at him. He was the show. And so we decided to put him in dance classes because he was so joyful.

Dr. Nath:
You can still watch it on YouTube everyone, it's mesmerizing.

Libby Boyce:
And he literally was classically trained from the time he was five to 12 and spent hours in the dance studio and just loved it. And so a lot of the kids there were doing commercials and so it sort of fell in our lap. It wasn't something we pursued and that's how it sort of all started and we went ahead and he quickly got an agent and quickly started booking in terms of that world and it just went from there. We really didn't have to do much.

Dr. Nath:
That's incredible. His talent took you guys and shook you essentially. So he was living a very, very active life. I mean, just even watching little clips about what he was doing in terms of dancing and acting and I'm sure he was traveling a lot, working with a lot of people. In this very possibly hectic life that he had, how did epilepsy start? How did you find out?

Libby Boyce:
He had his first seizure when he was 16. And supposedly you don't get diagnosed with epilepsy until you have your second. So his first one was when he was 16 and it was New Year's day and it was very, very early morning, about 6AM that his best friend who had slept over, two of his best friends had slept over on the floor in his room, came running in and saying something's wrong with Cameron and he's bleeding out of his mouth. We ran in and I remember his dad sort of gave him some water and he just sort of poured it all over himself. He didn't know who he was. He didn't know what year it was because he was in that refractory like five, 10 minutes after a seizure.
I just remember his dad picking him up, bringing him into the kitchen, putting him up on the counter. We called 911, they came, Vic got in the ambulance with him. They went to the hospital and they were there for a while. And of course I was freaking out at home. And then they told us he had a seizure and that everybody has one free seizure in their lifetime and then just if he has another one, bring him back. And he did have another one when he was 17 and that's how it all started.

Dr. Nath:
I'm wondering, when this was first happening, what did you even think was happening?

Libby Boyce:
No idea.

Victor Boyce:
Let me tell you what his friend said.

Dr. Nath:
Yeah.

Victor Boyce:
He said, he ran into my room, he busted in the door and he said Vic, Cameron is spitting up blood. So I thought he was having some kind of gastrointestinal problem or something.

Dr. Nath:
I could see that.

Victor Boyce:
But what had happened was he bit his tongue during the seizure and then when they told us he had a seizure, I'm like, what do you mean he had a seizure? Why did he have a seizure? Because I thought, you needed something to happen to you. Strobe lights or... I wasn't even thinking about epilepsy. Of course I knew what a seizure was, but I don't know anybody that ever had a seizure. I've never had a seizure. She's never had a seizure. I was like, what do you mean he had a seizure? I wasn't even accepting that, that's not right. He didn't have a seizure. So that was my reaction because we were completely blindsided by it. The drama started after the second seizure.

Dr. Nath:
What do you mean by that?

Victor Boyce:
Well, it means now he's really considered epileptic. Now we have a problem. We thought we didn't have a problem because first of all he had that one seizure. It was at night in his sleep, nothing happened. He didn't get hurt. It was weird. I'm glad his friends were over because we might not have known that even happened. He might have just shook it off and not even told us.

Libby Boyce:
Well, his mouth would've been.

Dr. Nath:
And that happened sometimes it's like, oh wow, what happened last night? That happens all the time.

Victor Boyce:
I've bitten my tongue just chewing stuff. But because his friend came and told us, that we knew right away and we got to see how out of it he was and his disorientation and everything. So it was serious. But when all that time went by and nothing else happened, we thought we were in the clear because of what that first doctor told us about the free seizure.

Dr. Nath:
Yes, it definitely should be said that there is a chance that there will be another one and the epilepsy diagnosis will be made. And I think it can be that it's just easier, and I say this kind of out of, I don't know, guilt, out of feeling this sometimes when I've been in a rush myself seeing patients. But it can be a lot easier to not go into depth about what could this mean if and possibly when he has a second one of these. In that moment, even though you really could have used that information.

Libby Boyce:
Well, but the other thing is, I think it also points to the fact that I think we view doctors as end-all be-all, but an ER doctor may not have all the information on neurology and epilepsy. And so what they say we're hanging on every word. But yet at the end of the day, until he got that second seizure, we weren't referred to a neurologist. So then we go to a neurologist and they give us medicine and they don't give us... Really, when I say very little information on anything and very blasÃ© about it and just a little information about the medicine. He did do, what is it?

Dr. Nath:
The EEG.

Libby Boyce:
The thing with the things... And I remember.

Dr. Nath:
The stickers on the head.

Libby Boyce:
He went to a Rams game with a big hat on.

Dr. Nath:
Oh, an ambulatory EEG.

Libby Boyce:
Yes. They did an ambulatory one. They tried to trigger a seizure and nothing showed anything. And he only ever had five seizures that we know of.

Dr. Nath:
Oh wow. From age 16 to 20.

Libby Boyce:
In a way, this is going to sound weird, but I'm going to say it anyway. If he had had more seizures, we may have had better medical attention, because if he's not having seizures, then they're not thinking that... They may think that the medicine that they gave him works. And so obviously you don't want to have more seizures. That's how you get more attention on maybe what kind of epilepsy is it, what are his triggers? Did all these things that we should have had some conversations about with the matter.

Dr. Nath:
I am curious about that because that is really striking that there was a total of five that you guys knew about. So there was the first one, there was the second one, and then he got the diagnosis and then three and four, and unfortunately five, I'm guessing correctly is when he passed.

Libby Boyce:
Correct.

Dr. Nath:
Was there a consistent trigger that you guys knew of before each of these seizures?

Victor Boyce:
They were always nocturnal. And that's one of the huge red flags for SUDEP. Boys 20 to 40 in their sleep. People who are very, it's not active, but he worked a lot so he might not have gotten a good sleep all the time, but his age group, he wants to go out with his friends. He's doing young man things.

Libby Boyce:
He wasn't thinking about it.

Victor Boyce:
And all those things are red flags for SUDEP. And so Cameron checked all the boxes, unfortunately, and as far as we know, every seizure he ever had was at night in his sleep. We didn't know it was SUDEP because I never heard of SUDEP and we still didn't hear of SUDEP until the coroner told us that's what it was. So that's when the SUDEP thing came. I didn't know it was SUDEP.

Libby Boyce:
But we knew it was a seizure. The coroner told us. And what we're learning is the coroners don't put SUDEP.

Victor Boyce:
It's under reported.

Libby Boyce:
It's under reported because it takes more work to assess that a person has passed secondary to epilepsy. And so it's easier to say it's pulmonary, it's heart, it's whatever than to say its epilepsy. So incredibly under reported and this is what we're learning. However, I work for LA County and I had some help ensuring that the coroner really reviewed this case closely.

Dr. Nath:
We'll be talking about this with our expert, but we get down to it at a cellular and molecular level sometimes and really talking about the mechanisms of SUDEP. So it's not obviously from kind of a gross inspection even of the brain, unfortunately. I'm glad that you advocated for your son even in his death just as a mom. I'm just so amazed that you did that.

Libby Boyce:
Well, and I said part of it was because the media can just twist everything and honestly, we're very transparent and the bottom line is we weren't aware of epilepsy and that it can be fatal. We weren't aware of all these things. And so we want to be very clear, our son had this medical condition and now we're going to have to attack this because he's no longer here to use his voice and we have to be in front of this and we have to do something about epilepsy because crazy as it is, he's the one person that people kind of know who died of epilepsy. And so we have to now that we have to... He would want us. That's one thing, he cared about others more than himself in so many ways, which is hard to say because it was hard to watch because he cared so much about others. He would compromise so many things. But for us, it's just our mission to do something.

Dr. Nath:
And the days prior to his passing, was there anything out of the ordinary at all?

Victor Boyce:
No.

Dr. Nath:
There wasn't.

Victor Boyce:
Nope.

Dr. Nath:
Nothing.

Victor Boyce:
Nope. It was an ordinary... I mean, he's always extraordinary with Cameron. But there was nothing unusual, nothing out of the ordinary at all.

Dr. Nath:
No fever, nothing... He wasn't sick? Nothing like that?

Victor Boyce:
We spent the night with him hours before he died.

Libby Boyce:
To be clear, he lived in his own home.

Dr. Nath:
Sure.

Victor Boyce:
We went out to dinner. We went out as a family, with his sister, his mother and myself.

Libby Boyce:
He didn't like his meal that I remember.

Victor Boyce:
He didn't like his meal, but he was... He and his sister were cracking jokes. They were teasing us. They were taking pictures, they were doing all their normal things that they do. And when we dropped him off at his house, he had just bought a house. We said, we love you. He walked to the door. He has two roommates. He walked to the door, he said, daddy's home, because that's how he clowns his friends. And that was it. That was the last thing I heard him say.

Libby Boyce:
Well, wait, we did texts at about 12 minutes.

Victor Boyce:
Oh no, I was texting him all night about the Lakers, we were texting back and forth after that, and then finally the texts stopped. It was like two in the morning or something.

Libby Boyce:
Too late for him to be up, obviously.

Dr. Nath:
Yeah, sure. Like many 20 year olds do.

Libby Boyce:
But he was upset because the Lakers didn't draft somebody or something, and he sent us a sad face on text and that was it.

Victor Boyce:
He was all about the Lakers, so it was completely normal. Was nothing weird. Nothing out of the ordinary.

Libby Boyce:
We're grateful because we didn't get together as a family for dinner all that much because everybody was so busy. I had called him normal on Friday and was like, what are you doing tonight? Hey, let's have dinner. And then he called me. Totally normal.

Victor Boyce:
I just told her the other day, I'm just so blessed to have that last night with him. Even more as excruciating as it's been, at least we had that one last time.

Dr. Nath:
You mentioned that he was out with a sister and they were cracking jokes of all kinds. I can only imagine, including at your expense. I'm wondering, and you don't have to answer this, because this is something that does come up with our patients and our families, how has your daughter been doing?

Victor Boyce:
At first, she was kind of stoic to the point where we are like, aren't you sad?

Libby Boyce:
But she's a stoic human. I can tell you it's a handful of times that I've seen her cry.

Victor Boyce:
So we worried about her a little bit, but then when she spoke, of course we had a memorial for him, when she spoke at the memorial. Oh my God, she was so eloquent and so deep, and everything she said, I'm like, okay, now I understand. She really emoted her feelings about her brother and herself, how she was dealing with it, and it was beautiful. And she's blossoming in her own way. She's always kind of lived in his shadow. She has tried really hard to be her own person and now she's there. She's fully formed human. She's doing her own thing. She's living her own life. And of course she loves and honors her brother's memory, but she's not going to let his passing drag her down as a person.

Dr. Nath:
So all of you came together to honor his legacy with the Cameron Boyce Foundation, and Cameron had his hands in so many different things. I'm just wondering, how did you figure out, oh my goodness, what is the scope of this foundation going to be? And was that paralyzing? I'm just wondering.

Libby Boyce:
Yes. I mean, it was an immediate knee-jerk reaction because he was doing so much and it was like we didn't know what we were getting into at all. We were focusing on everything but epilepsy in the very beginning.

Victor Boyce:
It wasn't about epilepsy. It was about continuing the projects that he was the most passionate about, which was the clean water thing and being non-violent, and expressing yourself through the arts.

Libby Boyce:
But he wanted to encourage because he understood he had a platform and that people looked to him for inspiration. So from his point of view, he was like... He understood that the creative arts was something that meant so much in his life that for people who are disenfranchised or people who come from hard traumatic histories, that creative arts can actually save lives. And he understood that and that's what he was harnessing.

Dr. Nath:
And so there's all of the work that he was working on, which is enough for an entire foundation and educating about epilepsy and SUDEP. What was that like, the process of starting like, okay, we need to find people, we need to create an organization? What was that like for you guys?

Libby Boyce:
We started with our tribe. We started with our family and our closest, including Cameron's publicist, and including Vic's sister, and including his best friends. And we sort of wattled our way through and we finally were able to find a director who could help us really figure out what we doing.

Victor Boyce:
Someone who knew what she was doing, because we didn't. Like I said, before Cameron had his first seizure... I mean, of course I've heard of epilepsy. I didn't know anything about epilepsy. So to be in this position is extremely... It's surreal. When we disclose what happened to him, people just bombarded us on social media. Oh my god, me too. My mom, my uncle, my brother. People started coming out of the woodwork and disclosing that they had epilepsy or they had suffered a seizure, they had a friend who had a seizure. So then we realized, wow, we really can affect some people's lives focusing on epilepsy as opposed to the other things that are still important to us. But the epilepsy component of the foundation just became the main focus after we realized how much we can make a difference if we really pushed on it. So that's the evolution of the foundation in a nutshell.

Libby Boyce:
And I've talked to... Yesterday, I was talking to a neurologist and he was saying that he uses Cameron's story in his discussions. We know that we've saved lives because of Cameron. So on one hand that's really hard, but on the other hand, it makes us feel good.

Dr. Nath:
For everyone out there listening, including physicians, but particularly families who might be in your shoes where they've just found out that their kid has epilepsy. Is there something you would like to tell those families?

Libby Boyce:
Yes. Get to a level four hospital and see an epileptologist, period. End of story. We would've done that. I don't know whether it would've saved Cameron's life. We'll never know that. But I do know that epileptologists study this on the regular and that neurologists may or may not. And so I think neurologists have basic information. I'm not taking anything away from neurologists. I really am not. If you have a choice, it is definitely worth seeking out an epileptologist and taking the time to learn about this and to keep a journal and figure out what your triggers are and all these things that we just really didn't know anything about and mapping it out.
I think just taking it seriously. Take it seriously. It doesn't have to be fatalistic here, but we have to be clear that it is life-changing just like anything else. And that adjustments need to be made, and you need to be your biggest advocate. You at the core of your medical care. Nobody else is going to do it for you. I mean, obviously the parents are the advocate for the child and for the adolescent, and you want to set them up for adulthood.

Dr. Nath:
This is a really big issue actually, that comes up in clinic. As an epileptologist that sees this, there are some teenagers that, oh, mom's taking care of it, and then, oh boy, you're going to college. Oh wow, there's so many things we need to talk about. Your meds, your sleeping habits. We need to talk about alcohol. Just being realistic and not just sweeping things under the rug. Have a really open conversation about this.

Victor Boyce:
That's correct.

Dr. Nath:
Okay, let's make a plan if you need to stay up late at night. Okay, you need to be around other people. We have these conversations now, but they need to be very frank, real conversations about reality.

Libby Boyce:
Well also I think the medical community has an obligation to have these conversations. So I highly encourage the medical community to do better. If you're doing well, great. But think about it medical community. Are you doing all that you can do to arm your patients? And that's key.

Dr. Nath:
Where can people who, are families that have epilepsy or people who are just curious, where can they find your foundation in y'all's work?

Libby Boyce:
So we are at www.TheCameronBoyceFoundation.org and there's all kinds of information on there. We have a Now What campaign, which is really encouraging, just what I said, which is you've been diagnosed, now what? And just making sure that people are armed with as many tools as possible. Our donations go primarily to epilepsy research. That's where we really want to focus our energies. We want to be on top of what new trends there are. There's lots of new monitors and wearables and things that we weren't obviously aware of prior to Cameron passing, and so we're just putting as much information on there as possible. We have a Facebook support group for people who are living with epilepsy or newly diagnosed where they can talk to others who are experiencing similar situations and have different guidance and thoughts and so on. Obviously that's critical. It's really about being your best advocate. And go to the Cameron Boyce Foundation, go to other epilepsy foundations and just be armed with information.

Dr. Nath:
Absolutely. Thank you for doing this. I mean, you have a calling to keep Cameron's voice alive and I get that because this will save lives. Absolutely.

Libby Boyce:
Thank you, Dr. Nath.

Victor Boyce:
Thank you.

Libby Boyce:
We really appreciate it. We appreciate you having us today.

Dr. Nath:
Can't get enough of the Brain and Life podcast? Keep the conversation going on social media when you follow at Brain and Life Mag or visit BrainAndLife.org. As your hosts, we would also like to hear from you on Twitter @NeuroDrCorrea and @AudreyNathMDPhD.
To learn more about sudden unexpected death in epilepsy or SUDEP, I'm catching up with epileptologist and scientist, Alica Goldman M.D., Ph.D. She's a professor of neurology at Baylor College of Medicine and also a researcher who is published extensively on epilepsy genetics and SUDEP. And on a personal note, Dr. Goldman was one of the very first attendings I worked with when I started fellowship, and she was really nice and I won't forget that. Welcome to the podcast, Dr. Goldman.

Dr. Goldman:
Thank you so much. Has been a really kind of you to introduce me and to invite me to this podcast because I think it's important that we talk about SUDEP. Because it's so important that we spread awareness that this condition exists, that it occurs, and that also there are things that we can do so that the patients and families can feel empowered and they feel that there are things they can do to minimize the risk for it.

Dr. Nath:
Absolutely. And talking with Cameron's parents, they didn't really know about this. So I think getting the word out is huge and they now run a foundation to raise awareness and raise funding for research. Just briefly to start, they talked about how Cameron had epilepsy maybe for a couple of years before he passed away and had maybe five lifetime seizures. Can you tell us a little bit about SUDEP and if the frequency of seizures is related to it or not?

Dr. Goldman:
So we know that SUDEP, the sudden death in epilepsy is epidemiologically tied very strongly to uncontrolled epilepsy and frequency of convulsive seizures. So that tends to be the strongest risk factor and therefore the strong impetus to really control seizures as best as we can. And if medications are not controlling the seizures adequately, then it's important that the physicians will discuss other avenues such as epilepsy surgery, neuromodulations, because we have different modalities that can affect not only management of the epilepsy and health with the improvement in the outcome, but also really mitigate the risk of epilepsy.

Dr. Nath:
Absolutely. And actually to that point, I wanted to bring this up because you talked about controlling epilepsy with medication and if needed, there are more options. And I wanted to bring up this point that it sounded like Cameron had had five seizures, which doesn't necessarily sound like a lot. However, our goal as epileptologists, it's not to get people down to one seizure a week or one seizure a month or one seizure a year. We want people to be seizure free. I just wanted to bring that up since you talked about control of seizures.

Dr. Goldman:
Exactly. And you have seen it on the pediatric side and I've seen it on the adult side being an adult and epileptologist that we really go after each and every seizure because each and every seizure is dangerous, not just because of SUDEP, but also it can happen at the wrong place at the wrong time. And so that's why it's important that we try to control it as best as we can. Now, unfortunately in some smaller number of patients, the sudden deaths can happen even though the epilepsy has not declared itself to be medically refractory, lasting for many years and manifesting as this intractable seizures.
And you really don't understand why that one seizure out of three or five may be actually little. And why is it that some patients may have multiple seizures, many times quite violent seizures and they will come out of it, but SUDEP may happen many years later, that part is really being under intense investigation. And over the past 15 years, and NIH has been putting more and more resources in funding really cutting edge research to understand the mechanisms and the risks that can put patients on the path towards this really tragic outcome.

Dr. Nath:
Absolutely. So there could be a multifactorial kind of mechanism or cause for SUDEP and like you're saying, why is it that some people can have hundreds of seizures before experiencing this and others might have five like Cameron did. There's likely... Now you know this better than I do, some sort of genetic component and there's other features about the seizures themselves that can predispose someone. Can you tell us a little bit about that? Are there certain red flags with seizures that patients have that tell you that they may be at higher risk?

Dr. Goldman:
When you take a step back and just look at what we know, what leads to SUDEP immediately, kind of imminently, its typically from the large MORTEMUS study. So that was a large multi-center study that where with the senior author being Dr. Philppe Ryvlin and his colleagues, they looked at patients who died due to SUDEP epilepsy monitoring units and they saw that patients would typically stop breathing before their heart would stop.

Dr. Nath:
So that's people who are in the hospital.

Dr. Goldman:
In the hospital.

Dr. Nath:
Being monitored for their seizures and passed away during the monitoring.

Dr. Goldman:
Yes. And that's where we are so vigilant that's why... Many monitoring units abroad do not have the 24-hour monitoring by the staff. And that's where this kind of tragic situations can happen. And that also speaks to the importance of having continuous monitoring where the nursing and the technologies arrived then and there and they intervene with each seizure in a timely manner, because intervention with seizures is very important in arousing patients in kind of waking up the brain from the post-seizure coma to minimize the risk of going down the path where the breathing or heart function would stop. Now, what we know from the MORTEMUS study is that the patients many times would typically stop breathing and then their heart function stops. Now as we look back, we know that it is essentially a relatively small fraction of patients that would die even though we monitor hundreds and hundreds of patients in the monitory units.
So there is something about the special vulnerabilities of these patients, why they die during the seizure. And I think a lot of mechanisms that can lead to this is coming out of the animal research because using animal models has been very, very helpful to understand the sequence of the events and also some of the kind of genetic vulnerabilities that can happen over a period of time and also some mechanical vulnerabilities. There is research that shows that during the seizure, like convulsive seizure, especially the convulsive seizure where there is this stomach contraction of the diaphragm, there may be a acid reflux from the stomach that can actually trigger spasm of our breathing tube called larynx.

Dr. Nath:
Oh wow. I didn't know that.

Dr. Goldman:
And that may actually mechanically create kind of a spasm. And because the patient is unaware immediately following the seizure, they are not able to overcome that and maybe one of the issues that may put the patient at increased this course dying due to seizure. There are other vulnerabilities that may be more related maybe to genetic makeup such as when patients carry changes in the genes that may predispose them to irregularities in their heart rhythm, and if the seizure happens and coincides with irregularity with the heart rhythm, then it can be a perfect storm. Another situation is where this mechanism called spreading the polarization where this seizure shuts down our control centers in the brain that are responsible for breathing and heart function. Therefore, patients go into a deep sleep like a coma, and because of that, they just never are able to recover because also their centers that are responsible to jumpstart breathing and the heart are not waking up.

Dr. Nath:
You bring up that there may be patients who have maybe a genetic epilepsy and a genetic condition that affects heart rhythms since there are channels like sodium channels, calcium channels that are involved both in brain function and in heart function. So that actually kind of makes sense that there could be some people out there that are set up to have both issues that can come together in a really terrible way.
You were mentioning earlier that it's really important that we have seizures under control because every seizure presents risks. And you're right about that. It can be something along the lines of if it happens while you're cooking on a stove, and there's many epilepsy patients who have burns, it's a really common cause of burns, and if you're near water and things like that that we don't want anyone to drown. So every seizure is really important. Kind of talk us through how we think through treatment. So we start with one medication and then we have to think about if we're on a good level of that medication or a good dose and then we could add a second medication, tell us what happens if someone is on two seizure medications and still having seizures. Talk us through the thought process after that.

Dr. Goldman:
In my practice, and I think in what you have done also is when you are treating your patients, I mean we always look for using the medication that we can really use to the effective dose, which means the dose that we really see an impact on seizures. And there is really minimum or no side effects because many times you may have a good medication but patient does not tolerate it. That is not necessarily a medication failure because it's not effective, but it's just a medication failure because of the side effects. But let's think, as you pointed out that we use one or two medications a day, they're done in proper doses and they're still not working. This is really a time to counsel the patient. If you haven't had done an evaluation in the epilepsy monitoring unit for a detailed characterization of your epilepsy and your seizures, this is the time to really do an in-depth evaluation of the epilepsy.

Dr. Nath:
And for some people, they may need to go to another city to get an epilepsy monitoring unit or EMU evaluation. That's right.

Dr. Goldman:
Yeah, that's exactly right. They need to discuss these with their physicians, are we treating the right thing? Is this epilepsy? What kind of seizures are we treating? Are these medications not effective because they are not just the perfect match for my type of seizures? So we really need to then ask, can I get an in-depth evaluation so that we fully understand my epilepsy type? And that way we also understand what are the treatment options because as we mentioned earlier, outside of medications, there are then other treatment options. Maybe we won't go into the surgical options right off the bat, but it's important that the patients understand that there are other options for them out there as they go down the medication trials.

Dr. Nath:
Even compared to 20 years ago, there's many more options. Well, there's more medications for sure. So we certainly don't want to put someone on a medication that makes them miserable from side effects, and sometimes people are a little shy about talking about that, and a year or two into it was like, oh, I've actually been feeling really terrible. So we don't want anyone to go through that. There's many medications and now briefly, there are surgical options. If someone is what we call medically refractory or continuing to have seizures while on good doses of two medicines, that there are surgical options, including devices that can be implanted and some people out there may be candidates for a resection where part of the brain is removed. Not everyone goes through that, but these are all things that we evaluate for our patients, so I'm really glad you bring that up there. There's hope for many people.

Dr. Goldman:
I think it's important to note also that many times people may not be ready to consider receptive surgery, but we have other options such as minimally invasive level modulation like vagus nerve stimulation, and even that... Even though it's not a great therapy for epilepsy, it is more considered a helper to your anti-seizure medication therapy. There is some evidence that it may be reducing risk of SUDEP. So it is important that patients are advocating for proper diagnosis and then also exploring the treatment options. So it is kind of an ongoing dialogue until they come to a good place where the seizures are controlled and the risk for adverse outcomes is also reduced or eliminated. It is ongoing process and it should not stop just because the seizures have not controlled today because the new developments in drugs and devices is going forward. So this is something that needs to be revisited even if there was nothing to be done 2, 3, 5 years ago.

Dr. Nath:
That's true.

Dr. Goldman:
Today it's a different situation.

Dr. Nath:
Many patients ask us where they can get information because this can all be really overwhelming. Where do you suggest patients look for good high quality information online or in books?

Dr. Goldman:
So I usually refer patients to Epilepsy Foundation as a patient friendly advocacy platform. I also refer them to American Academy of Neurology and to American Epilepsy Society as platforms that actually are doing very nice work in making accessible the medical advancement to the patients.

Dr. Nath:
I see. Absolutely. Just like with everything else in medicine, we have some really exciting new diagnostics and treatments that not everyone necessarily has access to, so I think that's really important to get the information out there.

Dr. Goldman:
Yes, I encourage my patients to access medical literature and then to bring it back to the clinic and tell them, there is probably a lot that you will not understand, but it is something for us to discuss in the clinic. It's a reputable source, and that's where we can have a conversation about your options.

Dr. Nath:
Absolutely. People bring in papers from PubMed.

Dr. Goldman:
Exactly.

Dr. Nath:
We fully expect it and we're happy to take a look, for sure.

Dr. Goldman:
Yes.

Dr. Nath:
Well, thank you so much for joining us and for continuing also to teach medical students and residents and fellows like myself all about epilepsy and how we can improve our patients' lives.

Dr. Goldman:
Thank you, Audrey. It has been truly a pleasure and nice of you to invite me to talk to you today.

Dr. Correa:
Thank you again for joining us on the Brain & Life podcast. Follow and subscribe to this podcast so that you don't miss our weekly episodes. You can also sign up to receive the Brain & Life Magazine for free at BrainAndLife.org.

Dr. Nath:
Also, for each episode, you can find out how to connect with us and our guests along with great resources in our show notes. You can also reach out by email at blpodcast@brainandlife.org, and you can call in anytime and record a question at 612-928-6206.

Dr. Correa:
You can also follow the Brain & Life Magazine, Audrey and me on any of your preferred social media channels.

Dr. Nath:
A special thanks to the Brain & Life team, including...

Dr. Correa:
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Dr. Correa:
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Dr. Nath:
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Dr. Correa:
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Dr. Nath:
And Audrey Nath, beaming in from Texas and on Twitter @AudreyNathMDPhD

Dr. Correa:
Thank you to our community members that trust us with their health and everyone with neurologic conditions. We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Nath:
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