Coco & Psychogenic Non-Epileptic Seizures – PediaCast 390
- A trio of specialists visit the PediaCast Studio to discuss psychogenic non-epileptic seizures. Listen as we explore the presentation, work-up, treatment and long-term outlook for patients and families impacted by this condition. We hope you can join us!
- Hero’s Journey
- Psychogenic Non-Epileptic Seizures
- Epilepsy Center at Nationwide Children’s
- Psychogenic Non-Epileptic Seizures (NCH)
- Psychogenic Non-Epileptic Seizures (UpToDate)
- All About Seizures & Epilepsy – PediaCast 256
- Seizure Action Plan! – PediaCast 372
- Nurse Practitioners – PediaCast 317
Announcer 1: This is PediaCast.
Announcer 2: Welcome to PediaCast, a pediatric podcast for parents. And now, direct from the campus of Nationwide Children's, here is your host, Dr. Mike.
Dr. Mike Patrick: Hello everyone, and welcome once again to PediaCast. It's a pediatric podcast for moms and dads.
It's Episode 390 for December 13th, 2017. We're calling this one "Coco & Psychogenic Non-Epileptic Seizures". I wanna welcome everyone to the program.
So we have a fairly technical topic for you this week. But it's an important one for both parents and a pediatric providers who are in the audience.
For parents, you know my primary goal is to raise awareness about this condition. And we'll break down the terminology Psychogenic Non-Epileptic Seizures. We'll explain exactly what it means and what it is. My second goal for parents is really to have a resource in the archive for parents who are looking for more in-depth information about this disorder.
Perhaps because your family is impacted by it. It's nice to dive a little deeper into the science while still presenting the material in a way that folks can easily understand.
Now we also have a lot of pediatric providers in this audience. And my goal is the same for you – awareness, deeper dive and understanding. Because this is probably not something you see everyday in your practice.
But at some point, you will likely come across Psychogenic Non-Epileptic Seizures. And you wanna effectively include the condition in your differential diagnosis and your work-up plan.
And you wanna know who to get involve in the care of your patient and family from a referral perspective.
By the way, this has become a little bit of a quandary for this program, since we have a mix audience of a parents and also plenty of pediatrics providers, pediatricians, family practice doctors, nurse practitioners, physician assistants.
And we have CME podcast for pediatric healthcare providers over pediacastcme.org that stands for Continuing Medical Education. And we offer free category one credit for those who listen and participate. Details are available over that site – pediacastcme.org.
We don't offer category one credit for this podcast, we do not. But the content and the depth of information we include in each of this episodes on this feed, plain pediacast without the credited CME, this programs may be worthy of self reported category to credit if they pertain to your scope of care.
So for the healthcare providers in this audience, keep that in mind you might wanna jot down a list on your smartphone of all the episode you listened to, as you can claim appropriate category to credit if you need some of that.
Of course my pledge on this program continues to be to choose topics with parents in mind and explain things as we go, which is what we're doing today as we consider Psychogenic Non-Epileptic Seizures.
And I have three of guests who will be joining me in the studio shortly as we consider this condition.
Dr. Dara Albert is a Pediatric Neurologist. Debbie Terry is a Pediatric Nurse Practitioner, builder with the Epilepsy Center here in Nationwide Children's Hospital. We also have Dr. Kristen Trott with us today. She is a Pediatric Psychologist at Nationwide Children's. And as I said we'll get them settled into the studio in a moment.
First though, my wife and I recently went to the movies and saw Coco. So the new Disney Pixar movie that's in theaters this holiday season. And I have to say we really, really enjoyed it so much so that I mentioning it to all of you.
And the couple of things really stood out to me with the movie Coco you know, first was the presentation of the Mexican culture.
So I've heard of Dia de los Muertos or Day of the Dead before. So it's celebrated for few days late in October, early November.
But I really didn't have a grasp of the cultural context at all and what that celebration means to the people of Mexico or those of Mexican ancestry living in the United States and elsewhere.
I knew it was around Halloween and there were lots of colorful images, wonderful music, whimsical skeletons. But I think the movie did a great job presenting Dia de los Muertos within its cultural context, in particular what it means to families. So good stuff there. Definitely recommended.
The second thing I love about the movie, as a student of stories. I've had, for a long time, an interest in, you know trying to understand what makes story click with people.
You know why is it some stories are better than others? What makes a story feel right? You know not that we always need a formula or the stories need to be cookie cutter in structure.
But there are certain elements of a story that we expect, even if those elements are presented in a non-traditional way. And one of those story structures, probably the best known story structure is something called a "hero's journey", which is been a part of story telling for centuries.
It was formally outlined in 1949 by Joseph Campbell in his book "The Hero with a Thousand Faces". And there have been several updated editions of his work over the years.
And then this idea of the hero's journey was further expanded upon for the modern audience in 1992 by Christopher Vogler in his book called "The Rider's Journey".
So what is all this mean for you? Well a novelists, and screen writers, you know anyone who puts together a story-type project, many of them are really wee versed in this ideas.
And some of the greatest books and movies and even video games in our modern era hold through to this notion of this hero's journey. So works like The Wizard of Oz, Star Wars, Lord of the Rings, Harry Potter, The Lion King, Toy Story, and now Coco.
So what is this hero's journey, you might be asking. It's pretty simple really. And again, writers can take great liberty on how this pieces parts work.
But it begin with the soon to be hero in his or her ordinary world, you know just living their day to day life. You get to know them, discover their dreams, their frustrations, the conflicts and obstacles that they yearned overcome.
And then one day, there is a call to adventure. You know, something happens that presents the possibility of overcoming their daily conflicts and obstacles.
But the task appears daunting. You know, there is no way they can actually set out on this adventure, or so they think, which leads to a refusal of the call. Their not gonna do it.
Well thankfully, our hero meets a mentor, which can be a person or an institution or a situation. Something that equips our hero and helps he or she accept the call to adventure.
And then once the call was accepted, our hero crosses a threshold into a special world, which is quite different than our hero's ordinary world. Whether it's Oz or The Dead Star or Middle Earth or Hogwarts or the shadowy place, or outside Andy's window, you know, some place special.
And in the movie Coco, it's the land of the dead. And it's here that our hero was tested. You know, here she meets friends and enemies, adventures occur. And disadventures eventually lead to the approach to the in-most cave.
And in that cave, our hero is gonna face a great enemy and a huge ordeal. Of course, our hero ends up winning, claims a reward, in that takes the reward in whatever form it comes.
On the road back to ordinary world, where our heroes now ready to settle conflicts and clear obstacles, you know, do the things that heroes do.
Well unfortunately, just as we think our hero will make it back and save the day, evil was resurrected for a final climax, which truly elevates our antagonist to hero's status.
And as our hero overcomes that final resurrection of evil, here she will return with the elixir, which is represented by knowledge or power or fortitude, whatever it takes for hero to be a hero in the ordinary world. And we have our satisfying happy ending.
So that's the hero's journey. And I challenge you to choose just about any story that resonates with large Western audiences. And you'll find elements of the structure.
You know, sometimes it's subtle, but it's there. And in Coco, the hero's journey is clearly the play book for the plot. So it's kinda fun to follow along, if your interested in story structure.
Which by the way and really the whole reason for bringing this up is this can be used a topic of family engagement. So pick any movies you watch as a family and become an active participant of the movie by watching for the various elements of story telling and then talking about it as a family.
Preferably after the movie, especially if you're seeing it in the theater.
You don't want your next neighbors to hear you whispering back and forth.
But if your at home, you know when you're doing this as an activity, you may wanna pause the movie you know, when certain aspects come and then say "Hi, hey look, I just found the call to adventure or who was the mentor, when did the hero cross the threshold, what's the elixir that they're bringing back from the special world to ordinary world."
And it can be a fun conversation with your kids. And not just with movies but many books or even video games contain the same elements.
So as a family, you know, see if you can identify the ordinary world, the call to adventure, the refusal of the call, the meeting with the mentor, crossing that threshold to the special world.
All of the tests, allies, enemies, and then the approach to the in-most cave, the ordeal, the reward, the road back, and then that resurrection of evil.
And finally, overcoming that and returning to the ordinary world with the elixir that let's our hero be a hero. You may have to get a little creative in finding each step, just as the writer who's creative and stringing them together. But they there and finding the can be really fun family activity.
And then, of course, the next step is getting your kids and maybe yourself to start telling stories and thinking about the structures and how you can get creative in each of those pieces parts as you build a story of your own.
And who knows, you know, who knows where that could lead especially if you have a kiddo who is really creative and then the writing and you know, maybe sharing that story structure with them will help build their skills and confidence as they become a storytellers themselves.
If you have trouble remembering the steps, just Google "Hero's Journey" and you'll find them easily right at your fingertips.
Alright. Enough about books, and movies, and hero journeys. Let's transition to Pediatric health, which is also very important for families and the primary reason we are gathered at here today.
Before we explore Psychogenic Non-Epileptic Seizures, I do wanna remind you the information presented in PediaCast is for general educational purposes only. We do not diagnose medical conditions or formulate treatment plans for specific individuals. So if you don't have a concern about your child's health, be sure to call your doctor and arrange a face to face interview and hands-on physical examination.
Let's take a quick break. We'll get our studio casts settled in and then we'll be back right after this.
Dr. Mike Patrick: Dr. Dara Albert is a Pediatric Neurologist at Nationwide Children's Hospital and an Assistant Professor of Pediatrics at the Ohio State University College of Medicine.
Dr. Albert stop by the studio back in Episode 372 for a conversation regarding Seizure Action Plans. She joined us again today, this time to talk about Psychogenic Non-Epileptic Seizures. So let's give a warm PediaCast welcome once again to Dr. Dara Albert. Thank you so much for being here.
Dr. Dara Albert: Happy to be here. Thanks Dr. Mike.
Dr. Mike Patrick: And we have another returning guest, Debbie Terry. She was here for Episode 317 when we explore the history, training, and role of Nurse Practitioners. She takes care of kids in Epilepsy Center in Nationwide Children's, which includes a clinic and dedicated to kids with Psychogenic Non-Epileptic Seizures.
So a warm welcome to you as well, Debbie. Thanks for stopping by again.
Debbie Terry: Glad to be here.
Dr. Mike Patrick: And just when you thought it was PediaCast alumni day, we also have a first time guest, Dr. Kristen Trott. She is a Pediatric Psychologist and an Associate Professor of Pediatrics at Ohio State. She also helps patients and families as they deal with Psychogenic Non-Epileptic Seizures.
Dr Trott, thanks to you too for stopping by.
Dr. Kristen Trott: Thank you for having me.
Dr. Mike Patrick: Really appreciate all of you. Let's start with Dr. Albert. Just sort of define for us what is meant by the term Psychogenic Non-Epileptic Seizures. And then there have been some other terms that have described this condition in the past. Just sort of walk as through the name.
Dr. Dara Albert: Sure, yeah. So as the name implies, these are events that sort of look like seizures but are not actually being caused by epilepsy. There, instead a manifestation of physical manifestation of stress of psychogenic origin.
As you mention, there's been several different terms I have been used over time, really old terminology might have been included like hysterical fits or hysteria type of terminology.
And then they kinda moved to Soto Seizures. And then there is this Psychogenic Non-Epileptic Seizures. And here at Children's, we prefer to use the term Psychogenic Non-Epileptic Events, so PNEE.
Because really, we find that often times it's confusing when people use the word seizure and they, you know, go to the next doctor and say "Oh yes I have seizures but they're caused by stress" and people go "Wait, what do you mean? Huh?"
Dr. Mike Patrick: Yeah, yeah, absolutely. And sort of historically that word seizure has been attached to this condition because the physical manifestations of it have some similarity –
Dr. Dara Albert: Right.
Dr. Mike Patrick: – to actual epileptic seizures.
Dr. Dara Albert: Exactly, yeah.
Dr. Mike Patrick: So how common are these events? Deb.
Debbie Terry: Well, these actually are more common than most people would probably realize. And we even within epilepsy clinic find number of patients who have been actually diagnosed with epilepsy, who we later find out that we really have this non-epileptic events.
And even up to 10 to 20 percent of children who get referred to an epilepsy center because they continue to have what they think are epileptic seizures. Then they find out that there is actually non-epileptic psychogenic.
Dr. Mike Patrick: Yeah.
Debbie Terry: They are actually very common. And they also can occur in children who already have epilepsy.
Dr. Dara Albert: Right.
Debbie Terry: Which also adds some complexity to things because they may be having two types of episode so –
Dr. Mike Patrick: Yah, yah. What sort of risk factors play role and develop of this Psychogenic on-Epileptic Events, Dr. Albert?
Dr. Dara Albert: Well as you could imagine, it's kind of premorbid or comorbid anxiety or depression, mental health, challenges, other conversion disorders. In the adult population, there is sort of an association talked about in the literature with like sexual, history of sexual abuse.
Fortunately we don't tend to find that very commonly in our children and adolescence who has the PNEE. More often it's more of an interpersonal stresser like school stresser or stresser at home or you know, with the family that tends to be more of the trigger.
Dr. Mike Patrick: Yah –
Dr. Dara Albert: And then, sorry –
Dr. Mike Patrick: No, no, please.
Dr. Dara Albert: And then, as Debbie also mentioned is that there can be, you know, comorbid epilepsy actually, you know, some patients who have epilepsy.
Dr. Mike Patrick: So sometimes, their movements may be real epileptic seizures but then at other times, it may not really be caused by epilepsy –
Dr. Dara Albert: Yeah.
Dr. Mike Patrick: – and kindly define for us what the differences there between epilepsy and this sort of seizure or event.
Dr. Dara Albert: Sure. So epilepsy would be, you know, the condition of recurrence seizures that are caused by abnormal electrical activity in the brain.
And so, you know, oftentimes that's, you know, evident on for example on EEG Test where we captured an event and we confirm that there's abnormal activity going on at the time that the person is having the event and we consider that an epileptic seizure.
Whereas oftentimes the patients who have this PNEE events we would bring them in and have them on EEG and see them have their event, and we don't see any abnormal brain activity happening at that time, and so that's kind of, you know.
Dr. Mike Patrick: Yeah, while waiting you would diagnosing this.
Dr. Dara Albert: Yeah.
Dr. Mike Patrick: So, but what you see can look like a seizure. And so, then the next question becomes is this something, and Dr. Trott I think you can sort of speak to this too. Is this something that is intentional? So as someone, you know, I don't wanna say faking a seizure.
But is there, there must be something else going on here that when we call the Psychogenic. Tell us why that name is part of this.
Dr. Kristen Trott: Correct. I mean I think, one of the things that we like to really help families to understand is this is not something that their child is creating or faking –
Dr. Mike Patrick: Yeah.
Dr. Kristen Trott: We have to do a lot of education when patients come to our hospital or come to our clinic to help them understand that this is a true manifestation of stress. The same way that we could get a headache or a stomach ache. This is just a different physical manifestation of stress.
Dr. Mike Patrick: Yeah.
Dr. Kristen Trott: So we do really help families understand and later we'll talk about schools. But help other people who are interacting with the child and understand that this is real, it's just another form of communicating that they're feeling overwhelmed by something.
Dr. Mike Patrick: Yeah absolutely. And I can imagine that from a parent standpoint, from a school standpoint there can be, you know, if you don't sort of understand it on those terms, some anger that would occur if you think your child is having these episodes and it relates more to a mental condition, a mental health kind of issue, behavioural health issue rather than true epilepsy.
Dr. Kristen Trott: True. And there can be also a lot of fear associated with it. I mean if we don't know what we're dealing with, then it's hard to be confident in responding to it in a way that we think will be most helpful for the patient.
Dr. Mike Patrick: Yeah, yeah. Absolutely. Debbie, tell us how, you know, sort of characteristics of these type of events compared to true epilepsy, you know. What are some of the differences between the two.
So if you don't have access to an EEG right away and you're trying to figure out is this a real seizure or not a real seizure. Or you know, one of this events, how can you tell the difference between the two just by looking at them.
Debbie Terry: Well, first I'll preface it by saying the only way to truly know for sure is if they have the event while either hooked up to EEG. And even, and if there's no abnormal electrical activity we would say yes, these are non-epileptic.
That is even, there's still even like a 1 or 2 percent chance that very occasionally. There may not be any abnormal electrical activity associated with that but still could be epilepsy. But that's very rare.
Dr. Mike Patrick: Yeah. And I was reading that the opposite can be true too. Sometimes there can be some electrical activity and yet it really is one of these events.
Dr. Dara Albert: Yeah. So the clinical pictures, which I'm sure shall give you some clinical details in a second, really helps us put the two together.
Dr. Mike Patrick & Debbie Terry: Yeah.
Dr. Mike Patrick: I'm sorry for the interruption.
Debbie Terry: No, that's okay. So by observing an event there are some characteristics that can clue you into this maybe a non-epileptic event versus epileptic.
But we never wanna, we're trying not to rely on that solely. And we really want, the best thing is if an epilepsy provider would see an event. If we can't capture it on an EEG to be able to determine if it may or may not be epileptic.
But some of the, some of the most common differences that we'll see is that with a non-epileptic event, the onset is more gradual. They kind of work up to the event. Where's in epileptic seizure, it just happens in snap of fingers and there into it.
Non-epileptic events often are actually much longer than epileptic seizures. Most epileptic seizures only last a few minutes. When you get into events that last for 30 minutes and longer than that and they're not developing respiratory difficulties and other things, most likely that's non-epileptic.
There's also just differences in the kind of movements they have, they're more flailing, or there can be pelvic thrusting, there is a synchronous movement like one side of the body's kind of doing one thing the other's doing the other.
Also, if someone is having involvement of their whole body in their seizure, their whole body is jerking, but they're aware that it's going on or can remember parts of it, that is not fit with an epileptic seizure.
Dr. Mike Patrick: Yeah.
Debbie Terry: Coz she would not be aware if your whole brain is involved.
Dr. Mike Patrick: Yeah. So if you have a generalized seizure that's affecting the entire body's stiffness or shaking, usually you would also have lost of consciousness.
Debbie Terry: Yes –
Dr. Dara Albert: Absolutely.
Dr. Mike Patrick: And then not be setting up right –
Debbie Terry: Correct –
Dr. Mike Patrick: – in a chair while that sort of things are occurring.
Dr. Dara Albert: Right. Yeah, absolutely.
Dr. Mike Patrick: And then another difference is, tell us about the, what happens after a typical epileptic seizure compared to one of this events.
Debbie Terry: After an epileptic seizure, usually a child will be confused, tired, want to sleep. Whereas with a non-epileptic event, often they return to normal pretty immediately afterwards and have no what we call Postictal Impairment.
Dr. Mike Patrick: Yeah. And then one of the thing I find kind of interesting is that this can happen frequently. So with general –
Debbie Terry: Yes –
Dr. Mike Patrick: – epilepsy usually you don't have, you know, multiple of them. On one day let's say, or you know, every single day, there's one or two of these events. So that's another distinction.
Dr. Dara Albert: Not only do they happen frequently but they tend to have sort of explosive onset where they start on Monday and by the time the kid is in the ER on Friday, they've had like 50 of them. There are some epilepsy that might start so fulminantly but that's kind of more rare for true epilepsy.
Dr. Mike Patrick: Yeah. On the other hand, you can have some forms of epilepsy that can sort of look like what we're describing especially with partial or focal. Talk a little bit about that.
Dr. Dara Albert: Yeah. So we think it's really important to get needy-greedy details of the event itself. The most important feature of epilepsy in general is that the seizures are stereotype. So they're gonna look exactly the same or pretty nearly the same with every seizure.
Whereas, this PNEE events are typically not the same. So one might last 5 minutes, the next one is 30. This one the kid is shaking, the next one is, you know, not. Some other features that Debbie didn't mention oftentimes that the PNEE will have emotional output.
So there'll be crying, or they'll seem distressed. Whereas in true epileptic seizures, there often isn't emotional component to it. NEE can kind of wax and wanes so might be happening for 60 minutes. But, you know, in the beginning it's really intense and it kinda slows down and then it picks up again and then slows down.
Dr. Dara Albert: We don't see that with epileptic seizures. Either they tend to happen and then they're done and then your Postictals as Debbie said. So there's a lot of clinical features that if you take a really good history and get those needy-greedy details, you can kind of pick up on that well this is probably NEE.
Dr. Mike Patrick: So let's say from a pediatric provider standpoint, let's say patient comes in to their practice and the parents were describing these sorts of events, maybe one actually cursed in the office, but they've heard and understand the description of it.
They don't think that it's really an epileptic seizure. So where do you go from there in terms of referrals and how does this get work up to in that making of a diagnosis.
Debbie Terry: If the provider suspects that they're non-epileptic events, they certainly can be referred to our clinic even at that point.
Any child who has a feeling of kind seizures, you know, should have an EEG at the minimum anyway to see, to possible rule out. Even though you can't completely rule out epilepsy by the EEG but it can give you some further information.
Dr. Mike Patrick: Yeah.
Debbie Terry: So those kids should be referred to Neurology to be evaluated for either epilepsy or non-epileptic events. They do have the non-epileptic event clinic where, because I also specialized in epilepsy along with Psychogenic non-epileptic events, I can see new patients on that clinic.
There's just a strong suspicion from the get go that it's non-epileptic and then we'll talk more about the clinic. But then we'll also have psychology involvement from the beginning –
Dr. Mike Patrick: Yeah. Yeah. Yeah.
Debbie Terry: – which can be helpful.
Dr. Mike Patrick: Absolutely. So, really, a good first step is to get EEG and you may wanna talk to whoever they're referring neurology, system is in your area. So some of them would want to order EEGs, some of them may, you may have relationship with them and you'd order the EEG before you go in.
So individual providers have to know who they're referring to and kinda know what the steps are in that system. But there is more than one type of EEG that can be done and tell us Dr. Albert what sort of, what the differences in the types of EEG and which is the best to get if you're thinking about this.
Dr. Dara Albert: Sure, so really the EEG itself is the same, it's really just the duration of it. So what we usually call a Routine EEG is about 30 to 40 minute recording. So it's like a snapshot, a small fraction of the person's day.
And even large numbers of patients who have true epilepsy may have a normal Routine EEG in that snapshot of time. So you know, you get the Routine EEG and it's normal that might be reassuring but it doesn't completely exclude the possibility of epilepsy.
And if you're still really questioning and you're not really certain of what the events are, then just getting a longer EEG might be of benefit. So, admitting the patient to the hospital and doing what we call Long-term Monitoring, which can be anywhere from a couple of hours to several days.
And with the goal to being actually capture an episode and see what the brain waves look like during the event.
Dr. Mike Patrick: Yeah. Are you able to use video to determine like what time that that actually occurred and matched that up so you know exactly on the EEG –
Dr. Dara Albert: Yep.
Dr. Mike Patrick: – you know what's happening with the video.
Dr. Dara Albert: Yep, yep. And even our Routine EEGs we use video with as well and it not, not terribly rarely we see events during a Routine EEG as well, I mean especially if they're happening very frequently and we would have the video to look at them there as well.
Dr. Mike Patrick: And if stressers are one of the things that kind of bring this on certainly having a bunch of electrodes on your scalp and people you don't know may –
Dr. Dara Albert: Sure.
Dr. Mike Patrick: – help precipitate one of these events.
Dr. Dara Albert: Yeah. In general they, they oftentimes are pretty suggestible as well. I mean, you hooked them up on EEG and you sort of give some gentle suggestion like — it would be really helpful if you had one now, you know, that we like to see how it looks like, you know, now's the time — and oftentimes that's enough to kinda spark one.
Dr. Mike Patrick: Yeah, yeah. And I like what you said earlier about really looking at the whole pictures. So, you wanna look at the history of it, you know, the kid's past medical history also, their family history –
Dr. Dara Albert: Sure.
Dr. Mike Patrick: – to see what social stressers that there might be. And then looking at that EEG, and you want someone who is used to looking at pediatric EEG as I would imagine –
Dr. Dara Albert: Sure. Yeah.
Dr. Mike Patrick: – to. And so here at Nationwide Children's we have a clinic dedicated to Psychogenic Non-Epileptic Events and you're the Medical Director of that clinic.
Dr. Dara Albert: I am as very recently.
Dr. Mike Patrick: Yeah. How did that get started in terms of being , it's only individual clinic.
Dr. Dara Albert: Well, I would turn to these lovely ladies for more detail on that.
Debbie Terry: Well, this probably been about 4, 5 years ago I think. We just, Dr. Trott and I were talking about this patients who are presenting with this events.
Dr. Mike Patrick: Yeah.
And there really wasn't a very clear mechanism for being able to help these patients. So we just got together and said why don't we just see patients together. And so, since we've been doing that now for several years, about 2 patients a week we'll see in the clinic.
And from, as an epilepsy provider, I can be there to get the history of the events. And by then, a lot of times we've already have an EEG, may already have been diagnosed, maybe they've captured the events.
Patients come to us at all different points and kind of the diagnostic process. But I'm there as an epilepsy provider to be able to explain to them why this is not an epilepsy, how we, you know, determine the diagnosis.
Or if we needed to I can help kinda sort that out by trying to get a better history of the events and that sort of thing. So I can walk them to medical aspect of things and then in a lot of other settings.
And before we have this clinic, what would happen is that the epilepsy provider would say "Okay, these are not epilepsy, this is from stress, goodbye and –
Dr. Mike Patrick: Yeah, yeah, yeah
Debbie Terry: – hope you find somebody to help you."
Dr. Dara Albert: And good luck.
Debbie Terry: Yeah.
Dr. Mike Patrick: Because it's not neurology issue –
Debbie Terry: Right.
Dr. Mike Patrick: – at its core.
Debbie Terry: Exactly.
Dr. Dara Albert: Right.
Dr. Mike Patrick: Yeah, yeah.
Debbie Terry: So now with this clinic, what's very nice is that so I can do my part of it and then I can just turn to Dr. Trott and say "So, I'm not the person who can help you". You don't need seizure medications, what you need is help, you know, from psychology. And she's here.
Dr. Mike Patrick: Yes.
Debbie Terry: So I can kinda pass that over then to Dr. Trott and then she can, you know, talk about the psychological aspects of things. And then we can talk with the family about not only response plans, so that we can get these events under control quickly, as well as for the longer term treatment options that make sure that they don't return.
I think the other really nice benefit of our clinic is that it also reduced ED return visits. Families know that they've got these diagnosis while they were in house. They understand that they're gonna have follow-up in neurology clinics specifically in PNEE clinic and so I think it's been really helpful in letting families have security in this diagnosis.
Dr. Mike Patrick: Yeah. I would imagine there's a lot of families who lived in area where there may not be dedicated clinic like this. But this might be something that's worth while for people to travel to, at least initially to learn more about the condition to sort to get treatment started.
We're gonna talk a lot more about treatment itself here in a few minutes. But really then, maybe, then more long-term sort to get plug back the local resources once the education and initial therapy has been initiated.
Debbie Terry: Correct.
Dr. Kristen Trott: Right.
Dr. Dara Albert: Yeah, absolutely.
Debbie Terry: And one thing I do wanna clarify about the clinics, some people perceive it is like a treatment program. And really the clinic is more for us to educate. You know, from my standpoint, really I don't need to see them a couple of times usually.
One time just to kind of explain, make sure they understand things. And then more gonna either connect them with local services or Kristen may see them in the clinic in psychology, separate from the clinic. But it's not like we're in this treatment program that we follow them for you know, months.
Dr. Mike Patrick: Yeah.
Debbie Terry: It's more education, helping them understand the diagnosis and what the treatment plans should be –
Dr. Mike Patrick: Yeah.
Debbie Terry: – what it is should look like.
Dr. Dara Albert: And one other really nice thing about the clinic is we try to get patients in quickly so there, the diagnosis is made on in-patient neurology service for example and then we're trying to get them in within the couple of weeks.
So that way they don't have a whole lot of time to be sitting at home and questioning and going to get other opinions or coming back to the ER because the events, just because you make the diagnosis, and we'll talk about the treatment in a minute, but the events don't magically disappear.
And so, you know, like where I did my training in Chicago, we might make the diagnosis and refer to psychology and it could take weeks to months to get in to psychology. And then the mean time, they're back and forth in to the ER or bouncing around to the other neurology departments, so.
Dr. Mike Patrick: I would imagine, before we get into treatment, one other thing with diagnosis that I wanted to bring up, are there any other things that you can do. And I kinda invision where this is the most difficult is when you have a kid who really does have epilepsy.
And so maybe there are an anti-seizure medicine but there still have in this events that maybe look like typical epilepsy but maybe they are. And so is this really the Psychogenic Non-epileptic event or is this the medication not working.
So are there some other things that you can do for those difficult cases to try to tease out? What's going on with their blood test or imaging studies, and anything else that you have with your disposal to help or there's really –
Dr. Dara Albert: Yeah.
Dr. Mike Patrick: – just history.
Dr. Dara Albert: Well, I mean this definitely can be very challenging cases. And obviously we have to take those patients' specific situation in mind. But in those instances, it's probably best to actually capture the events on a long-term monitoring EEG.
Sometimes we even brought parents into the video room and actually show them this is the seizure, this is the NEE, see the difference, to kind of help, make sure that we can tell the two apart.
Dr. Mike Patrick: Yeah. And is there any blood work that's helpful in determining –
Dr. Dara Albert: No.
Dr. Mike Patrick: – which is happening?
Dr. Dara Albert: No. Not really. There's been some talk in the literature about using things like Prolactin. Like in the acute setting after an event, but the true epileptic seizure might have an elevated Prolactin.
But my understanding is that it has to be done very quickly like that's in the ER like right after an event. And I'm not sure that's really all that's useful. So we don't typically recommend that here at Children's.
Dr. Mike Patrick: Yeah, yeah. Absolutely. Dr Trott, let's, as we start transitioning into thinking about treatment for these events, I think the first sort of sensitive issue is how do you present this diagnosis to patients and families?
Dr. Kristen Trott: Sure. And that is a huge point –
Dr. Dara Albert: Huge.
Dr. Kristen Trott: – to consider. One of the things that we always explain to our families is that non-epileptic events is a diagnosis of rule out. We do always wanna make sure that we haven't missed something medical that could be underlying these events because we do always wanna keep patients' safety as kind of our first and forth front.
Dr. Mike Patrick: Yeah.
Dr. Kristen Trott: Once we have collected enough evidence through EEG and other, other sources, and we can confidently make that diagnosis. I think the first step is always to explain that to parents very clearly.
Let them understand how we came up to that diagnosis being you know, as Dr. Albert said, showing them EEG results so that they really understand the difference between what an epileptic event can look like and this current events that we're talking about.
Dr. Mike Patrick: Yeah.
Dr. Kristen Trott: So once we kind of done through that comprehensive medical work up and we feel good about this diagnosis, the next step is really just offering that education.
You asked earlier how common this is and I think that's something that families are often surprise at. You know, I come to work everyday and I see a child with non-epileptic event diagnosis. And so it is much more common.
So kind of helping families recognize and embrace that this is simply just something that's happening and that there's treatment for it.
Dr. Mike Patrick: Yeah. And so, what, how is treatment look like?
Dr. Kristen Trott: Well there's sort of two phases. I mean, I think the first thing that we wanna do is get these events under control very quickly so that we can have kids return to school.
So there sort of that first step, helping them recognize one of the other characteristics that we often see with non-epileptic events is that patients can predict when there going to happen.
The predictor is often as you know, unique and individual to the child. But many of them knew that something was going to happen. Their body told them in some way that their feeling uncomfortable.
And so we use that, that early warning sign to help them recognize that if you can predict something from happening, then we can intervene and we can stop it. So it is sort of our first step to intervention is addressing these episodes and getting it under control.
Then for longer step, what we do wanna refer you to some out-patient counseling. Again, if you're living here in Columbus that maybe through our network or if you're in the one of the outer skirts we can provide you some local resources. And I'm more than happy to do consultation with other providers to explain that this is really just again another form of cognitive behavior therapy.
What we're doing a lot of things to introduce relaxations strategies and other coping tools so that when they are feeling overwhelmed, they can deal with it in more effective way.
Dr. Mike Patrick: Yeah. Do you see a lot of co-existing mental health conditions with things like anxiety, depression, personality disorders, do you see those sorts of things along with this?
Dr. Kristen Trott: We definitely see comorbid conditions with anxiety and depression but oftentimes, a lot of these kids come in and then they might be, might be exhibiting some mild characteristics but maybe don't have a formal diagnosis. But we do definitely feel a lot of the overlap and some of those –
Dr. Mike Patrick: Yeah, and then –
Dr. Kristen Trott: – characteristics. So treatment does include treating those symptoms of depression and anxiety. When seems like cognitive behaviour therapy is not sufficient, that might be a time that we would also wanna involve psychiatry and consider some kind of medication to further treat the depression or anxiety symptoms.
Dr. Mike Patrick: Yeah, yeah, sure.
Debbie Terry: Can I –
Dr. Mike Patrick: Yeah, yeah please.
Debbie Terry: – just make one point which maybe Dr. Trott can elaborate on further, but there also some kids who come in and they really like, everything was absolutely fun. I have no stress, everything's great. And you know, to look at them you think why would they have anything going on. So you always have a good way of describing that I think.
Dr. Kristen Trott: I do think for some reasons, teenagers don't seem to enjoy or like to embrace the word stress. So I think it's important to recognize that there needs to be a broad definition of stress. So not just thinking about you know, a busy schedule, but that's certainly can be a bits of it.
But what are maybe some internal pressures that I'm putting on myself? Maybe I'm trying to be a little bit high-achieving, putting increase pressure on myself whether it's academically or in sports. There can be physical stressers that we need to think about.
And so, it really is important to kind of think of very broadly about, not just the word stress or anxiety, but being overworked, being over schedule, being tired and those types of things.
Dr. Mike Patrick: Is there a role of family in this? So we talked about the cognitive behavioural therapy for the person who's having these events. But a lot of that stress, and we've talk about toxic stress, resiliency, and the important of healthy relationships.
It would seem that some of these kids might not have as much healthy relationship at home as we'd be hopeful. So how do you support the whole family in this and trying to get the family healthy?
Dr. Kristen Trott: Sure. I mean that can certainly one of the stressers. If there are some difficult family dynamics that need to be part of it, I think what's important to recognize is that, and certainly I have this conversation, my goal is not to remove all of your stressers because we are going to be dealing with school, and peers, and social pressures, and perhaps, challenges within our families.
And so, it's not that we eliminate stress, it's that we build a coping strategies so that we can deal with stress differently. And certainly if there's a family component to it, making sure that we're not just talking about individual therapy, but there could be family therapy, particularly with emphasis on communication.
Dr. Mike Patrick: Yeah. And maybe encouraging other healthy peer relationships, maybe you know, if there's community programs, or things where healthy relationships can be established, where they, and that's the area I think that primary care providers, especially in smaller communities you know, can really make a difference in terms of school programs and encourage healthy relationships among kids.
Dr. Kristen Trott: Absolutely, yes. I agree.
Dr. Mike Patrick: And then speaking of school, how do you get the school involved in this kind of thing. I would imagine that the school, when one of these events occurs, they would typically wanna be really quick to say "Oh you need to go".
Dr. Kristen Trott: Correct. And that's where it's really important to have communication and certainly specific information about the diagnosis of non-epileptic event. So if a child is seen at Children's and they are given this diagnosis, we do have some resources for families to share with school, explaining what the diagnosis is, explaining what the optimal response plan would be.
Certainly we do wanna discourage families or schools from having kids transported back to the hospital because there's really nothing that can be done for them in the hospital. And that sort of stimulation and over excitement hence to just prolong these episodes.
So we do wanna try to avoid that. So sharing those materials with the school, certainly that's another aspect than all of our clinic that we have. Debbie and I do a lot of consultations with school nurses, other providers to help them feel confident in treating these students when they return to their campuses.
Dr. Mike Patrick: Yeah, absolutely. Especially for something that they may not have seen in their particular school district before or for a long time. And so just the educational piece of it in "Hey, this is what this is, this is how we treat". It can really go a long way to help not disrupt the child who's affected their daily routine.
Debbie Terry: And there's different, different school districts will have different rules surrounding this and what they're comfortable doing and not. As we said, we don't want them to go to the emergency room.
And unfortunately in some schools, they really have a policy it's as if you have any kind of event that's lasting longer than 5 minutes, you got to go to an emergency room.
So try to work with these schools as best we can and provide things in writing and communicate with them as best we can 'coz I think nurses sometimes feel like they're not getting the best information. So they're kind of their hands are tied.
Or the parents don't feel as open to discuss in this because it's a mental health problem. And so they just tell the nurse "Oh it's not anything, you know, they don't need to get to emergency room, don't explain it".
Dr. Mike Patrick: Yeah, yeah. Protocols within schools can be great. But then there's times when there need to be exceptions to whatever these protocols are. And that education and communication piece is really key to, for that.
With the epilepsy, I know that oftentimes you have activity restrictions especially when there's ongoing seizures that aren't really necessary well controlled. So you don't necessary want those kids driving cars or swimming alone, or in the places where they could be in danger if this occurs.
What about with these sort of events, do you put any activity restrictions in the place or is that really gonna further reinforce that you know, that this is a disease or a behavior, right if that makes sense.
Debbie Terry: Well, I think there's certainly are definitely some restrictions that need to take place. But it's also, we are kind of weighting that with we want them to get return to normal activity –
Dr. Mike Patrick: Yeah, yeah.
Debbie Terry: – as much as they can. And even with epilepsy, if you have or having a frequent seizures, you can still return to sports and other activities. So it isn't necessarily all that different from epilepsy. And that also be a motivator for some kids to get this under control.
'Coz we, we definitely do not let them driving with these events. So we treat them just as they do as an epileptic seizure, as far as driving or restrictions. And so, but the rest of the things really are gonna be similar, you know.
They can suddenly going with one of these events and it can go into an epileptic seizure. You don't wanna be swimming alone. You don't wanna be climbing trees. You don't wanna be riding a bike without helmet.
Dr. Mike Patrick: Yeah.
Debbie Terry: Things like that.
Dr. Mike Patrick: But do you find that even though they're not necessary doing it on purpose is less likely that one of those would occur if a child was in a dangerous situation? Just in your opinion.
Dr. Kristen Trott: Well it depends. I mean I've had a number of patients who were athletes and while they enjoy the sports they were participating in, it was a source of stress because they were putting again this internal pressure on themselves to either be good at this for themselves.
Or if it's a teams sport, to not let their team down. And so, even though it's something that they identify as something they enjoy doing, it can be a source of stress and can contribute to the onset of one of these episodes.
Dr. Mike Patrick: Yeah, yeah. I think maybe a little less likely to actually harm themselves in the course of this. I mean maybe, that would be one way if they truly get harmed in the course of this. Maybe you should look, maybe early was epilepsy.
Dr. Dara Albert: Yeah. So from a safety perspective, I mean obviously each individual is different. But we do find, sort of in general, that PNEE tend to happens sort of with an audience. So you know, they don't necessary happened alone, while the kids are alone in their bedroom. It happens in a living room when everybody was there. Or in the middle of the classroom, you know, at school or things like that.
Dr. Mike Patrick: But then again self harm can be a manifestation of other mental health things, maybe not typically in this way but you know, possible.
Dr. Kristen Trott: I think we've mentioned earlier the kids can sometimes predict these episodes. So if they are returning –
Dr. Dara Albert: Right.
Dr. Kristen Trott: – to sports or other situations where they could be at rest if they were to have an epileptic event with a non-epileptic event. If you can predict it –
Dr. Dara Albert: Take yourself out of the situation.
Dr. Kristen Trott: – you can be safer.
Dr. Mike Patrick: Yeah. That makes sense. What is the long-term outlook for these kids? I mean, how well do we do getting these events under control and does this become a life-long on and off issue?
Dr. Kristen Trott: No. It definitely does not need to be a life-long issue. This is something that I think, once patients and families are sort of an agreement and understand the diagnosis and when they actively follow you know, the recommendations to seek treatment, they can certainly get these episodes under control.
Specific timeline for that, unfortunately is unpredictable. And I'd like families to know that some patients, research indicates, as soon as I get the diagnosis, they've been able to quickly and immediately stop the episodes moving forward.
Dr. Kristen Trott: Other patients, they can takes a lot of rehearsal and practice. And unfortunately, we don't know which category our kids are gonna fall into. But I do find that when kids can identify what their stressers are, learn those new strategies for dealing with it different, let them the support and understanding of their family, social support in school, then definitely.
And research certainly indicates that prognosis for children is definitely more, more encouraging than adults. Kids tend to get linked more quickly with providers who can provide services.
Dr. Mike Patrick: Yeah, yeah. So when this is happening in the adult world, typically it is a little more difficult to deal with because there maybe some more issues with secondary gain difficult to eliminate.
Dr. Kristen Trott: Tease out, exactly.
Dr. Dara Albert: And in addition, you know the prognosis tends to be affected by how long the events have been going on, the research has kind of shown that if. So it's why, that's why it's so important to kind of make this diagnosis in a timely manner and then deliver the message to the family in a way that they can understand it and they can grapple with it and identify yes this is what's going on.
And if their you know, not buying it and going out there second, third, fourth opinion this is been going on for months to years, then it's gonna be a lot harder to get them under control than the kid who started on Monday, we got the EEG on Tuesday. Wednesday they're in PNEE clinic.
Dr. Mike Patrick: Yeah. Tell us once again about PNEE clinic and sort of help people get connected with that and what to expect when they come.
Debbie Terry: Okay. Most often we'll see patients after they've been in the hospital. They often will come in emergency room for this kind of explosive onset of these events. They're coming. They capture on EEG, diagnose with PNEE, go home.
Debbie Terry: They, we see them in the sense for follow up from that hospitalization. Because they are told the diagnosis in the hospital explained it but it's fresh, it's new. They go home, they talk to other people. They say "Oh are you sure? That doesn't make sense".
And so it's good for us to then see them to reinforce that diagnosis. And often they come back in even though like "I think so, but I still have some doubts". And we can kind of reinforce that explanation.
And then also make are they getting connected with the counseling and the therapy that they need. So we're able to follow up on that and make sure that they're, you know, going out the door with a good plan.
Moving forward, we don't often do not need to see those patients back. We've kind of transition them in a sense in to the care that they need 'coz they don't really need neurology anymore.
So that's the most common scenario and kind on how we started with this. But then we also see, we'll see children who may have epileptic seizures. And now the epilepsy providers suspecting they may be non-epileptic.
And we may able to capture them on EEG. They'll come to see us so that we can stride to tease out what's, what might one of them be epileptic versus non-epileptic. Make sure they understand how to differentiate and then what is the treatment for the non-epileptic events.
And often what we have to do, sometimes I can't tell them for sure exactly what everything else. But I say, we need to go down both paths. We're gonna continue to treat for epilepsy and continue to work on medications. But it's never gonna hurt to get into counseling and deal with these other things too. So sometimes it's kind of we're going two paths at the same time.
Dr. Mike Patrick: Yeah.
Debbie Terry: And then we have, in the last 3 years, we started to get some referrals for patients from outlining areas who maybe have been diagnosed or suspected. And they will come to see us even though they've not been seen here at Children's before.
And again, if there's a suspicion of non-epileptic events, you know, pretty strong suspicion, it's okay to start with this clinic rather than going to an epilepsy provider first because I can also take care of the epilepsy, you know, evaluate it anyway for the epilepsy.
Dr. Mike Patrick: Yeah. Absolutely. So really, one-stop shopping.
Debbie Terry: Yeah –
Dr. Mike Patrick: Whether it's an epilepsy or –
Debbie Terry: – right. If it's epilepsy –
Dr. Mike Patrick: – or psychogenic event –
Debbie Terry & Dr. Mike Patrick: – Yeah.
Debbie Terry: But as we also said, any child with epilepsy has a high risk for having, you know other comorbidities that Dr. Trott could help us. –
Dr. Mike Patrick: Yeah, yeah, yeah.
Debbie Terry: – So it's never a waste of time.
Dr. Kristen Trott: If that's non-epileptic
Dr. Mike Patrick: Yeah, yeah. And just any other chronic disease –
Debbie Terry: Right.
Dr. Mike Patrick: – I mean there's a lot of mental health stuff that goes one with those –
Dr. Kristen Trott: Right, along with adjustment.
Dr. Mike Patrick: Yeah. And we'll put a link in the Show Notes for this Episode 390 over PediaCast.org. Actually several links for you. One to the epilepsy center here at Nationwide Children's if you're interested learning more or referral whether your family, or a pediatric provider, that information is in there for you.
We also have a page just dedicated to psychogenic non-epileptic events and it includes education, more referral information I put a link to that.
And then particularly for the providers in the crowd, if you're interested in more in-depth of the science and the latest literature surrounding these events, I will put a link to up to day article on the psychogenic non-epileptic seizures for you.
And then some other PediaCast episodes you may be interested in, all about seizures and epilepsy that was Pediacast 256. We talk about seizure action plans in Episode 372. And we talked about Nurse Practitioners also in Episode 317.
So I'll put links to all of those things in the Show Notes over PediaCast.org Episode 390.
So once again thanks so much to our guests, Dr. Dara Albert, Debbie Terry, and Dr. Kristen Trott. All of them with the epilepsy center here at Nationwide Children's. Thanks so much to all of you for being here today.
Dr. Dara Albert, Debbie Terry, & Dr. Kristen Trott: Thank you.
Dr. Mike Patrick: We are back with just enough time to say thanks to all of you for taking time out of your day, making the PediaCast a part of it. I really do appreciate that. Also thanks to our guests this week, Dr. Dara Albert, Pediatric Neurologist, Debbie Terry, Nurse Practitioner. Both of them with our epilepsy center. And Dr. Kristen Trott, Pediatric Psychologist. All of them from Nationwide Children's Hospital.
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