All About Seizures & Epilepsy – PediaCast 256
Dr Anup Patel joins Dr Mike in the Pediacast Studio for a nuts and bolts approach to seizures and epilepsy. We cover the cause, diagnosis and medical management of these disorders. What should parents do when their child has a seizure? What are febrile seizures and are they a cause for alarm? All this… plus a look at cutting-edge surgical treatment for children with epilepsy.
- Febrile Seizures
- Seizure Treatment
- Epilepsy Surgery
- My Child Had a Seizure. Now What Do I Do?
- Seizures and Epilepsy in Children – NCH Health Library
- Epilepsy Center at Nationwide Children’s
- NCH Epilepsy Center – Facebook
- Dr Patel on Twitter – @PedsEpilepsyDoc
CONTACT DR MIKE – Ask Questions, Suggest Show Topics
CONNECT with a pediatric specialist from Nationwide Children’s – Referrals and Appointments
This is PediaCast
Speaker: Welcome to PediaCast, a pediatric podcast for parents. And now direct from the campus at Nationwide Children’s, here is your host, Dr. Mike.
Dr. Mike Patrick: Hello everyone and welcome once again to PediaCast. It is a pediatric podcast for moms and dads. This is Dr. Mike coming to you from the campus of Nationwide Children’s Hospital in Columbus, Ohio. It is episode 256 for June 12th, 2013. We’re calling this one “All About Seizures and Epilepsy”. So I would like to welcome all of you to the show.
We have another nuts and bolts edition of the program today. This time, dealing with seizures and epilepsy. Now, I know seizures in word are scary and while the vast majority of kids recover from seizure just fine, the fact that doesn’t lessen their scariness.
And I remember when I was a pediatric resident. My daughter was 18 months old, she is 18 years old now, time flies. But I remember on the night before we move from our apartment to our first house, so everything was packed up, including our thermometer and children’s Tylenol. Of course that’s the night my daughter decides to get sick. You have to understand, my daughter, Katie, was not really a cuddly baby. So when she was sick, I was sort of nice in a very selfish because she would actually sit still on your lap and cuddle. We were chasing around the place, if you know what I mean. So, I get home from a full day at the hospital. I find Katie not feeling well and asleep at my wife’s arms. Of course all of the pots and pans and dishes and pans and silverware were packed away. And we had planned dinner out as a family. But my wife, ever the servant, because I had a full day at work and because Katie was sick. She says, “Won’t you stay here with Katie and I’ll run and pick up dinner”.
So I settled into a glider. My wife hands Katie over. She leaves to pick up dinner. And honestly I’m loving life with my sick 18 month old snuggled into my lap, again, because here snuggling days had long been over at that point. So of course, the sooner than Karen leaves the house, I noticed Katie is starting to feel pretty warm. And again no thermometer, no Tylenol. You can see where this is heading.
So she is still asleep and I’m still rocking her and then suddenly she wakes up. She makes a little squeal. Her eyes roll back in her head and she gets stiff and shaky. She’s having a seizure. And I’m all alone with her on my lap. all of her worldly belongings are packed in boxes. And of course there were no cellphones in those days either. So in the end, into that brief uncomplicated febrile seizure, last no more than a couple of minutes, but of course it seemed much longer it always does.
And here I am a doctor, well a pediatric resident. And it freaked me out. So I can imagine how a parent feels with no medical training when it’s their child in their house which your child in your house, you are going to freak out. And I totally understand why and that’s why I say that a seizure are scary.
Now, in my daughter’s case, the seizure stopped at its own. Karen, my wife, got home with, I think we had KFC that night. I still remember because it was such a jolt. And she went back out for children’s Tylenol and although she was a bit shaken when I calmly told her Katie had a brief seizure. She wanted to call 911 then and there or drive Katie to the nearest emergency department. Instead, I did call our pediatrician because I was a young doctor. And I wanted to make sure we were doing the right thing. And by that time Katie was sleepy. She wasn’t seizing anymore. We made arrangements for an appointment for her to see our doctor in the morning. And she ended up having a viral upper respiratory illness and an ear infection. And her convulsion was a febrile seizure. And to this day, she has never seized again.
So that’s my personal experience at home with seizures. Of course through the years, I’ve seen lots of kids with febrile seizures and non-febrile seizures and epilepsy. And it always holds true that seizures freaks parents out. And I think the main reason why, is moms and dads don’t really know much about them. And you feel like you’ve lost control when your child is seizing.
So, today we are going to demystify seizures and epilepsy for you. We are going to talk about the cause of seizures. What they look like, what to expect, what you should do if your child is having a seizure at home. We will look at the differential diagnosis and work up procedures, medical management and cutting edge surgical procedures. Cutting edge, I like that. We’ll also consider long term outlook for kids with epilepsy. Do they outgrow seizures or take seizures with them into adulthood. We’ll consider that question as well.
Now, admittedly, I’m not an expert on seizures. So I do have a great studio guest lined up today to help me out. Dr. Anet Patel is a Pediatric Neurologist here at Nationwide Children’s.
But before I get to him, I do want to remind you, PediaCast is your show. So if you do have a question for me that you’d like to ask. In fact, our next episode is going to be another “Listener Episode” where we will answer your questions. So if you have a question for me, it’s easy to get in touch. Just head over to pediacast.org and click on the Contact Link. You can also, if you have a comment for the show or you want to point me into the direction of a new story, you can use that contact form for that as well.
I also want to remind you that 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 concern about your child’s health, be sure to call your doctor to arrange a face to face interview and hands on physical examination.
All right, let’s take a quick break and I’ll be back with Dr. Patel right after this.
All right, we are back. Dr. Anup Patel is Pediatric Neurologist at Nationwide Children’s Hospital. And an Assistant Professor of Pediatrics at the Ohio State University, College of Medicine. He is the Associate Director of the Child Neurology Residency Program and Director of the Complex Epilepsy Clinic.
His clinical interest include the work up of new on set seizures and the management of complex epilepsy. He is also involved with quality improvement and the intra operative monitoring of patients during epilepsy surgery. All of which makes Dr. Patel an excellent candidate to share his knowledge of seizures and epilepsy with you, the PediaCast audience. So let’s give a warm welcome to Dr. Patel.
Welcome to the program.
Dr. Anup Patel: Thank you for having me.
Dr. Mike Patrick: Really, really appreciate you stopping by. Let’s get right into it cause there is a lot to cover. I think a good place to start is, what is a simple definition of a seizure?
Dr. Anup Patel: Yeah, that’s a great question. What I like to say, it’s just extra activity of brain cells. And depending on where that extra activity or excited activity is coming from, is what your seizure will look like.
Dr. Mike Patrick: So, based on where that activity is coming from, we can sort of differentiate seizures into different broad types.
Dr. Anup Patel: Absolutely.
Dr. Mike Patrick: So, one of the ones I think most people think about when they hear the word seizure is a generalized tonic-clonic seizure or grand mal seizure, what is that?
Dr. Anup Patel: And yeah, that’s a term, generalized tonic-clonic is a term that we used to help describe what the parent or the patient is undergoing at that time. So what the parent is seeing. And generalized, meaning that, it doesn’t have a specific area of the brain where it starts. It started all over. And then tonic means stiffness and clonic is jerking.
So that’s the typical event that people associate seizures with it. You see somebody and they’re stiff and they’re jerking and all of their arms and legs. And it can be very, very scary. The reality is though, that’s only one type of seizure. So there’s plenty and many that we see obviously in our daily basis. That it looked very different from that description.
Dr. Mike Patrick: Sure. Now when you have a generalized seizure, so, it’s really the whole brain is involved. Most of these folks are going to have loss of consciousness.
Dr. Anup Patel: Absolutely. Yeah, actually that’s one of the hallmark symptoms that we see with a generalized tonic-clonic or a generalized seizure in general is. Because your whole brain is affected, that means you are not able to be aware of your surrounding or what’s going on.
Dr. Mike Patrick: Sure. Now, another type of generalized seizure would be a myoclonic seizure. What exactly is that?
Dr. Anup Patel: Yes. So a myoclonic seizure is just when a person has a very brief jerk of their muscles. And it’s related to a seizure. Meaning of activity coming from the brain. Now what’s interesting I usually use the analogy that it’s like having a sleep jerk, which we’ve all have. But imagine having that sleep jerk in the daytime.
And usually when you see those seizure are like when you are brushing your teeth or eating breakfast and your spoon will flinch out of your hand while you’re eating breakfast. And you’re thinking yourself, what did just happen? Or I used to say, in the first couple of periods of school when you’re writing and the pencil jerks out of your hand. Well, nobody uses pencil anymore. So that analogy is bad by the way. But that’s usually when you see that type of seizure.
Dr. Mike Patrick: Now, you mentioned, like if your leg jerks as your falling asleep. Is that really a seizure?
Dr. Anup Patel: No. So, when you are falling asleep and your legs jerk, that’s a normal activity which we call sleep myoclonus. And that is very different. And the major difference is, in that activity is that normal phenomenon, no problems what so ever. When you have a mild clonic seizure or myoclonic jerk, it’s at your brain cells caused you and forced that activity by being over active and cause that jerk to occur.
So, those are the major differences.
Dr. Mike Patrick: Very interesting. Now, another type of generalized seizure is an atonic seizure, where folks will kind of just loose muscle tone. What’s up with that?
Dr. Anup Patel: Yeah. That’s one of the scarier types of seizures because they’ll fall straight to the ground. And they do it very hard and because it’s a generalized type of seizure, they are not aware of the surroundings, so they can’t protect themselves like you and I would if we were to fall. And because of that, there’s a lot of injury that occurs. And often kids… And you see that type of seizure by the way in children a lot. With the condition, we call that Lennox-Gastaut Syndrome.
And all that means, Lennox-Gastaut Syndrome means that you have more than one seizure type. You have a certain pattern on your EEG. And you have delayed learning. But of that, atonic seizures are a very major component of that. Most of them have that type of seizure. So often those are the ones that have to end up wearing helmets for their seizures. Because they need to protect their skull and their head if they fall really hard.
Dr. Mike Patrick: Sometimes you’ll see kids with developmental problems. Parents will see them out at the mall or when doing something out and about. And they’ll see a kid with protective head gear on them. Sure, sometimes why the parents are putting them through that. Well, now you understand if you would have a kid who would drop all of a sudden, that’s a problem.
Dr. Anup Patel: Yeah. And luckily, it’s not the majority of kids who have seizures. So most children with seizures don’t need to have a helmet, but those kids with that type of seizure should have helmets.
Dr. Mike Patrick: Sure. Another generalized seizure that we talk about are infantile spasms. What are those?
Dr. Anup Patel: An infantile spasm is often very difficult because it’s hard to diagnose at times. What happens with it is little infant anyone under the age of one for that matter, all the way down to one day of age, can have the sudden bending of their body and their arms kind of flail out. And it’s a quick type of jerk. And they’re so brief and quick that often parents can miss them, and that’s understandable.
They also sometimes look like reflux, because you can stiffen when you reflux or kind of burp very loud or kind of jerk when you burp. And that sometimes can be missed and 0:12:02.4 as reflux, but when in fact it’s an infantile spasm.
When that occurs, it’s one of the few times that we really… I call that an epileptic urgency. Because those are the kids that I want or my colleagues need to see within a week or two after they start doing that or at least have somebody evaluate them. And they really all of those need an EEG, which is a type of test that we get called an Electroencephalogram. And that is a mainstay of our helpful diagnosing of seizures and epilepsy. And if there is a certain pattern that matches that kind of bending response, then those children need immediate treatment.
Dr. Mike Patrick: Sure. And that’s one fo those things where… It’s kind of a hallmark there could be something more serious underlying that’s going on. I mean that’s where the urgency comes from.
Dr. Anup Patel: That’s absolutely right. There’s two big parts of the urgency. That there’s something underlying could get going on that needs address and treated. And that treatment is, what we know about treatment is that the earlier you get treated, the better chance of success. And when you do respond to treatment, you have a better outcome long term. You mean that you’re learning or not necessarily be affected if you can respond early enough to treatment.
The other benefit is that, we have the only comprehensive centers for infantile spasms here at Nationwide Children’s Hospital. So we have John Mytinger, one of our epileptologist. So he’s a specific doctor specializes in epilepsy like myself. But his area of expertise is infantile spasms. And that makes us very unique compared to many other institution across the country.
Dr. Mike Patrick: Yup, absolutely. For the folks out there, listen, stick around. Toward the end of the show, we’re going to talk more about how you could get in touch with the Epilepsy Center here at Nationwide Children’s. We’ll have a really easy form that you can fill out to make that connections. So we’ll get to that, coming up.
What about an absent seizure or Petitmal seizure. What are those?
Dr. Anup Patel: That is also a type of generalized seizure. And that’s where a child or even an adult in some cases can have a brief alteration of awareness.
Meanig that they’re talking to you normally and then suddenly they stop. They stare and then they return right back to where they’re going before. So the greatest analogy is that if you have a child and you are talking to them and suddenly they [Silence], and then start talking to you again, just like I did. That could be an absence seizure.
Dr. Mike Patrick: The difference is like someone hit the pause button.
Dr. Anup Patel: Exactly, exactly. And the reason why it was called Petitmal is the French 0:14:23.9 in a name of a lot of these seizure. And petty was small and mal is related to the seizure activity like we saw with grandmal. And so that’s where that name came from. But the hard thing is for parent sometimes to differentiate is, to be able to differentiate between a kid who normally stares off, which children likes to do. They can zone off. Versus absence seizure. And so that’s why the EEG which I referred to earlier can be very helpful to distinguish those tw events.
Dr. Mike Patrick: Now, with these kind of seizures, a lot of times, teachers are the ones who pick it up. So, when it comes to teacher telling the parents that a parent doesn’t want to hear. Sometimes parent can get defensive and “Oh, that’s not my kid, must be something wrong with the teacher”.
But I would say, if a teacher come to a parent and with this kind of things where the kid seems like he is pausing or not paying attention briefly, the parent should take that seriously.
Dr. Anup Patel: I would definitely agree with that. What I would recommend in that instance is to have a conversation with your pediatrician or primary care provider to see if an EEG is needed or what further steps may be necessary. We really try to do a lot of education to our community. In our school specifically, and so teachers have either experienced personally with our students or they’ve heard our lectures or our informal education information sessions. That allow them to be able to look for this and recognize it.
So a lot of this kids will be labeled as ADD or ADHD. And even though ADD and ADHD is far more common than kids with absence epilepsy or absence seizures. It’s still something to think about in the sense that if your teacher says, “Well, I do have experience with ADD or ADHD and this looks different”.
Then, perhaps and EEG would be necessary at that time.
Dr. Mike Patrick: Sure. Now all of the seizures that we talked about so far are generalized seizures. So again the whole brain is involved in this and it’s because of extra activity of the brain that’s not voluntary. So the next group of seizures that we talk about are partial or focal seizures. It’s just sort of a simple partial or focal seizure, what is that.
Dr. Anup Patel: So the older terminology tends to refer to simple and complex partial seizures. Now, we are trying to kind of go into new classification and terminology where we just refer to that as focal seizure. But when we used to say simple partial seizure, what we meant was that part of your body would be affected and would have epileptic seizure activity, but you were still able to maintain awareness.
Well some people would ask “How is that even possible?”
Well, if the area of the brain that is over active is so small. And it’s not affecting the area that allow you to be alert or observant, then it’s possible that you’re… For example, right arm could 0:17:10.2 but you are totally aware of the entire event. And the complex partial seizure is one where the activity of the brain spread enough to where you are altered. So you are very similar to the general seizure where your consciousness is altered. You are not able to pay attention. You are not aware of the event that’s occurring. And that’s because that activity still started in one place and they only affect one part of your body. But a spread to a large enough area to affect your ability to pay attention and know what is going on.
Dr. Mike Patrick: Sure. Now with the simple partial or focal seizures, where just one part of the brain where it’s not spreading and you don’t have altered consciousness. A lot of time we just assume that this is a motor event. But really it could be any part of the brain and it’s possible to have a seizure that’s comprised of sensations or smells or hallucinations, is that….
Dr. Anup Patel: Yeah, that’s absolutely true. One of the biggest things we can see sometimes is it could be the precursor for seizure or actual seizure itself. And when we say hallucinations, what they usually are when they’re related to seizures is like squiggly lines, and not what we call non-form. Meaning that they’ not anything you can really identify when they’re visual or eye hallucinations.
And then also though, you can get other types of hallucinations like the classic is the sensation or smell of burnt rubber. This often either a precursor of a potentially ongoing split mini or focal seizure activity. The third one which is either more rare but can occur is auditory hallucination. And that, it’s not necessarily like somebody is speaking to you or voices or anything specific that you can identify, but certain harsh sounds or unrecognizable sounds that occur randomly.
Potentially, not necessarily even ringing in the ear. I’m talking just audible sounds don’t otherwise associate with anything else.
Dr. Mike Patrick: Yeah, very interesting.
Dr. Anup Patel: Yeah. And that’s really sign that the seizure is coming from the middle portion of your brain.
Dr. Mike Patrick: Now, one other term that I wanted to define, I say up right, we are 20 minutes into the program. We’re still covering definitions. But I think it’s important to get an idea of what each of these seizures are to demystify it.
Dr. Anup Patel: Agree.
Dr. Mike Patrick: Another word that we use is epilepsy. So how is epilepsy different from seizures?
Dr. Anup Patel: That’s probably the best question I get asked on a daily basis. Because it’s important to differentiate. So in epileptic seizure is what we described and talked about in the first 20 minutes, but it doesn’t really tell you much more, so had diagnosis. It’s a clinical event.
Epilepsy is only defined as two or more unprovoked seizures. So when you hear the word epilepsy, many, many parents and also people think, “Oh, my gosh”. they convey that with horrible prognosis and outcome.
In reality, all the word mean is, I have two or more unprovoked seizures. And that’s what I like to make sure everybody understands when they come see us in Nationwide Children’s Hospital
Dr. Mike Patrick: Sure.
Dr. Anup Patel: What the definition of epilepsy is.
Dr. Mike Patrick: Now we’re going to get into the cause of seizures. But when you say unprovoked, you mean there wasn’t anything that you can identify that started it.
Dr. Anup Patel: Yeah. You know as a trigger in the sense of like a febrile seizure or my sugar in my blood counts were low or my sodium was too high.
Dr. Mike Patrick: Yeah, 0:20:33.0 and hit my head.
Dr. Anup Patel: That’s right. That’s a provoked seizure. Where an unprovoked is that it’s out of the blue. Ever doesn’t have a trigger that associated with it in that sense.
Dr. Mike Patrick: Sure. And then another, actually there are a couple other terms too. Status epilepticus. What does status means?
Dr. Anup Patel: Status epilepticus refers to any seizure that’s longer, that’s not going to be stopped. So our technical definition is really after continuous seizure activity of 30 or more minutes. However, us in the real world, tend to use more than 5 minutes. And the reason why is after about five to seven minutes, a seizure is not likely to stop on its own. Meaning, that you’re going to have to give the patient, the child some sort of medicine to help stop that seizure because it’s not going to be able to do that on their own. So we like the practical definition of anything longer than five minutes.
Dr. Mike Patrick: Sure. In researching this show, I came across article after article that said after about five minutes, you start to have damage to neurons…
Dr. Anup Patel: Good question.
Dr. Mike Patrick: Is that the case or is that a myth?
Dr. Anup Patel: It’s more of a myth. The reality is we don’t know exactly what duration or how long a seizure has to happen before damage occurs. But based on all the research that we know, it appears after about 30 or 60 minutes of continuous activity.
But we don’t wait that long, because, like what I said earlier, if it’s not going to stop after five minutes, then why wait. Just get it over with and give the medicine.
Another thing we know is the longer a seizure goes on, it’s less likely to respond to that medicine that we give in emergency or rescue basis. So it’s really important that family, when they see or have a child that’s seizes, although I know it’s very scary that they 0:22:16.3 it. And like what you had said, and even in your own daughter, is it does appear longer that it was.
Dr. Mike Patrick: Yeah, yeah.
Dr. Anup Patel: And it is. It’s very scary and frightening. So I recommend that parents get a watch or clock out and start timing it. Because we really need to know that information.
Dr. Mike Patrick: Yeah, very helpful. Let’s, we’ve kind of screwed in around febrile seizures, let’s talk about those. What is a febrile seizure? Most parents think, “Oh, my child had such a high fever that it damage their brain and they had seizure”. But that’s not the case.
Dr. Anup Patel: Not the case at all. What’s interesting about febrile seizure is that’s it’s a genetic thing. Meaning that some kids are just born and have the tendency to have it. Doesn’t mean that they necessarily had a have inherit that from somebody but that their brain is formed in a sense that very prone to having seizures with certain fevers.
And what I mean by that is that febrile seizure occurs, can occur I guess in children from six months to five years of age. And they have, it’s the rate of the rise of the temperature. Not how high it gets but if my temperature rises very quickly and I have this susceptibility or proneness to having these febrile seizures, then I’m going to have a seizure.
And there has been a lot of great evidence throughout the years in the literature about febrile seizures. And what we know about kids who have had simple febrile seizures is that there is no damage to the brain that occurs. In fact all of those kids are found to be neurologically normal down the road. So there is no increased risk of those problems whatsoever. Nor is there an increased risk of developing epilepsy when you have simple febrile seizures.
Dr. Mike Patrick: Yup. Now there is also such a thing as complex febrile seizures, where the seizure is lasting more than five minutes or they have back to back seizures. Is that just another variant of normal febrile seizures or those kids born likely than to have epilepsy?
Dr. Anup Patel: Yeah, excellent question. So, the reasoned why we kind of separate the kids between simple and complex febrile seizure is, when you look at those other categories like a seizure that was febrile that lasted too long or back to back or just started and ended in one side. Then the risk of those kids ending up in having epilepsy is higher. Now you notice how I said that. It’s not that complex febrile seizure kids have a higher risk of epilepsy, but there is a greater chance that that was an epilepsy that presented that way. So one of the biggest triggers that we see in our epilepsy patient are, is that illness or lower threshold. That’s more likely for you to see during illness or fever when you have epilepsy.
So allowing us to separate those kids allows us to potentially pick up those that are potentially pretending with epilepsy.
Dr. Mike Patrick: So if a parent have heard of a kid who had a febrile seizure and then went on to have epilepsy, that wasn’t probably a true febrile seizure that was more than their first seizure was brought on by their illness and their fever.
Dr. Anup Patel: That’s right. There are a few very rare genetic diseases that they do present kind of combined like that. However, in the case, in the majority of cases, it’s exactly that.
Dr. Mike Patrick: I also want to point out here when I was regaling the audience of my story, of my daughter’s febrile seizure, I was kind of flipping about it. We made an appointment to see the doctor the next day. I do want to point out that I did have the advantage of being a doctor. And I think anyone whose child has a febrile seizure ought to at least call their doctor.
Dr. Anup Patel: I agree.
Dr. Mike Patrick: Because things like meningitis, encephalitis, you could have a seizure and a fever with that. And so you want to know is the kid irritable, do they have a stiff neck. Do they recover fully and so I think it is important even though it’s a febrile seizure and were saying they’re not dangerous if your child has one. Call your doctor.
Dr. Anup Patel: You don’t have to necessarily rush them to the emergency department. But I definitely recommend that they call their doctor.
Dr. Mike Patrick: Now in terms of epilepsy, how common of a problem is this?
Dr. Anup Patel: You know, it’s a lot more common than people realize. So when you look at the epilepsy 1% to 1 1/2% of the world’s population have epilepsy. So you know, if you look at the statistics, like we have what, 7 billion people in the world right now. Do the math, that’s a lot. If taken one step further, if you combine an every patient living in this world with Parkinson’s disease, multiple sclerosis, and cerebral palsy, there are still more people with epilepsy combined. It is very common and it’s one of the things that people don’t’ really recognize about epilepsy, how common it is. So chances are you know somebody who had epilepsy or who has epilepsy or at least been around one.
Dr. Mike Patrick: And I think knowing that provides some comfort for families who are dealing with it at home.
Dr. Anup Patel: Yeah, I like to make sure I share that statistic. Because they know that they are not alone. And there are a lot of resources out there. And that kind of the misnorms are the myths of having epilepsy I like to dispel. Meaning that, just because you’ve been diagnosed or your child or love ones been diagnosed with epilepsy, does not mean that they’re are going to be in a wheel chair, they’re going to have problems long term.
Dr. Mike Patrick: Sure.
Dr. Anup Patel: They are going to have these issues. It’s just all depends on the individual person.
Dr. Mike Patrick: Yup. Do you see any difference in terms of occurrence like male versus female for instance.
Dr. Anup Patel: No, not really. It’s usually pretty much equal between men and women.
Dr. Mike Patrick: And age groups? Any difference there?
Dr. Anup Patel: Yeah, there is a difference. So the most likely time for epilepsy being diagnose is actually children. 0 to 2 years of age. So that’s the highest peak which is why there is so many of us in the field because it’s very common. 25,000 to 40,000 children each year will have their first seizure. So that’s really common. And the second greatest peak or time when you see that now is like over age 60. And that’s reason why is because a lot of people who have had strokes now are living longer which is wonderful. But then that stroke are damaged brain tissue with scar and then sometimes lead to developing epilepsy later in life.
Dr. Mike Patrick: What about different ethnic groups. Do you see a difference in the seizures based on that?
Dr. Anup Patel: No. It affects all race as all ethnicities.
Dr. Mike Patrick: And what about family clusters? Do we think that there is a genetic component to this.
Dr. Anup Patel: Yeah. When we look at epilepsy and what causes epilepsy. I get that question a lot. What causes epilepsy? And there is so many different reasons why somebody could have epilepsy. And one of the major ones is actually genetic or familial. Meaning that they did inherit that from families. So one of the questions we really want to know from our parents and our families are, is there anyone else in the family like this? And it’s hard, because sometimes people don’t remember that they have seizures when they are kids and they’ve outgrown that or they just never talked about it, which I don’t recommend. I really feel it’s important we all get to talk about it. And so that’s an important information because that helps us as the helping doctors to say, “Well, we can help predict what caused your child’s epilepsy or what is leading to that”.
Dr. Mike Patrick: Absolutely. And that kind of closes in to the whole discussion on what does cause epilepsy. And I guess there’s really two things to consider here, what causes the actual disease and then what are triggers that can bring on a seizure for those who have epilepsy. So, let’s talk about the first one first. What are the possibilities of other than genetics of things that could cause a person to have epilepsy.
Dr. Anup Patel: Excellent question. I think one of the major things I like to point out, at least with children, that 70% of children, we actually don’t know what the cause of their epilepsy is. 70%. So if you are a parent and have a child with epilepsy and you come away frustrated because your doctor can’t tell you, that’s the most common reason. Now, are there other causes? Genetic is one that we mentioned. But there are other ones, for example, if your brain is developed in a way that extra tissue is in one area of the brain or it was accidently scarred for some reason, not any fault of the mother or the father, but just as the way the brain developed, then that can be a point of seizure starting.
So, that’s a very common reason why we see kids and adults who end up having seizures or develop epilepsy. That would probably be the third most likely behind unknown and genetic and then that will be the third.
The other causes are a lot even rarer. And those are what we call, because I have another disease that predisposes me to epilepsy. so well call them like metabolic disorders. Meaning that my energy producing cells are off and I have lots of problems and symptoms from it but one of them is seizures. So those are the most common reasons why 0:30:31.2
Dr. Mike Patrick: Sure. And then you mentioned extra tissue in the brain, so like brain tumors? Is that a possibility as well?
Dr. Anup Patel: Yeah, it is a possibility. It’s actually a rare possibility. So one of the things that parents are so afraid of is that “Oh my gosh, my child may have a brain tumor”. And seizures actually not a very common presentation for brain tumor. But it’s on the list. But what I’m talki9ng about is like when we are all born, even before we’re born actually, when we’re formed. Our brain has all this cells and signals that have to go become different areas of your brain.
And if that signal gets mixed up for whatever reason, and tissues goes to the wrong place. It kind of took a detour or took a wrong turn, when it’s camped out in an area where it doesn’t belong. It gets bored. And what happens is it has nothing to do so it starts having seizures. And that is just someting that happens. Parents always asks, “What could I have done to prevent that?’. And there is nothing. It’s just the way for whatever reason the signal got messed up. Just like a rare day where the traffic light goes out. It just happened.
Dr. Mike Patrick: And then what about triggers? So now you have someone who does have epilepsy, what are the kind of things that can bring out a seizure?
Dr. Anup Patel: And this is a very important topic only because we want no seizures to occur. And so we can try to give medicines which I’m sure we’ll talk about, but, what often ask, I get asked or I’d like to talk about is what can I do to help not have seizures. And that’s like the triggers. And so what is out there is very, very common amongst a lot of patients. And the most common trigger is not getting a good night sleep.
So if there is one thing I can ask all my patients and everybody who has epilepsy, get a good night sleep on a regular basis. Cause that’s the number one trigger for you having a seizure. The other trigger is, and a big one, is not taking your medicine. And I know that’s a hard thing to remember. I have a hard time remembering to take my multivitamins. But it’s such an important thing with kids and adults who have seizures. Because it can be a major trigger.
In rare cases, if you have this genetic tendency. The strobe lights that we do in the EEG Lab can trigger your seizures. That’s a very rare phenomenon. And only if that response is triggered during your EEG, are you at risk for those types of seizures.
Dr. Mike Patrick: And it’s not and so with strobe lights, anything that’s a flashing light.
Dr. Anup Patel: It’s a certain flashing light. That can be mimic in various places. Meaning video games, certain video games can trigger that. If trees are evenly spaced while you are driving down the road and the sun is shining through them that can do it.
Dr. Mike Patrick: I remember when the Olympics were in London with the initial television ads they came out, there was a lot of flickering. There were some reports of people having seizures from that.
Dr. Anup Patel: That can be a dangerous phenomenon. Because again if you have that tendency, that could be a big trigger point.
Dr. Mike Patrick: But it’s not common.
Dr. Anup Patel: Very uncommon actually. The other one though I like to discuss is just illness or being ill. So, can you prevent illness? Well, maybe, maybe not. But you can do healthy living to help decrease the chance you’re going to get ill. And that can over all help you have less seizures.
Dr. Mike Patrick: What about stress.
Dr. Anup Patel: So stress is a unique one. So stress doesn’t directly cause or trigger seizures in most people. In very rare minority it can. However, most people don’t. Indirectly, stress can cause you to have less sleep and then that going to have you have what, more seizures. So indirectly it is a problem.
Dr. Mike Patrick: And then what about medications? And especially over the counter medications that may be commonly used. Are there things that people with epilepsy should avoid?
Dr. Anup Patel: Excellent question too.
There are what we usually recommend is the biggest ones that we see over the counter. Medicines with the product called Pseudo Ephedrine. Now, those are easier to identify now because they are the ones you have to get across the pharmacy counter. And they usually have the letter D after them. Claritin D or Allegra D, because of the decongestant point of it.
The biggest area that we see that is in Dimetapp. Over the counter, readily available children’s treatment option. And what you have to look for is the ingredients on the bottle. To look for have Pseudo Ephedrine. And if so, we ask you to avoid it if you can.
Dr. Mike Patrick: Yup. What about anti-histamines?
Dr. Anup Patel: Those are theoretically. So there is always a possibility that they can make you more likely to have seizures if you’re prone to have them. But we don’t restrict those in the sense that it’s unlikely, in real life to actually be a problem.
Dr. Mike Patrick: Got you. Now I would assume that pseudo ephedrine, because it’s a CNS stimulant. It’s that the reason that it causes…
Dr. Anup Patel: Yeah, that’s the thought behind it, so in or out. But yeah, that’s the thought because of it’s stimulant. But what’s interesting is that often we get the question about other stimulants. So example…
Dr. Mike Patrick: That’s what I’m going to ask next.
Dr. Anup Patel: And what’s interesting is and I’m glad that this topic came along because I actually literally did electrons on a behavioral conference that we did here at Children’s, because when I actually looked at all the information, it’s all theoretical. And there’s actually no good evidence that stimulant medication causes or trigger seizures. Now, it’s a conversation you must individually with your neurologist to say, “Yes, can I have it or not?”. But we in most neurology institutions don’t restrict that. Meaning, if the child who needs it, that their primary care provider or their psychiatrist or whomever prescribes this medication for them can go ahead and do that at their will without any issue or cause for concern or interruptions.
Dr. Mike Patrick: If you have a kid who, their epilepsy became harder to manage after they started one of those medicines and then when you stopped the medicine it became easier to manage again, you might be able to make that association. But we wouldn’t say it’s a definite.
Dr. Anup Patel: No. And often those kids absolutely need that medicine. It’s as important as their seizure medicine because learning is such an important part of life that we say, “We’ll deal with the seizure part on our own”. Meaning, if we have to adjust the medicine accordingly, we will do something in that exam.
Dr. Mike Patrick: Yeah. Great. Now, we often times when we talk about disease processes here in PediaCast, we talk about the differential diagnosis. So if you think something is a seizure, are there other possibilities. Maybe it’s not a seizure that your child had.
Dr. Anup Patel: One of the biggest things that we see is a condition called Syncope or when kids pass out. Well, the phenomenon occurs when you can pass out. And this can occur in children, adults, anybody. Where they pass out, and they actually shake. So they look like they stiffen up and shake for a little bit. And we call that convulsive syncope. But it isn’t an epileptic seizure. And that’s often misdiagnose as an epileptic seizure. And the reality is the best way to be able to tell the difference, is taking a good history.
So listening to that mom or that child who went through the event. And that case people will get pale off and where in epileptic seizures you don’t often get pale. The shaking only last usually a few seconds. Now again the parent might think it last longer. And they’ll make a full recovery after.
But that is very common thing. The other things that we see sometimes in adolescents and even adults. Sometimes what we call complicated or different looking migraines can look like seizures. And other one where babies and kids is reflux which I kind of eluded too earlier. Where they’ll stiffen and look they’re having a seizure but in reaction it’s just a reaction to their reflux or their underlying reflux. So those are the pie the three most common ones that we see.
Dr. Mike Patrick: With regard to syncope, we’ve actually talked about syncope and several points in the past here in PediaCast. We’ve talked about like vasovagal episodes in one episode. And if you Google PediaCast and vasovagal episode, you’ll find it. Also postural orthostatic tachycardic syndrome. And of course heart arrhythmia, those could be very serious causes of syncope.
So again, just because, OK, your child didn’t have a seizure or the doctor thinks it syncope, that may still need to be worked up and figured out.
Dr. Anup Patel: Yeah. absolutely. And to be honest with you, a lot of those kids that we see will say “No, it’s not an epileptic seizure”. But that doesn’t mean they shouldn’t see a cardiologist or perhaps go back to their pediatrician for some further testing on their heart.
Dr. Mike Patrick: What about a pseudo seizure? What is that.
Dr. Anup Patel: A pseudo seizure which now we like to refer to as a psychogenic non epileptic spell. PNES. And again just to talk about a little bit about Children’s, we are also the only center that has the pediatric specific PNES clinic. And unfortunately we see this more and more common with our teen agers or even younger kids. And what it is, is an event that really looks like an epileptic seizure. But it’s kind of a manifestation or a symptom of your subconscious that allows you to look like you’re having an epileptic seizure. So the person undergoing the event isn’t aware really that they’re doing this kind of shaking activities. But it’s not being generated from the brain.
It’s usually a sign of underlying emotional disturbance or psychiatric or psychological disturbance or illness that we need to address.
Dr. Mike Patrick: Sure.
Dr. Anup Patel: So it can be very scary, it can be very challenging and we’re very blessed and lucky to have the people that dedicate their time and life for that.
Dr. Mike Patrick: There is a sense I think out there that these kind of seizures or something that kids are faking. And I suspect that there are cases when that occurs but we’re seeing more and more that, that may not be the case.
Dr. Anup Patel: You know, the vast majority, it’s not the case. It’s their subconsciousness. It’s almost like cry for help. In the sense that, I always use the analogy, we all in our life have gotten to a point or sometimes things bother us. And we may not recognize it, those things are bothering us. So we handle it differently. So I might get a headache for example or my stomach might hurt. But the other child may come in with an event that looks like a seizure. That’s just their body’s way of saying, “Hey, I’m not handling the stress or whatever is going on in our life, well, please help me” or “please help us”, in that sense.
And so, that’s what we usually see in common and do the analogy for.
Dr. Mike Patrick: Yup. I think it’s great that we have really folks here who are interested in looking at that. So, again coming up a bit into the program, we’re going to talk about how folks can connect with neurology here in Nationwide Children’s. But if you had the experience, some doctors saying, “Oh, they’re just making it ignore it”. Well, there is help here.
Dr. Anup Patel: Absolutely.
Dr. Mike Patrick: And then one other special note I had made as I was preparing for this program, there are situations and you had said it is really important to get a careful history. And especially with head injuries, this is one of those things where like which came first, the seizure or the head injury. Did the kid had a seizure and fallen on their head or did they fall in their head and have a seizure. Again, some of that teasing it out, it’s not the reason you want to see a doctor and really let someone get a good careful history of what’s going on.
Dr. Anup Patel: Absolutely. And I’ll add one point. This is the one where major instance where I never mind an extra person coming to the appointment. Meaning the person who actually saw the event. So it is your neighbor’s cousin, bring him in, you know. Because you’re going to get better information first hand that…
Dr. Mike Patrick: From an eyewitness.
Dr. Anup Patel: Exactly.
Dr. Mike Patrick: So how to do you go about diagnosing seizures?
Dr. Anup Patel: And the best and most important, and I really want everyone to know that it is a good history. So, what happened before the event, during the event, after the event. How long the event occurred, where did the event start, what else did you see with the event. Those are very important questions.
Then, once we say clinically, all this sounds like an epileptic seizure, the confirmatory or another test to go further is called an EEG. And that is a brainwave test basically, where we stick a bunch of electrodes in your head. Very similar what happens when people get an EKG for their heart. But instead this is for your head.
And we try to measure the electrical activity coming from your brain to say, “Hey, my brain cells are producing over activity that put me at risk for further seizures”. So, then I can connect the dots together to say, “Hey, this si your likelihood of having a further seizure or this is likely the type of epilepsy you may develop or have developed or are developing”.
Dr. Mike Patrick: Sure. What about imaging, is that necessary to diagnose seizures? So, CAT Scans, MRI’s, that sort of thing.
Dr. Anup Patel: Most of the time, like as soon as you have a seizure, unless there’s suspicion for like a head bleed or other causes that CT is wanted. Otherwise, no. But if you’re seizure is not of genetic reason, meaning the doctors have determined it’s not from a genetic cause, or it’s a focal seizure like we talked about earlier, then we do recommend that you get what’s called a brain MRI. And it’s a very detailed kind of picture of your brain. So I like to use the analogy that it’s kind of like high def television, where a CT is kind of, more of a screening tool in that sense.
Dr. Mike Patrick: Sure.
Dr. Anup Patel: We do recommend it. That’s not something has to occur urgently or right after you had the seizure. That can happen when you’re fully recovered as an outpatient.
Dr. Mike Patrick: Sure.
Dr. Anup Patel: But, that case we would recommend one.
Dr. Mike Patrick: And the other advantage of the MRI over the CT is that there is no radiation.
Dr. Anup Patel: Absolutely. And often we will not need contrast. So there is also no IV which parents really like for their kids.
Dr. Mike Patrick: So once you’ve made the diagnosis of seizure disorder epilepsy. How do you go about treating these kids?
Dr. Anup Patel: The most important part is trying to make sure you know exactly what you are treating. So, why to your best ability does the child have seizures or epilepsy? Then, you take the list of medicines. So, right now our mainstay of treatment is what we call anti-epilepsy medications or anti-epileptic drugs. And those are medications that have been developed through time that are used to target and hopefully preventing further seizures. Unfortunately, I can’t make the brain stop from wanting to have a seizure in that situation if you’re prone to having it. But what I can hopefully stop is actually causing or triggering the actual event of the seizure. And that’s what the medication do.
Dr. Mike Patrick: And there’s a whole list of…
Dr. Anup Patel: Yeah. There’s actually now as of this month, 25 FDA approved medications to treat seizures. And so the list keeps growing and growing every year. You have to keep up on it all the time.
Dr. Mike Patrick: Yeah, which is…
Dr. Anup Patel: Interesting and fun.
Dr. Mike Patrick: But that really gives hope to patients who have seizure disorders because there’s so many different options. OK, this one is not working, we can try something else.
Dr. Anup Patel: Yeah. And the important thing is, we want to tailor that to you, meaning as an individual. So it may not be the best medicine for you because you might have some side effects or it doesn’t feel right. So our goal is no seizures no side effects and luckily, yeah, we have a lot of options.
Dr. Mike Patrick: What about when the child is actually having a seizure at home, what should parents do? Sort of take me through, OK, my kid is having a seizure, what do I do?
Dr. Anup Patel: The first thing is not to panic. If you panic, then potentially harm will be done to the child.
And I know that’s hard and I know that’s something that’s very difficult during the moment. But that’s very important.
Then I ask that you put that child on their side. So if they’re only seizing on one side of the body, put them on the other side. But if they’re seizing all over, it doesn’t matter which side. The reason why we do that is that, that way if they drool or have any issues it can come out of their mouth without them choking. And then do not in any circumstances put anything in their mouth. If there’s furniture near them, clear it, but don’t try to move them to a different location. The other thing that I ask is if there is, you can cushion there head to make them comfortable, but don’t get in front of their mouth or airway because they could have problems breathing that would be problematic.
And then timing. We talked about it earlier, but they need to time the event to say exactly how long. And be with the child. Because when they awaken they may be confused. They obviously don’t know what happened. They may have wet themselves which could be very, very embarrassing. So just be with them and talk to them gently until they kind of recover.
Dr. Mike Patrick: One of the things parents that look through one of those myths out there, is that they could swallow their tongue when they have a seizure.
Dr. Anup Patel: Yeah. And that’s not going to occur. Now they may bite their tongue but it will heal. I’d rathter have them not, have them have a tongue bite than choke on something that you try to put in their mouth. And that’s the other reason why we ask you to lay them on their side.
Dr. Mike Patrick: And so a parent should not put their fingers in a seizing child’s mouth.
Dr. Anup Patel: No. Absolutely not. Under any circumstances they should not do that.
Dr. Mike Patrick: When should a parent call for emergency help?
Dr. Anup Patel: The important thing is if it’s your first epileptic seizure, you should call for emergency help. Because you do not know what is going to happen. The other reasons why you should, so if you have the diagnosis of epilepsy, you know your child has epilepsy, then we ask you to call is if the seizure is not stopping after 5 minutes unless you give medicine. Add on another 5 more minutes going with the medicine, the emergency medicine, then call.
But if your seizure is not stopping either with or without medicine help, then you have to call. Then if you’re concerned something is wrong, please touch base. We rather have you call us than rush to the ED and take all your time and energy if you feel that safe.
The other area is if you have a seizure in water, we do ask that you get evaluated. Only because it could be something that you swallow water and that could really be hurtful for your lungs. Or if you’ve been injured during your seizure. That’s one of the major things can happen with seizure. So if injury occurs, then unfortunately, you can for example, break an arm or leg. We do ask that you go and get emergency assistance for that reason.
Dr. Mike Patrick: In terms of emergency that we use when a child is having a seizure that is lasting more than five minutes and they have known epilepsy, the medicine actually goes up the bottom. And I always like to point that out. Because someone who just hears out from the side like “What? You have do to what to your child to help them to stop?”. That is a normal thing.
Dr. Anup Patel: It is. And the reason why is that is when a child is seizing, they can’t swallow effectively. And so you don’t have a good way of getting that emergency medicine which is very important into their system. So through the bottom is really effective way to get the medicine in somebody’s system and absorb. And so that’s what we do recommend.
And in the case of that is very important. So if your child is prone to having seizures that are long, please make sure that you have that medicine at home and you know where it is and you know how to use it. It’s like a fire extinguisher at home. We hope we never need to use it but we definitely want…
Dr. Mike Patrick: Yup. Just like a kid with asthma, mom should have an inhaler with.
Dr. Anup Patel: Absolutely. What we like to refer to as rescue treatment. And those kids it’s very important. Because it can help your child right there and then in your home. And then you won’t necessarily have to bring them to the hospital or emergency department. And they’re going to recover a lot quicker.
Dr. Mike Patrick: So the rectal medicine that they should have an extra one that’s in the mom’s purse. Just like and Epi pen…
Dr. Anup Patel: Absolutely. We can prescribe more than one of those to use. So please let us know for example if there are other are givers, often grandparents, other family members will watch over the kid. So, we don’t mind. We rather you have it where ever you need it.
Dr. Mike Patrick: Now, medicine for stopping an active seizure and then medicine to prevent seizures are probably the most common ways that we deal with epilepsy. But there are other treatment options that are out there as well. What about a ketogenic diet? What’s that all about.
Dr. Anup Patel: The ketogenic diet is actually treatment for epilepsy that’s been with us since the early 1900’s. And it lost favor for a little bit and now recently has kind of regained importance because of how useful it can be. But when the people hear the word diet they assume that this treatment is safe and I’d rather have that because it’s easier. And it’s really not.
The diet is for those kids who don’t respond to medicine and continue to have seizures. Because their diet has to be controlled. And often what we’ll have to do is bring them in the hospital. We monitor their diet kind of artificially starve them at first to get them to this condition where their brain is starved of this energy that is producing their seizures. And then kind of mandate how or watch over what happens next. And we control all of it.
And it can be very tricky. If you were someone who likes to eat, spreading out the treatment for you, because you can’t eat anything off the diet. So, for example, no sweets, certain carbs are off, et cetera, et cetera. And we have to monitor. So you can only have this high fat, low protein, kind of low carbohydrate diet.
Dr. Mike Patrick: What about vagus nerve stimulator?
Dr. Anup Patel: The vagus nerve stimulator is also not first line for treatment, but, for those that continue to have seizures despite medicines. It can be something that can help assist in seizure control. And it’s like a pace maker for seizures. so it’s a device that’s surgically implanted, but it’s brain surgery. And that’s an important distinction and since that there is a little device that like a pacemaker that goes right above your chest muscle. And then they tunnel up a wire that attaches to this nerve in your neck and help kind of control seizures. And it’s been very effective and it’s for those kids again that’s just medicine haven’t done it. And enough to help stop their seizures.
Dr. Mike Patrick: But not first line, like the ketogenic diet?
Dr. Anup Patel: Absolutely not. That’s correct. Medicine are still first line for everybody.
Dr. Mike Patrick: Now, you talking about brain surgery, there are cases where epilepsy may be treated through a surgical procedure. Talk a little bit about that.
Dr. Anup Patel: That’s a very important point. Because if you have failed medicine and continues to have seizures, and we as neurologist can identify what are of your brain that’s causing your seizure, where they’re coming from. We can evaluate you potentially to say, “Hey, this area is causing your seizures. and we can take it out without causing lots of long term problems, where the seizure go away forever”. So I always say, I’m an epileptologist, I treat epilepsy, I don’t cure it. Every day of my life I wake up wishing that I could cure epilepsy. I have been that ways since I was a resident. But the surgeon who takes the area out for seizures, he cures epilepsy or she cures epilepsy.
And so it’s been very great improvement or innovation in our field to offer that one that is applicable and luckily which we will talk about again in the end.
We do have a referral place and a specific clinic designed for those kids here at Children’s.
Dr. Mike Patrick: There’s some pretty cool things that you do to try to figure out what part of the brain the actual seizure focus is coming from and then to make sure that surrounding brain tissue is not involved in a vital function. What are some of those?
Dr. Anup Patel: They usually start with an EEG or a fancier version of the EEG where we actually put a lot more leads on. Adn the other things is imaging. We do MRI or certain types of MRI. Then we can do other scans, where we can inject a dye during the seizure that’s taken up a part of the brain that causes the seizure to help us identify that specific area of focus.
The other very important part of the work up you related to is determining what function is coming from that area. How much potentially if any would be lost or altered because we would take that area out. And that’s really where we rely as a team. So it’s one of my shining kind of example is how teamwork works as it’s best example here at Nationwide Children’s.
Because it takes a village, I’m offering you that analogy, but it’s very true, we need psychology, neuropsychology, social work. We need all these people. Radiology, pathology, all these people and all these services to work together. To come up to help this one child. And it’s so reward and so much fun to see in action because the team is so energized to be able to come together and work together to do this.
Dr. Mike Patrick: Yeah. And to really make a difference on the kid’s life.
Dr. Anup Patel: Absolutely. And we’ve seen some incredible outcome. Now, we are programmed, it’s gotten to the point where we seeing this kids who have surgery years ago and they continue to be seizure free and they don’t have any…. You wouldn’t even otherwise notice they’ve had seizures or even surgery. And they’re very grateful and thankful, we are happy to give that to them.
Dr. Mike Patrick: What sort of complications can arise from poorly treated epilepsy?
Dr. Anup Patel: The biggest ones we see are high risk for depression, anxiety, other psychological illness. And that’s something we care about near and dear to our hearts because we just want to avoid that as possible. To help treat that as necessary. The other things that you can have is learning problems down the road. So if you continue to have seizures and your brain isn’t able to rest properly. Because they’re too busy having seizures. It’s like being sick. You can’t learn at your best when you’re sick and that’s going to happen in seizures as well., It’s a long term lining problems can happen.
Injury can obviously happen and that occur over time and time and that could be a problem as well. And unfortunately one of the rarer side effects, fortunately it’s rare but it still occurs is death. The risk of death can occur with epilepsy or having seizures. And so we definitely have to do our best to try to get you treated as best we can.
Dr. Mike Patrick: I mean if a seizure aren’t well controlled, people aren’t be able going to drive cars, they can’t go swimming, they can’t climb on monkey bars. I mean it really interferes with your life if you can’t get this under control.
Dr. Anup Patel: You know, it does. And that’s one other thing that breaks my heart is when a kid can’t be a kind, can’t be a normal kid.
One of our goals of treatment and reason why we want no seizures no side effect is so I can let that child be a child again. What I like to say is get the seizure out of the way. And let’s get those pesky things out of the way so you can just be a kid again, and that’s the important part.
Dr. Mike Patrick: What is the long term outlook for those with epilepsy? Do you find that most of them that you try one medicine and it works, it’s done. And then how long they have to be on that medicine. So what’s the long term outlook for folks?
Dr. Anup Patel: Luckily for children that tends to be a better outlook than adults. So up to 2/3 of children will what we call go into a seizure remission or outgrow their epilepsy. We don’t use the term outgrow as much in the sense that if it comes back, nobody is happy with this, cause they say “You outgrew this”. But remission, everyone understands that. That can happen in about 2/3 of the cases. But when you start of medicine for seizures, and I think this is also very important, it has about a 60% chance of working. No matter what medicine you picked. And if you look at all the 25 I referenced earlier, the first one was back in 1857 and the newest one was just this month or last month. They came after they approved.
And the chance of you responding to that first seizure medicine is still about 60%. And if you fail that medicine, meaning it got to the highest doses and you still have seizures, then the likelihood of you responding to a second medicine is only 10%. And then if you don’t respond to the second one, the chances like anywhere from one to four percent. And so that’s where we say, “OK, let’s dig our heels in, we have a long road or potentially high hill ahead of us”.
Dr. Mike Patrick: Seizure medicines, we just don’t want to talk about the complications of the disease, but then there is also a complications from our treatment as well. We really don’t have time to talk about the side effect panel of every medication out there. But when parents do hear about side effects of the kids are experiencing side effects from medications, we still always have to look at risks versus benefit and the benefit that the medicine gives you when it controls epilepsy probably outweighs any risk that are involved.
Dr. Anup Patel: And we watch that closely. Some of the risks are higher and that discussion should definitely occur with your neurologist or treatment provider and so that makes you feel comfortable with those side effects. I would say the vast majority of the common side effects are most seizure medicines could cause sedation or being tired or even nausea or some dizziness. But what we usually ask is hang in there. Most of those potential effect go away in a week or two. And if they’re still present after a couple of weeks, please let us know because we definitely want to talk to you about it.
Dr. Mike Patrick: Absolutely. Can epilepsy be prevented?
Dr. Anup Patel: Excellent question. It’s unfortunately not a disease we can prevent at this time. Now are there things that can help you have less chance of developing epilepsy? Well yeah, if you have traumatic brain injuries, we can avoid that. So wear your seat belts. Do all those safety things that we do recommend and this is why, because kids or adults who have damage their brains sometime go on to have seizures or develop epilepsy because of it. So, that will probably the only way you can prevent it, but otherwise, it’s not a preventable disease.
Dr. Mike Patrick: And it terms of cure, really, just for those who would have focal seizure where you could have surgery and have the focus removed.
Dr. Anup Patel: That’s exactly right. Which is why when I can identify those kids, I’m very happy because I can offer them a cure which is not something I get to do unfortunately on a regular basis.
Dr. Mike Patrick: Now, how do you know when kids could potentially be taken off, like when they are in remission. I suspect one way is that these kids grow. They kind of outgrow their dose. And if they’re not having seizures anymore then kind of gives you an idea that…
Dr. Anup Patel: Absolutely, the other one is we kind of try to look at the evidence. So we want to try to look at what the evidence has done for us before, meaning, what’s the track record show. And if you look at all that information, that says that after two years and you have had no seizures, and your EEG now is back to normal, meaning you don’t find any of these abnormalities on it. And your otherwise normal, then you have a good chance, up to 60% to 70% chance of coming off that medicine and not having another seizure.
So if you gone that two years, you’ll find often, OK, it’s time to get a new EEG because if it’s normal now, and that can always compared to the one that was previously obtained, then it’s a good chance that you can come off successfully and not have one.
Dr. Mike Patrick: Great. We really appreciate you stopping by and talking to us about epilepsy and seizures today. Let’s talk a little bit about Epilepsy Center here at Nationwide Children’s. So it’s a multi-disciplinary team. Who is involved in that?
Dr. Anup Patel: It’s something I have a lot of pride for because it was a very big effort on mine and many others part, specifically I want to point out Dr. Lorie Hamiwka, who also, she is the Director of the center and she now has this vision of how do we properly treat epilepsy and kids who have epilepsy. And it takes a whole village concept is very helpful. Because often kids with epilepsy have lots of other issues going on in, and we care about that in Nationwide Children’s Hospital. We want you to know as a parent and as a child, we want to know about sensitive issues. We care just as much about that as we do giving you prescription and wishing you luck on your seizure control.
So we put together team of a bunch of people who specializes in seizures that we call epileptologist. We have two current nurse practioners who have specialty in epilepsy in various times. We’re also in the process of hiring two more. One in the in-patient side. So if you have to be admitted. And then on the out-patient side as well. So that’s our kind of medical team.
And the other part of the medical team consist of a neuro psychologist. So he or she can help us evaluate the children’s learning issue and needs. And I’ll also work with the school’s develop plans that implement certain aspects of the learning. A psychologist that can look at risk for depression, anxiety, ADHD, et cetera. All these psychological illnesses that are obviously highly associated with having kids with epilepsy. We have an epilepsy social worker. And she is a very important to us. Because we can offer assistance for families, resources that they may otherwise need, things for the parents. So for example, I get to talk to parents about make a wish and they think “Oh my gosh, that’s for children who are dying”. No, it’s not. And it can be for children who have uncontrolled epilepsy. And so I say “Well, wouldn’t you like to go on vacation with your family?”, we’ll pay for it. Well not we.
But, it sounds exciting and she can help get them in touch with these resources. But more importantly she can also help with insurance reimbursement, getting useful things that are necessary in life when you have epilepsy. So some have needs that others don’t, and we want to help that. And then very importantly, how are you mom and dad? Meaning, what can we do? And our epilepsy social worker desk wants to know about that. So we can give you resources as parents to deal with your children having epilepsy cause it’s very stressful. And we recognize that and want to help you that as well.
The other people that we have is the Child Developmental Specialist. Because some children have behavioral problems when they have seizures. Sometimes it’s hard to be able to differentiate medicine side effects, behavioral issues or seizures. And so that behavioral specialist can really help us in that sense. We’re trying right now to get doctor formal seat, to help to talk to parents about side effects on medicine, how to use medicines, just an expert level pharmacist on that scheme.
Then the other part of the clinic in the center is the Epilepsy Foundation of Ohio. So that’s an organization for parents and for people who have epilepsy that we partnered with for gaining educational resources, and camps and different other association. So we usually try to have a representative available if necessary to talk to the family about the foundation. And then of course, we have their educational resources.
So it takes all of those people in one area and it’s been the most fun experience in my medical career to get this together and watch and just grow and blossom.
Dr. Mike Patrick: That’s really cool.
Dr. Anup Patel: It is.
Dr. Mike Patrick: And do you have a close relationship with neurosurgery people too for those kids who would qualify for that kind of treatment as well.
Dr. Anup Patel: Well, luckily we have the best epilepsy surgery team because or surgical epileptogist, one of them is Lorie Hamiwka, and it’s her husband, Ron, who is our neuro surgeon. So you can’t get better communication than husband and wife. And communication among all of these disciplines is obviously the key to success. We all want to be on the same page when it comes to helping these kids.
Dr. Mike Patrick: And then the Epilepsy Center runs some individual clinics. For instance you have a new onset seizure clinic for folks who have a seizure for the first time. And then the complex epilepsy clinic which you are a part of.
Dr. Anup Patel: We have a lot of different types and I thank you for letting me talk about them. Because what’s very unique that we have so many different types of clinics to identify and obviously address the needs of our patients. So we do have the procedure clinic. If your child has undergone their first epileptic seizure, they have abnormal EEG and its look like they need to talk to us, then we are going to get them in very quickly.
The second clinic we have is Myocomplex Epilepsy Clinic. It’s for people or children who have failed at least two medicines and are not candidates for surgery and still go on. Because then we really have to brought in the scope of potential treatment options. So we definitely talk about things like the ketogenic diet, the vagus nerve stimulator. Other types of medicines are combinations, et cetera. So that’s run by me and Deborah Terry who is one of our nurse practioners. And then that comprehensive team I mentioned.
The third clinic we have is the PNES Clinic, that’s also run by Deborah Terry. She’s very useful and that’s also run by Dr. Christian Zang who is one of our Psychologist here at Children’s Hospital. And they run that clinic as well. Then we have ketogenic diet clinics. We have a dedicated clinic with dietary support or a pharmacy, et cetera. That allows us to be able to do that treatment properly for those kids.
We have the surgical epilepsy clinic that’s run by Dr. Hamiwka and also Dr. John Mytinger participates in. And they evaluate or can talk to you about the epileptic surgery evaluation and get your child evaluated for that. And hopefully if possible through the process of it. And they’ll walk you through the entire process.
Then we have the Infantile Spasm Clinic, which I kind of eluded to earlier is our only one that we are aware of in the country. Treats children who had or have infantile spasms and that’s run by Dr. John Mytinger. So that’s just a variety of the clinic we have, of what we offer our patients.
Dr. Mike Patrick: And I would want to point out that for folks who are outside of our service area in particular outside of Ohio, certainly if you have ran in the mill epilepsy, that is easily treated with first medicine, you are going to have a good neurologist more than likely in your area that can take care of it. If you find yourself in the situation where things aren’t going well and it’s in your epilepsy is not well controlled, or you are dealing with things like infantile spasm or the psychogenic type of seizures where you think you have a focal seizure and you think epilepsy surgery may be something to look into and that’s now available in your area. You would definitely see folks from outside of our service area.
Dr. Anup Patel: Absolutely. And we feel very strongly about that because we do know we offer services that are other areas can offer or don’t offer. And we just want to help as many people as we can.
Dr. Mike Patrick: Yup. And in the Show Notes, so folks go to pediacast.org and find the Show Notes for episode 256, that’s this episode, 256. We do have a link that folks can fill out that says connect with a pediatric specialist at Nationwide Children’s. And it takes them to a form that’s just for the PediaCast audience, that they can fill out with what their question is or what problem that their child is having or what concern they may have.
And ways for us to get in touch with them. So, email address, phone number, whatever. And then folks from our Epilepsy Center will get back in touch with parents to help make that connection happen.
Now I do want to point out, sometimes that mean getting referral from your care doctor but we want parents to be able to connect and we can figure out how we can make the referral happen and go through the hoops that the insurance company is may want us to go through.
Dr. Anup Patel: Yeah. And the other one thing is if you don’t know potential if your child fits in one of those sub clinics that we just referred to, it’s OK as well. You can just give us the information and do the best you can and we’ll get you to our best ability into the right place.
Dr. Mike Patrick: Yup, great. We do have some great other links for you in the Show Notes today as well. We have a comprehensive parent guide for seizures here at the Nationwide’s Children website. It’s called “My Child Had A Seizure, Now What Do I Do”.
Sometimes we call it the seizure booklet but I have a link to that. It just a comprehensive parent guide. In depth explanations of seizures and epilepsy, seizure safety, treatment, living with seizures, really just tons of great information and I’ll have a link to that in the Show Notes.
Then we have some articles from the Nationwide Children’s Health library on seizures and epilepsy. A link to the epilepsy center at Nationwide Children’s. We also have an epilepsy center Facebook page and we’ll put a link to that as well. So truly a great information and a community of support that folks can get connected to.
And then you have mentioned that you are on Twitter.
Dr. Anup Patel: Yes.
Dr. Mike Patrick: And so we’ll also have information on that so folks can follow you and do you sometimes you have some information on epilepsy on your Twitter feed.
Dr. Anup Patel: Absolutely. And I like to also follow others that do things within epilepsy and have good information on it, cause knowledge is power.
Dr. Mike Patrick: Yup, absolutely. So we will have all of those links for you over at pediacast.org. Just look in the Show Notes for episode 256.
All right, we really appreciate you stopping by today.
Dr. Anup Patel: Thank you so much for having me. I really want to thank Dr. Mike for having me because obviously this is a subject that’s near and dear to my heart and those that work with me. So, having the opportunity to talk to everybody and get the word out is very important and very helpful for all.
Dr. Mike Patrick: Great. Well you did a great job doing that.
Dr. Anup Patel: Thank you.
Dr. Mike Patrick: All right, I will be back in just a moment, we are going to take a quick break and then I will wrap up the show after this.
All right, we are way over on time because we do have such a great discussion on seizures and epilepsy. Normally I have a final word on this point but we are going to have to skip it for this week, but I’ll save it for next time, so never fear. I want to thank all of you for participating in the program and making PediaCast a part of your day. And again thanks to Dr. Anup Patel, a pediatric neurologist here at Nationwide Children’s. Make sure folks that you share this show especially if you know a family dealing with the seizure disorder. And also share it with your child’s doctor, because they’re certain to have or to know such families who are dealing with epilepsy and I think this will be a good resource with lots of information to demystify epilepsy and seizure. So make sure you let folks know about this show.
Links on your blogs, on your websites and the social media is probably the best and easiest way to share the show. We are on Facebook, Twitter, Google Plus and Pinterest. So it’s easy to share the information, just join our community on any of those sites. And then repost and share and re-twit and re-pin and all of those things.
Again, make sure you do tell your child’s doctor about PediaCast. We do posters available under the resources tab at pediacast.org so they can hang those up on their bulletin boards, exam rooms and just let folks know about the program and really just trying to have an evidence based pediatric podcast that really makes sense for moms and dads and can kind of explain things the way that they can understand.
I want to remind you, if you have a question for the program or if you want to suggest a topic, it’s easy to get in touch with me. Just head over to pediacast.org and click on the Contact Link. And so, just to avoid confusion, now at the bottom of every Show Notes, starting with this episode, there is going to be two links. One is contact Dr. Mike, if you have a question about the show and immediately after that, is the connect with a pediatric specialist, and that’s the referral form for appointments and to get in touch with an actual clinic here at the hospital. So both of those links will be in the Show Notes from this poing moving forward.
All right, once again, thank for stopping by, and until next time, this is Dr. Mike saying stay safe, stay healthy, and stay involved with your kids. So long everybody.
Announcer: This program is a production of Nationwide Children’s, thanks for listening. We’ll see you next time on PediaCast.