Seizure Action Plan! – PediaCast 372
- Dr Dara Albert stops by the PediaCast Studio to remind us of the ins and outs of epilepsy, including types of seizures, methods of diagnosis, management options and seizure prevention. She also introduces the concept of the seizure action plan—a simple document that can make a big difference for parents, teachers and caregivers of epileptic children. We hope you can join us!
- Seizure Action Plan
- All About Seizures & Epilepsy – PediaCast 256
- Infantile Spasms – PediaCast 281
- Febrile Seizures – PediaCast 312
- Creating a Seizure Action Plan – Epilepsy Foundation
- Seizure Action Plan Template – Epilepsy Foundation
- The Epilepsy Center at Nationwide Children’s
- Medical Marijuana – PediaCast CME 003
- The Downfall of Pompeii (Amazon)
- Scrabble (Amazon)
- Boggle (Amazon)
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. This is Dr. Mike, coming to you from the campus of Nationwide Children's Hospital, which happens to be America's largest children's hospital. We're in Columbus, Ohio.
It is Episode 372 for March 29th, 2017. We're calling this one "Seizure Action Plan". I want to welcome all of you to the program.
What do we mean by seizure action plan? We're going talk about seizures. And we're going to review them in terms of what constitute a seizure — when do you call seizures epilepsy, what causes seizures, how do you diagnose them, how do you treat them?
And we talked about this before but it's been a few years since we really covered the nuts and bolts of seizures. We've also, in the past, talked about infantile spasms, which is a specific type of seizure. We've talked about febrile seizures, seizures with fever in young kids many times on the show.
And we even covered marijuana and the controversial use of marijuana in terms of treating seizures. We've talked about that before, too. But we haven't covered seizures action plan in the past.
And that's because they're sort of a new concept and the idea is a great one. In fact, it's kind of surprising that it's sort of a new concept. Although, someone's probably going to write in and be like, "No, we were doing seizure action plan ten years ago." But to my knowledge, they're new. And we've not covered them here before.
And what it boils down to is when a kid has a seizure, it can be really anxiety-provoking for the caregiver. So you're parent, maybe a grandparent, baby sitter, daycare worker, teacher, coach. Kids with seizure disorders go about life and interact with lots of different people. And so, when a kid has a seizure the people that are around, you can sort of freeze up.
And even if you think you're prepared because you know particular child has a seizure disorder, it can be kind of scary. And so, it's nice when you can look at the document that says, "Okay, child's having a seizure. Here's what you do." And it's customed for that particular kiddo.
So, we're going to talk about how you come up with the seizure action plan — what are the important components of one, what resources can you hook up that will give you a template for creating one of these?
So, an important program I think for parents who have kids with a seizure disorder or epilepsy, but also for anyone who cares for children. You know, you may have the opportunity to care for a kid who has a seizure disorder. So, it'll be nice to know that a seizure action plan exists so you can talk to the family. If they don't have one, hooking them up with the resources that they need to create a seizure action plan.
And we have the perfect guest to talk about all of these. Dr. Dara Albert is with me today. She's a pediatric neurologists here at Nationwide Children's and she has a particular passion for providing comfort and reassurance to families and caregivers through the development of a seizure action plan. So, she's going to stop by and talk with us.
Before we get to her, you may have noticed that we did not have a show last week. That's because I was taking the advice of a very wise man, Ferris Bueller, who once said, "Life moves pretty fast, and if you don't stop and look around once in a while, you could miss it." So we're on vacation with the family down in Central Florida, trying to stop and look around and not miss life.
And it's an important thing to do. Our lives can be so busy and hectic, and as we're trying to maintain that work-life balance, I just think that taking time off with your kids is so important for creating memories and then remembering memories down the road. And it's just an important thing to do.
So don't let life move fast pass you if you're not a vacation taker. Please take the time out with your kids if you can. And it doesn't have to be a big trip to Central Florida. It may just be heading for the weekend to a nearby town and exploring the sights and doing some fun things together. So, please take my advice and take a break. Take a vacation here and there with your kids and to make some memories, very important thing to do.
For us, my daughter was 12 when I start to doing PediaCast, and she's the intro and outro voice that you hear on the program. She was 12 , when we started this thing. And she's 22 now and going to get married this coming September. So, parents out there with little kids at home, it goes fast, I'm telling you. And if you don't take time out to make those memories, they just aren't going to happen. So make sure you do that.
So, we're here in Central Florida and the Beauty and the Beast live action movie was premiering while we're down there. And back when my kids were young — so when my daughter was 12 and we're starting this — Beauty and the Beast was one of their favorite Disney movies. They love the songs, love the video, and really enjoyed this.
When we heard that the new Beauty and the Beast live action movie was coming out, and we knew we were going to be in Mickey's stamping grounds… And those of you who have listened to the program for a long time know that we have friends and family down there. We visit Central Florida frequently and we used to actually produce the show from Orlando for a few years back in the 2008 to 210 range.
So, it's a special place for us. And we were heading down, family vacation, Beauty and the Beast live action premiering. We're at Disney. We thought, this is going to be great, a great place to actually see this.
So, we bought our tickets ahead of time because we thought there might some other people who have the same idea. We got our tickets and we were excited. We head to the theatre and the place is packed, every seat taken for the premiere at the Disney Springs.
And right before the show is about to start, the lights come up, the house lights, so bright lights. And I'm thinking, "Oh, boy. This is not going to be a happy crowd when they tell that the projector is broken." I mean, there were people dressed up like Belle. It was a huge event, but normal theater prices.
But instead of telling us that the projector was broken, they announced that there's a special guest who wants to introduce the film. Well, it turns out the special guest was Josh Gad, who plays LeFou, Gaston's on compatriot in the show. And he sang a song and introduced and it was just fantastic — the kind of surprise, I guess, that happens when you watch a premiere at Disney.
We were unsuspecting. And like I said, it wasn't a special event. We just paid it regular ticket prices for the program. But it was really fantastic.
And if you remember Beauty and the Beast from your childhood — we're not here to promote movies and put more money on Mickey Mouse's wallet — but it was fantastic show and our family really enjoyed it.
All right, enough about my personal life. Let's move on and we'll talk about seizures and action plans, very important topics with Dr. Dara Albert in just a moment.
I do want to remind you, if you have a topic that you'd like us to talk about, one that's important to you and your family — maybe you have a question or you want to point me in the direction of a news article or a journal article, something you've heard or that you have a question about — feel free to drop a line.
It's easy to get in touch. Just head over to PediaCast.org and look for the Contact link. It's one of the tabs up on the top of the page. It says "Contact Dr. Mike". Click that, it will take you to the contact page, fill up the information, name, where you from, and your comments or your question. And we'll try to get that on the program for you.
Also, I want to remind you, the information presented in every episode of PediaCast is for general educational purposes only. We do not diagnose medical conditions or formulate treatment plans for specific individuals. So, if you have a question about your child's health, it always important to call your doctor and arrange a face-to-face interview and hands-on physical examination.
All right, let's take a quick break. And I will be back to talk more about seizures and action plans. It's coming up right after this.
Dr. Mike Patrick: Dr. Dara Albert is a pediatric neurologist at Nationwide Children's Hospital and an assistant professor of pediatrics and neurology at the Ohio State University College of Medicine. Dr. Albert is passionate about helping kids who suffer from epilepsy and the education of families and caregivers regarding best practices for preventing and treating seizures.
As it turns out, a very helpful tool in the management of epilepsy is the seizure action plan. That's what Dr. Albert's here to talk about today, seizures and action plans.
So let's give a warm PediaCast welcome to Dr. Dara Albert. Thanks so much for stopping by.
Dr. Dara Albert: Hi, Dr. Mike. Thanks so much for having me. It's a real pleasure.
Dr. Mike Patrick: Yeah. Really appreciate taking time to help us all understand this a little better.
Dr. Dara Albert: Absolutely.
Dr. Mike Patrick: So, let's talk first just a reminder, what is a seizure?
Dr. Dara Albert: So, neurologically, a seizure is a episode of excessive discharges coming from the brain. And clinically, it can look like all different kinds of symptoms. So someone might become unconscious. They might fall to the ground. They might have shaking. They might just be staring and unresponsive.
And it typically occurs in paroxysmal episode, meaning that the patient is normal in between, and then they have this episode. And then, they're normal afterwards.
Dr. Mike Patrick: Yeah. So the brain really just starts firing neurons randomly. And depending on which neurons fire, then that will determine what symptoms that you see in terms of if it's motor neurons. Then, you're going to see muscle movement.
Dr. Dara Albert: You got it.
Dr. Mike Patrick: And then sensory neuron, then someone may have hallucinations or smell something, any of those kind of things.
Dr. Dara Albert: Yup, you got it.
Dr. Mike Patrick: Then, at what point do we say a child has epilepsy?
Dr. Dara Albert: So if someone has had two or more seizures that are unprovoked. So someone who has a seizure with a fever that we call febrile seizures, that's doesn't count. But someone who has had two or more seizures that are unprovoked, we consider epilepsy.
Or if someone has had one unprovoked seizure and a risk factor for a second one, such as a tumor or a stroke or something, lesion in the brain or abnormalities on EEG that tell us that they're at high risk for having another seizure.
Dr. Mike Patrick: Then we would call that epilepsy. Or seizure disorder would be another name for it.
Dr. Dara Albert: Right.
Dr. Mike Patrick: And then, there's certain patterns of seizure that we can see so that we can then begin to characterize seizure types. What are some of the types of seizures that kids can have or an adults, too?
Dr. Dara Albert: We like to think of it… There's two kind of broad categories, one being generalized meaning that it's coming from the whole brain at once. And this is a distinction that we can make both by the EEG and clinically. But by definition, if someone's having in generalized seizure, they're going to be unconscious. So the whole brain is affected at once. They're going to lose consciousness.
As opposed to a partial seizure, which is a seizure that originates from one part of the brain. Some other words that we use might be focal or localization-related, meaning that the seizure is coming from one particular part of the brain. And those are the seizures that you might see that affect maybe one side of the body. The patient might be awake. They might be awake but somewhat altered, like seem a little bit confused or dazed and not really responding normally, but they could still potentially be conscious.
So, those are kind of two broad categories of the way we group or classify seizures. And then, we can further categorize based on the characteristics. So as you mentioned before, if the muscles are involved, motor movements, and we would call that motor seizures. You could have a generalized motor seizure or a focal motor seizure.
And then, we kind of describe what the movements are. The classic one that everybody always seen at least in the movies is what we called the generalized tonic-clonic seizure or it used to be called grand mal. So, patient is unconscious, again, because it's generalized. And then, they have tonic stiffening of the body followed by clonic jerks which are jerking movements. And so, that's kind of word we used to describe generalized tonic-clonic.
Dr. Mike Patrick: Yeah. And then when you talk about that old term, grand mal, and then there was another term petit mal or absence seizure, tell us what those are?
Dr. Dara Albert: The terminology for petit mal was refer to smaller seizures. Small bad being the literal translation, right? And that terminology was used for a bunch of different seizures, not just absence.
So absence are very specific type of seizure that are staring spells where the child will suddenly become unresponsive and stare and may have eyelid flattering. Sometimes, they have lips smacking and those kind of movements. But it correlates with a very specific EEG pattern, that's a generalized pattern. Versus, there are other kind of seizures where someone might stare off and be unresponsive. That could be focal or partial seizures, such as someone with a temporal lobe epilepsy that might just have staring spells.
Dr. Mike Patrick: So seizures can really come in all sorts of varieties.
Dr. Dara Albert: Yeah. Many different flavors.
Dr. Mike Patrick: If parents are concerned that their child may have had a seizure really just want your child to be seen, describe what you saw. If you can capture it on, everybody's got a smartphone now, it can show you exactly what it look like.
Dr. Dara Albert: Yes.
Dr. Mike Patrick: Because there are things that really are going to be seizures and others that aren't. So if you have a concerned, talk to your doctor about it and let them know what's going on.
Dr. Dara Albert: Yeah, absolutely. The most important features are… Seizures are typically what we call stereotype, meaning that they look the same every time. So if a child is having an event that happens a few times and it's paroxysmal — meaning that like I said before the child is normal beforehand, and then they have this event and then it goes away, and then they have it again, and it looks exactly the same as the first one — that would be concerning and would warrant further evaluation.
Dr. Mike Patrick: For folks who are interested in lots more information about seizure disorders, I just want to mention a couple of past shows that we have done. And I'm going to put links to these shows in the Show Notes for this episode, 372, over at PediaCast.org. Dr. Anup Patel — another pediatric neurologist here at Nationwide Children's — back in episode 256, talked all about seizures and epilepsy. And that one will really go into the science of seizures and what causes them.
And so, if you're interested especially in those generalized tonic-clonic to the grand mal of seizures that folks are most familiar with, you'd want to listen to that episode.
There's another kind of seizure that affects babies called infantile spasms. And those are really important to recognize and treat early because there can be a problem with normal development if those aren't recognize and treated. And so, on Episode 281, Dr. John Mytinger was here to talk about infantile spasm.
And then, PediaCast Episode 312, we talked in pretty much detail about febrile seizures or seizures that happen in young children with fevers. And so, folks may want to listen to that episode. Again, I'll put all the links to all of these so you can find it easily.
As we continue along, how common are seizures?
Dr. Dara Albert: Epilepsy affects about 1% of the population. So, anyone of us have a 1% chance that we might develop seizures at some point in our life.
Dr. Mike Patrick: Do you see any difference between boys and girls or is it pretty much equally distributed among the sexes?
Dr. Dara Albert: It's pretty equally distributed. There are some epilepsies, like you brought up infantile spasms, that do seem to have a little bit higher predominance in males. We think because there's some X-linked genes maybe that contribute to that. But overall epilepsy is equal between the sexes.
Dr. Mike Patrick: You do see family clusters, though. Epilepsy turns to run in families, right?
Dr. Dara Albert: Absolutely, yeah. There's lots of genetic causes, some that we've identified specific genes, and then other families that we haven't necessarily identified a gene. But it doesn't tend to run in families.
Dr. Mike Patrick: What are some of the things that can cause a seizure?
Dr. Dara Albert: You mean a provoked seizure or a person who has epilepsy that trigger a seizure?
Dr. Mike Patrick: That is a great distinction.
Dr. Mike Patrick: So, let's start with what causes these neurons that cannot fire on their own to begin with? Or do we know?
Dr. Dara Albert: Well, the answer is probably different in many kids. So, we think of seizures as a symptom of a disorder, not necessarily a disorder itself. And epilepsy would be the disorder.
But seizure can be symptomatic of other things as well. For example, a high fever in a young infant that seizure is a symptom of. Someone who has a brain injury like he's in a bad car accident or something might have a seizure that's symptomatic of the injury itself. So, we would call those symptomatic.
And someone who has epilepsy, so epilepsy is probably multi-factorial in origin. Like I mentioned, there had been some genes that we've identified so there can be some genetic disorder causing the seizures.
Sometimes, it can also be symptomatic of an old injury. So, if baby has a stroke in the perinatal period and that leads some scarring on the brain, then later on when the baby's a little bit older might develop seizures and epilepsy.
So there's many different causes. We cannot think of seizures as the symptom. And then, part of our work up to try and figure out why a child might be having seizures is doing some investigations to figure that out.
Dr. Mike Patrick: Yeah, to look for past injuries maybe and other structural things that could potentially cause it. But often, you don't find anything and then we go back to "It's probably genetic," and, "It just happens, and we don't understand exactly why those neurons fire like they do."
And then, you mentioned — and I should have distinguished a little better — in terms of triggers, so things that can then bring about a seizures in someone whose prone to having them, what are some of those events?
Dr. Dara Albert: So, the three most common, the three big ones are missing doses of medication for a child whose on medicine, sleep deprivation, so not getting enough sleep, and then getting sick. So fevers, colds and infections.
Dr. Mike Patrick: And these things then we'd say they lower the seizure threshold. So it just makes it easier for those folks who are prone to seizures to have a seizures if they're ill, or they're not getting enough sleep at night, or to night taking their medicine for their seizure disorder.
Are there other medicines that kids should avoid that could provoke seizures like over-the-counter things that parents ought to be thinking about not getting their kids who have seizures disorders? Or it's a kind of just differ from one kid to another?
Dr. Dara Albert: Yeah. There isn't necessarily specific list. There are medications out there that kind of have that as listed as the potential side effect. But, it's not as though we tell people to avoid specific medicine, unless there's a specific case.
Dr. Mike Patrick: So, if a kid gets an antihistamine medicine and they've had seizures after having that in the past, you might want to avoid those in the future, but not necessarily, universally, avoid it for all kids.
Dr. Dara Albert: Yeah. Yeah.
Dr. Mike Patrick: Great. Love that practical approach.
What about flickering or flashing lights or playing video games?
Dr. Dara Albert: Yeah, good question.
Dr. Mike Patrick: Sometimes, there'll be a warning like "This can cause seizures." What's with that?
Dr. Dara Albert: So, there is a percentage of people with specific kinds of epilepsy — usually in the generalized epilepsy — that have what we call photosensitivity. And whenever a child gets an EEG, we always do flashing lights. We put a strobe light in their face. And we can tell based off of their brain waves whether they react to those flashing lights.
Maybe as high of 20% or 30% of patients with generalized epilepsy might have photic response. And those are the kiddos that we would say should avoid the disco and fast flashing lights and that sort of thing.
Dr. Mike Patrick: Yeah. And that's really helpful for parents to understand because on the one hand, you don't want to keep kids from experiences that might be fun and social with other kids, if they don't need to stay away from those. And on the other hand, if you are prone to having seizures with those, you want to know that, too, so that you can avoid it.
Dr. Dara Albert: Right, yeah. I mean with that trigger specifically, we oftentimes, like I said, can tell based on the EEG. And then, an individual person might have other specific trigger so I've met patients who the heat, when it gets really hot outside, that triggers seizures.
Other people can have really weird specific triggers like there's reading epilepsy that people might have seizures from reading. Some very very rare, but unusual, what we call reflex epilepsies.
Dr. Mike Patrick: Yeah, very interesting.
How do you go about then diagnosing epilepsy? And you'd mentioned the EEG and kind of doing the workup for to make sure there's nothing structural that's going on. What does that look like in terms of tests that are done?
Dr. Dara Albert: So, the first and most important part is a good history. So, as you guys say in medical school, that 85% of diagnosis is history, right? So, teasing apart the individual details of the event itself — what was the child doing beforehand? What did the event look like? The sequence of the events, what was the first symptom? How did it progress? And then, what does the child look like afterwards?
There's a lot of funny, unusual spells that kids do that are not seizures but might look like a seizures to an unexperienced person, like a parent or caregiver or something. So, the first part is really making sure that it is actually a seizure.
Dr. Mike Patrick: Yeah, absolutely.
Dr. Dara Albert: And then the second thing we want to figure out is, is this a symptomatic seizure? So is it a seizure caused by an infection, a fever, a head trauma, something else going on? Or is this epilepsy? And, in fact, probably one of the most common cause is for a first-time seizure in a kid is the beginnings of epilepsy. But we can't always tell from the first seizure.
So, then, the next step once we've determine that the event actually was a seizure is to get an EEG, which is the brainwave test that looks at activity. And children who have epilepsy oftentimes, but not always, will have abnormalities on their EEG that tell us that they're a person who's at increased risk for future seizures.
Dr. Mike Patrick: Is brain imaging always necessary to figure this all out? So CT scans or MRI scans, I think a lot of times parents, "When are they get a scan?" Is that something that always happen or not always?
Dr. Dara Albert: Nope, not always. So, in children who have those generalized epilepsies, we tend to think of those as genetic and not caused by some focal abnormality in the brain. So we don't often get an EEG. For example, one of the most common…
Dr. Mike Patrick: Or don't always get a scan.
Dr. Dara Albert: Excuse me, yes.
Dr. Mike Patrick: You always get the EEG.
Dr. Dara Albert: Always get the EEG, don't always get the scan, yeah.
So one of more common epilepsies that we see in kids is the absence epilepsy that you brought up, which is the generalized epilepsy. So the kids has the classic story, classic EEG, we don't need to get an MRI, because we know it's a genetic condition and there's not going to be something structural with the brain.
Dr. Mike Patrick: Yeah. And those tests have risks of their own.
Dr. Dara Albert: Exactly.
Dr. Mike Patrick: So, with CT or CAT scans, there's radiation exposure. And MRIs can take a long time and often needs sedation which can have effects.
Dr. Dara Albert: Yeah, so we want to be choosy who gets one.
Dr. Mike Patrick: Yeah. So we really want to think risks and benefits, as you do this workup and you just want the neurologist that you trust to walk you down the path of what you need to do.
Dr. Dara Albert: Yeah.
Dr. Mike Patrick: And then, once you diagnose a seizure disorder, how do you go about treating it?
Dr. Dara Albert: So, treatment is medication, first line. Right now, in 2017, we have about 30 different seizure medicines.
Dr. Mike Patrick: There are a lot of them.
Dr. Dara Albert: And counting. Yes, new ones are coming out all the time. So, we try and make an educated decision based on the seizure type and the other characteristics of the patient. We try and pick the best medication that we think for that patient. And start there.
And then, about three-quarters or so, somewhere between 60%, 75% of patients are going to respond to the first medication. If they fail the first medicine because they continue to have seizures, then we have to move on to a second medicine. Chances are probably about 10% to 15% that we're going to be all get them seizure-free.
Once someone has failed two medications and failure because they continue to have seizures, not because they have side-effects, then we consider them what we call medically-resistant or refractory or intractable. All these words are synonymous.
And that's when we start to think about other kinds of treatment such as epilepsy surgery. There is implantable devices. And there are special diets that we try.
Dr. Mike Patrick: Yeah. And marijuana, one of those things. Everybody is talking about medical marijuana. We actually did a show on that in the past, too.
Dr. Dara Albert: With Dr. Patel?
Dr. Mike Patrick: Yes. Yes, with him on our PediaCastCME program, so folks want to know more about that. But those are the exception really. I mean most kids are treated well with the standard medications that are out there.
Dr. Dara Albert: Yeah, yeah, fortunately, so.
Dr. Mike Patrick: One of the things that you had mentioned was the implantable like a vagus nerve stimulator. Tell us a little bit more about that, because I've actually come across, in working in urgent care, where a parent may have a seizure disorder and they have one of these with the magnet. And it's good I think for folks to know about this.
Dr. Dara Albert: Yeah, absolutely. This has been around for a couple of decades now. It's a small implantable device about the size of a pacemaker or so. And it's implanted usually in the chest, so similar location of where a pacemaker would be. And there's a little wire that comes up and attaches to the vagus nerve which is a big nerve that runs through your neck and from the brain down. It sends impulses up.
And it does two things. We set a repetitive impulse throughout the day. Every couple of minutes, it sends up an impulse and we can manipulate the dose that we give. And then, it also comes with a magnet where if a patient where to have a seizure, you take the magnet and swipe and that sends an extra impulse up the stimulator.
Dr. Mike Patrick: Which can help stop the seizure.
Dr. Dara Albert: Potentially, yeah.
Dr. Mike Patrick: We don't understand exactly how this works, right?
Dr. Dara Albert: No, yeah. Unfortunately, like a lot of things in medicine, we know that it works some of the time but we don't necessarily have great mechanism of action.
Dr. Mike Patrick: That makes you wonder how the first person figured it out that this is going to something that will work, but we're glad that they did.
Dr. Dara Albert: Yeah, absolutely.
Dr. Mike Patrick: So, these are ways that we can prevent seizures in someone who is known to have a seizure disorder. What about a seizure itself? You mentioned swiping the magnet if you have an implantable device, but most kids who have a seizure aren't going to have one of those. What do you do to treat a seizure that is actively occurring?
Dr. Dara Albert: So, good news is that most seizures are going to stop on their own in less than five minutes. The most important thing is first aid. Making sure that the child is safe. Want to make sure that they're kind of lay them on the ground, make sure that there's nothing around them that are going to bang into and hurt themselves.
We tell parents to roll them on their side, it doesn't matter which side. It just so that way, if they have a lot of foaming and secretions, they don't swallow it into their lungs but rather it comes out.
And then wanting to watch the clock. So, when it's your child seizing, it's going to feel like an eternity, but in reality like I said most are less than five minutes. If the seizure progresses longer than five minutes, that's when we give rescue medications. And these are medications that we typically prescribe in our clinic preemptively so that way a family will have it at home.
And there's a couple of different versions that we use. Here at Children's, we favor an intranasal medication call midazolam. It's a liquid version and then we have a little atomizer that converts it to a mist that they would spray up the nose as treatment. There's also a rectal medication that's commercially available called Diastat given for the same indication.
Dr. Mike Patrick: And these are very easy to give, just a squirt up the nose or the suppository in the rectum to give. So, you don't have to fool around in trying to get an IV in or giving a shot. And, of course, it's not practical to give something by mouth in the child who is seizing.
And that's one of the misconceptions, too, that you have to make sure they don't swallow their tongue.
Dr. Dara Albert: Yeah. You can't swallow your tongue, it's attached.
Dr. Mike Patrick: Yes.
Dr. Mike Patrick: It's great. And you could become injured yourself with the child biting down and…
Dr. Dara Albert: Or break some teeth.
Dr. Mike Patrick: Yeah.
Dr. Dara Albert: So yeah, never stick anything in a kid's mouth while they're seizing.
Dr. Mike Patrick: Great. Great advice.
So then, let's talk about the seizure action plan. Because I think talking about the treatment of the seizure that's actively happening, that's really when the seizure action plan comes into play. Tell us what it is?
Dr. Dara Albert: Yeah. So, we developed here what we call the Seizure Action Plan. There's many different versions of it out there. But actually, Dr. Patel and some colleagues put together the version that we use here that was modeled after an asthma action plan. So asthma, being a similar chronic condition that has both maintenance therapy and then also flare-ups, where you need to know what to do when the child is having trouble in breathing, wheezing, et cetera.
So, along the same lines, we developed the seizure the action plan that has the stoplight image. So there's the green zone. When everything is going well, these are the things that parents need to do for their child, which is take their medicine, know who their neurologist is, avoid triggers, that sort of thing.
The yellow zone is when a parent has a concern. So, the child had a brief seizure. They've missed doses of medication and they don't know what to do. They have other questions. The child is not acting normally, something else is going on. That's when we want them to call our office and discuss with the neurologist.
And then, the red zone, that's when the child is having a seizure and here's the emergency plan on what to do. The form, the one that we use here is a smart form that build into our electronic health record that the provider can type out or manipulate in clinic.
So we can prescribe a very specific plan for a specific patient. So, for example if they have a VNS, it'll say on there, "After X number of minutes of seizures, swipe the magnet. If the seizure continues for five minutes, give such and such emergency medication. Here's the dose. If seizure continues beyond that, call 911." We can kind of tailor it to what the patient needs.
Dr. Mike Patrick: Really a recipe that folks can follow.
Dr. Dara Albert: Yeah.
Dr. Mike Patrick: Whenever there's an emergent situation, even folks who are trained and really feel like under a circumstance where someone is just quizzing them, they're going to come up with the right answer, "Look, this is what we need to do." But when there is actually a child seizing in front of you and it's not something that you deal with on a daily basis, it is easy to freeze. And it's nice to have a form that you can look at and say, "Okay, there is some comfort and reassurance here and this is what I do."
Dr. Dara Albert: That's the idea.
Dr. Mike Patrick: Who should have a copy of the Seizure Action Plan?
Dr. Dara Albert: We think that every patient who has seizures should have an action plan. Typically what we do in our clinic is we print off at least a couple of copies. We give one to the parents and recommend that they stick it on the fridge, give it to baby sitters, to the grandparents, to the aunts or uncles, whoever else the child kind of interacts with.
And, really, it's almost ideal for those other people. We do a lot of education in our clinic with the parents who are usually the ones there, right? And we talk about what to do in case of seizures. So, we'd like to think that they have some idea what to do. They can envision if the child were home with the baby sitter or something, they might not be as comfortable with these medications or what to do.
So, we kind of geared towards everybody who comes in contact with the child. We also want the schools to have an action plan. As of this moment, we're having some discussion with the Columbus City schools and schools in the region about which action plan is most appropriate.
So, the one that I described includes a lot of maintenance stuff, the daily medications, the triggers, blah, blah, blah that the school aren't necessary all that interested in. They kind of want the meat of the matter, which is what do I do when the kid has seizure in front of me? So, we're currently in the process of revamping things and getting something a little bit more specific for what the schools are going to need.
Dr. Mike Patrick: And really anyone who has contact with the child, who could potentially be there when they have a seizure, you sort of want that action plan in their hands in one form or another, whatever is the most convenient.
And of course, we have a lot of listeners on PediaCast who Nationwide Children's and our neurology program is not necessarily the one that's closest to them. So we have listeners in all 50 US states and all around the world. And I know the Epilepsy Foundation has an action plan which is an older one and isn't quite as pretty as the green light, yellow light, red light. But I think still would be helpful for folks who are looking for a template in their local area that they could then hand off to caregivers and school folks and even employers, if a teenager, friends that has a seizure disorder.
Dr. Dara Albert: Yeah, absolutely.
Dr. Mike Patrick: And as you describe the components of their seizure action plan that they have, it's basically the same stuff. Basic information about the kid — this is what their seizures typically look like, here's the first aid stuff that you do, here's the rescue medicine, here's who you call.
So, for folks who are interested in that, I will put a link in the Show Notes for the Epilepsy Foundation. They have a site that explains how to create a seizure action plan and then that seizure action plan template the folks can find. And that'll be in the Show Notes for this episode, 372, over at PediaCast.org.
I think the most important thing is that the style and presentation is understandable in an emergency, like I can quickly read this and understand what it is I'm supposed to do.
Dr. Dara Albert: Right, exactly.
Dr. Mike Patrick: Now, in terms of improving outcomes, are they any studies going on that shows that having a seizure action plan actually helps?
Dr. Dara Albert: So, it's a really good question. I'm glad you asked. So, yes. There had been a few other studies out there that are published that kind of show mixed results, that maybe these aren't all that beneficial. But we actually undertook something very unique here. We did a randomized controlled trial. And we randomized 50 kids in our epilepsy clinic to receive an action plan, this specific one that I'm talking about, and 50 kids to not receive one for a year, for 12 months.
And both of them received standard of care treatment, the same counseling and education that we do in clinic, and the same prescription and everything else. The only difference was one group got the sheet of paper and the other group did not. And this is still unpublished preliminary data, although we did present it at the American Epilepsy Society in December.
But we were able to show actually a marginal but statistically significant difference in ER visits, hospitalizations for patients who receive this AP, the Action Plan, and also an increase in show rates to their neurology clinic visits, which is kind of interesting. We think maybe that shows that there's better engagement with the neurology department base off of that.
We also measured some quality of life measures. So we did a survey. And unfortunately, we weren't really able to show a big difference between the two groups on quality of life.
Dr. Mike Patrick: So, what do you mean by quality of life. What sort of, in parameters, were you looking at?
Dr. Dara Albert: So, we did a survey that's called the impact of families. And then, we modified it and add a couple of extra questions to fit epilepsy, what we were kind of looking for. And it measures the impact of epilepsy on the sibling relationship, on the finances, the parent perception, parental anxiety, those sorts of quality of life measures.
Dr. Mike Patrick: So, having an action plan according to your data and then putting that into why does it makes sense, it may keep kids out of the hospital or the emergency department because the parents have the plan. They do what they're supposed to do. They probably get in touch with their primary care doctor or the neurologist to say, "Hey, they had a seizure. This is what it looked like. This is what we gave." And then, someone gives them some reassurance, like, "Okay, looks good now. So, we'll see you tomorrow." Maybe kind of check in on them, and then they're not rushing off to the emergency department.
Dr. Dara Albert: Yeah.
Dr. Mike Patrick: So that's kind of what's happening behind the data.
Dr. Dara Albert: That's what we'd like to thank, anyway.
Dr. Mike Patrick: Hopefully. And then, on the flipside of it, showing up for appointments, maybe they're more invested in their child's seizure disorder. And so then, they got the action the plan, they're letting other people know. And so, by being more invested, you're maybe more likely to go see your doctor.
And again, we can only see the data of the results. But I was like to put a practical twist on why do we think that we're seeing that. And then I think another important thing is just the comfort of the person…
Dr. Dara Albert: Knowing what to do?
Dr. Mike Patrick: Yeah. So that the person who, and even if it doesn't make a difference in outcome in terms of the kids disease, but in terms of the comfort of people around the child, there's something to be said for that, too. Wouldn't you agree?
Dr. Dara Albert: Absolutely. Absolutely. And other studies have definitely shown there is high level of anxiety around families who have children with epilepsy, and that having better education and better understanding of the epilepsy can help ease some of those anxieties.
Dr. Mike Patrick: Yeah, absolutely. Tell us a little bit more about the Epilepsy Center here at Nationwide Children's. Those who are in our service area, what are some of the things that you do in the clinic, diseases that you treat, and resources, staff, that sort of thing?
Dr. Dara Albert: Dr. Patel, actually, has been instrumental in developing a really fantastic comprehensive Epilepsy Center, which is mainly in our clinic. It's all day Thursday is the day, we're working on expanding that.
In clinic, we have multiple people who are dedicated to treating kids with epilepsy. So the first off, we have all of our epileptologists which are the doctors who specialize in epilepsy. There's eight of us. We have three epilepsy nurse practitioners that work with us.
And then, we also have neuropsychology. We have social workers. We're working on getting psychiatry involved. We have a representative from the Epilepsy Foundation of Ohio. We have an epilepsy pharmacist who specializes in epilepsy. We have a geneticist.
So all of these different people available to us right there in clinic to help us give the best possible treatment.
Dr. Mike Patrick: So really that multi-disciplinary team approach. And when a child comes to the center, all those resources are available to see them there and then, when they need them.
And then, you also have some specific clinics. So, New Onset Seizure Clinic, for instance, that just sees kids who have a seizure for the first time.
And the Complex Epilepsy Clinic for those who the standard aren't working, and so, they're the ones who maybe candidates for surgery for the seizures, the implantable devices, or the medical marijuana.
And then, the Infantile Spasms Clinic. So, really even specialized clinics within the center as well, correct?
Dr. Dara Albert: Yeah, you said it.
Dr. Mike Patrick: And we'll put a link in the Show Notes for folks who are interested in more information about the Epilepsy Center here in Nationwide Children's again in the Show Notes for this episode, 372, over at PediaCast.org.
All right. I have one more question for you.
Dr. Dara Albert: Shoot.
Dr. Mike Patrick: And this is one that… I asked guest awhile back and then I stop doing it. And I'm not quite sure why we stopped but I've had some folks say, "Hey, I miss you asking this question." And that is just ideas on fun things that families can do together to just have some fun, make some memories. Especially this time of the year in Central Ohio, even though it's officially spring, it doesn't really feel like spring yet.
Dr. Dara Albert: It sure doesn't.
Dr. Mike Patrick: It's cloudy and cold and rainy and a great time to play games with your kids in the house. So, what are your favorite games? And do you have any recommendations for parents thinking about playing a game with their kids?
Dr. Dara Albert: Sure. I've always liked board games. So Scrabble has always been one of my favorites. Another one I really like is Boggle, which is also kind of a word-finding game, a couple of letters or so.
Dr. Mike Patrick: Yeah. And really for the older kids and even for the new readers, in terms of really boosting their literacy and word recognition. And then it's always fun to look and see, "Is that really a word?"
Dr. Dara Albert: Yes.
Dr. Mike Patrick: Like with the Scrabble dictionary. Especially if you're playing with an advance player, right ?
Dr. Dara Albert: Mm-hmm.
Dr. Mike Patrick: Yeah, those are fun. Our family found a new board game. And we came upon it — I've mentioned it on this program before and there's lots of these kind of places and cities all across America — but a game store where you can actually go in, and they have tables set up and you can play the games.
Dr. Dara Albert:
Dr. Mike Patrick: They have like trial versions of them. And so, we just by happenstance came across one called the Downfall of Pompeii. And it's really a fun game and it doesn't take too long to play.
But the basic thing is you have a map of the city of Pompeii and Vesuvius is about ready to erupt. And so you have to get everybody out. And it's a really fun game. Just trying to get all your peeps out before the volcano explodes.
Dr. Dara Albert: Haven't heard of that one. I have to look for it.
Dr. Mike Patrick: Yeah. It is really fun. And I'll put a link to it in the Show Notes so people can find it. But it's one we've been playing and having a lot of fun with called again the Downfall of Pompeii.
So keep playing those games with your kids until it gets warmer and you can get outside and play.
Dr. Dara Albert: Yeah, absolutely.
Dr. Mike Patrick: All right, well, Dr. Dara Albert, pediatric neurologist here at Nationwide Children's, I really appreciate your stopping by and chatting with us today.
Dr. Dara Albert: Thanks so much for having me.
Dr. Mike Patrick: All right, we are back with just enough time to say thanks to all of you for taking time out of your day and making PediaCast a part of it. Really do appreciate that.
Also thanks to Dr. Dara Albert, pediatric neurologist here at Nationwide Children's. Really appreciate her stopping by and sharing her knowledge about seizures and action plans.
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