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Interviewer: New surgical procedures can potentially change the life of children that suffer from epilepsy. We'll talk about that next on The Scope.

Announcer: Health tips, medical news, research, and more for a happier, healthier life. From University of Utah Health Sciences, this is The Scope.

Interviewer: New advances in surgery for drug-resistant epilepsy have the potential to improve many children's lives in a lot of different ways, but yet many kids who would benefit don't get it. Those that don't get these treatments oftentimes get worse. In this episode, we're going to find out more about new evidence and benefits of pediatric epilepsy surgery. And to find out more, we're talking to Dr. Matthew Sweney, he's the Medical Director of the Epilepsy Program at Primary Children's Hospital, and the Surgical Director of the program, Dr. Robert Bollo. Thank you very much for joining us today.

This is exciting stuff. So the first statement that really kind of intrigues me is, when it comes to surgical options to help children with epilepsy, many kids that would benefit from it don't get it. Why is that?

Dr. Sweney: Well, there's an entity in pediatric epilepsy that we call the treatment gap, and that is the gap from getting kids the appropriate care that they need for the severity of their epilepsy. And the treatment gap is a global phenomenon and one that we deal with locally, and it's held to a very specific standard as to when you become drug-resistant in dealing with your epilepsy. And that's a global standard in which two to three typical seizure medications are failing and you continue to have seizures.

Interviewer: And what's happening? So people are going beyond that?

Dr. Sweney: Yeah.

Interviewer: They just keep trying other things as opposed to going to the next steps?

Dr. Sweney: Yeah, there's a sense of somewhat of despair in which medication after medication is tried. And statistically we know, as epilepsy care providers, that when you fail two, sometimes three medications, the likelihood of any of the additional medications, which currently is around 12 to 15, the likelihood of any of them doing any significant benefit in regards to seizure control is low single digit probability. So it's a global standard set by the International League Against Epilepsy, which is kind of the international governing body in epilepsy management that says, if you fail two to three medications, you should seek more advanced care through a dedicated epilepsy program.

Interviewer: And this isn't happening. People aren't seeking more advanced care. Why is that?

Dr. Sweney: Well, there's a disconnect. A lot of care is provided by folks that aren't necessarily familiar with the details of epilepsy care and the different tools available. And so those outside of the area of a large center, like our own, might find that their doctor is telling them to just continue to try seizure medications one after the other, so that five, six, seven are tried and failed, and they just assume that this is the best that it's going to get.

Interviewer: And then after some medications are tried, there's like a process that you go through to help treat children with epilepsy, right? It starts out least invasive and then builds up to surgery, which can be very beneficial and we'll talk about here with Dr. Bollo in a second.

Dr. Sweney: Yeah, absolutely. It's a fairly set approach to what you do under the circumstances of drug-resistant epilepsy. There's cornerstones to the evaluation that consist of a really long EEG, which is a brainwave test used to characterize where the seizures are coming from. There's imaging that's involved to identify any structural abnormalities to the brain. And from that point, we can then determine what are all the options available in dealing with that epilepsy.

Interviewer: And there's new evidence out there that actually says that surgery is a really effective option, like you've known that it has been for a while, but just within the past month of the recording of this. Tell me about that new evidence, Dr. Bollo.

Dr. Bollo: Yeah, so thank you. There was a new study published in "The New England Journal" about a month or so ago that is really the first class one evidence we have for pediatric epilepsy surgery. And it was a large center in India actually, where they typically have a long waiting list for surgery, and they randomized children with all different types of epilepsy. So a very real world type study, all different types that might come into a center for either surgical treatment or to continue medications for 12 months, which had been their standard of care. And they found a significant difference in not only seizure freedom but benefits to children across multiple domains, including quality of life, behavioral health, and cognitive function, who got surgery. And in general, patients who continued on medications either got worse or stayed the same. At the end of the study, they had about 77% of patients who met the criteria for seizure freedom at a year in the surgery group compared to 7% in the medical group.

Interviewer: Wow. And if you're a parent with a child with epilepsy, that's significant.

Dr. Bollo: Yes.

Interviewer: Or if you're the child with epilepsy, right?

Dr. Bollo: Absolutely. And children who had surgery, their quality of life improved, their behavior health, their conduct, all of these things tended to get better across that population. So I think that's a very important study that sort of reinforces what we've known for a long time but really shows a significant degree of clarity and resolution that not only is continuing to have seizures bad for the developing brain, and surgery is certainly scary, but it's actually quite effective.

Interviewer: So surgery could lead to a much better life for that child, but not getting surgery could actually be bad as well. I think we tend to think not doing something means status quo, but that's not the case with epilepsy.

Dr. Bollo: It's not, especially in the developing brain, so especially in a child. There's clearly loss of function across those same domains of behavioral health, quality of life, and cognitive function with persistent seizures. We often talk about epilepsy as a disease that's bimodal. It's the old and the young, and it is much more common in children than in adults. And in children, it's much more common in very young children compared to older children. So it's really a disease affecting the brain that's trying to develop.

Interviewer: So coming back in a real world situation, if you have a child that has epilepsy and you've gone beyond this treatment gap you talked about, if you've gone beyond the two or three medications, which research shows after you've tried two or three, is that correct, that odds are the other 18 or whatever else might be out there is not going to be effective, that that could be a detriment if you then decide, "Well, let's try some more medications."

Dr. Sweney: That's true. We know it's almost like a glass ceiling when it comes to epilepsy therapy that, two-thirds of the time, a combination of two to three medications can stop seizures. That leaves a third of the time that's not going to stop, despite any attempt at further anti-epileptic medications. So, I mean, the treatment gap, from our standpoint, for practitioners out there and families out there who are dealing with epilepsy early in the stages of the disease, to know what the resources available are and to know what the next steps should be and to not be complacent and to not just accept the status quo.

Dr. Bollo: And I would agree with that and I think we need to acknowledge that surgery is extremely scary. All of the time, families come to us and they say, "But I don't want memory loss, and I don't want the prospect of visual loss or a loss of an essential function like motor function." And that's very important, and I think a big part of the psychology that has led to this treatment gap and leads to long delays in getting access to surgery. And so I think we see it as our responsibility to come up with better and better ways to do surgery, less and less invasive ways, in order to do it in a way that is less risky, less morbid, gets kids home, back to school, and back to regular life as quickly as possible.

Interviewer: Yeah, because that could be scary, right, thinking about your child having their brain operated on, that's a terrifying thing. And some of this new technology, it's very high-tech, robots, lasers. I was reading a description of one of the procedures, image-guided endoscopic surgery, which is that surgery that needs just a small little hole that you can perform complex brain operations for the treatment of epilepsy. And that's what you do. Talk about some of these treatments, help us feel more comfortable with them and where they've come.

Dr. Bollo: Yeah, no, thank you. So I think if you think about 10 years ago how we did things was we would often do very large craniotomies, very large exposures of the brain. And there are three kind of main reasons to do that. Number one is, because oftentimes, an EEG, a regular EEG that you think about on the scalp doesn't have good spatial resolution. It's hard to target the structures and figure out exactly where that seizure is starting in the brain. So oftentimes, we have to put electrodes in the brain or on the surface of the brain to get better spatial resolution, better maps.

Another reason might be to map the functional cortex, where is motor function, how does my hand move, where is sensation, where is vision, where is language function within the brain in this child. And especially if the seizure's coming from areas that are close to that, we need those different maps to do things safely.

A third reason is obviously resecting the epilepsy focus or removing the cause of the seizures. So to take the first one, we've gone from doing large operations and putting large electrode arrays on the surface of the brain to robotically placing depth electrodes that are very carefully targeted to different areas of the brain and different functional circuits within the brain, all through tiny little stab incisions. So we can put up to 18 or 20 electrodes, each of which has about 10 contacts on it, through these methods, using computer technologies and robotic technology very safely and very quickly. And then when we take those out, the kids can go home the same day.

Interviewer: Isn't that kind of amazing?

Dr. Bollo: It is amazing to see.

Interviewer: I mean, really?

Dr. Bollo: Yeah. I think families are blown away when they go through it. And I'm like, "Okay, you can go home," and they're like, "Really? How long do I have to stay out of school?" I'm like, "You don't."

Dr. Sweney: Families are routinely kind of astounded with what we tell them is kind of the expected recovery with these. They're expecting weeks to months of being incapacitated, just because surgeries 30 years ago would have that. But, you know, this isn't 30 years ago.

Interviewer: And things are only getting better. I remember when I had my tonsils out a long time ago, I was in the hospital for a couple of days, right. And I don't know if that's still the same but that just is amazing, compare and contrast that.

Dr. Bollo: Yeah, so a large, big opening on the side of one's head to multiple, just little incisions closed with a single stitch that'll absorb over time and right back home and right back to school.

Interviewer: And with pinpoint accuracy, being able to know exactly where you need to target the surgery and where the trouble spots are to avoid them so you don't cause no harm, yeah.

Dr. Bollo: Absolutely.

Interviewer: What's the next step for somebody that wants to learn more? I think that hopefully this conversation has maybe helped people overcome a couple of things. One, the treatment gap, realizing there is a set continuum of treatment, steps that you take, "If this one doesn't work, we're going to move to the next one, we're going to move to the next one." If you don't move down that, it could actually negatively impact your child. If you move along it, it could make things much better. And then the other thing is just becoming more comfortable with the technology and surgery, that it's maybe not the scary thing.

Dr. Bollo: Yeah, I think that our responsibility as providers, and our team takes that very seriously, that we need to make surgery safer, less risky, and easier on kids, and this new technology that we have facilitates that. And so we try to bring it together in a synergistic way and offer as minimally invasive a surgical treatment as we could have for any given child in any given situation.

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Interviewer: Coming up next on The Scope, a few of the latest and most important changes for how epilepsy is treated and managed in kids for pediatricians and parents. You're both going to get value out of this next.

Announcer: Health tips, medical news, research and more for a happier, healthier life, from University of Utah Health Sciences, this is The Scope.

Interviewer: Dr. Matthew Sweney is from University of Utah Healthcare. He's presenting at the Pediatric Academic Society's conference and he's here to fill us in on what we know about treatment for children with epilepsy. There is a pretty clear treatment pathway we're discovering, even though maybe a lot of people don't realize that, so let's talk about some of those things.

Dr. Sweney: Recently the International League Against Epilepsy has standardized the definition of drug resistant epilepsy in kids. It's fairly straightforward that if you have failed two anti-epileptic medications that were appropriately selected and tried for an adequate duration, if they don't work, then you are a candidate for other options. That was part of the purpose of the talk, to highlight what the treatment algorithm and the different management options are for kids with epilepsy.

Interviewer: Yeah. Give me kind of a brief overview of this pathway of treatment.

Dr. Sweney: Well, in kids, the definition of epilepsy is when you have two unprovoked seizures. If that's the case, we talk about initiating medication, hopefully with the goal of eliminating the seizures. The first medication, no matter what you choose, it's interesting how we've been in this game for 100 years as far as having anti-epileptic medications and we have had difficulty moving the needle because no matter what medication you select, it gives you about 50% of kids with seizure freedom.

So in other words, you stop seizures with the first medication half the time. If you add a second medication, you get another 10%. If you add a third medication, you get another 5%. If you add a fourth, fifth sixth, seventh, eighth, ninth, tenth through fifteen, you get low single digits with each one.

Interviewer: Not all at the same time, but trying each one to see which one works.

Dr. Sweney: Each one sequentially.

Interviewer: For that particular child.

Dr. Sweney: Yes. So the International League Against Epilepsy has said, well, the statistical benefit of additional medication trials is so low that you should look at other things. That's where the term drug-resistant epilepsy comes in and then the menu options include in some cases surgical resection, which often gives you the best chance of actually curing epilepsy because all of our medications don't unwire a brain that's wired to seize, they just treat the symptom of the seizure.

So we look at epilepsy surgery as an option in some of our more severe cases where there is a target that can be safely removed. If not, then we look at other options like neuromodulation which involves implantable devices, dietary modification, which surprisingly has been in effect for thousands of years with humans, but we've just kind of medicalized it in the past 30 years and that's with a ketogenic diet. And then of course sometimes medications are the best bet. Unfortunately it's usually not the greatest statistical chance, but we take what we can get when all other options don't work.

Interviewer: What would surprise . . . are parents surprised that surgery is actually an option that works as well as it does? Does it work that well?

Dr. Sweney: Yeah. Some surgical scenarios can give you up to 80 to 90%, let me rephrase that, 80 to 90% of kids undergoing that surgery may be seizure-free in five years, which is kind of our yardstick for measuring how well it works. That's not perfect and they've attempted to look at it even longer term, like decades, but there are some barriers to getting good data on those kinds of studies.

So when you look at the prospect of 80 to 90% seizure freedom five years down the road versus low single digits with additional medications, families are often really surprised to hear that we feel that surgery is a good option. There's a lot of anxiety generated about taking your kid into surgery and have somebody cutting on their brain, but the whole idea with surgery is you have the same child going into surgery coming out, just without seizures.

Interviewer: And then after surgery for those that are cured, for those that it's alleviated symptoms, then do you move onto the dietary aspect or is that one of the first things you do?

Dr. Sweney: It depends on the circumstance. The ketogenic diet in some epilepsy syndromes is actually the preferred treatment of choice. That's where you trick the body into thinking its starving when it's not. You still meet other nutritional needs that are required, but you shift the fuel source from the preferred fuel source of the brain, which is sugar and you go to the second most preferred, which is the breakdown products of fat.

Sometimes we even do something called the modified Atkins which has a little bit more publicity and it's a better target maybe for older kids. It's the same premise where you trick the body into thinking that it's in starvation mode and that's what we found over the past hundreds of years, folks with epilepsy, when they get sick and they don't eat, sometimes their seizures get better.

Interviewer: When you give your talk at the Pediatric Academic Society's conference, what else will you be addressing?

Dr. Sweney: In addition to highlighting the epidemiologic burden and the medication management issues, we'll talk about some of the new surgical alternatives, which reduce the invasiveness and alleviate some of the morbidity or issues generated by the surgical process itself, ideally making shorter stays in the hospital and having kids go home quicker. And then also to kind of talk about in addition to dietary modification, the increasing use of genetic testing over the past five to ten years, which should down the road ideally provide the possibility of a tailored management approach for kids with epilepsy.

Interviewer: Is that something you'd recommend to anyone with a child with epilepsy is to get some sort of genetic testing done at this point or is it really you as a specialist can target, "This might be advantageous for you?"

Dr. Sweney: As epilepsy care practitioners, we're in the process of figuring that out. I would not make it a blanket recommendation because the results don't justify the cost at this point. There are specific scenarios where there are well-defined epilepsy syndromes where I think it's a little bit higher yield or in cases where there's clearly a family predominant effect where it might have a bearing on family planning and information that you or your children might need to know down the road.

So no, it is not a one-size-fits-all at this point. But genetic testing is becoming more and more reasonably priced and we're getting a better idea of what to do with the information. So I see it becoming a heavier component of the diagnostic workup in the next five years.

Interviewer: Would you have a final thought for pediatricians or parents on this topic? Is there a takeaway that they should . . . ?

Dr. Sweney: Well, one of the biggest things that families say is that they feel lost early in the course of their epilepsy care identifying a practitioner that's familiar with what they're dealing with and has a clear idea of what the next should be. My goal would be to emphasize that that's out there and that you just need to basically know what doors to knock on and know what care pathways to pursue. But there is help and that's what we're here for.

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