Apr 29, 2016

Interview Transcript

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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