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Understanding an Epilepsy Diagnosis

Dr. Courtney Wusthoff leads a discussion on understanding epilepsy, from diagnosis to treatment.
Understanding an Epilepsy Diagnosis
Featured Speaker:
Courtney Wusthoff, MD
Courtney Wusthoff, MD is an Associate Professor of Neurology & Neurological Sciences, Neonatal Medicine Director of Neurocritical Care, Neurology Director, LPCH Neuro NICU. 

Learn more about Courtney Wusthoff, MD

Scott Webb: Epilepsy is a common neurologic disorder that often begins in childhood. The pediatric epilepsy center at Stanford children's health focuses on identifying the epilepsy cause treating seizures with leading edge technologies, like the Rosa robot and partnering with families and other caregivers to provide the very best in childhood epilepsy care.

And joining me today to help us all understand epilepsy and seizures and how the multidisciplinary team at Stanford children's health can help children and families is Dr. Courtney Wustoff. She's a pediatric epileptologist at Stanford. Children's.

This is Health Talks from Stanford Children's Health. I'm Scott Webb. Doctor, it's great speaking with you today. We're talking about epilepsy and seizures. What does it mean to say that a child has epilepsy and is epilepsy the same thing as a seizure?

Dr. Courtney Wustoff: That's a great question. They're related, but they're not exactly the same thing. So a seizure is when the brain has uncontrolled or extra electrical activity. It's doing more than it should and in a way that's not normal. And people who have epilepsy have a tendency to have seizures, but not everybody who has seizure has epilepsy. So there are lots of things that can cause a seizure, for example, injury or an infection or illness. All of those things under the wrong circumstances could trigger a seizure in somebody. And it may be that once you fix that thing that's going on that caused the seizure, that there aren't going to be any more seizures. And in that case, that child doesn't really have epilepsy.

But there are some other people where they have a tendency or a predisposition to have seizures, and we expect that they are going to be at risk for having ongoing seizures in the future. And that's when we say that somebody has epilepsy. It's that they've had a seizure and they have an ongoing predisposition or tendency to have seizures.

Scott Webb: That's a great breakdown. I've always wanted to ask an expert. So I think I've got this. So those with epilepsy may have seizures, but not all people who have seizures have epilepsy. So I think I've got that right. So when we talk about a diagnosis of epilepsy, how do you make those diagnoses?

Dr. Courtney Wustoff: There's lots of different pieces that come together to make a diagnosis of epilepsy and to understand why a child has epilepsy or what kind of epilepsy they have. One of the first questions that often comes up is "Did this thing that just happened, was that really a seizure?" Sometimes it's not clear. There are some instances where it's really obvious that what happened was a seizure. If a child suddenly falls down, starts shaking all over, like you see in TV or the movies, then that's usually a seizure and can be pretty straightforward.

But there's other times when it might not be so straightforward, for example, staring spells or funny twitches or jerking movements, sometimes those are seizures, but sometimes they're not. And so often the first step is to see your physician, talk about what's been going on and try to understand, "Do we think this was a seizure or not?" One of the tests that we might use in that situation is an EEG or an electroencephalogram. And what that is a way that we can record or measure the brainwaves and see if we can find any clues about whether or not a person has a tendency towards seizures. And it's a painless procedure. It's really easy. The kids stay awake the whole time. We put stickers on the head, kind of like you put stickers on the chest if you're doing an EKG to look at the heart. It's a similar thing, we put stickers on the head and we take a look at the brainwaves.

And it's unfortunately not a perfect test. It doesn't give you a yes, no does this person have epilepsy. But sometimes we can see little blips, little extra bursts of extra activity and that can be a pretty good clue that, "Yeah, this is a person who's more likely to have seizures." So you take that information and you put it together with the information that we get from talking with families, talking with kids, doing a physical exam and putting it all together is how we try to understand do we think that this was really a seizure? And do we see any evidence that there's an ongoing risk for seizures, a reason that we think that this is actually epilepsy?

Scott Webb: Yeah, I see what you mean. It sounds pretty comprehensive. And that there's a real sort of battery of tests and lots of communication. If a kiddo has epilepsy, is diagnosed with epilepsy after you've done all of the testing and had these conversations and tried to make the best diagnosis you can, if it's confirmed that they have epilepsy, will they have that diagnosis for the rest of their lives?

Dr. Courtney Wustoff: Not necessarily. And that's one of the things that's unique about children and important about pediatric epilepsy. Most kids who have seizures actually don't have epilepsy. The most common reason that a kid has a seizure is because they have something called a febrile seizure where in the setting of having a really high fever, they might have a seizure. And those can be certainly scary and worrisome for families the first time that it happens. And it's absolutely the right thing for the child to get checked out by a doctor. But in the case of febrile seizures, even though a child might have one or two or more febrile seizures, we never say that they actually have epilepsy because we know that their seizures only come with fever and we know that they're going to outgrow it, usually before they're school age.

There are other kinds of kids who really do have epilepsy who have a tendency to have seizures, but because of the way that the brain is always changing and growing in early development, they might go through a stage of brain development where they have their seizures, they have their epilepsy and they might outgrow it before they reach adulthood.

Overall, about half of kids who have epilepsy in childhood will ultimately outgrow their epilepsy, which is great news. For the other half, they might have epilepsy lifelong, and there are different kinds of epilepsies, understanding what the cause of the epilepsy is, what the epilepsy type or sometimes it's called epilepsy syndrome is, all of those things give us information to help understand for your child do we think that this is something that's going to last lifelong? Are we feeling more confident that it's something that might go away with time or do we need to get some more information?

Scott Webb: Yeah. And doctor, do we know what causes epilepsy?

Dr. Courtney Wustoff: That's a great question. And it's something that I think is changing in the field. And one of the exciting things about doing child neurology is we're learning more and more each year. For some children, there's a very clear reason why they have epilepsy. But that can be different for every child. So in some cases, epilepsy runs in families. And we now know more and more about the genetics of it. We can do genetic testing to see what the exact cause is in a particular family of the epilepsy. In those cases, if families want to do that kind of testing, then we can get a better understanding of why that child has epilepsy and maybe what the risk is for other people in the family.

There are other kids where they're the only person in the family who has epilepsy. There's nobody else who's had seizures. And sometimes we can find a cause by looking for other things that might be different about the brain. So for example, we might take a picture of the brain using an MRI scan, and we can look for differences in the way that the brain develops that might be a reason why a child has a predisposition for seizures. You can imagine that if one part of the brain has just developed differently, some of the cells lined up differently or connected differently, that could be the part of the brain that the seizure start in. So often, we'll do an MRI scan to try to see, can we pinpoint why this child has epilepsy? Again, really to understand what's the best way to treat it and what can we expect for the future.

Unfortunately, we don't always find a cause for it. And there are still kids who have epilepsy, where we do these things and we don't have a great explanation for it. But I do feel optimistic because there's lots of things that are available now that even five years ago we didn't have available to understand what might cause epilepsy for a child.

Scott Webb: Yeah. And I can hear the optimism in your voice, which is always encouraging for all of us parents when we deal with doctors. And doctor, I've heard people with epilepsy need to avoid certain things, whether that's video games, rollercoasters, sports. So how do we know what's safe for a child with epilepsy to do, to play? And have the recommendations changed over the years?

Dr. Courtney Wustoff: The best way is to talk to your child's doctor, your child's epilepsy doctor about for your child and their type of epilepsy, what's safe and what's not, because it really varies for different kids. And this is one of those things that has changed pretty dramatically even since I did my medical training, the way that people think about restrictions for people with epilepsy, and it's so important because when you take a look at families of children with epilepsy and youth with epilepsy, the thing that impacts their quality of life the most is often not the seizures, it's all of the restrictions that people might believe they have to have. And we know now that a lot of the things that used to be off limits really aren't.

So for example, kids who have epilepsy can still do lots of different sports, really almost all of the kinds of sports that kids would do in childhood. There's some sorts of precautions that you need to have. And those can vary for particular epilepsy types, but it's no longer the case that kids with epilepsy have to sit out at PE or can't join their school sports team or can't play with other kids, that's really outdated advice. And more and more, we want kids with epilepsy to be active, to be able to participate in other things.

Video games are fine just as they are for other kids within moderation, but are fine for most kids with epilepsy. There are a few types of epilepsy where certain flashing lights can be an issue, but we have ways to check for that. And so that's another situation where it's going to be different for one child and for the next, and you really want to talk to your doctor to understand, "Is this something to worry about or I don't have to worry about it?"

And then other things that come up later on in the teenage years, things like driving, moving out of the house to go to college and other things like that. I think that we can have some common sense precautions, ways to keep people safe. But more and more, the goal is to have fewer and fewer restrictions because we want the life to be as normal as possible even with epilepsy.

Scott Webb: Let's talk about the treatments that are available for children with epilepsy. I'm sure there are many. And as you said, there's just such a range and that it's not a one-size-fits-all for every child, every person with epilepsy. So what are some of the treatments?

Dr. Courtney Wustoff: This is another area where we have more things available now than we did a few years ago and hopefully even more things coming down the road. For most kids who have epilepsy, if we say that there's epilepsy, we know that there's a tendency towards seizures or predisposition towards seizures. So for most kids with epilepsy, we do start a treatment to prevent seizures from happening in the future or to reduce the risk of seizures happening in the future.

So for most kids, we start out with an anti-seizure medication, which is a medicine that's taken usually once or twice a day to try to prevent having any more seizures in the future or, if you can't prevent it perfectly, to reduce that risk of having future seizures. There are literally dozens of different medications that are available and lots of different characteristics of the medicines. So we usually pick one based on what we think is most likely to work based on that child's epilepsy type and thinking about some of the possible side effects. Are there any things that we know we need to avoid for a certain situation? But medication remains the first line treatment for most kids with epilepsy.

For some kids who have epilepsy, medication fails them and it just doesn't work. And fortunately, that's a smaller group within kids who have epilepsy, but it is a big problem when the medicine doesn't work for you. And for those kids, we have other kinds of non-medication options that are available that can be successful where medication isn't. Those are things like a special kind of diet. The ketogenic diet is a medical diet, which is not exactly the same as people might've heard of for trying to lose weight. It's similar that you take a look at what kinds of foods you're eating, you're pretty specific about avoiding certain types of foods and only sticking to other types of foods. But we have a ketogenic diet program at our center. And one of the great things about it is that for kids where multiple medications have not worked for them, three or more medicines, often some good results with the ketogenic diet with significant reductions in seizures. For some kids they're able to come off of some of those medications and, because it works in a different way, it's a great option.

For other kids, sometimes surgery is a good treatment and that always again can sound off-putting, "Brain surgery for some kids?" That epilepsy surgery can cure their epilepsy. And so when you're thinking about a situation where you're facing the possibility of a lifelong epilepsy and taking medication every day, or a chance to have a surgery that could cure the epilepsy, stop the seizures, be able to come off of medication, then when you think of it that way it makes a lot more sense why that might be something that you would want to look into and learn more about.

And so we do a lot of evaluations for epilepsy surgery. Every child is different, and we want to understand what the likelihood is that the surgery is going to help and what are the potential risks of the surgery? That's really unique for each kid. So we do a lot of detailed work leading up to it to try to understand as much as possible the pros and cons to make a decision with a family about whether epilepsy surgery is right for their child.

The last kind of treatment that we're learning more and more about are a group of things called stimulators or neuromodulatory devices. These are a little bit newer and have been used more in adults, but now we're using them more often in kids. These are devices that are implanted devices that give electrical signals to try to reduce or stop seizures when they happen. And so it's another option for people where medicine's just not doing it and you want to have something that's going to work on an ongoing basis. And so that's another type of therapy that doesn't have anything to do with taking a pill every day or twice a day.

So there's lots of different treatments that are out there. And thinking about the pros and cons of each one is unique for each family.

Scott Webb: And doctor, I wanted to ask you. What's the best part of working at Stanford Children's? And specifically, I want to have you talk about the multi-disciplinary team that you're a part of.

Dr. Courtney Wustoff: I really liked the team that we have here. We're really fortunate to have such a group of committed and dedicated experts. We're an epilepsy center. And one of the things that makes a pediatric epilepsy center different than other kinds of medical care is that we have this group of people who provide at Stanford Children's the highest level of care available for kids with epilepsy. And so that means that there's pediatric epileptologists. We're physicians who completed extra training in pediatrics and neurology and epilepsy, so that we have a level of expertise in this area. It also means that we have available technology to help us with evaluations. That includes our fantastic team in the neurodiagnostics lab, our EEG technologists. They're really phenomenal. And I've had so many families, who've said, "You know, we tried an EEG someplace else and getting the stickers on the head wasn't great." And they come here and our techs are magic. And so we get really great quality studies, and in a way that I think families appreciate their talents.

We have a group of wonderful pediatric neurosurgeons. So if we're thinking about surgery and whether or not that might be an option or an implantable device, we have folks here where that's what they're most passionate about, is trying to do surgery. Sometimes in cases where it wasn't clear whether or not that was an option, but trying to understand, is it an option? And what do we have to think about what are the potential risks for an implantable device? Is this something that's available for this kid?

We also have other folks who help provide comprehensive epilepsy care. So we have a dietician who helps with our ketogenic diet program. We have some fantastic nurse practitioners, case management experts and nurse coordinators who help pull everything together to make sure that the care is coming through smoothly with things like communications and getting medications and working with families and other health systems to get everything together.

So it's not just one doctor and one family. Part of what I like about Stanford children's is that we've got all of that rich expertise and people who are really excited to do this and come together at our epilepsy center.

Scott Webb: Doctor, as we wrap up here, any final thoughts or takeaways about epilepsy, seizure?

Dr. Courtney Wustoff: I think that the message that I try to get across to families is that it's hard when you first find out that your kid has epilepsy. This isn't something that anyone expects and it can be rough and there's so much more that we have available now than we did years ago and there's so much more that's coming.

So as much as possible, I think that it's helpful to tap into those communities that are available for families to support each other, to connect with expertise about what's new, what haven't we thought of, what haven't we tried? Because it might be that a few years down the road or compared to when you saw someone a few years ago, there's new options that are available and that's what makes it a really exciting field to work in.

Scott Webb: Yeah, it does seem like an exciting field. Doctor, thanks so much for your time today and you stay well.

Dr. Courtney Wustoff: Thank you. It was my pleasure.

Scott Webb: For more information, visit epilepsy dot Stanford.

Children's dot org.

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This is Health Talks from Stanford Children's Health. I'm Scott Webb. Stay well, and we'll talk again next time.