Staying On A Keto Diet That “Doesn't Work”?! - Maria Gogou, University General Hospital of Alexandroupolis, Greece
It turns out that the ketogenic diet can significantly benefit children with epilepsy - even when it doesn’t control their seizures! Paediatric neurologist Maria Gogou discusses her work in managing rare and complex epilepsies in children and the importance of considering factors beyond seizure frequency.
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Maria Gogou
when we looked at the cases where we did it (so: children with no big improvement in seizure frequency after the diet, but we still attempted to wean medications) - we realised that in the vast majority of them this was successful.
00:16 Torie Robinson
Wow.
00:17 Torie Robinson
Fellow homo sapiens! My name is Torie Robinson, and, welcome to, or welcome back to: Epilepsy Sparks Insights.
The more we learn about the ketogenic diet the more we learn of its correlations with improvements in things other than potential seizure control - such as improved mood and alertness. Today we hear from the brilliant paediatric neurologist Maria Gogou who, in part 1 of 2, shares how she’s learnt that sometimes, it can be worth a person staying on the diet - even when it hasn’t improved their seizure control!
Please don’t forget to share your thoughts on this episode with us in the comments below, like the episode, and do subscribe so that we can educate and empower both more people affected by the epilepsies and indeed more clinicians with patients who have an epilepsy - to provide the best care possible.
01:04 Maria Gogou
So, my name is Maria Gogou and I'm a paediatric neurologist trained in London at Greater Manchester Hospital and at the Evelina Children's Hospital, with a special interest on complex and rare epilepsies. Currently, I am back in my home country in Greece and work as a consultant paediatric neurologist in a university hospital in a city called Alexandroupolis (in the northern part of the country).
01:30 Torie Robinson
Why did you become a paediatric neurologist and why do you focus on rare and complex epilepsies?
01:35 Maria Gogou
Well, soon after my graduation from medical school, I completed a PhD focused on sleep disorders among children with genetic epilepsies. So, I was touched by some very special features of those patients, like, coping with uncertainty and this disruptive nature of their disease. So, I felt the need to dig deeper into their needs, and from this point of view, would say that my interest in epilepsy pushed me to become a paediatric neurologist as well.
02:09 Torie Robinson
And you're still doing it, so it must be a, well, it is an ongoing, like almost exciting, complex area of medicine forever changing, right?
02:18 Maria Gogou
Exactly, and I would highlight the “ever-changing” because there is so much progress and it's exciting but at the same time very challenging and tricky sometimes to keep up with everything new which comes to the light. But I would say that I'm learning many things every day from my interaction with my patients. So, I would say that epilepsy management is somehow a part of my life.
02:45 Torie Robinson
Any families, patients, you hear that, see; we have someone completely dedicated to your quality of life. And quality of life is a huge, huge thing, right? It's not just about seizure control.
02:55 Maria Gogou
Exactly, and my work with the patients with complex epilepsy made me realise that. So, when I was a young doctor-in-training in epileptology, I used to focus on seizure frequency and the impact of treatments on the seizure burden (so, on the number of seizures someone is having), but soon I realised that this was not always the case and that there were a number of additional things which matter. And I will never forget one day in one of the ketogenic diet clinics I used to do: I was discussing with the father of a lovely little child about the impact of the diet. And I realised that actually there was no change in seizure frequency (she still kept on having seizures). And very spontaneously, as a young doctor, I said “Okay, so, there is no benefit actually from the diet.” and I received the answer from the father “Oh no, of course there is. We have been able to reduce a number of your medications. Things are much better now!”. So, this, you know, rang a bell, I felt like “What happened? I missed the point!”! And beyond the seizure frequency, weaning of anti-seizure medications after a new treatment approach can also be a therapeutic goal. And this pushed me and my colleagues (I worked at Great Ormond Street at that time) to investigate this in more depth. And so, we conducted a project looking at weaning of anti-seizure medications in children after starting them on the ketogenic diet.
The inspiration for this work was the feedback from my families that they felt that reducing 1 or more of the previously used anti-seizure medications would be an additional benefit after the onset of the diet. And we realised that we don't very systematically discuss it in clinics. So, we spent a lot of time - and this is reflected in clinic letters and discharge summaries as well - we spend a lot of time discussing new medications and new treatment approaches and we make new suggestions. We don't spend equal time discussing weaning off medication which hasn't worked, weaning off medication which the patient doesn't need anymore, or weaning off medication which can be associated with side-effects sometimes. And we say that if the ketogenic diet is as effective as a medication, why not considering weaning/reducing the total number of the other medications once the diet has been established? So, we looked back at the patients [who were] started on the ketogenic diet during a 5 year time period. And we realised that we actually discussed about - and attempted - weaning off 1 or more medications in about three quarters of them. And those patients in whom we attempted weaning 1 or more medications, they were mainly children who had responded well to the diet, which meant that they had experienced at least a 50 % reduction in the seizure frequency. And once attempted, weaning was actually successful in two thirds of them - so, a quite big number! And when I say “successful” I mean that we didn't have to restart the medication or start or introduce another medication. On the other hand, we also looked at children who had not responded to the diet; so they had not experienced any significant improvement in their seizures, which can happen many times.In those cases, we didn't consider (frequently) weaning off anti-seizure medications. However, when we looked at the cases where we did it (so: children with no big improvement in seizure frequency after the diet, but we still attempted to wean medications) - we realised that in the vast majority of them this was successful.
07:12 Torie Robinson
Wow!
07:13 Maria Gogou
So, this was interesting because if seizure frequency doesn't preclude the outcome of weaning [off] 1 anti-seizure medication, why not discussing that earlier? Why not, considering that in patients who haven't had, you know, an impressive improvement in their seizure frequency? So, this was actually a very interesting point which made us also change our everyday practice in clinics. So, now we have a template for every child starting on the diet; where we record the baseline visit and all follow up clinic visits, and now the idea of weaning [them off of] one or more medications is introduced from the very beginning as a potential therapeutic goal. But also, there is a gentle reminder in every of the follow-up visits. So: is this patient eligible for weaning one of the previous medications? What do the families think? And what do the patients say, of course?
08:18 Torie Robinson
So, just to clarify, so, sometimes about a third of patients do not have their seizures controlled by the ketogenic diet, right? But despite that, you may be able to still start weaning them off their anti-seizure medications.
08:34 Maria Gogou
Exactly, exactly. So, the success or not of weaning [them off of] at least one of the seizure medication doesn't solely depend on the improvement of the seizure frequency.
08:43 Torie Robinson
And do you think that that is affected… is that as a result of the ketogenic diet, which doesn't appear, overtly to have a positive impact on seizure reduction, or could it be that they were on too many drugs in the first place? What could it be?
08:58 Maria Gogou
I think that the ketogenic diet, as every other therapeutic intervention, can have benefits which are beyond [minimising] the seizure frequency. So sometimes the seizure frequency remains the same, but seizures are much less intense. The seizures are shorter in duration, which means not a big need for frequent use of rescue medications, not frequent admissions. So, this makes things more settled and gives the opportunity to clinicians and families and carers to consider reducing the total drug burden. So yes, there are benefits beyond the number of the seizures.
09:40 Torie Robinson
So, that third of people that don't have their seizures controlled, they may still have benefits of the diet impacting their quality of life.
09:49 Maria
Exactly, yes.
09:51 Torie Robinson
This is so cool. I just think.. it seems obvious when you say it, (like what you have learned from this work), but I do think often clinicians just don't see beyond, okay, does this drug work? Let's try another drug. That's kind of… especially with short appointments. It's like, we don't have enough time to think about this. And it's like, okay, try this one on top of that other one, maybe.
10:15 Maria Gogou
Yes, and this can also be in part due to a fragmented type of care. So, medical work can be busy. So, there are changes in the doctors who cover for the patients. A patient can be admitted even in a specialised centre, but may be seen by a doctor who is not very familiar with them (because of gaps in the rotas and understaffing, and all those things most of us are familiar with). So, it is sometimes more straightforward to just suggest another medication just to be on the safe side of things…
10:49 Torie Robinson
Supposedly safe..!
10:50 Maria Gogou
Yes, supposedly - this is another issue I will highlight - but not so easily consider weaning medications which do not work which are not effective actually.
And when you say “safe”, this is completely true because there is a number of side-effects related to medications; including anti-seizure medications. And it's not uncommon for patients and families not to be aware of them at all. So, I've not forget a couple of cases of patients of my own when I asked them “So, are there any side effects after we have started this new medication?” and they will say “No, it's okay.”. But when I moved from an open to a closed question and I'm asking “Have you noticed ‘this’ change in your child?” or “Has ‘this’ occurred?”, they are surprised and say “Yes, was this a side effect? Could this be related to the medication? We had never thought about that before!”. So, I think we need to educate families and patients more around the anti-seizure medication issues and side effects they could expect.
12:01 Torie Robinson
I just think that's so important. I'm thinking personal experience as well. Especially, it's so, so important, I think often for parents and carers in general to be just more aware of any little changes because especially if you're a child and especially if you have some intellectual disability or cognitive issues it's even more important for mum and dad (if you have both, if you're lucky!) or whoever's looking after you to notice subtle differences. Right? So, so subtle. Because, and especially when they're little, you just kind of “accept” awfulness. You don't challenge it, it just happens. And they're like “Okay, this is how I feel now.”. And yeah, and you need to know about that, but the clinicians need to ask the right questions in the right way.
12:49 Maria Gogou
Exactly, you're absolutely right. And I think this also reflects the quality of the relationship between the clinician and the patient and the family. So, is this a trust-based relationship? And how much engaged and involved are families in decision-making? So, yes, weaning off of a anti-seizure medications requires a good and trustful relationship between clinicians and patients.
Torie Robinson (13:34.946)
Ok, well everyone look up this cool paper “Anti-seizure medication reduction and withdrawal in children with drug resistant epilepsy after starting the ketogenic diet”.
13:26 Maria Gogou
It's published in Developmental Medicine & Child Neurology, so they can have a look at this. And, actually, this work we made in this field inspired us to go one step forward and look at another group of patients who have seizures, but they may not really need anti-seizure medications for long. And I refer to patients who experience Acute Symptomatic Seizures.
13:50 Torie Robinson
And there is our topic for next week with Maria! Thank you so much to Maria for her top-notch insight into the potential impacts of the ketogenic diet - other than seizure control - and why this must be valued by clinicians if we also value a person’s quality of life! Get ready for part 2 with Maria next week where - you guessed it - we talk about Acute Symptomaic Seizures!
Do check out Maria’s mentioned paper and more about her work on the website torierobinson.com (where you can also access the podcast, the video, and the transcription of this episode), and if
you haven’t already, don’t forget to like, comment, and subscribe to the channel and share this episode with your friends/colleagues/family members(!) and see you next week!
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Maria is a Paediatric Neurologist trained in London (Great Ormond Street Hospital for children & Evelina London Children's Hospital). She currently works as a Consultant Paediatric Neurologist at University General Hospital of Alexandroupolis in Greece running a regular outpatient paediatric neurology clinic and leading the paediatric EEG Department.
Maria has a PhD in Paediatric Neurology (Title of thesis: Investigation of sleep disorders in children with idiopathic epilepsy with the use of polyomnography) and a Master's degree in Clinical Pharmacology and Therapeutics. Her research interests are focused on the relationship between sleep and epilepsy, epilepsy genetics, epilepsy surgery and the ketogenic diet. -
X/Twitter: https://x.com/mariagogou6
LinkedIn: maria-g
Paper: https://onlinelibrary.wiley.com/doi/full/10.1111/dmcn.15377
ILAE: maria-gogou
ResearchGate: Maria-Gogou
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Developmental Medicine & Child Neurology: https://onlinelibrary.wiley.com/doi/full/10.1111/dmcn.15377
ResearchGate: Antiseizure_medication_reduction_and_withdrawal_in_children_with_drug-resistant_epilepsy_after_starting_the_ketogenic_diet