Ep. 191: FND in children and adults: different or the same?

00:00:00: Welcome to EANcast, your weekly source for education research and updates from the European Academy of Neurology.

00:00:15: Hello and welcome to Eancast Weekly Neurology!

00:00:19: My name is Megan Watson.

00:00:21: I have worked in a functional neurological disorders field for a decade using my background in neuroscience mental health business and healthcare administration.

00:00:31: I currently serve as the program director of the FND Program at The University Of Colorado in the

00:00:36: U.S.,

00:00:37: and I founded and chair the F&D Society Pediatric Special Interest Group, as well as co-author Reset & Rewire – The FND Workbook for Kids And Teens.

00:00:47: Our discussion today is part of a podcast series our Children's Small Adults!

00:00:52: In this episode we will talk about functional neurological disorder.

00:00:58: My guests today are Dr.

00:00:59: Pavlina Danhofer and Dr.

00:01:01: Natalia Shaco.

00:01:03: Dr.

00:01:03: Dan Hofer is an associate professor, a pediatric neurologist at the University of Bernow Czech Republic.

00:01:09: She serves as e-learning liaison on the EAN FND panel And has developed in FND clinics for children.

00:01:17: she specialized in fnd As well as rare and genetic neurodevelopmental disorders.

00:01:23: Dr.

00:01:23: Shaco is a neurologist and board member of the European Society for The Study Of Tourette's Syndrome, And also A Child Neurology Panel Member of EAN.

00:01:33: She Is Working At The Medical University Of Warsaw And Specialized Psychiatric Center at Woodge Poland And Is Specialized In Movement Disorders Mainly TICS & Functional Movement Disorder But Also Neuropsychiatry.

00:01:45: Welcome to you both!

00:01:47: Thank You For Joining Us Today.

00:01:49: Hello thankyouforhavingus hello.

00:01:54: The first question I have for you both involves definitions.

00:01:58: You know, although FND is a highly prevalent condition it does remain widely under-recognized and often goes ignored in everyday practice.

00:02:06: Dr Dan Hoffer could you please provide a definition of FND?

00:02:11: Yes... It's quite difficult to make a brief definition but we can say that easily.

00:02:20: functional neurological disorder is a condition in which person experiences abnormal function, that can be shown to be normal.

00:02:33: It means the system organ or limb briefly has impaired functions but patient does not have control over it.

00:02:43: Normally we explain this with patients like there's software error.

00:02:53: Absolutely, yes.

00:02:54: So difficult to define.

00:02:56: thank you so much.

00:02:57: and Dr Shaco wondering if you could tell us a little bit about how FND is diagnosed?

00:03:04: Yeah, so thank you so much Pavlina also for giving this definition and it's true that I think recently we are trying to sort of highlight the disorder functioning but on the other hand new biomarkers showing patients with FND have some changes in their transmission.

00:03:28: So we are learning more and more, but especially for children and parents.

00:03:32: I think it's great that we have this possibility to use this metaphor of software and hardware.

00:03:39: But yes in terms of the diagnosis This also changed a lot recently.

00:03:42: so before you know And probably everybody Each neurologist, you know we remember these times where all this patients they were coming with.

00:03:51: All of the different investigations made and to exclude other disorders.

00:03:58: but now actually to diagnose FND We consider it's a rule in diagnosis.

00:04:04: so we diagnose on positive signs based on the positive sign which means that There are specific signs in neurological exam, in the patient's history that help us to diagnose FND.

00:04:19: For example you know coming from again movement disorders field and like specialty specialists.

00:04:27: so we know if a child has an onset sudden onset of ticks at age of fifteen it is highly unlikely its Tourette syndrome by It's like, ninety percent of Tourette patients they start with ticks before the age of twelve.

00:04:44: So if their onset is sudden at a later age than twelve then you already started thinking okay this is like a red flag for F&D or... For example in patient with seizures If the patient has these side-to-side head movements and very strong closure on eyes And episodes are very long.

00:05:07: Then also think This is maybe not a seizure, but well there's also discussion about it dissociative seizure or you know because we are moving.

00:05:17: Also this another interesting conversation the names right that were using them anyway.

00:05:22: so Or in the parises There some specific signs That they're showing that may be its nuts due to stroke But it's functional parises.

00:05:32: So for example a Hoover sign.

00:05:35: In other words now Ruling diagnosis is a positive based on positive signs, not that you have to conduct or exclude all other diseases at the end.

00:05:49: I really encourage the neurologist to check this and science and ask if history is key here too.

00:05:59: Absolutely yep those clinical signs.

00:06:00: of course the clinical story.

00:06:03: Dr.

00:06:03: Dan Hoffer, Dr.

00:06:05: Shaco mentioned that FND shows up all across the neurology clinic.

00:06:11: would you mind telling us about the most prevalent clinical phenotypes of FND?

00:06:17: I think as we talk about children or adults there is not a big difference in general group of Fnds.

00:06:25: briefly they can be classified according to system day effect.

00:06:32: So mostly we see functional movement disorders as Natalia said already.

00:06:40: Functional tremor, functional myoclonus function dystonia with its specific features.

00:06:47: very often in children We can also see functional limp weakness or a functional gait disturbance.

00:06:55: This is quite often especially in epilepsy centers.

00:06:58: so we meet the functional seizures which are very common there, and they're really interesting from the point of differential diagnosis.

00:07:08: Sometimes it's quite difficult to differentiate between epileptic and non-epileptic seizure or functional seizure And then not so commonly but also seen our functional sensory symptoms in general visual symptoms Functional speech or cognitive disorders functional dizziness or anything you can imagine in the nervous system.

00:07:34: Together with neurological science, we do not have to overlook comorbidities of these patients like depression and features of anxieties which are sometimes overlooked but very important from a quality-of-life point of view also.

00:07:53: they often refer very subtle problems when you compare them with the neurological signs.

00:08:02: But for example some chronic pelvic pain, irritable bowel syndrome or anything.

00:08:09: so really they can be very complex and we should not concentrate only on the neurological sign but look widely in range of symptoms that a patient has

00:08:24: absolutely At least in the adult literature, which we do have a little bit more data on adults with FNDs than peeds.

00:08:32: We do see that it's generally around one and four That show up to an outpatient neurology clinic will have some sort of FND symptoms.

00:08:40: So again quite highly prevalent condition.

00:08:43: But let's go ahead and come to the main topic of our podcast Dr Shaco does The phenomenology of fnd differ between children and adults?

00:08:54: Yeah, well it's quite a difficult question because unfortunately as you all know at least my co-speakers Pavlina and Megan.

00:09:06: You are also working with children.

00:09:08: that is highly understudied topic unfortunately in the moment we're learning about.

00:09:14: but some preliminary data really preliminary very scarce literature showing Maybe, well but I'm just telling you that it's only based on very limited data.

00:09:30: That in children... Well seems like the phenotype generally is more phenomenology and onset is more abrupt.

00:09:39: It could be also in adults But even more in children And more related to stressors then in adults, it seems that could be more insidious.

00:09:51: And therefore we will come to the prognosis.

00:09:53: but also has to do with the prognosis and generally children have better prognoses.

00:10:01: of course I'm talking about this is a general assumption.

00:10:05: again from preliminary literature.

00:10:09: As Pavlina mentioned, almost every symptom can be a neurological symptom could an FND related.

00:10:17: But it seems that in children especially these motor symptoms such as movement disorders functional ticks or this limp weakness is one of the predominant phenotypes.

00:10:30: well then its followed by dissociative seizures In adults, it seems that at least from my clinical also experience.

00:10:39: It's often an overlap with different... You know?

00:10:42: At the end is true many of our patients are also children.

00:10:46: they have also an overlay on different symptoms.

00:10:50: for example one of my patients.

00:10:52: she had first functionality like behaviors then she had dissociative seizures and also functional mutism.

00:11:00: so you now its often changes.

00:11:03: But that would be at least what we know from the literature.

00:11:08: It's not clear, but I'd say generally in terms of prognosis... In children and adolescents it is better than older adults taking together.

00:11:32: dive into prognosis here in a minute, but let's focus on children a bit more.

00:11:36: Dr Dan Hoffer what do we know about the onset of FND?

00:11:40: Dr Shaco mentioned a little bit, but about the onset in children when these FND symptoms typically present for them.

00:11:48: and are there any differences?

00:11:50: I

00:11:55: think that there are quite good epidemiological data, we have two peaks of incidents.

00:12:03: One peak is adolescence.

00:12:05: it means around twelve to sixteen years and i think most patients manifest their clinical symptoms in this age.

00:12:16: another peak is adulthood.

00:12:19: This isn't my domain but will talk about children But there are also some exceptions.

00:12:26: We have also younger children, the youngest we have is around five years old but they're really rare in this age group.

00:12:37: so it's adolescence and I think its connected with developmental aspect of this period In life hormones, predominantly in women of course.

00:12:51: And also the conflict at this age with growing up and taking responsibility for its own personality?

00:13:03: Absolutely!

00:13:04: And same question to you Dr Shaco but if don't mind focusing on adults

00:13:09: Exactly, I can only echo what Pavlina said.

00:13:13: So generally we have these two peaks and it's true that in adults... It is generally this younger adult between thirty and forty.

00:13:23: This is like the epidemiological studies are showing this.

00:13:28: And then yes there another interesting finding but at moment don't really understand.

00:13:37: Well, it's the same in children and adolescents that is more predominant than females.

00:13:42: But we really don't know why.

00:13:44: I mean here i can only encourage other our listeners first to.

00:13:50: there will be another podcast about biological sex differences That would be part of the FND related podcasts Of European Academy of Neurology.

00:14:00: And uh We have also the sex and gender group in the functional neurological disorders society where I'm fortunate to be involved also.

00:14:11: Generally, there we are trying find out why this female predominance?

00:14:17: because really don't know it's true that could be due hormones

00:14:22: but...

00:14:23: It's also not clear, or to some biological differences.

00:14:28: But it could be that there is also some kind of implicit historical bias unfortunately meaning we are just more inclined to diagnose females with FND because of this historical background of Charcot who was saying so this hysteria and then other point maybe males on the other hand they're not... as frequently, they don't want to go doctors with this kind of problems.

00:14:57: They just ignore it or they are ignored.

00:15:00: maybe the same for boys you know.

00:15:03: so its an interesting topic like intersection between biological and social biases that we're all involved in.

00:15:13: I really encourage if somebody is interested on these topics.

00:15:16: another thing what Pavlina mentioned this FND in very small children, which is rare.

00:15:21: But why it occurs?

00:15:23: In my opinion from experience at least usually you should search for a trigger there on the family dynamics or unfortunately some kind of also inter-familiar problem.

00:15:37: Well, rarely at this age group.

00:15:41: Also somewhere in the school environment but more I would say in family and then also F&D in elderly people you know?

00:15:49: This is another interesting topic under study.

00:15:52: mainly summarizing we have these two pics of all younger adults And again there's female predominance.

00:16:00: But like i said And just to wrap up, one more thing interesting is that we have another interesting discussion about gender minorities.

00:16:11: There are some preliminary data and the research in this field showing maybe it's more prevalent in F&D than general sort of society.

00:16:23: but again its understudied

00:16:32: very small studies on the sex and gender minorities in this population.

00:16:36: But let's shift to pathophysiology, so The Pathophysiology of FND I think for even neurologists can be quite complex to explain And despite small study showing functional MRI changes of those who have FND compared to controls, we still don't know enough about this disorder.

00:16:56: So if both of you could speak on the pathophysiologic model for FND and whether

00:17:11: You know, on the one hand actually we wrote an interesting systematic review about this topic by a marker surf FND.

00:17:23: It's really fascinating.

00:17:24: On One Hand it is We don't Really Know A Lot yet But We Learned A Lot Already.

00:17:30: I think that Generally Speaking We Can Say That At The Beginning Pavlina Said That We Know That And Suspect and From The Neuroimaging It's a disorder that is involved in the control of their motor system and they're controlled by movement.

00:17:50: And then these people, patients with FND, neuroimaging studies are showing on the other hand... Neuroimaging but not only neuroimagining.

00:18:01: there also a pattern of alexitemia so lack sometimes understanding emotions and also the interception of understanding what my own body is doing.

00:18:17: And thanks to this, through this understanding of pathophysiology we are developing new treatments that are helpful for our patients because then they can use it to improve their interception.

00:18:31: more recently stress and stress pathways are also very important in development of FND.

00:18:40: This is like

00:18:42: a

00:18:42: complex topic too, because on the other hand not every patient... And this I want to really highlight Not Every Patient or Child with FND Has A Clear Stressor Or Like A Trauma That's At least i hear this constantly.

00:18:58: that you know.

00:18:59: sometimes we're searching for huge trauma but Sometimes Well, it depends.

00:19:04: The definition of trauma or stress is different for each person.

00:19:08: but I would say that you know these are the highlights.

00:19:11: But then with more recently even genetic background has investigated by markers like a set stress but also even inflammatory biomarkers.

00:19:23: Also what i would say?

00:19:24: That the most important Is execution movement control this Alexitemia interception and the stress regulatory pathway.

00:19:35: At least from my experience, I think a little bit what i know of their literature... The models by Kasia Kosłowska who is very involved in pediatrics and it's more about children related to distress or pathophysiological backgrounds even more than adults.

00:19:59: But again, this is very preliminary.

00:20:01: We don't really have a comparison at the moment with clear data.

00:20:05: Pavlina do you want to add something?

00:20:08: I'm just thinking about what you've said.

00:20:11: yes i agree.

00:20:13: uh...I think easily set.

00:20:15: it's just a neural network problem.

00:20:20: It's very complex.

00:20:22: Uh..it's connected with interoception extroception and emotions.

00:20:26: Its connected with stress especially in children, I agree.

00:20:31: The stress is not the main thing there.

00:20:34: of course we have FND after infection, FND After Trauma anything so patients usually have fear that they... We send them to the psychiatrist easily saying and They've problem with this but..we can see our patience.

00:20:51: Especially adolescents are very sensitive personalities normally functioning but quite special in coping with stress, pain and working or functioning in the environment among their friends school parents family.

00:21:15: so they are just... In my opinion.

00:21:18: They're more sensitive And have some predisposition for this disease But like just connected with the psychological status.

00:21:32: And I think genetics is very important there also because we have families where functional neurological disorders are affected in siblings or parents, grandparents.

00:21:45: so they're together this symptomatology.

00:21:49: But we are not still sure about one gene, of course.

00:21:52: We cannot just identify a one-gene but there are polygenetic maybe some personality traits which are written in the genome.

00:22:01: so...we don't know.

00:22:03: it's very complex.

00:22:04: I agree with everything that is complex.

00:22:07: neural network system disease

00:22:13: Absolutely and i would encourage our listeners.

00:22:17: We don't yet know as much.

00:22:19: we need to know about this diagnosis, but it is absolutely real.

00:22:24: It's absolutely involuntary and when you take care of these patients they get better.

00:22:30: So let's dive in a bit about prognosis Dr Dan Hoffer if you wouldn't mind telling us a little bit about the prognoses of FND And whether or not that differs between adults and children.

00:22:43: Concerning the prognosis We have some traits which are talking for better prognosis in our patients.

00:22:53: And generally we can say that the main positive prognostic factors... ...are early diagnosis and an early treatment, of course,... ...in children and also a younger age of manifestation because I think that we use the plasticity of brain When the disease is diagnosed in small children, prognosis is better.

00:23:19: And of course also access to medical care is very important for prognoses and negative prognostic factors are opposite.

00:23:32: but still I wouldn't say there's some difference between children or adults.

00:23:41: important and I was talking about it already.

00:23:45: It's the possibility we have in children, the ability to influence developing brain.

00:23:52: We are working with adolescents mostly or smaller children And they have a great potential of plasticity on their brains allows us better work with these children, better reactions to this therapy and adaptation to FND symptoms.

00:24:23: Yeah totally agree!

00:24:24: And even we conducted a study about... sorry again repetitively for little bit but functionality like behaviors you know?

00:24:33: We had a cohort of patients.

00:24:34: well obviously these movements, they started in adolescence but also some adults and when comparing the prognosis of this patients through.

00:24:46: well it was a longitudinal study for one year.

00:24:50: We could see really that exactly what Pavlina said, that in these younger teenagers it was better.

00:24:57: Many of them they even improved after the psychoeducation spontaneously without any intervention at all but unfortunately not from our studies.

00:25:08: again and all this studies are preliminary It seems worse for adults.

00:25:14: I agree with Pavlinha doesn't necessarily mean if you're an adult with FND or prognosis is best.

00:25:20: It's just that it is a little bit, you know we are talking about statistical probabilities and again the small data sample.

00:25:27: But totally I would say that the same prognostic factors are true for adults.

00:25:32: so... The longer you wait with the diagnosis.. ...the longer this diagnostic odyssey.

00:25:37: like i had patient who knew all of these associative seizures he has been diagnosed with drug resistant epilepsy in her five medications until he came to me and I'm like, okay.

00:25:50: No these are not seizures but dissociative seizures.

00:25:55: you don't need this medications.

00:25:57: obviously for this patient.

00:25:59: He took two years to get it done.

00:26:02: so its worse than a patient who would have as rule in diagnosis with the positive signs at very beginning.

00:26:10: But unfortunately i think that is also important The use of these additional aids, sometimes it could be a prognostic factor.

00:26:20: So I had the patient who was using their wheelchair already from beginning.

00:26:24: you know like as severity of this disability is another important prognostic factor.

00:26:32: but again don't lose hope if your listening to this and have F&Ds or are using aids there's definitely no treatment.

00:26:40: its just statistical probabilities

00:26:44: Absolutely, and I think one of the most important things that you both said was that the delay to diagnosis affects that prognosis.

00:26:52: So making sure our listeners understand getting patients at least some sort treatment is potentially the most thing they can do.

00:27:00: so let's talk a bit about treatment Dr Dan Hoffer.

00:27:04: what are basic approaches for FND?

00:27:07: I

00:27:12: don't think there is some difference again between children and adults in treatment approaches.

00:27:18: But of course, children are not just small adults.

00:27:23: And the thing is that when we treat a child We also treat whole family.

00:27:31: We treat parents as well and siblings The opposite because When you're pediatrician You talk to your parent.

00:27:41: The child is sitting there, but you are talking to parents.

00:27:44: But here I think a very specific situation and we should concentrate on the child because the patient in the process of therapy has to be involved entirely with the therapeutic approach And take responsibility for it.

00:28:09: And I think this is another example of the process of developing brain and taking responsibility for adult life, which is very important here in this adolescent's life.

00:28:21: It works well because when a child can see that you count on him or talk to him... ...you take the responsibility from his own hands.

00:28:34: it increases The cooperation between the child and a doctor, or a therapist.

00:28:42: And on the other hand also as I said in the beginning parents are very important because if the parent doesn't accept diagnosis it can work.

00:28:54: The child is usually coping with attitude of parents so they do not accept the diagnosis but the child does not cooperate.

00:29:06: So it's a complex view on the diagnosis and treatment, which has to involve not only the patient but whole family.

00:29:15: I think this is very important And as Natalia said already, Alexitemia can be very disturbing in the therapeutic process... ...and often seen by our patients because if they are emotionally disconnected from their symptoms then they do not cooperate.

00:29:33: So sometimes it's very difficult to get the motivation of a child for treatment.

00:29:39: Yeah, I can totally agree and... ...I think that it is very important in it similar with adults or children that we should focus first on psychoeducation, often with the caregiver.

00:29:53: You know if it's an adult then involved a care giver too?

00:29:56: In my opinion We should remember always about this bio-psycho social modeling right when you think of factors.

00:30:04: Okay This person has a predisposition biological but which psychological factors are contributing to promotion not promotion But maybe to disease and sociological factors could be promoting this.

00:30:21: And then I totally agree that, you know... Yes in adults we should take into account obviously the caregiver also relatives work but than a children.

00:30:35: yes exactly parents and i try to do approach based on child base from family and then based of school because sometimes their reaction in the school is also important, you know.

00:30:47: How do they and develop... And we did a beautiful work at FNDS Pediatric Group this response packages that can give to its schools.

00:31:00: so teachers would know how to react for example during dissociative seizure.

00:31:06: So, you know I think that this is crucial and again everybody who's interested in FND knows it.

00:31:15: It sort of comes from as a self-explanatory after the episode... ...that its multidisciplinary approach like You cannot do this alone!

00:31:31: experts to really treat your patients and help the patient.

00:31:39: The school is very important, I agree!

00:31:42: Sometimes schools can make a big problem with treatment if they don't accept it or cooperate with us.

00:31:49: so... It's not rare that we call to our teachers because these children are very specific.

00:32:02: The attitude of school is still very negative in general, I would say.

00:32:09: A lot of clear communication a lot of setting expectations... ...a lot of stakeholders to take care of this population so often you need that neurology champion which of course both are and hopefully others who are listening feel that role as well.

00:32:24: So last few questions here, let's talk about the topic of transition.

00:32:30: Dr.

00:32:30: Shaco what struggles have you experienced when you are referring a child to adult care or potentially receiving a child from another institution?

00:32:44: Especially in FND fields, unfortunately it became a hot topic generally.

00:32:51: In pediatric neurology the transition of care.

00:32:54: but I think that for FND is very hard because we just started... with just starting to build the F&D clinics and there is no clear pathway of transitioning.

00:33:10: For

00:33:10: me, maybe it's a little bit easier because I actually came from adults-to-children!

00:33:16: I got interested in the adult world for children.

00:33:19: so... And now i'm fortunate to see also children In my institution.

00:33:25: basically we are also fortunate that we have child psychiatrists you know, and neurologists.

00:33:34: So we have this multidisciplinarity too And it's great then but unfortunately It is not always the case.

00:33:41: I think that The future You Know Is The Multidisciplinary.

00:33:46: It really is a creation of clinics where the neurologist and psychiatrist and psychologist and occupational therapist All these different physiotherapists are working together.

00:33:58: But yes, I think that at least you know depending on this very geographical differences.

00:34:05: The biggest challenges like i said... ...I'm very fortunate but the biggest challenge is exactly the approaches are different of people who have experience with children

00:34:19: and

00:34:20: then adult neurologists for example again coming from an adult field that often, unfortunately we ignore the environment.

00:34:30: We ignore our family or caregivers.

00:34:33: so if I can just make this opportunity to remind my colleagues and take into account these contributing factors in the importance of environments for families and caregivers as well as other factors sometimes... I think generally people working with children pay more attention.

00:34:55: Absolutely, Dr.

00:34:56: Shaco and Doctor Dan Hoffer if you don't mind commenting on that And then leading us into a little bit about your program and clinical pathway.

00:35:04: That would be great.

00:35:06: Yeah I can add something.

00:35:09: in my opinion the transition care In this broader sense of meaning starts in the outpatient clinics in Child neurologists or neurologist who work with uh?

00:35:24: The whole sort of patients with neurological symptoms and diseases, because if they accept the diagnosis... And we still fight this I think in general.

00:35:36: If they accept a diagnosis or increase awareness of how to handle these patients?

00:35:46: Because in outpatient clinics on terrain there is no space and possibility to treat these patients.

00:35:56: We need FND clinics because we need the multidisciplinary team of course, but if this patients are recognized early in The whole country And Are referred to the centers as we said already the early Diagnosis is a better prognosis.

00:36:16: so If you start there week we can increase better prognosis in the centres and it will be more fluent, of course.

00:36:25: The treatment, transition everything.

00:36:28: so I think we are quite far from transition care.

00:36:32: but we should start with awareness about disease.

00:36:36: And as we talk our centre I work in the child's hospital.

00:36:41: We have a Child FND Centre, but together with another hospital and our town we take care of children who are adults or grow up to adults.

00:36:55: so transition care is working on some friendship between doctors because we know each other.

00:37:05: We are just few who treat these patients and communicate, talk together or meet together And... ...we're able to make the transition fluent in this patient Because there aren't hundreds of these patients I would say In children.

00:37:22: There's dozens of patients and we can make a fluent transition for adult clinics.

00:37:31: But i think that We need more FND clinics, more specialists and more awareness in the field.

00:37:41: Absolutely!

00:37:42: And hopefully this podcast is one way to get there.

00:37:46: Thank you both so much for joining today.

00:37:53: speak about one of our favorite topics today, and I know that Dr.

00:37:56: Dan Hoffer and Dr.

00:37:57: Sheikha would be open to any sort of follow-up questions should you have them after listening.

00:38:23: You can also listen to this and all of our previous episodes on the EAN campus, E&Cast weekly neurology is your unbiased and independent source for educational and research-related neurological content.

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