 Good evening. Hello and welcome everybody who's joining us tonight for this MHP and webinar collaborative care for people living with ticks and Tourette syndrome. I'm excited to have you all here. We have several hundred of you already joined and we're hoping to have perhaps over the 500 mark tonight. So thanks very much for joining on this Wednesday evening. I'm Nicola Pulfry. I'm a clinical psychologist and researcher based in Canberra and I'm excited to listen to our esteemed panel this evening. But before we get going I would like to importantly acknowledge the traditional owners of the land on which I am joining you from tonight which is the Nunnamal people here in Chilly Canberra and of course this week is Nadoch week so as important as it always is it's even more important this week to acknowledge the traditional custodians of the land, seas and waterways across Australia on which our webinar presenters and participants are joining us from this evening and I personally and on behalf of our panelists would like to pay our respects to elders past, present and emerging and thank them for the memories, the traditions, the cultures and acknowledge the hopes of all Aboriginal and Torres Strait Islander people and of course welcome any Aboriginal and Torres Strait Islander people joining us tonight. So we have a really interesting and fascinating topic here tonight. We've got a great panel to join us we're not going to go through all of their bios because I want to hear from them and I'm sure you are keen to do that as well. So we will get right into it I'm going to introduce each of our panelists to start off with and I've got a little bit of a teaser question for them so we can get to hearing from them straight away. So first of all it's my pleasure to introduce you to Tim Usherwood. Tim is coming to us as a meritorious professor of general practice at the University of Sydney and as a professorial fellow at the George Institute for Global Health. Tim is coming with a number of hats tonight two of which are as a general practitioner working in this space but also has a lived experience of living with Tourette syndrome. So welcome to you Tim it's lovely to have you here. I was wondering if I could start Tim by asking just briefly if you could share a little bit about how for you has having Tourette syndrome influenced your development as a clinician in this space? Yes thanks Nicola well I suppose I've been fortunate although the ticks have been fairly intrusive at times they've never really prevented me achieving my career goals. It probably helps that I've never had coprolalia and I acknowledge that some people's lives are far more affected by ticks than my end has been. What having ticks has done is to make me very aware of an aberring attitude towards patients that can sometimes be found amongst medical practitioners and perhaps in other health professions. I'm a doctor I live with a diagnosed neuropsychiatric disorder and they are both aspects of who I am so I'm human just like everyone else. Thank you Tim that's in a I think it's so important to have both dual lenses coming tonight so I'm really excited to hear as we go through tonight. Next of all I would love to introduce you to associate professor Darrell Efron who is a developmental pediatrician. Excuse me and coming with his expertise in this area Darrell you're conducting a fascinating study at the moment on medicinal cannabis usage for adolescents with severe Tourette syndrome. I was wondering if you can give us a little bit of a snapshot of that work that you're doing. Sure I'm happy to it feels funny to be starting with that which is kind of experimental before we've covered basic things but I'm interested in Tourette's syndrome which I'll talk about soon amongst all developmental disorders so I see lots of kids with various forms of neuro disability, intellectual disability, learning difficulties, autism, ADHD and so on and these disorders all overlap with each other and many of the kids with those conditions have ticks and vice versa as we'll come on to this evening. Medicinal cannabis is a particular is an area of interest that I've developed in over the past five or six years and I'm conducting studies of a number of conditions to see whether cannabis might be helpful. I've done a lot of work with other psychiatric medications in the past and the main study I'm doing actually is targeting severe behaviour problems in kids with intellectual disabilities and autism but we are doing a small pilot study at the moment in kids in adolescence with severe Tourette syndrome on the back of some evidence in adults out of Germany suggesting that cannabis can be helpful in reducing ticks in adults. It hasn't been any researching kids so far so we're starting to do that. Topic for another webinar maybe. Thank you Daryl and I will throw you in a little bit but finally I would love to introduce Professor Valsama Eepen who's a child psychiatrist and coming into this area with her expertise on ticks and Tourette syndrome. To begin with Valsama I was wondering if you could give us a little bit of your insight that Tourette syndrome is often underdiagnosed. Do you have any views on why that may be? Yes it is true that it is very much underdiagnosed partly because it has got a milder onset when it comes on as a blink or a twitch and parents might take them to a GP for example or to somebody else and depending on what answer they get they may never go back even when things get worse. For example if you had a little bit of blinking and a twitching and then you went to the GP or to another professional or pediatrician and got told that oh that's okay that's kind of something that kids do and they grow out of it. Even when things get worse or other commodities start to occur they would think oh that's something that the doctor said is okay you don't need to do anything further that's one one way in which it's not diagnosed. Another way is that sometimes it's not so much the ticks that come to the attention it may be that fidgetiness or disruptiveness of making silly noises for example and you get told off or you kind of said you know stop doing that and people don't even recognize if you don't know it you don't know it and therefore even health professionals wouldn't pick it up sometimes if they went for obsessive compulsive behaviors or they went for ADHD for example because that's the kind of the thing that people pick up and either the teacher or somebody else says oh yeah you want to get checked out for that but they will be twitching and doing all those things and because you're not very much aware of it or you're not not on the front of your mind you really don't pay much attention to it and time and time again all of those are missed cases so whether they've presented with comorbidities present with things that initially are ignored etc so there are a number of reasons why yeah it's under diagnosed. That's great thank you so that's the importance of tonight that differential diagnosis but also the moment in time versus that kind of checking on things over time that's great I'm so excited to hear what you guys have to say. So we've got over 440 people joining us tonight which is a wonderful result so I'm sure they're going to get a wealth of information tonight but without further ado if there's no other major issues we should get into it. We have learning outcomes that we can go through very briefly but basically the panelists tonight will take us through an understanding of ticks and turrets, how they may manifest, how we can work with them, what the different approaches to treatment and outcomes are for people who impact it as well as the families that support them. So let's get going I think we've had a case study that we'll refer to as we go along tonight some of the panelists will refer to it in their first talk but we'll also address it again in the Q&A as we go along so you all should have received that as we go along. So without further ado I'm going to throw over to Tim to hear from his perspective on tonight's webinar. So over to you, thanks Tim. Bari, I've muted. Thanks Nicola and can I have the first slide please, thank you very much so okay so thanks again Nicola and good evening everyone. I'm a general practitioner and a researcher and a university teacher that's me with my children at the end of the heafy track for five days in the walk in New Zealand. My first memory of ticking was repeatedly grunting in my primary school classroom much to the irritation of my teacher and the amusement of my classmates. Some weeks later I saw my father wrinkle up his nose in response to an unpleasant smell. My grunting gave way to nose wrinkling. Over time I acquired new ticks and botched earlier ones. They became more complex often combined combining grunting with other movements and mainly affecting my face, neck, shoulders and arms. Inevitably my nickname of school was Twitch. Although I saw several doctors and a child psychologist I remained without a diagnosis until I was at university. In my third year of medicine I asked our psychiatric lecturer if he could explain the cause of my ticks. He referred me to a neurologist and it was an enormous relief when I received a diagnosis of Tourette syndrome which I've not heard at that point but at last I had a reason for the diagnosis and a way of talking about my symptoms. I'm now 68. My tendency to tick has reduced marketing over the last couple of decades but it is still present when I feel stressed and you may notice the occasional tick this evening. Fatigue and mental concentration can exacerbate their frequency. Listing to music and physical activity both reduce the urges. Next slide please. At times the ticks are socially embarrassing but they've also been the source of shared amusement. I've never experienced coprolalia but I am aware of a temptation to copy the verbal and non-verbal ticks of others. Occasionally I have left a room to avoid catching a tick from another person with Tourette's. Tourette's syndrome is well known to be associated with the range of other conditions including ADHD, OCD, poor impulse control and other behavioral problems. I don't make meets diagnostic criteria of these conditions but I do tend to be somewhat obsessional which is perhaps not a bad trait for a physician. I also have difficulty concentrating on a single task for a prolonged period. I'm usually reading several novels and other books concurrently, a few pages from each at a time. General practice suits me as a specialty as clinics typically present a diverse and varied range of patients and problems. The condition hasn't impacted much on my family although my mother found my ticks frustrating at times and I think felt guilty that she was in some way responsible. My children are mainly abused by my obsessional and abilities to leave the house without going back to check with my blocks to front door properly. I've been fortunate in this respect and I recognize that many people living with Tourette's syndrome and its comorbidities experience much greater impact on their lives and their families. Next slide please. So what have I needed for my health professionals over the years? Receiving a definitive diagnosis and an explanation of the condition were enormously helpful and they gave me a way of talking to others about my ticks. Tourette's mainly impacts on me has been as a cause of social embarrassment. I could have done with advice on strategies for coping especially as a teenager and young adult. For many years I hoped for a cure or at least for treatment to reduce the ticking but a trial of Halle Peridol was unpleasant and put me off the idea. What I have found most helpful is self-acceptance. I don't particularly like having Tourette's syndrome but it's a part of who I am like my eye color. Next slide please. It's worth remembering that Tourette's syndrome is chronic, affects the patients and their family in different ways at different life stages and generally requires a multidisciplinary approach to care. The patient themselves has to manage their own condition hopefully with support from family and friends. Well-informed teachers are important as is a regular general practitioner who can advise, advocate for the patients and coordinate their care on an ongoing basis. Definitive diagnosis may require input from another specialist such as a pediatrician, neurologist or psychiatrist and for many patients mental health expertise is likely to be needed in providing psychological and behavioural therapy. Daryl and Belser have been to say more about this. Thank you. Wonderful. Thank you so much Tim. I'm really interested to unpack some of that a bit further with you as we go along but for now I would hand over to Daryl. Thanks very much Daryl. Thanks Nicola. Good evening everyone and nice to be part of this webinar this evening. Really interesting to hear Tim's story of his lived experience and in fact many of the points that I'm going to make from a pediatrician's perspective will be picking up on threads that Tim has already started to spin. So we're not going to give a textbook overview of Tourette's here by any means but it's a fascinating condition from a pediatrician's perspective because it's so complex and multifaceted but from a patient's perspective it's incredibly frustrating and Tim used that word as a patient or person with Tourette's syndrome. For many reasons the symptoms themselves which I'll talk about are incredibly frustrating when they happen but the cause runs a waxing and waning cause so there are periods where kids seem to be much better and then usually for no rhyme or reason they get worse again sometimes for a good reason a change of teacher or something happens in the family and there's an obvious stress or that means they get worse again but very often they just wax and wane and fluctuate in severity and intensity for no good reason which is really really difficult to live with. So Tourette's was first described by Neil Tourette, a Frenchman in the late 19th century and the history is really interesting if anyone wants to read about it but at the time it was mostly thought the manifestation of hysteria was my understanding mostly yeah it had a sort of a psychodynamic understanding but we've come a long way and we now understand it to be basically a neurobiological disorder of course with psychological contributions. Next slide please. So I'm just going to pick up a few points and we can touch on other things during discussion in response to questions so when I was training I was taught that lots of kids have ticks and they're pretty much harmless don't worry about them they can annoy parents and teachers sometimes but they don't cause too much trouble that's actually probably true simple most of ticks are common in primary school aged kids and generally are relatively harmless but Tourette's syndrome where you've got persistent motor and vocal ticks causing impairment across settings lasting more than 12 months that's sort of a DSM definition and they're not always harmless at all so they can be quite intrusive they can interfere with functions like using a keyboard or even walking and talking at the superior end of the spectrum they can be very distracting in addition to intrinsic problems kids might have with concentration the ticks themselves can distract as Kim has mentioned they can be embarrassing and stigmatizing and sometimes can cause social isolation although I would have to say I'm always impressed by how more often how understanding peers can be at school but not always and they can be quite demoralizing for kids and this can lead to secondary acting out and even self-harm and depression sometimes they can be painful either the ticks themselves can be painful or efforts to camouflage or suppress the ticks with sustained muscle contraction can cause things like a sore neck and the effort to suppress them even if it's largely subconscious during the school day which is very common kids often don't tick much less at school than they do at home but that comes at a cost of a build-up with inattention and fatigue and in extreme cases they can cause injury and they're a case report I mean you do see this perioral excretion that's empty to open their mouth very wide can get dry skin around the mouth which can be quite sore and there's been rare but real case reports of things like spinal cord injury or even retinal detachment from violent head and neck aches next slide please kids with Tourette syndrome and I'm mostly speaking about kids I'm less familiar with the adult world but children and adolescents with Tourette syndrome more often than not have one or more comorbid or associated mental health comorbidities the commonest ones are ADHD and obsessive compulsive behaviors sometimes very threshold from this impulsive disorder furthermore a whole range of mental health and developmental disorders almost any disorder you can think of are more common in kids with Tourette's than control peers so anxiety disorders learning difficulties autism spectrum disorder oppositional defined disorder and depression and there are others I've probably left off the list next slide so again Tim touched on the importance of psychoeducation fancy word for just you know sharing information about the condition and its cause and it's likely prognosis and natural history and this is of all the conditions we see I think in Tourette syndrome psychoeducation is probably the most powerful and important it's important everything we do is physicians and health professionals but I think in Tourette's it's particularly important and can really help with reducing stigma and self-esteem erosion that can come with Tourette so just simple things like Tourette's is a neurobiological disorder based in abnormalities of the neurochemicals which we don't fully understand so this is for the patient and the family and also for the school and other people involved in the child's life he can't help but I say he because it's mostly boys or of course girls who get Tourette's syndrome less commonly comorbidities that I've mentioned management options which will come with food and then natural history which I mentioned which is of a waxing and waning cause which usually starts to improve through the teenage years and sometimes goes away altogether but not always and sometimes assists for some extent in adult life amongst the Tourette community there's the talk there's a term called the talk which has been kids and very bravely often with the support of a parent give a talk about their condition to the class and the Tourette's syndrome association Australia has a template for this which is very helpful this not all kids want to do this or can do this but for those that want to and do it can be a game changer it can really help them get on with their lives and it just becomes a part of who they are everyone's got a quirk and that's the quirk for this kid and as I said before it's amazing how accepting peers can be of what's pretty unusual behaviour sometimes next slide please I'm not a psychologist but various forms of psychological intervention can be helpful for kids with Tourette's more often actually targeting things like obsessive compulsive behaviours or other for anxiety disorders or sometimes depression but there is a manualised in specific intervention called CBIT for tics comprehensive behavioural intervention for tics which involves two main elements exposure with response prevention which is about increasing tolerance of this promontory urge which tics have an urge some describe differently by different people who have tics but something like an itch that needs to be scratched so tolerance of that is one part and then habit reversal training which is training the person to develop when they feel the promontory urge to develop a competing response that's incompatible with the tic and less socially stigmatised and it's been shown in studies to be better than supportive psychotherapy for children and adolescents over about age nine with the psychologist does need to be trained in this specific therapy and importantly you need to have strong parental support so you need a motivated family who are available to work with the child routine. Finally a couple of comments about medication here on the general some general points we would only we don't usually use medication to treat tics for reasons which I'll touch on so we would only consider it if the tics are at least moderate severity or severe and really quite impairing and if we are going to use medication we don't necessarily always target just the tics sometimes we do if the tics are really bad but probably more often we look at the whole patient and what kind of abilities they have and we might try to choose a medication that treats both the tics plus some other kind of ability such as anxiety or obsessive compulsive disorder for example and we need to be aware of the the sleep pattern and the attentional issues and so on you can choose the medication and we need to minimise be careful to try to minimise side effects of course with any medication we use but the ones that we can use in this condition do have a lot of side effects so we try to keep doses low and monitor closely and in fact reduce and or even stop the medication when an opportunity arises final slide please I think this is my last one so I won't go into detail here this my understanding is this is not really a medical audience but I think the point to take away is that about medications for tics is they're not that good and also it's hard to know because as I keep saying it waxes and wanes anyway the best time for me to see a patient with tics is during a really bad period because no matter what I do things up things will get better and then I'll get worse again and I'll get better again so these medications involved have been shown to be better than placebo but they're not amazing. The main two categories the first is called alpha agonist that's things called conidine or guanphysine and they can have side effects absolutely they can affect mood they can be sedating and so on but usually reasonably well tolerated the best medicines to suppress tics are the antipsychotics but as you would know these carry a high risk of significant side effects including weight gain which is very common and a range of other metabolic side effects and sometimes other things like neurological symptoms and also sedation so we don't use those lightly I mean the patients that Dalsar and IC we do use need to use these medications sometimes but this is a really severe end of the spectrum. Okay I'll stop there and happy to come back during discussion. Perfect thank you Daryl. It's really interesting I think to know about the different levels of intervention and I think I love your point about educating and actually you know what we can do around the child or young person's environment you know to get their peers and teachers and so forth aware of what's going on and that just what an ordinary difference that can make when kids have information and they're incredibly accepting I think sometimes we undervalue how how willing kids are to take on information and so yeah I love that as well as all the other gems in there but I will pass now over to Valsar for her presentation thanks Valsar. Thanks and it's great to be doing this session with different types of experiences in the mix and so I'm going to take Charles Carter's perspective but I'm going to do a bit of midst busting. So firstly Tourette's syndrome is rare is one idea that floats around that it's a bizarre curiosity that it's so rare that you know you would not see one in your practice is sometimes you get told and the other one means that all that exists Tourette's. Both are wrong prevalence of Tourette's syndrome is about one percent in school going children but about that about one in five children would have a tick or a twitch they may have a blink or a twitching but it doesn't last long that's called the developmental tricks or the transient ticks that's 20 percent but when you have got either motor ticks or vocal ticks which have persisted for more than a year that's about two percent you call it chronic tick disorder but when you have got multiple motor ticks and at least one vocal tick which has been there for more than a year you call it Tourette's syndrome so it doesn't take much to get that diagnosis you don't need to have coprolalia like Tim was saying that you just have multiple motor ticks at least one so if you take the example of Ali the case that we had for today blinking and squinting has been going on for more than a year so that's multiple motor ticks and he has started grunting which means he has got at least one vocal tick and has been there for more than a year that's all what he takes for getting a diagnosis but the severe and the persistent one is about point one percent the next one is ticks only occur in childhood and they grow out of it to an extent yes they do get better and sometimes we talk about a third a third a third but a nuanced way of looking at it is 30 to 50 percent will have significant improvement as they get adulthood somewhat better in 25 percent intensity may lessen but it's there kind of 20 percent but will be severe continuing into adulthood in five percent the next one is ticks are limited to just vocal and the motor ticks yes they are the cardinal features but many have got a number of associated features which is what usually lands them in trouble or gives them the kind of the real distress and frustrations complex ticks like licking or spitting or kissing or inappropriate touching mental ticks like counting in your head or mental coprolalia which is a worry about blurting out an obscenity and copying ticks that Tim talked about they're often missed they're often under and misunderstood and in the case of Ali it was pulling faces of the teacher he was reprimanded for it's really a complex multiple ticks of the face and there he goes he's got no answers to to tell the teacher that he wasn't doing it deliberately so what would he say he's kind of enormously difficult for a young person to to carry that not knowing why they are doing it and why they are being kind of told or reprimanded and that's what cost him distress and school refusal it was none the ticks per se but it was a reaction to it that cost him grief and then the granting often it is the vocal ticks are called silly noises they're disturbing the class and you know so that's another one both the parents and the teachers and everybody around them gets so frustrated with the noises they make again Ali was told to get to the to a doctor for the ADHD not for the ticks and it's very very easy to miss when you're consulting a pediatrician because the teacher said that he's not concentrating and the ticks is all about or Tourette's about swearing that's a view unfortunately even held by health professionals but only a third of clinic patients have corporeal or involuntary swearing so that's not one of the most common things ticks are always present and noticeable as Darrell said they wax and wane and sometimes you go through a period for days or weeks or even months when it is plurid and the other time it's kind of hardly anything there and there can be a lot of daily variability as well when you are stressed or anxious or excited or tired you might kind of come on a bit more than other times and you may go through a full school day without much and then you come back and you give away that's because it's the urge to relieve cycle and you're kind of sitting on it and then that's the expense of mounting in attention and something has to kind of give away you can't sit on that kind of level of things forever and the other thing is no there is no treatment or on the other hand or you just take some medication now i'll fix it the truth is somewhere in the middle next slide please so what do you do um um Darrell talked about the medication about 40 to 60 person would get reasonably good response for medication but most of the time you kind of weigh in the comorbidities or associated features to to think about whether they need medication and what medication we use for example in at least case it's both ADHD antics in those cases we go with that um alpha to agonist like the Gwen Fassin and a cloning in because it can help both the ADHD and the ticks while ticks per say that the psychotics are much more powerful and and effective when you have got the two together the ADHD and the ticks you probably want to use something that can it can have a positive impact on both as your first line and then go into the next one for example in the case of Ali the teacher said to seek help for the ADHD so if a parent goes to a pediatrician because the teacher suggested he may be having ADHD the ticks are going to be totally not in the priority area or nobody would be looking for it or you may not even kind of figure out um in that consultation that he has got the squinting and the blinking and all of the other things so the medication choice there may be stimulants I'm not saying that you cannot use stimulants but sometimes it can make the ticks worse and so it is very important to understand that this is in the context of ticks and the same goes with OCD antics if you understand that it's coming with the family of from the family of tick spectrum of obsessive compulsive behaviors and the clues might be that they are kind of concerned for symmetry they have to do evening up if you do something here you have to do something there to make it even or you have to get things just right they keep doing it until they get it just right what they know what it is and so these are very critical clues that this may be from a tick family of obsessive compulsive behaviors and there your standard treatment with SSRIs alone may not be sufficient so again that comorbidity may dictate what medication and you use there you may need to add a neuroleptic as an adjunct with the SSRI in those cases next slide please so coming to the behavioral methods of treatment the comprehensive behavioral intervention for ticks that huge US study by NIH 38% showed significant improvement 52% showed some improvement but it's also to be borne in mind that there has to be significant motivation from the part of the person engaging in the treatment and also on the on the support people whether they are partners or family members it's very important and again tick type sometimes is important vocal ticks may not be that amenable to CBT as much as motor ticks and also the availability of clinicians or to do the the treatment becomes another thing and manualized studies so those who have got CBT type experience and they will be able to kind of pick up the manual and get the techniques there are no cost workshops done by Center for Disease Control with the Tourette Syndrome Behavioral Therapy Institute we did a little bit of training for clinicians as part of a research project a while ago we are hoping to do one again I have put in the resources the the link for getting the manual you can buy it and parent workbooks can also be bought sometimes I say that even if the behavioral methods of treatment didn't give you the therapeutic effectiveness that you are looking for it can still have an important role to play because if you can think of a stressful situation where you're worried that you're going to tick and you're going to kind of make your your time really embarrassing the ticks are going to get worse because you're stressed but having these techniques in your toolkit pulling them out to tide over that situation can be effective and significantly so that comes into the part of that coping with and strategies to get you tied over those kind of particular moments or situations school work recommendations are important psycho-education self-acceptance as Tim said and Tourette Syndrome Association has association of Australia and the other countries have got a lot of resources available they run camps and so it's about accepting finding what works for you just like what ticks you makes you tick it's it's kind of what makes you better as well understanding that and and managing the times when things are quite and and using certain times of the day or certain times of your life and things are quite to kind of do other things so it's a it's very much an evolving situation and people need to be very prepared for that unpredictability and and that's part of part of a big part of coming to terms with it and accepting and managing or living with it I think that's that's my last slide I believe thank you wonderful thank you thank you all that's so much information to take in as we going through and I'm just being scanning the questions from registrations but also as they're coming through so if you do have questions please send them through and we will we will get through them we've had a dozen or so so far for me to work through so I will go through some of them as we work through because we do have a bit of time but I was wondering if I could start with you Tim particularly in relation to the case study that also has just been referring to slightly I'm wondering from your perspective both from a lived experience but from the GP's perspective as well if you were to see this family what do you think your approach to them might be or what sorts of things do you think they might need in those first instances when they're coming to with these sorts of questions about what's going on for their family yes thanks Nicola um so I think I'm going to put my GP house on here um bearing in mind that you know you can never really spit that from who you are um so look I think Addie and his parents and his mother or his parents should expect several things from the general practitioner first up true in every every health profession listening to their story and validating and his experience this is not Addie being difficult this is not Addie being disruptive this is Addie with a problem and he'd like some help with it so listening to their story and validation we know that Addie probably has Tourette's syndrome but he is GP and his family don't actually know that yet so it's important to consider and discuss potential alternative causes for his symptoms such as allergic rhinitis and or bullying at school or other problems but given the likelihood that he does have a tick disorder and uh and likely Tourette's given what we know about it and also perhaps that he has ADHD although we're not sure yet it's probable that Addie would benefit from referral to a pediatrician or child psychiatrist for confirmation of his diagnosis and advice on management once the diagnosis of Tourette's syndrome is confirmed then the GP has an ongoing important roles as a readily accessible source of advice source of advice advocacy referral and coordination with Addie's care and of course she and her practice will continue to provide other aspects of Addie's primary health care as he grows and develops beautiful thank you Tim I'm just scanning as a response to that there was a question that's come through just to see who it has come through from uh from Simone and I'm like this is probably either for Valsa or Daryl um there's a question about who should I go to at a 14 year old child um do I go to a pediatrician or do I go to a psychiatrist I'm sure there's not a black or white answer but I think there's some sense that there's varying um recommendations if I see a pediatrician at 14 is that appropriate for ongoing care am I better off going to a psychiatrist do either of you have a view on that maybe Daryl you first and then I'll see you might want to add sure well look um it's it's really interesting and it's different in different parts of the world so there's quite a lot of us and there aren't many of them so good luck trying to get a point with a child psychiatrist for almost anything I can't get my patients who I'm worried about disease psychiatrist very very easily either so um so look I think either has a lot to offer um a patient like Ali but in practice in Australia um and I'm talking about um you know major urban centers that alone regional centers where psychiatrists are even thinner on the ground it's much more likely that a pediatrician would be available to see the patient and pediatricians uh these days are very well trained in your average general pediatrician is very well trained in the range of developmental behavioral and and quite disorders but also does a lot of mental health work um and actually the the bar for um severity of mental health problems that pediatrician sees is I think higher than most people would expect we currently we see lots and lots of kids with very significant anxiety depression Tourette's OCD etc not just people like me who have a particular interest but pediatricians in the community all over Australia um it's becoming really difficult for pediatricians I must say and particularly through the pandemic and into this year that the number of referrals we're getting for kids um with these sorts of problems is is huge I um have a small private practice a group private practice and we we like other practices are funny and really really difficult to fit kids in with waiting times blowing out I don't say that to discourage people referring but that's just the reality we're in Australia the most particularly anxiety through the pandemic as everyone would know has absolutely gone through the roofing kids and it's interestingly there's one manifestation that's really really increased a lot as well so um long-winded way of saying very happy for these referrals to come to pediatricians but unfortunately access at the moment is harder than usual thank you both I'm just wondering if you want to add to that no that again yeah Dal is quite right that it will be very difficult to to to get a referral to see a child's cartridge but I would just add to that um when somebody has got significant comorbidities like obsessive compulsive features and other things which are much more needing help as well um then maybe you can kind of weigh up whether even if it's weighting a bit um you might want to go to the child's cartridge route but that's not to say that immediately um for somebody with 14-year-old with tixi you will have much better luck in getting a pediatric appointment yeah and great thank you um I'm just going to follow on there's a question from Zoe that came through early and she said asking to the panel generally um have you seen a rise in tixi and adolescent girls often with the comorbid anxiety and depression since COVID and Darryl and I throw to you first off it's kind of what you just alluded to then so I'm guessing that yes is the is the answer yeah thanks Zoe um we absolutely have and it's been described around the world and there's publications about this if you want to click the internet it's been very interesting and people are still struggling to understand what's going on so tix typically affect boys much more than girls including Tourette syndrome a ratio of about four to one in most series um and usually start in the early primary school or even preschool period um in contrast the teenage girls that have been presenting since 2020 actually since late 2020 this was first described uh I mean we always had a few that um in relatively large numbers um are um about equal boys and girls or even more girls perhaps I'm not sure what the latest data shows but very different gender ratio at least 50-50 perhaps high in girls even um and the comorbidity patterns a bit different less likely to have had ADHD type features and more likely have had anxiety and depression and some of them are presenting for the first time in the teenage years which is unusual in Tourette syndrome although some of them have had some sort of subclinical tix that haven't caused too much difficulty through the primary school years and they've almost always got a lot of anxiety and they're almost always very severe at onset as well really florid um I think Valsa made the point that tix usually emerge relatively subtly and creep up over a period of months or even years whereas in these cases they're starting really florid and the other feature is that they seem to be effective across social media and people might have heard about the tix pop phenomenon videos are being shared and that and within a school there might be many girls who are ticking off each other sometimes boys as well so it's fascinating there's there's a debate amongst experts as to whether this actually is Tourette syndrome or or what's called a functional neurological disorder in some ways it doesn't really matter they need these kids expressing that they're struggling emotionally and they need help but the only way it matters to some extent is that we tend to be a bit less even I already said we try not to use meds very often in Tourette with these kids will probably even have a high threshold in other words a less inclined med more likely to start with psychological therapies but I'm interested in Valsa's perspective as well yeah thank you that's crazy ticked off a couple of questions there Darryl that are coming through around the distinction between functional neurological disorder and the the tick tock ticks for one of one of a better word Valsa did you want to add anything to Darryl's comments there I think it is a heterogeneous group that's now coming up with that florid presentation after puberty and some of them would have had a predisposition in the family history personal history of a few ticks here and there but the the driver here is that and the anxiety and the disinhibition so the the combination of your highly anxious and stressed and you want to channel that stress through something and you're channeling it through this physical forms because you've got that disinhibition as a as a as a vulnerability or a risk already in you so you you you disinhibit and the stress comes and and overwhelms you and that's why you get that sudden onset explosive type of ticks and in management you need to kind of consider that stress anxiety trigger self-awareness and the working on the inhibitory strategies will be critically important than you would do in a regular tick involuntary motor inhibition type of situation so I think that's really fascinating both your comments around you know sometimes we get really hooked on what things are or are not you know what is the cause behind them for example versus what can we actually do to help people exist in a way that is less distressing for them and what you know skills we can help them develop and I think that's a really helpful way to think about and particularly for people who aren't experts in this space but they might be working in a school or an allied health or a psychologist social worker working with kids with really you know distressing and interfering anxious symptoms whatever that may be we've got really good skills and things that we can do with that but we can get sidetracked a little bit because we can be caught up that oh this is a tick I don't know how to deal with it so I think it's always good to look for those commonalities of what can be helpful which you've alluded to in in your chat I think that's really really helpful yeah Nicola I'll just add that we just kind of working on something we are calling it the IC bit which is the integrated cognitive behavioral intervention for ticks so just the behavioral you know motor response and that alone won't cut it so that cognitive part and the awareness part and that's very important to add on to these kids yeah for young people yeah sure thank you it's going to switch tacked for a little minute I've got a question for you Tim if that's okay from Marguerite and she's asking are you aware of any consistent correspondences between a particular trigger of this attack eliciting a particular tick let's say that three times fast for example a particular thought or sensory trigger consistently is eliciting the same particular vocalization so is there patterns I suppose in what leads to what so I can speak maybe from my own experience and my relatively limited number of patients who've had Tourette's over the years and maybe Val's for Daryl wants to add something to my answer but the the interesting thing about ticks as Daryl mentioned is that is that they they fluctuate in severity but they also change over time and I mentioned that myself and so the the pattern of ticks that I had when I was sort of 20 say was different from the pattern that I had when I was 15 and changed again to the pattern of ticks that I had when I was 25 so it wasn't so much that and in terms of triggers I wouldn't say there was a clear events trigger it was more the circumstances so so I say feeling stressed feeling tired giving a presentation to almost 500 people on my webinar and I have been ticking slightly as we've been as I've been listening and talking that you probably can't see it so so so so the the circumstances are the trigger rather than events generally and the and as I said it's the the the form of the ticks does change over time but that's over a month or sometimes years rather than rather than being particular circumstances so if I'm ticking in a particular way or I've been ticking in a particular way in one certain circumstances that's the same group of ticks that I'll have this another time I don't know whether Valsor has tarot has anything to add to that from their their experience with patients I think probably the question is referring to what we have described as stimulus into sticks so very particular stimulus produces a particular type of tick and there was a little bit of that during the start of the covid with the sniffing in the cough and various things so that stimulus was enough to trigger a tick attack or a bout of tick in people so that's a very specific thing that occurs in about in our series from the UK it was about five to seven percent so it's it's something very specific that some people get experience thank you Valsor Daryl did you have anything to add no okay cool um I've got a question that's come in the chat and the Q&A and I will open it up to see who would like to take this one on they're keen to hear a little bit more about differentiating mental ticks from OCD anybody got any Darryl or Valsor anyone want to take that on is there a the differential diagnosis seems very tricky to me so is there particular characteristics that you'd be listening out for for one of a better term in terms of that distinction between OCD and mental ticks do you want to go Darryl or no I think it's probably more your territory than mine if I've got anything to add after I will so one of the things that we say to different it's not a hard and fast rule because some people have got both the OCD be linked to the to the tick spectrum of behaviours and they have got the primary OCD as well so no one is immune from each other so what I'm saying is more to do with differentiating for those who just have one type yeah and one thing is that usually a non-obsessive compulsive disorder there is an obsession or a thought which you neutralise using the compulsion so I feel like I'm contaminated I'm you know I want to kind of get rid of that jam in my hand and therefore I wash so there is a thought that's the obsessional thought and then you neutralise it using the compulsive behaviour in OCD associated with ticks and the mental thoughts which kind of more as a compulsive tick we call it is that it's it's more about that suddenness rather than that process in which you kind of cognitively think about it and then you neutralise it but it's more much more quicker and much more abrupt without that conscious thought process anywhere in the scene and the second thing is that you're much less anxious whereas in primary OCD you get a lot more of anxiety in ticks you want to do it not because of anxiety but more because you want to do it in a particular way or until you get it just right so almost like the urge tick so you have got the urge to do it or have to do it until you get just right and that's what's driving it rather than the thought which is driving it so it's almost like the urge tick it's almost like it's driven by that wanting to get it just right or wanting to relieve that that thing instead of an obsessional thought which is what is accompanying the the compulsive behaviours in NOCD. Thank you Balsam. Daryl did you have anything to add to that? Look my understanding of this territory is less sophisticated than Bals's I found that really interesting but I'd have to say as I've had an interest in Tourette's over time I'm learning more about how common intrusive cognitive urges are of different types in kids with Tourette's syndrome and they're often not something that the kid will talk about readily unless you get an opportunity to kind of strange weird feelings and you know a very in-tune parent will sometimes be able to relicit this from the teenager and then convey it to me in the consulting room but I'm sure this happens these sorts of really uncomfortable intrusive thought processes happen more than I pick up on and yeah they can sort of compound the stress and confusion that with kids with Tourette's syndrome can experience. Thank you. Throw to you Tini for a sec. Valsa and Daryl are describing to me as a you know non-expert in this field but as a psychologist work with you know lots of kids is it requires an amazing level of ability to articulate actually what is going on to make some of these differentiations you know when you're trying to talk about our own thought processes or what things feel like seems it could be taken an enormous skill set individually to be able to do that I'm wondering from from your point of view and in your experience how easy is it to to kind of put words to some of these impulses or urges is that a real challenge for people do you think? Look I think it is I think listening to Valsa and Daryl speaking is thought-provoking for me it makes me reflect on my own experience I've certainly got better I think as I got older at sort of understanding some of what's going on for me cognitively and emotionally as well as in motor sense and the reasons and certainly I recognize that phenomenon of neutralizing obsessive thinking through compulsive behavior um although that's not seen as a part of the rest but that really leads me to another thought which is that um and this is not my area I'm you know I'm a non-expert looking in but it strikes me that we have these diagnostic labels like OCD and ADHD and and Tourette's but those are artifacts those are artifacts of how we think about how the mind works and how it may or may not behave in a in a sort of way we want it to and and to some extent the individual person has features of one features of the other features of something else and then we have a set of diagnostic criteria that we apply and they are really helpful in terms of prognosis and and and um guiding therapy but in but it's but it's not a good idea to confuse useful knowledge with an understanding deep understanding of the underlying path of physiology yeah that's fascinating I think also the um the thing that's buzzing through my head as your as you're speaking there Tim is just how much work people do regardless of whatever they're managing but whether it's they're shy or whether or not they're managing ticks or whether or not they have I don't know a few of us everybody has an ordinary amount of strategies that they're not necessarily aware of that they've developed over the years to manage things and I think what you're talking about as well is you know delving into that deep reservoir that people have like that listening to you all speak about um I see this a lot you know the notion that when people can control or suppress urges whether it's to to behave because of ticks or anxiety or whatever it may be that can often lead to a notion that people are turning it on or turning it off for for you know and when when people get adults get freaked out by things they often get a bit more rigid so I think that's a really interesting thing to think about as well as how much work people are doing and I don't know that always as adult professionals we're curious enough with kids about how much work they're doing to to manage what they're what they're doing and look I think I think balsa referred to that earlier that the part of the impact is is the effort both the physical efforts and I'm aware of that I'm certainly I'd probably with my neck for example where I've been sort of and and that sometimes you do try to do the tick just right so I mean I used to have a sort of throat clearing tick who was somehow sometimes it was a probably do it now actually and sometimes one of those clearing was is the right one and sometimes it isn't so I need to do it again so so there's this slight overlap between between stereotypical um obsessional behavior or compulsive behavior and and and stereotypical ticks and and I I just worry a little bit that we can't explain things through historical um uh nozology um that's um that it's the useful categories that ultimately as I'm sure we do we treat the person not not the not the disease label yeah fantastic thank you um the couple of questions around prevalence of adult onset ticks um so two a double bang question um one is how prevalent is adult onset and I know we might have talked about that earlier but a reminder would be great and is there a notion that the resolving with age is just getting people people getting better at managing it or do we think they it's actually they're less present do you want to start with that one yeah um I can say absolutely nothing about that sorry I thought that just before I said it to you I'm sorry yeah Nicola the question is about the adult onset first um you know by definition Tourette syndrome is or tick disorders is um to be having an onset during the developmental years before the age of 18 so but we do have um kind of we all have described patients who present later in in life with tick-like uh symptoms we call it late on statics um but not necessarily the primary tick disorder so there is a differentiation to be made and usually you get a reason for that sometimes it's a kind of a carbon monoxide poisoning I've seen um you know mild stroke of the base of danglia area sometimes infectious causes you know all kinds of things but it's the secondary tick and adult ones by definition are not the primary one that we are talking about here and secondly what happens over time and with adult life is that um we all have got a lot of premonitory you know neurophysiological stuff happening behind the scenes in our brains but we don't get to appreciate or recognize experience it because we have got a very strong what's called a sensory motor gating mechanism and when that gating mechanism is not working very well the hypothesis is that um you get that leaking of the premonitory urge into conscious awareness and then you kind of compensate that with the with the motor action with these the tick and the energetic relief cycle goes on but during development and the brain matures there's an opportunity for compensatory circuitry to kind of overcome that and so that you don't you know you you get the experience still but you you have found a way to not respond to it in the way that you would have done earlier on and and we believe that that maturation of the brain is what helps with the increasing age and in neurophysiological studies what has been found is that that pre pulse inhibition deficit stays on even for those whom you you think that you know they've become much better so that primary issue is there but your compensatory mechanism okay not necessarily conscious ones but even brain the maturation level and the circuitry level the compensatory circuitry come alive and we believe that the comprehensive behavioral intervention for ticks may be giving a helping hand to those maturation because what you're saying is that every time you get there you don't need to take you you kind of abort that cycle and thereby kind of make the inhibitory circuitry to become much more alive and support you to not do the tick and you may be giving a helping hand to normally what would happen in the maturation of the brain so is that a lot of people I think listening who are familiar in other areas around blamed brain plasticity and so forth that's tapping into some of that notion you can teach an old dog new tricks you know if we practice things enough we can um you know rewire the brain or build up the muscle circuitry in our brain to help those things that's really interesting the I'm going to have one last question before we we need to get a wrap up from each of you um there's been a lot of questions that I think you have covered around that the intersection between some of the other co-morbidities one of the questions that's come to quite a bit in the pre-registration questions is about any evidence around association between childhood trauma and ticks and Tourette's is there any evidence about an association between the two Daryl have you seen the thing with no I don't know the literature on that um I wouldn't be surprised if if if um if someone studied it well it wouldn't be an easy thing to study um if there was some degree of association although we need to be careful most kids with Tourette's have not had any more trauma than anybody else I think the word trauma is being used very loosely these days we all have trauma um so it depends what people mean by that but yeah I think it's important to recognize that there is in your biological condition and most kids um haven't had more trauma than anyone else but possibly it could be a manifestation of severe trauma um I think it's I think you know have I my clinical experience seeing kids who've had trauma and and have ticks of course because both of both are relatively common in my practice but the associations aren't easy about coming to other perspectives on that you think the differentiation will be hard as well given the comal bit is in the association between complex trauma and all the other common what it is as well such as OCD and ADHD and so forth but always a question that comes up go to Tim please yeah thanks because I think it's worth adding that whatever the epidemiology it is something that parents worry about I know my mother worried about this and I know that um other parents patients that I've had who've had tick disorders or some of the other comal bit is to disorders it is a real anxiety that parents have that's something that had happened has led to this they might be responsible and something they either did or allowed to have and made to this so it's probably a topic that needs to be discussed at some point in the kid not not perhaps first up but it's it's certainly a topic worth raising at some points in the relationship with a with a detached family I think that I think it's a really good but it's the unasked questions sometimes isn't it that that can be really helpful you know we get trained to say other people have questions or other people have raised this question with me which can be a general way of giving people permission to ask things that they might feel really quite nervous about but are carrying a lot of concern about I wonder if some people have told me that yeah questions really really valuable beautiful we could talk for hours it's 822 already so I'm going to ask all of you if you had a couple of wrapping up points or things that you wish you'd covered that you hadn't or summary takeaways for the audience tonight um what they would be and I might follow the same order so maybe for you Tim if you have any concluding thoughts for our audience joining thanks thank you yeah look I think as we've discussed Tourette's syndrome can be disruptive but it's also a part of who the person is treatment can help but so can self-acceptance and education for others and it's worth remembering that many noticeable people have had Tourette's including David Beckham the footballer Sam Johnson the 18th century polymath and Mozart the composer beautiful I love that thank you so much Tim Darrell some concluding thoughts from you my main thought is I wish we had more time I'm really enjoying this discussion and great questions coming through and I'm learning a lot so but what could I pick out I think I'd like to go back to the territory we were in a few minutes ago I think Tim was leading this idea of the the utility of diagnostic categories I mean and you know we talk about Tourette's tonight but as we keep saying these disorders tend to overlap and intermingle and travel together and I'm less interested in whether kids may diagnostic criteria for disorders rather than what they're experiencing which is a thread that I think we've all been talking about tonight so questions that I find useful and I teach and encourage the pediatric trainees to ask is you know starting with you know every day language like what's difficult for you what do you find difficult directly to the kid most of the time even relatively young kids and then if I can find some words to describe it really trying to interrogate it what's that like for you interrogate in a gentle way of course but what does it feel like you know you don't like having ticks or you find it hard to concentrate or you get stressed about going to school what's it what's that like also feel like trying to get some inkling of what they're experiencing and then in terms of helping and again this is probably following a thread that's we've come through tonight is starting with what have you found helpful because as you've said Nicola um people we all develop strategies to deal with our own weaknesses um what have you found helpful and that's a good starting point to build on um in trying to help people further sorry lost the news that love it thank you Del and well sir some final thoughts from you yeah I'll just pick on those that diagnostic issue first um because yeah I wrote a paper saying neurodevelopmental genes haven't read the dsm criteria and so it doesn't behave in the way we want it to behave in in neat pigeon holes and that's why I said about that ocb ocg kind of that borderland area many people experience both and the reason why I would make a differentiation is only for management purposes because if I treat a tick ocb like an ocd sometimes they don't find it useful because technique is slightly different and what you need to be kind of focusing on is slightly different and and the and the same with um I'll give you an example autism and social inappropriate behaviors you know somebody says that you know you take one mom said that you take them to the shopping mall and you go the kid would so she's back she's back and has got to us you know he would immediately kind of say oh I'm sorry I'm sorry and but the damage has been done and another kid with autism who has got social deficits therefore doesn't know would say she is fat and isn't she fat am I not telling the truth so you see the difference so it's a bit like you know understanding where that is coming from what the phenomenology is saying is incredibly important for for management so I'm I'm not a stickler for the the the diagnostic category as I said I profess saying that it it comes as you know a mixed bag of everything but for a particular person can be very important and and and for Ali I've been important as well as you reflect back on that kid um as to what is it that's kind of really the most important thing and where that is sitting along that spectrum of of behaviors and phenomenology which is which can help you with the management to be much more precise beautiful thank you I mean I think it's fascinating isn't it and I think that the um everyone's been fascinated by Tourette's often I think perpetuated by a lot of the myths also that you helped us to shoot down tonight but I think that notion of this and right you know so it's a diagnostic criteria are really important and helpful for for getting the right treatment and it's the whole whole child the whole unit the community around the child that we that we need to consider and siblings we haven't even touched on siblings tonight but you know the the the differential um impacts and supports that we can have I just really want to thank you all um for your wisdom and um genuine passion it's always wonderful you know it's great when it goes really quickly Daryl and you're right we could talk for another number of hours and we'd all be learning something still but I really want to thank you all for your contribution and your energy and enthusiasm tonight I don't thank everybody for joining um this evening it's been another wonderful mhpn webinar and I'm sure there will be um there are I know a lot of questions that we didn't get to specifically but I'm hoping that with the resources that are shared and the recording that's available people can kind of dig in and and review topics and interests there's also a lot of love from people who know you guys on the panel and the work that you've done so I won't go through all of that individually and embarrass you and call you out but suffice to say that people are appreciative of the work you do in the community and they all want to come and see you so I don't think those wording lists are gonna go down anytime soon um but for those of you that have joined us tonight thank you for taking time on a wednesday evening at this time of the year I know it's hard that's lots of other demands we would love to get your feedback um there is a survey which we really appreciate we do look at um and really take on board in terms of uh the content and quality of what we're producing as well as what else would be useful for you so we would love for you to fill that out if you can there is a pie chart icon on the lower right hand of your screen um if you could do that that would be great it will also pop up after you're trying to um as the webinar ends this evening you'll get a statement of attendance and you'll get the resources sent out to you all this evening um I just see what else I need to tell you about there's another webinar coming up as there always is um by emerging minds my friends and emerging minds I've worked with really closely uh practical strategies for working with children with a disability so have a look out for that that's on the 25th of July on the 8th of August we're commencing a quarrobbery they've got all the good words for me to say tonight a quarrobbery webinar series with black rainbow um on the impact of COVID-19 on Aboriginal and Torres Strait Islander LGBTQI plus SB community so keep an eye out for those notifications there's a podcast there's webinars coming up on alcohol and other drugs disability in AHD and adults registered to find out more I feel like um a radio producer now but there's always amazing content coming out and I'm really proud to be associated with MHPN and to learn from the wonderful people before I close and we let you all go there's local networks I also would like to acknowledge the people with the lived experience and carers who live with mental illness or other conditions and those who continue to live with mental illness in the present thank you for your participation in tonight's webinar and thank you again to the panelists and I wish you all and hopefully maybe over the school holidays people get a little bit of downtime um and restore a little bit thanks again to everyone for coming along tonight good night