Maggie McKay (Host): Le Bonheur Children's Hospital treats more than 1,300 kids every year for epilepsy. Their patients have some of the highest seizure free rates in the country. Today, we're sitting down with Dr. James Wheless, Director of the Comprehensive Epilepsy Program and Neuroscience Institute at Le Bonheur Children's Hospital, to discuss the various treatments for children with epilepsy and what new advances Le Bonheur has made in the epilepsy program. Welcome to The Peds Pod by Le Bonheur Children's Hospital. I'm Maggie McKay. So great to have you here today, Dr. Wheless. Let's dive right in. What are the most common types of epilepsy that you treat at Le Bonheur?

Jim Wheless, BScPharm, MD, FAAP, FACP, FAAN, FAES: So with children, this is the challenge we face every day in that every seizure type that the human brain can have shows up at some point in childhood. Very different from our adult colleagues that see a much more limited repertoire of seizure types or seizure patterns. So anything that can happen and can be a seizure type that's been described, we see in children. So it's the gamut.

Host: Wow. What are the variety of treatments you administer?

Jim Wheless, BScPharm, MD, FAAP, FACP, FAAN, FAES: So just as we see kind of the full gamut of different seizure types, as you might guess, the same applies to treatments and we've prided ourselves on Le Bonheur being what's called a comprehensive epilepsy center and those are graded, if you will from, depending on the depth of resources that treat epilepsy.

I'm proud to say that for approaching 20 years now, we've been a level four center, which means that basically every treatment that's available worldwide, we have available at Le Bonheur. So, most of our patients are taking medicines to control their seizures, but we have all the dietary options that are prescribed diets available.

The devices that are combined with medicines and even all the surgical options that we're capable of and folks that need to proceed down that pathway.

Host: And what advances have been made in helping kids with epilepsy?

Jim Wheless, BScPharm, MD, FAAP, FACP, FAAN, FAES: Yeah, I think the critical advances in the last couple of years have been, one, our better understanding of some of the causes of unique causes of epilepsy in childhood, especially early childhood. Within the last 10 years or so, we've been able to do a better job at defining some of what we call the genetically based epilepsy.

So they're not necessarily genetic in the sense they're inherited from their parents, although they rarely could be. Most of these are new genetic changes in that child that occur that result in epilepsy. And while they're each individually very rare, we now can identify over 200 of them.

So the group is forming a good subset of the folks we see. And we're now actually looking at targeting the specific genetic cause rather than just treating the symptom, which is the seizure. So that's an exciting change. And then I think the other one on the other side of the coin is, yeah, we've had new medicines.

We'll talk about those. Some of those that are exciting because they offer better seizure control. But for our patients, we use device therapy. We're actually implanting a computer in the skull, electrodes in the brain itself to help us monitor seizure activity and treat that. So there's a lot of kind of really exciting things going on in the world of epilepsy that allow us to offer more hope and more chances of seizure freedom to more of our children we take care of.

Host: That's amazing and very hopeful. Let's talk about those medicines you mentioned.

Jim Wheless, BScPharm, MD, FAAP, FACP, FAAN, FAES: We have a lot of what we call clinical trials going on. So the way new medicines get to the market and people may not appreciate this is, you know, usually it's the chemical, the medicine is thought of, if you will. It's maybe tested in a lab setting just to make sure safe.

But then as you might guess, they're usually initially given to adults if that same seizure type occurs in adults, because adults can at least tell us like, okay, did it make me feel dizzy or tired or anything like that, that some of our young children can't tell us, and we can look at blood levels and figure out doses just easier.

Adults are more willing to let us do that and not be bothered if we have to check blood levels. So most of the time they start there, not always. And then we look at them in children. So we've got several new medicines that are just now available to be looked at in children. We're one of the centers in the country that has a very established track record of evaluating those medicines in children.

So literally every new seizure medication that's come to the market in the United States in the last 30 years, we've been part of evaluating how well that works in children and are there any unique side effects in children that we need to know about for families. So we're actively involved in those trials and glad that we can bring those new treatment options to families and the children we take care of.

Host: So just to get a little more detail, Dr. Wheless, what current epilepsy clinical trials are you doing at Le Bonheur?

Jim Wheless, BScPharm, MD, FAAP, FACP, FAAN, FAES: Yeah. So we have a couple of very encouraging ones that we're involved in now. So we're doing one that's a standard seizure medication given by mouth. It's brand name is XCOPRI. But we're evaluating in children. It's approved in adults as so far, this looks like this could be one of the more impressive medications we've ever had for the treatment of epilepsy.

We're seeing seizure free rates in children that have not responded to multiple other medications becoming seizure free on this medicine that we've just never seen with any new drug before. So I think this is going to be a great drug to have available for our patients down the road as it completes this process and gets approved.

So it's one that we're really excited about. One that's very different or a couple that are very different. I talked about the genetically based epilepsies. We actually have a couple of treatments now that we're actually injecting. It's a complex medical compound, but into the spinal fluid of children to actually get to their brain.

It's to modify these genetically based epilepsies and allow us to treat those in a way that our medicines can't. Those are rare diseases, but that's a novel treatment approach that we've never had before. And then I'll just maybe mention one other one that's a little bit different too is, for some of our children, they do relatively well with their seizures, but then once in a while, they'll just have a bad day without a clear reason, or sometimes with a clear reason, they have a cold, but sometimes without a clear trigger, and they'll have multiple seizures.

We like for the families to be able to kind of treat those at home without having to go to the emergency department. It's just not convenient for a lot of folks and often crowded and other issues this time of year. So, we're actually looking at a nose spray that's a rescue treatment for those children.

That the parents, it's a single spray, they can give down to age two at home, that also looks very effective and very promising that may keep many of those children from having to come to the emergency room and just have an unnecessary emergency room visit.

Host: Wouldn't that be awesome. Those all sound really encouraging. Any preliminary results you can share?

Jim Wheless, BScPharm, MD, FAAP, FACP, FAAN, FAES: For the ones that, I mentioned that we're injecting intrathecally, we've seen significant reduction in seizures with that, so, we've seen upwards of the seizure numbers cut in half or more, but I think more importantly for a lot of families, also developmental improvements, which is another, you know, a key feature when we're treating children's seizures, it's very different than adults. That's the other thing that we're often looking for as well. Again, I mentioned the XCOPRI, but with that we're seeing very robust improvement seizure control. Folks that previously, were having daily to weekly seizures and now becoming seizure free, which is just huge, to the families as far as their, not only the child's quality of life, but the family can actually think about, gosh, we can go on vacation without worrying about our child having a seizure, leave them at an after school program without them worrying.

So it just really is has a huge kind of ripple and impact effect beyond just the child's seizures to the whole family.

Host: That's so true. You know, I bet a lot of people don't even think about all the ramifications around one child in a family with more than one kid, how that affects everybody. So you're right. That's really encouraging. Is there anything else in closing that you'd like to add?

Jim Wheless, BScPharm, MD, FAAP, FACP, FAAN, FAES: I think it's just, there's so many new treatments out there for families that if their children are still having any seizures, they're having side effects from their medicines; if they really haven't visited a neurologist to kind of update their care in the last couple of years, it's probably well worth doing because there's so many new options that have come out and it's become so sub specialized that you really have to kind of do that every couple of years, if you've not done it just to say, hey, one of these get my child ahead of where I am currently, and really improve their quality of life. And like I said, their development, which is one of the key things we're always treating as well in pediatrics.

Host: Well, this program sounds amazing and so encouraging to I'm sure, parents with epilepsy and adults with it. So thank you so much for your work and for sharing this and your expertise. It was fascinating.

Jim Wheless, BScPharm, MD, FAAP, FACP, FAAN, FAES: Maggie, thanks for having me. Look forward to continuing to move forward with what options we have available for these families.

Host: Definitely. Again, that's Dr. James Wheless. And if you'd like to find out more, please visit lebonheur.org. If you found this podcast helpful, please share it on your social channels and check out our entire podcast library for topics of interest to you.

I'm Maggie McKay. Thanks for listening. This is PedsPod by Le Bonheur Children's Hospital.