Acute Symptomatic Seizures: Weaning Babies Off Of ASMs - Maria Gogou, University General Hospital of Alexandroupolis, Greece
Who knew: Acute Asymptomatic Seizures aren’t epileptic (although they appear to be on EEG), and the babies and children experiencing them can be carefully weaned off of the anti-seizure medications they are on. Paediatric neurologist and epilepsy specialist Maria Gogou from University General Hospital of Alexandroupolis, Greece, explains more.
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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Fellow homo sapiens! My name is Torie Robinson, and, welcome to, or welcome back to: Epilepsy Sparks Insights.
Anyone can experience Acute Symptomatic Seizures - and in fact we spoke about them in adults - with epileptologist Claude Steriade from NYU Langone Health earlier this year! - you can check out our fabulous chat here!
But today we are hearing from paediatric neurologist Maria Gogou about Acute Symptomatic Seizures in children and babies, the potential causes, how to treat the seizures, and when to wean the child off of the anti-seizure medications! Maria also includes some great tips/guidance for neurologists not overly familiar with this type of seizure or the rare epilepsies as a whole.
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.
Maria Gogou
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.
Okay, so, it's very briefly: seizures which happen in very close, very close, temporal relationship with an acute insult of the central nervous system, like a stroke or a trauma or some internal bleeding or a metabolic disturbance. So, those patients experience seizures. But in fact, there's no background of epilepsy. So, the likelihood of a seizure relapse in future is quite low and they do not usually develop epilepsy. So, in those cases, sometimes we have to start a medication during the acute phase just to cover them and prevent from more seizure activity, you know, within the first few days after the insult. But, in most of those cases, there is no need actually for long-term anti-seizure treatment. So, this is something we wanted to look at in our Trust and see what's happening in those cases and we realised that there are no established guidelines actually about how long those patients should be kept on a anti-seizure medication treatment. This in part can be due to the different aetiologies which can lead to acute symptomatic seizures. But this can also be related to factors associated with the hospital care, like as I mentioned before; changes in medical cover and unplanned discharges and transfers of patients. So, we decided to why not do it a Quality of Improvement project and try to reduce variability in our everyday clinical practice. So, what we did is we tried to educate hospital staff about acute symptomatic seizures and increase awareness of this condition. So, we launched some educational videos and created informative posters for medical wards. We started delivering 1-to-1 training sessions to medical and nursing staff from other wards (beyond neurology, like; intensive care units and renal or oncology and neurosurgery department), and we also created informative leaflets about acute symptomatic seizures for parents of those children to make them aware of what exactly the seizures their children had are and about the fact that they may not really need long-term anti-seizure treatment.
And in order to make sure we have sustainability in this attempt, in this project, we have also introduced a smart phrase in all these chart summaries in our trust, which actually the smart phrase is a gentle reminder that if this patient is on anti-seizure medications on these charts; consider if they really need them and work out a weaning plan talking with their treating doctors.
So, we're going to audit the results of this intervention and compare the rates of long-term treatment with anti-seizure medication after acute symptomatic seizures before and after our intervention.
Torie Robinson
And again, thinking about this from a patient and even family perspective, like, if you can get off, you don't need to be on drugs, right? You want to come off them! Because of, as mentioned before, the impact of anti-seizure medications (as well as other medications) - but in this case, anti-seizure medications - can be enormous, like affecting your cognitive function, affecting your mood, affecting your life.
Maria Gogou
Exactly.
Torie Robinson
Your whole life and quality of your life! So, to be able to get off them would be amazing rather than remain. And if they could get off them earlier, wow.
Maria Gogou
Well, this is very important. I would say that a group of patients who often experience acute symptomatic seizures are newborns/babies. So, newborns, especially [those in] intensive care units, can have strokes and some bleeding, and hypoxia-related events. So, it's not uncommon [for them] to have seizures, but the majority of those babies don't have epilepsy and they do not really need anti-seizure medications after their discharge. And one of the medications we use for neonatal seizures is phenobarbital, which is a fantastic medication; very effective and very helpful, but it can have side effects; it can lead to sedation sometimes. So, if a baby does not really need this medication, it's very helpful, very useful, to be aware of that, and try and wean [them off of] it before their discharge. And actually, studies have shown that the duration of the treatment in those cases doesn't alter the outcome, in fact. So, treating them for longer doesn't prevent the development of epilepsy. If someone develops epilepsy in future (which is the minority of cases of course), but if this happens, does not depend on the duration of the previous treatment with anti-seizure medication. So, it's worth trying doing that.
But in all those cases, what I want to highlight is that weaning is a very individualised process. It needs to be very adjusted and tailored to the needs of its patient and to the coexisting problems. For example: when we decide to take a medication off, we need to counsel patients and families (I keep saying “families” because I work with children) very closely, and update them about any potential risks - and the possibility of seizure relapse of course. We need to have updated rescue plans and make sure they get hold of other seizure rescue medications and try and implement the weaning process during a time period which is convenient for family dynamics. So, we tend to speak about personalised medicine and individualised approach[es] when we implement a new treatment, but I would say that when we decide to stop (to de-escalate) treatment, it's also important to take an individualised approach to things.
Torie Robinson
You've just made me think of Ford factories. You know, how there's a stereotype, of how, back in the day, when they started having…gosh, I sound like I'm promoting them, but you know, like McDonald's restaurants, [they] have these processes where everything is the same. Everything is automatic and boom, boom, boom. Everything comes out exactly the same. And it could not be more different for people affected by epilepsy, whether it be children or adults. Everything is so individualised (as you've been saying). Don't treat them like they're a Big Mac. It's much more complicated than that or much more individualised and personalised.
Maria Gogou
Exactly, which is something which needs time. You need to invest in this relationship with the patient, and meet them in-depth, and ask questions again and again, and be available and open to discuss and reconsider, take steps back, and decide again.
Torie Robinson
What would you recommend to clinicians who are thinking “Okay, I agree with everything you're saying, but I'm under so much stress and I have so little time, how on earth do I achieve this?!”. What would you say to that?
Maria Gogou
I would say that it's helpful to be open with the patients to set some…some limits and some rules of communication with them from the very beginning. So, it's very helpful to say “I prefer to be contacted during those hours” or “I feel more comfortable when contacted by a text message or an email rather than calling me and ringing me”. So, I would say that honesty is the first step to be done.
Now, for clinicians who don't feel very familiar with taking a decision in a special circumstance (because this can happen; we cannot be experts in every field), I would say that it's not bad to discuss complex and difficult cases with other colleagues who may have some bigger expertise in field. So, if we just put patients first and prioritise their benefit, I think we can find solutions. And of course, there are days that all of us feel very overwhelmed with phone calls and urgent issues in the world, and referrals from other departments! But yeah, I think if our first priority is patient's benefit, I think we can find ways to cope with that. And collaboration is the cornerstone.
Torie Robinson
I like that: collaboration and recognition that it's okay to ask for help, that you're not expected to know everything. I've said this in other episodes where one of my favourite, most memorable moments with a neurologist was when he said “I don't really know the answer actually, but I'll find out. I'll go and speak to somebody else.”. And I thought “Wow, that really builds my trust in him because he was honest about not knowing everything.” When people pretend to know everything, I'm like “For God's sake. Like, of course you don't!”, you know? And it decreases the level of trust. So yeah, I can say from our perspective, I really appreciate it if a clinician says, I'm gonna work with other people to try and improve the quality of life of you or your child and look at it as a long-term relationship too, like you were saying.
Maria Gogou
And perhaps the less familiar someone is with the situation, the more frequent the follow ups and the visits and the encounters with the patients can be. So, if you are super familiar with an epilepsy syndrome, for example, you can just say a few things in advance. You are confident with the trajectory perhaps the patient will follow or with potential side effects. If you don't feel so familiar, I think a very good way to cope with that is to touch base with the family more frequently to cover for this gap.
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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. -