JenVon Cherry on Educating Communities of Color About Epilepsy

Episode Transcript

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

Dr. Peters:
And I am Dr. Katy Peters. And this is the Brain & Life Podcast.

Dr. Correa:
Welcome back to the Brain & Life Podcast. Katy, how was your T-gives or Thanksgiving?

Dr. Peters:
Well, I am so thankful with an emphasis on thanks, but also full. It was delicious. The turkey, it was initially frozen, and so we have tackled trying to de-thaw with three cats sort of circling the kitchen for that frozen bird, because the cats also want dinner. How was your Thanksgiving? I know you do that great riff on salsa verde to spice things up.

Dr. Correa:
Oh, I mean, we ate it in multiple different ways. I enjoyed even as just a snack with chips. But yeah, it was a nice bright accompaniment to the table. What about you? Was it a Turkey risotto year?

Dr. Peters:
Oh yes, absolutely. With my little turkey cracklings that I use with the skin, and I mean, you eat almost like a little bird's nest. Not only is it tasty, it's very pleasing to the eye. So yes, all renditions, turkey pie, turkey leek pie, turkey sandwiches, and I think I'm also going to have a little bit leftover, turkey enchiladas.

Dr. Correa:
Nice. Okay. Well, I've been definitely switching to a much more veggie full series of meals to help lighten things up, taking a few extra walks, enjoy the weather and stretch out after that cozy family couch time. So this week, we are coming back with a community member who lives with epilepsy, and has been advocating alongside the Epilepsy Foundation in South Carolina for greater equity, and awareness, and access to care for those living with epilepsy. We'll hear her story about how she started to have seizures at a very young age after a traumatic event at school. And then we'll talk to Dr. Latanya Agurs, a pediatric neurologist and epilepsy specialist from Los Angeles.

Dr. Peters:
And after you listen to the podcast, make sure to check out the show notes for a link to our listener survey. The link is brainandlife.org/survey to participate, and get a chance to enter a drawing for one of those five $100 Amazon gift cards.

Dr. Correa:
Welcome back to the Brain & Life podcast. So this week we come back to a condition and an initiative that has been very close to my heart. Many of you know I work as an epileptologist, also as a general neurologist. I've mentioned before that my own family and my mother live with epilepsy. And this week we're here to hear the story, and talk about the resources and more about living with epilepsy with JenVon Cherry. She is an epilepsy advocate who founded an organization Epitome of Epilepsy in 2020, that's dedicated to raising awareness and the support for individuals affected by epilepsy, particularly in communities of color. After she herself was diagnosed as a child, Cherry has become a passionate voice for others with the condition, and serves also as a local board member of the Epilepsy Foundation Chapter in South Carolina. JenVon, thank you so much for taking the time to join us, and to share your perspective.

JenVon Cherry:
Thank you. I'm so honored that I even get this opportunity, so I just thank you again for allowing me to come on your podcast and share my story.

Dr. Correa:
Now, I just want to know, help us paint the picture of who is JenVon, beyond just the epilepsy and other diagnoses, but really who are you?

JenVon Cherry:
JenVon is a HBCU graduate. She is sassy, she's confident, she is determined, she is complicated sometimes. But she all comes together as a God-fearing, unpredictable or predictable loving and caring human being.

Dr. Correa:
You know, I didn't catch when I was doing my background, and I didn't catch that you graduated from an HBCU. Where'd you graduate from?

JenVon Cherry:
Yeah, I graduated from Benedict College in Columbia, South Carolina. And I cheered for four years, and it was the best experience of my life. I've met my lifelong friends in college, and we are still tight as thieves 20 years later.

Dr. Correa:
That's wonderful, yeah. I trained at medical school at Howard, so the communities are close to my heart.

JenVon Cherry:
Yes, I love it.

Dr. Correa:
Now, you've shared with us, and for those of our listeners who haven't had a chance to check it out, in spring of 2024, JenVon was also interviewed for the Brain & Life magazine and share some of her story, so we wanted to grown on that. So, you've shared with us that you were diagnosed with epilepsy at six years old following an accident. Can you tell us a little bit more about what happened, and what you recall about that early experience for you and your family?

JenVon Cherry:
So, I was definitely young. I don't think anyone, any parent can imagine what my mom and my father went through at that time. It was scary being six in a classroom with my peers. And in a blink of an eye, I was literally stabbed with a pencil. And I was rushed to the restroom by my teacher at the time, and I literally pulled the pencil out of my eye myself. I went to the nurse's office, they put gauze on my eye and I went back to class. This was in 1989 though, so no one called my parents. I know if this happened today, school would probably... I'm so honest.
The school would probably be named after me, but at that time, no one called my parents. So when I got off the bus, my mom was looking at me like what happened? And all I could tell her was... I don't remember what I told her. She always tells me that, "Only thing you said was somebody hurt you at school." She called the school and all she got was, "There was a incident reported," but no one really told her or my father that I was stabbed with a pencil. So I go to the emergency room, I get like 10 to 8 stitches. But two weeks later was the first time I actually had my first grand mal seizure.

Dr. Correa:
Oh my, I mean, it's one thing, we've all kind of cut ourselves in our hand. You might even imagine a pen or pencil kind of breaking the skin on your arm, or hand or something like that, but in the eye.

JenVon Cherry:
Yes. And it's so weird it's-

Dr. Correa:
And then to not share with your-

JenVon Cherry:
... to not share.

Dr. Correa:
Oh my God.

JenVon Cherry:
So weird, it's so weird. Even when I tell the story to this day, it still gives me chills to know that that actually happened, and how times have changed so much that when anything happens, you get a text message from a teacher principal. But at that time, that's just not where we were, and no one let my parents know. So yeah, that that's exactly how it played out.

Dr. Correa:
Well, thankfully, at least I hope in many places, we are farther along in school and child safety.

JenVon Cherry:
Yes.

Dr. Correa:
Now, you said it was a little bit later by several days that you had your first seizure with bilateral movements. Where were you at that time, and what do you remember about that experience?

JenVon Cherry:
This is from my mom, because I don't remember much. Once the incident happened it was two weeks later. And we were at home, stationed in Washington DC on the Air Force base. And I can't recall where my dad was, but my brother and I were home with my mom while she was cleaning she said. And I told her that I was tired, I was sleepy and I had a headache. First she told me to go upstairs and she said something told her to let me sleep on the couch. She said by the time she'd gotten done sweeping the kitchen, she heard something and it was me, not choking, but I was kind of, my eyes were rolled back in my head. I was shaking and she was panicking. She said I had never seen anything like that in my life. She called 911, and I was rushed to the hospital. That's when it was discovered that the pencil lead that I was stabbed with was broken, lodged itself in the brain, and that caused me to begin my journey with epilepsy.

Dr. Correa:
Wow. And your family, you said your mother had never really seen someone have an event or a crisis like that. Did your family have any previous experience or exposure with anyone having had seizures or epilepsy?

JenVon Cherry:
I was the first. So, my mom says this all the time, she said, "I felt like I was a deer in headlights watching you have a seizure. It was uncontrollable. I couldn't do anything to help. And I knew what a seizure looked like, but having someone, my child experience this, I didn't know what to do." She always says, "I just did not know what to do. But once you got diagnosed, I had to do my research. I had to figure out what type of seizures you were having from your doctors, and what to do, how to help you." So no, one in my family really knew what epilepsy was until I was diagnosed.

Dr. Correa:
Yeah. And for our listeners, even though epilepsy is not itself a rare condition, one in 26 people may have a seizure or be diagnosed with epilepsy in their lifetime.

JenVon Cherry:
Absolutely.

Dr. Correa:
There are often situations where yes, there is someone and maybe the first one in their family to be aware of someone having seizures. Unfortunately, sometimes also we're just not as aware of the people that are around us that may have a risk for seizure or epilepsy. Now, as you described, that was your experience of your seizure. Again, for our listeners, we would just like to highlight that there are many different types of seizures. What we see on TV, and what we see in various situations, may or may not be similar to what someone's actual seizure looks like. And sometimes those first instances like what your mother experienced, it can be so hard to absorb, and really see all the unique things that may occur for a person and may help in their future diagnosis. So really paying attention-

JenVon Cherry:
Absolutely.

Dr. Correa:
... to the type of symptoms that they're having. And if possible, considering getting a video, sometimes that can really help the discussion with your doctors.

JenVon Cherry:
My mom was really good at taking notes. She would write down, if she noticed something that was off, she would write it down. If I said I had a headache, or my vision was blurred, or I was acting different, a little too quiet than normal, the next appointment she would have this whole list. "Well, I noticed this with her. Is it because of the medication?" She did a really good job. She really did. And being I was so young, I had all my hair cut off due to the incident. And I can remember going back to school with this little hair fro and just trying to figure out, "What does this look like?" Because I'm young, getting used to taking medications every day, and was definitely out of my norm at six years old.

Dr. Correa:
Yeah. I imagine out of the norm of anything your parents would've been expecting for their six year old. So, with the stitches and everything you had to get, they ended up having to cut down your hair.

JenVon Cherry:
Yeah. When I woke up, I had a bandage on my head, and full of like white bandage. And once the scar... I still kind of have the scar. It goes from here... Not kind of, I do. From here to here, where they opened me up, and all my hair was gone. I think my dad or my mom still have the braids that they cut out to this day.

Dr. Correa:
And that was all even before you identified that you had the seizures?

JenVon Cherry:
This was after. So once I got rushed to the hospital, once I had the seizure at my mom's house.

Dr. Correa:
Oh, okay.

JenVon Cherry:
We got to the hospital, they did testing, and that's when they saw the pencil lead in my brain. They cut me open as soon as it was found out after they told my parents, that I had to have emergency surgery. And from what my mom said, the surgery lasted for about four or five hours.

Dr. Correa:
And before you ended up having the seizure, and then later the surgery, were you already having issues with your vision that you recall? Have you had issues with vision change or vision loss in that eye?

JenVon Cherry:
No, I haven't. I mean, dealing with epilepsy of course you get blurred vision and stuff like that. But I still have my eye. I've never had any issues with it besides that one accident. But outside of that, no.

Dr. Correa:
Yeah. And for our listeners, this is kind of one of the amazing aspects about the eyeball, and what we call the socket where your eyeball goes in. Your eyeball is actually very flexible and it moves around. So oftentimes people can have a very significant injury to their eye, and you may not notice or see if they don't have all the swelling or the eyeball itself wasn't damaged. So it is important when someone has any foreign object that injures into the eye, they really get checked out.

JenVon Cherry:
Absolutely.

Dr. Correa:
And I'm glad you got to what you needed. Now, it didn't end up being so simple as you had one seizure, they found the lead and fragments from the pencil, got surgery all cleaned up, and you're back to just developing as a regular old six year old, right?

JenVon Cherry:
Regular old six year old. I was in the hospital for four months.

Dr. Correa:
Oh my. Wow.

JenVon Cherry:
So that to me... You know, that's traumatic. I'm in the hospital every single day. I still say this, I felt as I was a Guinea pig. I can recall doctors coming in, giving me needles, new medication, old medication, more medication. And the procedures, the tests, that went on for a while, for a really long time. After the hospital visit is when I really had to learn. And it's weird because I was six. But I can recall sitting with my mother and a doctor, and him going through all my medications, and what time I'm supposed to take my medication. And I have this dazed look on my face, and my mom is looking at me like, "Are you okay?" And I just shook my head. But I just remember being confused.

Dr. Correa:
Mm-hmm. As you should have been. I mean, that's a lot of very adult things to be handling.

JenVon Cherry:
Yes.

Dr. Correa:
And did you end up having other seizures since they had been making adjustments, with all this? Did you end up having other seizures in the hospital?

JenVon Cherry:
Yes.

Dr. Correa:
Or, what was your journey with seizures and epilepsy after the hospital?

JenVon Cherry:
After the hospital, I feel like seizures change. As you get to teenage, adulthood, your seizure patterns change. So I went from having tonic clonic seizures to staring seizures. I would just stare off into space. I went from having no seizures at all, to having two to three seizures a month. And I think college and high school was definitely the hardest time for me, dealing with my epilepsy and college was difficult. Being a new student, studying, I cheered. And here comes epilepsy like yeah, we are not about to let you do anything of that. We are just going to keep bringing it down with seizure after seizure. And being a student, it was difficult, because some professors didn't know how to teach me. I learned differently from my peers. So, me trying to figure out this new process just didn't look the same, and it was a difficult journey.

Dr. Correa:
And you said before, and you've mentioned that you cheered in college. And so, you were having and managing your epilepsy, managing the medicines, all these things that sometimes can be a bit of a challenge for a college student.

JenVon Cherry:
Absolutely.

Dr. Correa:
Because it's not what they want to be focusing on.

JenVon Cherry:
No.

Dr. Correa:
And yet, you were still able to participate and be part of the cheer squad. How did you manage and balance when you were-

JenVon Cherry:
I'm going to be honest. I had the girls that I talk about, my friends, they were a good group of girls who really supported me. I don't drive. Once we got to off campus housing, they took me to class. I had one of my first seizures, not my first, but one of my seizures at a cheerleading competition. And I had not expressed... The only people who knew I had seizures was my cheerleading coach at the time, I didn't tell my peers. So that was the first time that they saw me have a seizure. And it probably changed the dynamic of all of our relationships, because it was just a life lesson.
And after that, my cheerleading coach did a really good job of having a seizure 1010 for me to let people know what to do just in case you are around, and she does have a seizure. But I feel like, I didn't graduate in the normal four years because of my epilepsy. But I was able to graduate, but it wasn't easy. But did I manage? Yes. I learned how to notice my triggers and my auras. I didn't do certain things that everyone else did just because I knew my journey with epilepsy could cause me to have seizures. So did I manage it? Yes, but it was not easy.

Dr. Correa:
Mm-hmm. But a good reminder that, although it may take some adjustment of the path, that our community members, family members with epilepsy can still participate in sports and activities. It's important to have people that are aware and understand the situation. But they too can take a very successful and maybe sometimes alternate paths.

JenVon Cherry:
Absolutely.

Dr. Correa:
So for you, what was the driving force between putting the idea of creating a nonprofit organization? You founded Epitome of Epilepsy in 2020, but what led to that?

JenVon Cherry:
I have volunteered for a lot of organizations, and Epilepsy Foundation was one of them. And when I moved from Charleston to Atlanta for work, I met an awesome person. And volunteering showed me that I just didn't see myself. I didn't see a lot of people that looked like me sharing their story, talking about epilepsy, giving resources. And I wanted to have a nonprofit organization, where I was helping my community spread awareness. I mentioned it to my friends, I mentioned it to my family, and everybody was just like, "JenVon, this is totally you. You can talk about epilepsy with your right, left back hand."
So, I went out of on a leaf, and I started Epitome of Epilepsy in 2020. And I knew I wanted my mission to be to inspire, advocate, and educate within my own community. And I think basically that's how we started. I wanted to have walks, support group meetings, panel discussions for people to come and learn more about epilepsy. But also the community, you meet so many people who have different types of seizures, but they all come together, because our journeys are the same. And that's what I wanted.

Dr. Correa:
And so you mentioned these focuses of education, inspiration and advocacy. But what have been some of the key initiatives or programs that your organization has been working on to meet these goals?

JenVon Cherry:
So, we had our first aid seizure training last month. And that is an initiative that we started because we thought that it was important to spread first aid seizure safety in schools. And our second initiative is health fairs within HBCUs. We have our first health as Wealth Health fair with Benedict College where I graduated next month. And next year we'll be transitioning to another HBCU, Claflin University, to also start implementing health fairs surrounding epilepsy and chronic illnesses in the Black and brown community.

Dr. Correa:
That's great. I mean, we need outreach in every community, and more people need an understanding about seizures and epilepsy. There's been a lot of initiatives to have greater understanding of seizure first aid in schools. But it's something that I think everyone in our community can learn more about.

JenVon Cherry:
Absolutely.

Dr. Correa:
So, in the Brain & Life magazine article, you mentioned that you've also noticed some decline in cognitive function, and that led to a decision to go on disability. Can you talk about the emotional and the practical challenges that you've navigated with running the nonprofit and living with epilepsy?

JenVon Cherry:
I noticed that my cognitive issues had declined. My memory had declined. You can't tell, but sometimes even in my speech, I would be in meetings and my boss or whomever would be talking to me about a meeting we had last week, and I couldn't recall anything. Or I couldn't figure out the words to say quick enough in a meeting. And I brought this to one doctor's attention, and I felt like it wasn't heard. She just wanted to kind of give me more medicine, and that's not what I wanted. I wanted some tests done. I found a new doctor and a doctor that I was familiar with, that I saw early in life in my teenage years. And as soon as my first appointment with him, I let him know what I thought. Within a couple of days he had some tests for me. I had to go get some tests done and my intuition was correct.
My cognitive issues had declined, my memory had declined. And it wasn't so much the seizures, I've had epilepsy for 35 years. So it was just the longevity of me dealing with the chronic illness, and what it was doing to my brain. The emotional part was difficult, to let go of my job. Being someone that does have epilepsy working was a sign of independence for me. I enjoyed going to work and talking to my peers. I felt that sense of community going to work. And as soon as I felt like I saw the problems, my gut told me that you were going to have to stop working. But when my doctor said it, it was like, "Okay, you have no choice basically" I let my job know, and I built on Epitome of Epilepsy in that time. Because I knew that I wanted to do something else, and this something else was my nonprofit organization. It was not easy. I still have days where, "Man, I wish work. I wish I can go in somebody's office," but, I made my own office.

Dr. Correa:
Well, I love the ingenuity that you've brought into it, and that you're putting it actually in a way to give back and help others. And for our listeners, if you recall, or if you hadn't had a chance to catch it, we've had a few other episodes about living with epilepsy on the Brain & Life Podcast. In those, we started some of the discussion of some of the basics and key things to know and understand about epilepsy. Please go back and listen to those. And after our discussion with JenVon, we'll continue our discussion with a medical expert to talk about a little bit more about the different types of seizures, and understanding how there can be cognitive and other emotional impacts from lots of different things. Not just individual seizures or living with epilepsy, but the medicines and other things that change with time.

JenVon Cherry:
Absolutely. That's well said.

Dr. Correa:
Well, thank you. Now, you've accomplished significant things with your organization, and through your efforts also working along with the Epilepsy Foundation. But what do these accomplishments mean to you, and how do they motivate you to continue working?

JenVon Cherry:
They motivate me, because I see that little by little, my story is being told. Little by little I'm helping others who are living with epilepsy. The accomplishments mean a lot. But, it lets me know that people see me, "Hey, Epitome of Epilepsy." But it also warms my heart that the work that I'm doing in the epilepsy community is being noticed. But, I think the most rewarding thing for me is when I meet others who are living with the same chronic illness that I call bossy. And sometimes she just comes out of nowhere, and she has an attitude. And I meet other people who are dealing with the same thing. And it can be on social media, "Hey, you're my inspiration. I look at your content. I love the fact that you can make light. You're still enjoying life." Those are the things that bring my little heart joy.

Dr. Correa:
And I know that you're aware of, in connecting with different community members living with epilepsy, that people with epilepsy managing their medicines, all the different challenges, can each have a lot of unmet social needs. Whether those are financial, or housing issues, issues with their job. What are some that you feel like, as you've connected with other members of the community, that just aren't getting enough attention?

JenVon Cherry:
I hear a lot, and I'm going to speak for myself too when I say this. It's difficult sometimes for us to get medication. Medication is extremely expensive. And even trying to get to a doctor's visit, if you don't drive, if you don't have enough money for an Uber, if you don't have enough money to get on the bus, or a bus card, transportation can be scarce sometimes. If you don't have insurance, how do you go see your doctor? And that's my battle right now, not working, and not having any insurance, and having to pay out of pocket for a lot of stuff.

Dr. Correa:
And for those that are listening that live with epilepsy, or know someone living with epilepsy, are there resources in the community that you've helped or found helpful? And getting transportation, or addressing some of the needs when they come up?

JenVon Cherry:
The Epilepsy Foundation does a really good job of having resources devoted for people in the epilepsy community. You can go there and get a coupon for medication. You can go there and speak to someone about a voucher for getting transportation. I automatically revert people to the Epilepsy Foundation, because I know that that's their specialty. They're going to make sure that you get what you need, whether that's medication, housing, a doctor visit, they really do. They're the source of a lot of things.

Dr. Correa:
Now, let's reach out and support that person who's newly diagnosed with epilepsy, or maybe the parent, like your mother that's just sitting there in shock about, "What is going on?" Particularly for those from communities also who are marginalized. What would you tell them about this new diagnosis, and awareness about the stigma and misinformation that may be out there?

JenVon Cherry:
Funny, I've literally just had this conversation with someone. So, I normally say that it's almost like you have a canvas, and the canvas is blank. It is up to you to figure out what your canvas and what your story is going to look like. It won't be easy. But on the other side of the door, the rainbow, there can be life. There can be manageable seizure control, manageable medication, surgeries, whatever that journey looks like for you. Only thing I would say is, "Take it day by day. Life is not easy. Living with a chronic illness is not easy." But I'm learning to know my auras, my triggers. Being young, sometimes you're trying to figure out life and all these different things. But learning your triggers, your auras, are probably one of the best things that you can do. Because you can take your medication, "Hey, I don't feel too well." So, just learning yourself when this chronic illness error having epilepsy, I always say, "Just take it one day at a time and know that it will get easier."

Dr. Correa:
Wow. Now, make sure to check the show notes, and catch JenVon's social media handle, so that you can follow and check out the resources from Epitome of Epilepsy. We'll also link to the Epilepsy Foundation. And check out some of the past episodes that we have had to cover the content related to epilepsy and important articles. But, JenVon, thank you so much for speaking your word, your truth and perspective, and really sharing and helping us reach different communities.

JenVon Cherry:
I thank you so much. This has been wonderful. Thank you so much for the opportunity.

Dr. Correa:
Now stay tuned for a brief break, and then we'll be back with our medical expert to talk more about living with epilepsy.

Dr. Peters:
After you listen to the podcast, make sure to check out the show notes for a link to our listener survey. The link is brainandlife.org/survey to participate, and get a chance to enter a drawing for one of those five $100 Amazon gift cards.

Dr. Correa:
Welcome back. And, we had that great discussion with JenVon just, now hearing about her story. And I'm now excited to be joined by a friend, a colleague and former Army neurologist Dr. Latanya Agurs. She's an assistant professor of neurology, and serving as a pediatric neurologist, and the residency program director at Children's Hospital in Los Angeles. Also affiliated with the Keck School of Medicine. Thank you so much, Latanya, for joining us here today.

Dr. Agurs:
Thank you for having me.

Dr. Correa:
So, before we get into some of JenVon's story, and talking about children and epilepsy, I just wanted to know from your perspective, what brought you to caring for children with neurologic disorders instead of the big people?

Dr. Agurs:
Well, I'm one of those doctors who always wanted to take care of kids, even since I was a little kid myself. And my passion for neurology really developed when I was in college, and progressed from there that, the marriage of both neurology and pediatrics could be seen in child neurology. And so that's what led me to treating kids instead of treating adults.

Dr. Correa:
So, we heard from JenVon, this wild story of how as a child in school, got injured by another child when they poked her with a pencil in her eye. Somehow the teachers thought that she was okay, didn't end up even saying anything to her parents until they later on noticed the issues when she came home. And then later, two weeks afterwards she had a seizure, which finally triggered more evaluation in the hospital. And then when she was still having seizures, they suspected there might be a piece of the pencil still behind the eye. And they did surgery and found that a piece of the pencil had actually made its way towards the brain. I mean that itself is a very odd and unique story, hopefully not something you see very common in kids. But, how common do you see children coming in with injuries that have occurred, either out on the playground or otherwise, that now are presenting with neurologic conditions?

Dr. Agurs:
It's not very often, but post-traumatic post-injury seizures and epilepsy do definitely happen. JenVon presented relatively close in proximity to her injury. It was only a few weeks. I have children who will fall or get seriously injured and have a traumatic injury. They'll take weeks, months, or years before they present with their first seizure. And so, quite possibly JenVon having that foreign body left in her brain, pushed her to have seizures sooner rather than later, based on the timing of her injury to when she presented with her seizures.

Dr. Correa:
And let's think back to a trauma potentially to the eye, and when it's an emergency. Does that story, anything that's puncturing around the eye, does that sound like a reason that a child would have to be not only her parents would be contacted, but maybe actually getting evaluation more urgently than what she experienced?

Dr. Agurs:
Yes. We all know that life, limb, and eyesight are the three cardinal things when it comes to being a human. And trauma to the eye, it can be eyesight ending thing. And so ideally, I can't go back in time, I would've notified the parents immediately and said, "Hey, there's a pencil to the eye. You need to get her evaluated to make sure nothing is happening inside there." I don't wholly expect that it would be a pencil that went into her brain from that experience. But the eye itself is part of the three cardinal things you have to make sure you treat almost immediately.

Dr. Correa:
And, let's go to the extended portion from there is, so she got the surgery, thankfully they got out the foreign body. She's been on a anti-seizure treatment for epilepsy and some continued seizures throughout the rest of life, that sometimes we would describe as intractable or epilepsy that's not responding well to the medications. How often do we see that with children?

Dr. Agurs:
In children, I mean, with anybody who has epilepsy in general, about 33%, about a third of all people who have epilepsy, you're going to have drug resistant epilepsy. It's going to be intractable. For children who have post-traumatic epilepsy similar to that, it's the same sort of percentage, that 33%, that third of patients who have seizures that continue on, despite having surgery removed with the foreign object. That part of the brain's been injured and now it maybe doesn't function quite the way it's supposed to. And so now it's going to have misfiring if you want to use a basic term for it, and have seizures produce. And medications may not be able to control that. It might be a person where ideally surgically removal of that tissue, not just a foreign body would be the most ideal thing for her.

Dr. Correa:
Among children, and some people even adults with epilepsy, there can be other syndromes that might be the presentation of the epilepsy. How likely is it after an injury that, that injury may be unmasking other risk factors? Or, when do those children tend to present with the various syndromes or genetic causes?

Dr. Agurs:
So, for self-limited epilepsy that starts in that early childhood elementary school age, they outgrow that by puberty, the pubertal hormonal developmental type thing. Once you're 16 at the latest maybe 18, those epilepsy and those types of seizures go away. So, a post-traumatic injury, unmasking a self-limited epilepsy is very unlikely. Other genetic predispositions, people who have some of the genetic disorders that may predispose you to maybe having a focal epilepsy that maybe takes a, what they call, the two-hit hypothesis. I can't truly say here or there, that could have been part of the post-traumatic epilepsy. But it definitely could possibly be a mechanism of epileptogenesis and mechanism of action for children.

Dr. Correa:
Yeah. And we both know, and we've seen people with genetic forms of epilepsy that can come at any age, whether they're infants, to even much later an adult stage.

Dr. Agurs:
I agree. There's specific syndromes that run in some families. I could think of one genetic syndrome, DEPDC5, where you can have that gene in every family member. And the penetrance or the expression of that gene varies from family member to family member. Some have epilepsy, some don't. Some have dysplasia of their brain in some areas and some don't. But it runs in families and it's also a dominant inheritance. So, a case like that where you have the gene, but maybe you weren't going to have seizures and you just needed something to push you over the edge, something like that could have happened in a post-traumatic type epilepsy for a child, or even a teenager for sure.

Dr. Correa:
Now, people who have or know a child who has uncontrolled seizures, or seizures that aren't well controlled by medications, or a parent in that situation may hear about sudden unexpected death in epilepsy or SUDEP. What are the situations in which someone needs to be a little bit more aware and concerned with that and in that context?

Dr. Agurs:
As an epileptologist, I encourage every child neurologist, every neurologist to use the word SUDEP early and often. They shouldn't wait until they see me in intractable epilepsy clinic to hear it for the first time. You can have SUDEP sudden unexpected death due to epilepsy early on in your course, your first or second seizure can result in SUDEP. And families invariably always say, "I wish I had known, I wish I had knew this was a possibility." And the big seizures where it's your whole body stiffening, your whole body shaking are the highest risk for SUDEP.
But other seizures, even some smaller ones, that then can progress to secondary shaking, those also can result in SUDEP. Some of the self-limited epilepsy syndromes I talked about earlier, we've had children who have had SUDEP with those type of seizures. And so, not knowing and not knowing that maybe this is why I treat my seizures for my child, is what really gets parents down. And so, I always encourage neurologists and epileptologists to talk about SUDEP early and often, even if you think, "Oh, this isn't a type that will cause SUDEP," you never know what can happen.

Dr. Correa:
Yeah. And for our listeners, we had a previous episode where we interviewed Cameron Boyce's parents, and discussed with a medical expert in that episode about SUDEP. So please, if you're interested in more information about that, go back and check out that. Now, JenVon herself had shared that she's had several challenges throughout her life with mood symptoms in relation to her epilepsy, maybe medications. Are there certain medications that are of concern for changing mood and behavior in children? Let's start there.

Dr. Agurs:
Well, as you know, that almost all anti-seizure medications have a black box warning about depression and suicidality. Where the medications we give aren't exacting to say, "Hey, only treat the seizures." They're treating the brain. And the brain controls a lot of your mood and your expression. There are definitely medications that we use quite often that tend to have a higher percentage of mood disturbances, mood disorders compared to some other ones. One of the most common medications that we give for almost every type of seizure, we always kind of counsel say, "Hey, they might be a little more grumpy, they might be a little more irritable if they're younger." But I've seen that medication cause frank psychosis, profound depression in some young kids and some early adolescent type children.

Dr. Correa:
So what's important then in determining with a family or parents, which might be the symptoms to watch for, and in picking medicines? What should parents share, and what kind of questions do you ask to help that?

Dr. Agurs:
I typically get into a lot of the neurodevelopmental abilities of that child. So when my children are pretty severe autistic, or they have other already pre-existing mood disorders, I might take a pause in deciding what I decide to give them and prescribe to them. Especially if it's their first or second medication. I have over 40 medications to choose from. And so, can I do something that maybe is gentler for them, so that might not provoke those secondary symptoms when I come to choosing medications? And so, being candid and being honest about what your child is like, and what they experience, is what I advise parents to do. Some cultures and some communities want to downplay any mental health type things, and that doesn't do anything to help me as a neurologist help your child.

Dr. Correa:
And then, what about the effects of the seizure itself, and their condition and epilepsy over time? What kinds of effects have you seen on individuals after a seizure, or over time with their epilepsy?

Dr. Agurs:
With people who have intractable, all the time, clonic seizures, a lot of them have that coexisting depression and anxiety. Depression because, "I can't control this. It's happening spontaneously. Why me?" And anxiety of, "Is one going to happen? Am I going to be embarrassed in school? Am I going to get hurt at work?" The social stigma of epilepsy is, it's out there. And so, depression and anxiety, they are very commonly seen in the epilepsy population. Directly post-seizure you can have impairment of your awareness, impairment of your focus. It can affect your memory, which then affects your secondary education, and learning, and at work as well. And so, a lot of those things can spiral together and cause worsening depression, worsening anxiety, or bring on those two things that they weren't an issue before they had epilepsy.

Dr. Correa:
And JenVon shared how for herself being part of support groups and the community, both through the Epilepsy Foundation and an organization, she started Epitome of Epilepsy, how those things are helpful. How do you help parents navigating what might work for them? And do kids get involved in some of these community building and support group activities?

Dr. Agurs:
They definitely do. The Epilepsy Foundation of America, as you mentioned, they're worldwide. And we have a really great organization here in the Los Angeles area. But I always encourage parents to get on the epilepsy.com website to engage in these work groups. Here in California we have a mandate to actually have mental health embedded into epilepsy groups. And so, we have a social worker here who provides an outlet for our patients, should they want to have some counseling over a short-term frame. We do a lot of encouraging from that standpoint, and we get the feedback or the buy-in from the young kids. We get it from teenagers. She provides play therapy up to other just listening ear. And it ranges from anxiety, depression, PTSD related to their seizures as well. And so, I always encourage beyond formal mental health testing, "Find a support group, find your village to support you, to help you feel like you're not alone. And that's somebody who understands you."

Dr. Correa:
And for parents and families and the teenagers, when is the time to start thinking about that transition to adulthood?

Dr. Agurs:
18 years old, you're a legal adult. And some places are hard and fast like, "Yep, you got to go." But most big centers like where I work, and where you work, and across the nation, we don't rush an 18 year old out the door. And 18 year old could be in their second month of their senior year of high school, and they don't even know how to make their own appointments. So oftentimes in our world, we keep our kids until 20, 21 as they transition out of high school into college, and they start learning to become an independent adult. Can they go at 18 to adult epileptologist? Absolutely. But oftentimes the cultural social hierarchy of life that they're still a child, even being 18, even being 19 in some cases. And so, depending on the true independence level of the patient, the responsibilities that the parents take upon themselves, and the actual functional level of the patient, we may keep people until 21, sometimes longer depending on what they actually need.

Dr. Correa:
And when your parents are actually starting that conversation of like, oh, what should they be seeking for in both their primary care and their specialty neurology care as an adult, and helping their child be really established, what kind of conversation and suggested resources do you point them to?

Dr. Agurs:
For us, we often will use... We have a great connection consortium between our institutions here, between Keck, USC and CHLA. And so we use the connection that way. But every patient I have wants go to Keck or go to USC. And so, we have a healthy adolescent transition program here at CHLA. They will use social workers to help engage the families on where to go next. Unfortunately, the type of insurance you have can often dictate where you're allowed to go, and what you're allowed to seek. But I counsel my patients, especially my complex ones, that you need to go see an epilepsy trained adult neurologist.
Just like not every child neurologist is epilepsy trained. You need to go see an adult neurologist who is epilepsy trained, who will know how to manage the four or five complex medications you are on. There are some patients who are on one med doing fine, you can see any neurologist you need to. But some of my patients, I'm like, "You probably need to go to an academic center that has all the specialties, that will talk to each other, a coordinate together, and work with your primary care physician, to make sure that you have the support you need and the coordination of care that you actually need."

Dr. Correa:
And from your perspective, whether it's a young child, a teenager, and a parent, what are some things that you think are important for them to think about and talk about right at the beginning when they're newly diagnosed with epilepsy, whether or not we know whether it's going to be well controlled?

Dr. Agurs:
I really approach towards the reassurance of the child. It's scary to have a seizure, especially if they remember the seizure. Seizures that they don't remember that they pass quickly and have no problems, sometimes it's not as worrisome. But there are some seizures that happen to where the child remembers what happens. They remember how they felt before it started and how they felt afterwards. And it could be very, very hard on them. Or ones that they don't remember, but they suddenly find themselves awaking in an ambulance, or somewhere foreign that they don't know. And so, helping reassure the child like, "Look, you're safe. We're here to kind of keep you safe. This doesn't make you different. There's nothing wrong with you." And that perspective, you are still worthy of being loved, worthy of being who you are.
So for me it's a lot of reassurance towards the children about, "You are still you, you are still you." And then with the parents, letting them know that this is a team effort. This is the team progress to where, I'm going to work with them to get their child as controlled as fast as possible, as soon as possible. Because I want to maximize their developmental potential, their growth, and their learning and having seizures really impacts that. And so, that's my goal for the parents. And then my goal for the kids is to reassure them that they are still themselves.

Dr. Correa:
And from my training and time, both in my epilepsy program at Walter Reed, I've always just been so heart-warmed by the smile of those kids that just bounce back. Over your years, what do you feel like you've learned from the kids?

Dr. Agurs:
It might be that I am still who I am. I'm not just my seizures. I am still a person. So, I love talking to my patients and teaching my residents and my PAs like, "When you're talking to them, yeah, we're asking about their seizures, but who are they? What are you into? How was your birthday? What are our plans?" And just sharing like who they are. That's one of the big things I've learned from my patients. They're like, "We're resilient. We're going to get through this. Yeah, that's one part of me, but it's not only who I am." And I think that, you learn a lot in just regular peds, but even more so in the chronic disease of epilepsy in pediatrics.

Dr. Correa:
Well, thank you Latanya for seeing and listening to each and every one of those kids. It's about who they are, what matters to them, and what makes them smile.

Dr. Agurs:
Mm-hmm. Oh, yeah.

Dr. Correa:
Thank you again for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life magazine for free at brainandlife.org. Don't forget about Brain & Life in Espanol.

Dr. Peters:
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Dr. Correa:
You can also find that information in our show notes, and you can follow Katy and me, and the Brain & Life Magazine on many of your preferred social media channels. We are your host, Dr. Daniel Correa, connecting with you from New York City and online @neurodrcorrea.

Dr. Peters:
And Dr. Katy Peters joining you from Durham, North Carolina, and online KatyPetersMdPhD.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health, and everyone living with neurologic conditions.

Dr. Peters:
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JenVon Cherry on Educating Communities of Color About Epilepsy

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