You'll Only Need One Brain Scan For Your Epilepsy! - Graeme Jackson- Matthias De Wachter, Antwerp University Hospital, Belgium
Seizures are one part of the epilepsies! Paediatric neurologist Matthias De Wachter shares the benefits of a holistic approach to helping people affected, emphasising the importance of understanding and treating symptoms other than seizures - such as mental health issues. Matthias also shares his research into KCNQ2 & 3, the significance of lifestyle factors in managing epilepsy, ongoing research for precision medicine, and drug repurposing for rare genetic epilepsies! Transcription and links to Matthias below! 👇🏻
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Matthias De Wachter
“I think it's important in every kind of epilepsy. Of course, you can have some triggers in some epilepsy syndromes that are more frequent than in others, but in general, having a good lifestyle is good for your epilepsy, is good for your health in general.”
00:16 Torie Robinson
Epilepsy is seizures, right? Well no - it often isn’t solely seizures. The seizures are just one symptom of the epileptogenesis and there are often other, equally impactful (or sometimes even more impactful) symptoms too (which might arise before, after, or at the same time as the seizures!)!
We hear all about this and how the other symptoms can be identified - with our chat today with paediatric neurologist and rare epilepsy researcher; Matthias De Wachter!
If you’re new and you haven’t done so already, please quickly like and comment on this episode to stimulate conversation, and subscribe to our channel to get more people interested in and learning FACTS about the epilepsies!
00:55 Matthias De Wachter
My name is Matthias de Wachter, I work in Antwerp University Hospital as a child neurologist and I'm focusing on genetic epilepsies as a research and clinical interests. So, I'm very happy to be here.
01:11 Torie Robinson
We met through a lovely team in Filadelfia, didn't we? In Denmark, everyone checked them all out. They've been our guests before. So that's how we met! So, what led to your focus on childhood epilepsy specifically? Because neurology is huge. You could specifically focus on anything. Why genetic epilepsies?
01:33 Matthias De Wachter
I was first trained as a paediatrician and then I fell into the field of paediatric neurology, and epilepsy was always, like, a little bit… the core business of our department here. My professor was so… always so passionate about epilepsy that I really fell into the same passion! And that's how it started, just by having very, very enthusiastic people around you.
02:10 Torie Robinson
So, we were talking before we pressed record about how seizures are a symptom of epilepsy and that there are loads of morbidities that come alongside seizures. Could you tell us a bit about that, please?
02:24 Matthias De Wachter
Yeah, it's lovely that you used “morbidities” as a term because it really tells that the epilepsy or the epileptic seizure is part of a bigger disease, a disease of a brain which gives you abnormal activity and then causes maybe epileptic seizures, but also intellectual disability or mood disorders or learning problems, movement problems. And it needs to be seen as a holistic thing and not only focusing on what you can often see (the seizures).
02:58 Torie Robinson
I can say from the perspective of somebody with a diagnosis of epilepsy, I can't say how much… well, I just appreciate that so much because often seizure control or minimisation is not the priority for us. Do you see that a lot in the children and families that you work with?
03:13 Matthias De Wachter
Yeah, and it's of course a little bit nuanced, often in the beginning, in the first consultation. If you had a seizure, especially when you have a general tonic clonic seizure, it has been very “impressive” for bystanders, for teachers, for parents, for the child itself. And then of course you need to first do things first and focus on how do we get the kids safe? How do we reassure the parents? Can we prevent this from happening again? But then, when you're little bit further in the process, you need to be constantly aware of the fact that there's also the social aspects, that there are maybe underlying sleep or learning problems, and I think we need to be aware of that as clinicians and we need to make time for this - to first speak about it, so people are aware of the fact that maybe other aspects of their lives are affected as well, and second: to listen to other problems besides just asking “Did your seizures went down with the new medication?”.
04:23 Torie Robinson
So, what might some other questions be then?
04:28 Matthias De Wachter
I often ask “How is it going?” - and then then you see that sometimes people are talking about their seizures but sometimes they start with something completely else and I often ask 3 things: “How’s it goes at school?”, or if the patient has a very limited intellectual capacities I ask about development, and then I ask about sleep and behaviour. And I think if you have those 3, you are already having a lot of information besides just the seizure - and it doesn't need to be a lot, but if you know they're sleeping well and school is going okay, then you can relax a little bit on that and you can… yeah, go on to make a plan for the next consultation.
05:17 Torie Robinson
And do you find that it's often what might be needed to be explained, I think sometimes to the individual and/or to their families, is that things like sleep and stress can often contribute to seizure frequency and severity anyway, ‘cause it's not just about medication, right? It could be about lifestyle. Obviously, it depends on the type of epilepsy, but do you mention that ever?
05:37 Matthias De Wachter
I think it's important in every kind of epilepsy. Of course, you can have some triggers in some epilepsy syndromes that are more frequent than in others, but in general, having a good lifestyle is good for your epilepsy, is good for your health in general. And that's also how you can sometimes discuss morbidities associated with their disease, just because you can say “Well, if you sleep well, if you go for a walk regularly, then you feel better and then also your epilepsy will be controlled more easily.”. So, they made their connection in their head “If I live healthy, if I try to have a regular lifestyle, avoid sleep deprivation, et cetera.” (especially for teenagers!), you can learn, then, in that way, to have more… to empower themselves to treat their disease and to have control over their disease a little bit.
06:43 Torie Robinson
And also, just thinking back to when I was a teenager or child,.. gosh, you need your sleep anyway, whether you have epilepsy or not, right?!
06:50 Matthias De Wachter
Yeah!
06:50 Torie Robinson
So… and rather than having your parents say “Come on, get out of bed, you lazy whatever!”; it's like “No, darling, I need it for health. I really do.” !”.
06:52 Matthias De Wachter
Yeah, I always try but you know teenagers they can be like… there's no teenager that believes you from the first time (!) but…
07:08 Torie Robinson
No!
07:08 Matthias De Wachter
…if you try to be… if you also try to listen to them, like “What are you feeling about it? We're not talking to your dad, we’re not talking to your mum right now, but what about you?” and I think they appreciate that.
07:23 Torie Robinson
You're making me think of a topic that we've covered before, which is when you cross over from paediatric to adult care, and that can just be an issue as well. Are you involved in that at all, like with adult neurologists?
07:36 Matthias De Wachter
We have a transition consultation in which our adult neurologists and we're doing the consultation together.
07:47 Torie Robinson
Oh, cool.
07:47 Matthias De Wachter
So, we prepare them here, last 2 consultations we saying “Okay, we're going to the adult neurologist and then we're coming together.”; we explain to the adult neurologist “This is what we've done, these are the issues at this moment.”. And then the adult neurologist gives her view/their view on what they think is the best, and then, and then, yeah, they are in the transition. And I think it works quite well.
08:22 Torie Robinson
I don't know, I'm just thinking “Gosh, did that happen when I was a kid?” - I don't know, because I can't remember much of my childhood, haha!
You showed me a paper before we spoke. Tell us about your research.
08:35 Matthias De Wachter
So, my PhD is mainly about precision medicine and implementation of these strategies in clinical practice. And we recently, indeed, wrote a paper about Amitriptyline, which is an anti-depressive medication, which can be used in KCNQ2 and 3 (very rare epilepsy syndromes), which have a genetic mutation in which the function of the channel is, like, more “open”. So, the channel is more open, which is called the gain of function.
09:13 Torie Robinson
Ok.
09:14 Matthias De Wachter
And the Amitriptyline can close the channel. And it can be used, like, as a precision medicine approach to treat these patients. They sometimes have epilepsy, not always, they have behavioural problems, they can have autism, so intellectual disability. So, yeah, the paper was about assessing the different domains that can be affected and their functioning in daily life. And we had some, back and forth results so there were not always very good in every patient but there are some patients that are doing better in terms of alertness and skill acquisition so it was an interesting project to do.
10:08 Torie Robinson
It's drug repurposing, right? I think that's, like, I wonder how many opportunities are yet to be found in drugs that are used for or targeted to be used for one disease but actually can be used in another. I'm taking a drug at the moment called quetiapine, which is an antipsychotic. I'm lucky I don't have psychosis and I don't have schizophrenia or bipolar, but, it's been amazing to help me sleep.
10:31 Matthias De Wachter
Mmm.
10:31 Torie Robinson
Amazing! And then, you know, what is better sleep means less seizure risk, which… so it's almost been like inadvertently an anti-seizure medication for me, you know? And I think [that] thinking “outside the box” like that… it's really important when it comes to the complexity of people affected by rare diseases and the rare epilepsies. Do you reckon?
10:55 Matthias De Wachter
Yeah, it's for sure. It's the case, I mean, we need to think out of the box sometimes, especially in rare genetic diseases, because, often it's not that easy to help these children and their families. And then we need to look for other things to help them. Of course, we need also to be careful that we don't use strategies that are, yeah, based on limited evidence or…
11:29 Torie Robinson
Of course. Yeah.
11:30 Matthias De Wachter
Yeah, we need to be careful but I think, I mean, all the Fenfluramine story in Dravet syndrome, it's just a repurposing story and it's amazing what it did to the seizure control in Dravet patients and potentially on their development. We don't know that yet, but yeah, let's see. We are now doing a clinical trial for Fenfluramine in young children from 1 year old, so let's hope we can have some good results on other domains than just seizures.
12:14 Torie Robinson
And so, do you have any studies at the moment for which you are seeking candidates, if anybody wants to get in touch, or clinicians even, or other researchers, as well as families?
12:25 Matthias De Wachter
The most important one is indeed the one I've just mentioned. So, Fenfluramine for the young children with Dravet syndrome. And then we will get started with some new studies about Tuberous Sclerosis Complex as well…
12:44 Torie Robinson
Oh, cool!
12:46 Matthias De Wachter
…but they're not up and running yet, but they will start shortly. Yeah.
12:49 Torie Robinson
I’ve somebody in mind for you already. Yeah!
12:54 Matthias De Wachter
Oh, perfect, yeah! You can always refer them to the website of the University Hospital in Antwerp and then they can get in touch with me.
13:04 Torie Robinson
Thank you to Matthias for showing such openness, care, and empathy to people and families affected by the epilepsies - through both his clinical work and his research!
Check out more about Matthias and his work on the website torierobinson.com (where you can access the podcast, this video, and the transcription of this whole episode) all in one place, and, if you’re new and you haven’t done so already, please do like and comment on this episode and subscribe to our channel so we can get more people interested in and learning FACTS about the epilepsies! See you next week!
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Matthias De Wachter studied medicine, trained as a paediatrician, and trained as a paediatric neurologist at the University of Antwerp, Belgium. He gained clinical experience during his training in various hospitals, including Queen Paola Children's Hospital and the Pulderbos Rehabilitation Centre. During his training as a paediatric neurologist he developed an interest in rare genetic epilepsies and as part of an ongoing doctoral project (at the Filadelfia Hospital in Denmark) he conducted research into the clinical characteristics and precision treatment of these disorders.
Matthias' current foci are the care for the children affected by rare epilepsies and general paediatric neurology at the UZI, plus he also works 1 day/week at the Centre for Developmental Disorders.
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ResearchGate Matthias-De-Wachter-2218716600
Article mentioned pubmed.ncbi.nlm.nih.gov/39962862/