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Highlights in Tic and Stereotypies | Congress 2023

September 18, 2023
Series:MDS Congress 2023
What type of research is needed to help us better understand the phenomenology of stereotypic movements disroders? Dr. Hugo Morales asks Dr. Tammy Hedderly her viewpoint on the uniqueness of these disorders and what questions the field has yet to answer. 2023 Congress virtual access

2023 Congress virtual access

[00:00:00] Dr. Hugo Morales: Welcome to the MDS podcast. We have the pleasure to have Dr. Tammy Hedderly. Dr. Hedderly established and leads the tics in neurodevelopmental movement Disorder Service at Evelina London Children Hospital. And she's internationally known for her active research and projects, including tics and stereotypies. Thank you for coming today. 

View complete transcript

[00:00:30] Dr. Tammy Hedderly: It's my pleasure. Thank you for the invite. 

[00:00:32] Dr. Hugo Morales: So we just heard a beautiful and tremendous presentation about stereotypies, which is a phenomenology that it's in itself interesting, but also to just to tease apart in terms of what we've seen and observing.

And perhaps the definition may be different from tic disorders, but I would like for the audience to listen to you, and tell us about what is a stereotopy and what sort of research we need to do in stereotopy to [00:01:00] understand better the phenomena. 

[00:01:02] Dr. Tammy Hedderly: Well, thank you so much. I was very honored that the MDS invited me to talk about stereotopies because it's a subject very close to my heart.

I've been looking after children with stereotopies for a number of years. And one of the things that I'm going to talk about with you, I hope, and share is actually... Often, what the children have explained to me is, is in going on in their worlds when they're experiencing these repetitive, rhythmic, interesting movements.

So when I think about stereotopies, the first thing I'd say is the kind of simple stereotopies, things like nail biting, finger flapping, and maybe even playing with a pen, twirling of the hair — we don't really think of these as being pathological, they're almost like personality traits, aren't they? That you see commonly in lots of people. But then you start to see more of the more complex stereotopies. And these are children that [00:02:00] do more pacing, twisting, unusual hand movements, or facial stretching, mouth opening. And they are movements which frighten parents when they see them. And quite often they look cute at the beginning. They start under one, six months, nine months, as I showed the videos today. They tend to be with excitement, When people blew bubbles and the high chair, we saw the children. Or if they're playing with the toy and they look like the child's just excited, or they might have them when they're bored.

But when they go on and become more complex and prolonged, and interrupt the child's activity, and the child is engaging in them for longer periods, the parents can get concerned. And a very common concern is, is it Tourette's, is it tics, or is it epilepsy? And people go to see pediatricians, and often they come away with the diagnosis, if you like, [00:03:00] of these aren't epileptic seizures.

And the parents say to me when they come to see me with the movements, I was told it wasn't epilepsy. But that didn't help me because I didn't know what epilepsy was. So I said, well, are you getting the label for the movements? And interestingly, it's often the parents that are finding the label. Like they're Googling the movements, they're looking up forums. They're joining Facebook, and they're self diagnosing with complex motor stereotypies. And then they may, you know, contact our clinic and say, we hear that you see children. 

[00:03:34] Dr. Hugo Morales: I saw something very interesting you presented in the meeting. And this is that subtype of stereotypes. I guess it's different in the way that it has different sort of response to the environment? What is the differences between this specifics or subtype of stereotypies from the other ones that we know?

[00:03:53] Dr. Tammy Hedderly: So I think the first thing to say when people see stereotypes, they automatically, if they're trained neurologists [00:04:00] or pediatricians often think, is it autism? And one of the things we've described in our work on subtyping stereotypies is that you can have stereotypies without autism. And there's probably a spectrum of the movements as well.

The other thing people think about is, rightly, do we need to think of neurodegenerative genetic syndromic diagnoses? So, of course, doing a full developmental assessment, measuring head circumference, looking for additional neurology, like dystonia, chorea, myoclonus, that's all really important in the initial assessment.

But I think what the subtype we were talking about today was the intense imagery subtype. And intense imagery is a term we use to describe children who do stereotypical movements, and they describe that by doing the movements it's semi voluntary sometimes, initially it might have been involuntary, but they do them to enhance imagery in their [00:05:00] minds and the imagery is often about superpowers, you know, they want to be a, a Spider Man or there might be a train driver. We heard the child today who was a racing car driver. Sometimes children describe being famous sports people and scoring goals in international matches and football matches or cricket matches. And so they engage in this imagery, but at the same time as doing very complex movements which don't correlate with what you might expect.

So they don't look like they're playing football. They're doing mouth stretching or complex hand movements. Sometimes frightening looking movements. You know, the videos I showed today, some of them you could, I'm sure you'd agree look a bit chorieform, dystonic, posturing and unusual.

But they can be distracted out of the movements when their name is called or when they're interrupted. Sometimes they don't like being interrupted because it's quite a compelling thing to engage in, it's [00:06:00] very engaging and intense, that's why we call it intense. Children get annoyed with you when you try to interrupt them. But the movement and the imagery come together.

Some children say the imagery comes first and then they do the movements to make it brighter or more colourful or more engaging. And sometimes it's the movements that come first. And obviously there's children who have similar movements. You ask, "are you thinking about anything? What are you thinking about?"

And they say, "nothing." So there are children who engage in these motor stereotypies that look the same, but don't have the imagery. 

[00:06:36] Dr. Hugo Morales: And could, could I ask with these children, do they have any abnormalities or comorbidities? Like, is their school performance okay? Or do they have, like ADHD traits or any ... ?

[00:06:48] Dr. Tammy Hedderly: So that's the commonest thing we've found. Very interesting question because the commonest association with the co occurring condition in that group, and we've looked at them very carefully, lots of them with [00:07:00] neurocognitive in depth profiling. We've published a paper on a small cohort, but we do regularly assess the children with a psychologist, and with an educationist and with a psychiatrist. So we do an MDT clinic. And the commonest co occurring condition probably in up to 40 percent of our children that we see is ADHD or whether I, I hesitate to use the term D because it's not always diagnosed but they have attentional differences that really often finding it difficult to pay attention to the external world.

So they are failing sometimes in school, despite being quite bright on cognitive profiling. That's probably more about the way the school is testing children to their true ability. But they do struggle and often they internalize in the classroom. So the problems present in school because they're doing lots of movements in school.

Now whether that's to partly self soothe[00:08:00] because they're anxious about the work. There's lots of theories about how the environment impacts on the neurobiology of the motor stereotopy. Which we think of as primary neurobiological genetic neurotransmitter where, there's the pathway. People have talked about the anterior cingulate gyrus, GABA, dopamine, acetylcholine balance and things. But I think the environment plays a role because some children tell us they're much more likely to do the movements if they're very anxious.

[00:08:31] Dr. Hugo Morales: And one last question, what is it the clinicians or the MDS needs to do to advance our knowledge about stereotopies? What is your view? 

[00:08:41] Dr. Tammy Hedderly: Well, my aim, my dream, would be to work with some of the adult neurologists who see adults with maybe much more subtle or privatized stereotopies. I don't know, really, whether they would present to the adult neurologist or whether it's more of a [00:09:00] neuropsychiatric presentation. But there's a subgroup, and this obviously isn't everybody with stereotypies, but a subgroup of adults who are sometimes the parents of the children we see, and sometimes adults that have contacted us because of our work, where they say, I have intense imagery. And can you help me? 

My question to them is, do you have any movements? And they said, well, I did when I was a child, but I've learned to do the movements in a much more subtle form. So their presentation is, I'm compelled to do this imagery and it's impairing my life. For example, I'm late for work because of the necessity to spend hours daydreaming in this world. Or they may say, my wife's divorced me or, you know, I don't have a partner because I'd rather be with my fantasy world partner. And so we're hearing lots and lots of stories. 

And a parallel stream of [00:10:00] work is going on with cognitive neuroscientists and psychologists and neuropsychiatrist in the world internationally talking about something called maladaptive daydreaming. 

So we've got our heads together, talk together, and now we ask people who are self-reported maladaptive daydreamers, are you engaging in any repetitive or rhythmic or unusual movements that you'd rather not engage in? And these adults are saying to us, actually, yes, I've always had this movement. I always twist my pen or I pace, and it helps me with my daydreaming. But also I'm not always aware I'm doing it. So they could be doing it for hours at a time. 

What we don't know, unfortunately, is how common this trait is, and whether it's a spectrum where in many people it's really mild. And some people, of course, then are impaired, but other people just have a bit of daydreaming.

There's a little bit of work in that community looking at maladaptive daydreaming, [00:11:00] but they haven't made the link yet with the movements. And that's what we're trying to kind of explore together. 

[00:11:06] Dr. Hugo Morales: It sounds fascinating. Hopefully, in the next years, adult neurologists and pediatric neurologists can come together and understand these behaviors in more detail.

But again, I would like to thank you for coming to our MDS podcast and And I will recommend all the audience to go and look up the papers published by Dr. Hedderly Thanks again. 

Special thank you to:

Dr. Tammy Hedderly
Consultant paediatric neurologist
Evelina London Children Hospital
London, England

Hugo Morales Briceño, MD 

Neurology and Movement Disorders Unit, Westmead Hospital

NSW, Australia

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