Ask the Doc: A Neurologist’s Perspective

Presented by Dr. Michael Rubenstein##

Do you have a question about your Tourette Syndrome or your childs Tourette Syndrome?  Dr. Rubenstein is answering questions about TS in all its stages.

Dr. Michael Rubenstein is a graduate of the University of California, Davis, and West Virginia University School of Medicine. He completed his neurology residency at the University of Virginia in 1989 and began private practice in the Philadelphia area while also holding a clinical appointment at the University of Pennsylvania. In 2013, Dr. Rubenstein moved to a full-time faculty position at the University of Pennsylvania where he is currently an Associate Professor of Clinical Neurology.

Your First Doctor’s Visit

Good evening, everyone. Good evening. Doctor Rubenstein. Like to welcome everybody this evening and thank you for joining us.


Doctor Michael Rubenstein, our speaker for tonight, is a graduate of the University of California Davis and the West Virginia University School of Medicine.


He completed his neurology residency at the University of Virginia in 19 89 and began private practice in the Philadelphia area, while also holding a clinical appointment at the University of Pennsylvania. In 20 13, doctor Rubenstein, move to a full-time faculty position at the University of Pennsylvania, where he is currently an associate Professor of clinical Neurology. His areas of expertise include Alzheimer’s and related Dementias, Tourette’s syndrome, global health, and Headaches. Doctor Robinson has been involved with the Tourette Syndrome community for over 25 years as a primary referral physician, as well as administrative roles with Tourette’s, with Tourette Syndrome Association.


In addition to his work who has Tourette’s syndrome patients, doctor Rubenstein has also developed a Global Health Program in neurology and traveled to Tanzania where he provides neuron neurological education, and care twice a year in a rural clinic.


I’d like to welcome Doctor Rubenstein is a frequent speaker for us. And we’d like to welcome him tonight to our Ask The doc. We will be asking questions tonight, as Kelly said, we’ll get to as many questions as possible. Some of you have submitted questions in advance. We will try to answer some of those as well as the questions that come in tonight. So, let’s start off with a couple of questions about the experience of children. So is it possible for a child to exhibit tics more frequently at home, at school, or public setting?


So that one is, you know, so what I’ve been telling my and thank you thank you for having me. Thank you for the introduction. I apologize for not being on the screen. We’ve had some technical issues trying to get my webcam to show up on the on here but.


So, yeah, So, basically, during the during the whole pandemic, it has been, kind of, a, you know, as, I think, a stimulus to increasing stress for just about everybody.


And, as, I think, most of us know that stress and anxiety will certainly increase tics.


Um, know, most most children have, we often see the phenomenon for children where children are often suppress their tics during school time during the school day.


And we’ll actually, kind of let loose when they come home, because they’re, in, kind of, a safe zone with their family. And they don’t have to worry about suppressing as much.


So, I think it’s a combination really, of, you know, I just had clinic this morning with children, and the first question I asked basically is, you know, is your child going to school?


Is your child doing all their schoolwork and you know schooling at home virtually Or are they doing kind of a combination?


And, and that gives me some kind of an idea of what my expectations are for that child.


It’s very difficult at home, I think her children to kind of settle down.


It’s very difficult for them to kinda be in the same kind of mood, and the same environment at that they are at school.


And so, it’s, it’s, it’s not surprising to me at all that that, that parents may notice their kids kicking more during the daytime when when they’re, you know, they’re not in school, when they would have otherwise kinda been suppressing their texts.


And so, that’s, So that’s, I think, a very common thing, and it doesn’t mean that when kids go back to school, that there’ll be ticking a lot during the daytime necessarily, because they may again suppress a lot of their kicks during the daytime.


So I think it’s, it’s kind of a it’s it’s really difficult to make the assessment during this pandemic.


Exactly how children are going to respond to it really depends on how the chat, each specific child reacts to the, to the stresses of the pandemic, just in general, to the anxiety, and to doing schoolwork, you know, virtual schooling at home.


OK, thank you. You actually covered a couple of questions in there. There were some questions on the ability to suppress tix as well as kind of dealing with the remote learning situations. So thank you for covering that.


Next question, how can you differentiate, what is an actual vocal tick and what is normal behavior? For example, things like whistling, humming can be normal childhood behavior. How can you distinguish it as a tic versus normal childhood behavior?


So, you know, that’s a, I think it’s a very good question and it really comes down to kind of know what the essence of a tick is and, you know, don’t forget that tics. That tics are essentially mimicking, you know, parts of normal behavior.


And so what happens though with a with a tick is that the tick becomes a habit.


And So it really depends on a couple of things.


It depends on what the kind of repetition and frequency, and the fact of whether you do it in times where, you know, you would otherwise not, like if you are a whistling. Or otherwise, times where you win.


Think that somebody would whistle. So, if it was, you know, during, you know, some kind of where you’re sitting in a quiet time, sitting in, church, you’re sitting in, you know, movie and somebody’s whistling.


That wouldn’t be a normal time that somebody would whistle and do that.


And so that’s when you kind of look at it as being a little bit more of a habit.


I think when you really kind of get down to down to the, again, to the essence of the CIC, and that has to do with the Promontory sensations in sensory urges. And so really, when you ask somebody with Tourette’s and say, you know, why is it that you kick?


and you know, in children, young children, they have a hard time kind of describing that?


But at some point during their care and their childhood, there’ll be able to describe that they have a, you know, an urge or kind of a sensory kind of urge or promontory sensation. That kind of makes them feel as though they have to do it.


And that actually, when they do it, that’s kind of relieving that symptom or that that sense that they have.


And so really if you have, if somebody can describe that they have this urge or this feeling that they have to do it and that not doing it is difficult for them or require some energy and trying to suppress it, That’s pretty much the definition of a tick.


And it’s, you know, it’s very similar in some ways to how we think of obsessive compulsive behavior that they’re very different that they, they come from kind of different places and we treat them in different ways. And so you know, for somebody who’s doing a vocal tick where we’re doing a vocalization that we think maybe a tick, that would be something that you could. You could actually addressed by doing something like cognitive behavioral therapy or by doing comprehensive behavioral intervention for tics, or habit reverse, or things like that. And you would notice that you would be able to control that.


OK, thank you. Have a question is talking in a babies voice and licking themself can that be, part of Tourette?




I think that that very often, you know, saying phrases over again or talking in a baby boys who are talking in any kind of like a different voice in their own is is as much of a habit.


We’re where there’s that, where there’s like a stimulation to that. And so that can certainly be a vocal tics easily. It can also be, you know, an independent in the right situation.


It can also be, you know, some self stimulatory activity if it’s a, you know, if you’re talking about somebody who has autism spectrum disorder.


You could look at something like that as being a, as being, you know, a self stimulatory or you know, stereotypical versus versus a tick.


And so, really, when it comes down to it, it’s that it’s that sense of kind of feeling of an urge or feeling that they have to do that and that not doing it is difficult for them to suppress.


Um, so I think you said one was the baby talk and then the other one was watch.


Was the other behavior, the other active? Self licking, Yeah, licking, absolutely.


So we see, so again, this is the, know, this is kind of that definition of, you know, looking at looking at tics. And that tics are actually, you know, very often kind of a fragment of normal behavior And so you know, licking kissing Touching you know, those are all those are all kind of considered tics if they are done in the same fashion as being a habit, that is kind of becomes a formed habit.


OK, great, thank you. We have a few questions that deal with medication and treatment. So, are there any good or proven medications for tic disorders. So, perhaps you could speak a little bit generally about medication as treatment.




So, I mean, we have, you know, unfortunately, you know, I have to say in the years that I’ve been doing this, the medication, the medication list that we have has not changed dramatically, though, it may be changing sometime in the in the in the near future.


But, yes, I think that when you say proven, um, there are no there, there are far medicines that are, that there are few medicines that are FDA approved for the use of in treatment of kicks. But there are a number of medicines that we use, based on experience and that are considered standard of care.


And so, the the general tic medicines that we use are the alpha agonists which are clonidine or go on for seen, the long acting form of Guam Fussiness intuitive, which is the brand, and there’s a long acting form of quantity which is cafe, which is also a brand.


So, those are Alpha agonists. Those are the first medicines that people often use.


They also can work a little bit for ADHD as well and they’re well tolerated. They tend to be the first that we consider. The second medicine that we often consider is a drug to pyramid.


The brand is Topamax, that is a medicine that’s been around for over 20 years. It is a medicine.


That is, was initially used as a seizure medication and then became then was FDA approved for the treatment of headaches. And seizures, the one comforting thing to some degree is in, in seizures or epilepsy.


That medication is actually approved in pediatrics as well. So there’s a good safety record in pediatrics. We do use that medicine for tics. It treats only tics. It doesn’t treat any of the other behavioral manifestations of Tourette.


Um, the then you get in and then you make kind of a big leap in regard to the Potency of Medicines and the potential side effects and perhaps complexity of medications.


And you get into what we consider we call the Neuroleptics medications and the first class we use or the Atypical Neuroleptics medicines, which are typically will use risperidone or error rizal Air Pip resolves Abilify. Risperidone as I’m sorry. Risperidone as risperidone risk at all.


And there are a few other atypical’s as well.


And those medicines are effective for tix. They work on the dopamine pathway.


And they have fewer side effects than what we call the typical neuroleptics, which were, traditionally, the medicines, that were used for Tourette, which is, how a paired or howled all.


There’s another medication called …


Zeid, or App, and then there’s also another medication called Flu Fantasy or prolix.


And those those medicines that typical neuroleptics are the ones that are kind of most notorious for causing something called tardive Dyskinesia, which is is a movement disorder in itself that can be irreversible. And it’s always kind of, we always caution patients that we always have to think about that.


Um, So those are the those are the standard medicines that we use.


There’s there’s a medication, Tetra benzene, and there’s a new version of it called do Tetra benzene, which is out.


Those are medicines that have been FDA approved for some other types of movement disorders, but have been used over the years, for Tourette for tics specifically.


And then, we know, as far as like, newer things that we’re thinking of, source therapies, there are certainly deep brain stimulator therapy. We’re looking at Trans Magnetic transcranial stimulation with using magnets.


There’s a number of things that we’re looking at and then, of course, there’s medical marijuana that has been has been approved in the state of Pennsylvania for the treatment of tread as well.


OK, thank you. So on the other side of treatment, that’s medication, we have a couple of questions, question, asking, how effective is CB IT therapy? And then a couple of questions. one about a nine year old with a new onset tick. No other medical comorbidities is it worse to start any treatment? And another a seven year old with mild Tourette. But the tics are worsening.


The preferences to stay away from medication. Is there any other way to help him? So, perhaps you could kind of attack all of those lines talking about CBT and other treatments.




That’s a, that’s an, that’s actually kinda, that, a good way to kind of enter into the therapies and to talk about, in addition to some other concepts.


And I think one of the first concepts that I, that I, you know, spend time with, with parents in my office talking, is that, is that you have to understand, that first off, there is no cure. We don’t have any treatment that is curative for Tourette. And so what we’re looking at is, we’re looking at treating, treating the symptoms up to rent.


And so when you, when you say that we’re treating something symptomatic Lee, that means that when you are taking the medications, or doing a therapy, whether it be cebit, or C, or CBT, when you’re doing those things.


And when you’re practicing that, then they’re effective. when you stop practicing them or when you stop taking the medicines, they are no longer effective.


But the main point is that, is that whether you treat something earlier, treat something late, it’s not going to change the natural history of charette in that individual patient.


So whether you decide, you know, that, whether you go to see the doctor and you talk about medicines and you’re not ready for medicines and you decide to wait six months, you’re in no way harming your child, your no way, kind of not providing them treatment that they should otherwise have, the only thing that you would be losing, would be the potential benefit.


So if you took, if you took clonidine in clonidine, decrease the tics, then that would be a benefit. And so if you don’t take the quantity and you have tics, then that would be the downside. But there’s no long term downsides.


So if you have a child who’s kicking and you’re worried that the tics are gonna get worse, there’s nothing that you can do. That is going to change the course of history for an individual patient.


There’s nothing that you could do at that moment that’s going to make them less likely to have an increase in tics as time goes on. The only thing that you can do is to make a decision whether to begin some type of behavioral therapy or to begin a medication that, you know, may treat those tics and may lessen the likelihood that they’re tics will kind of worse than when they’re on the medication or doing the therapy. But as soon as they stop it, they’ll go back to where they would have been anyways.


So, that the trajectory of anybody’s tics and associated behaviors doesn’t change in any way based on any therapy that you do.


So that’s something that I think people really need to understand because there really isn’t a huge sense of urgency from a standpoint of treatments. You know, you shouldn’t feel that you’re withholding treatment from your child or in some way you’re going to be damaging them for the future. So that’s one kind of key thing about about these. When it comes to, when it comes to the therapies that the American Academy of Neurology came out with, practice guidelines for, the treatment of Tourette syndrome last year was the first time they ever came out with the consensus report.


And there was nothing really earth shattering in the report, so there was nothing new, It wasn’t any kind of revelations that there were new medications or anything else. But I think what was important about the guidelines was worthy were the, the, the facts that you really need to employ behavioral therapies. And if you’re not employing behavioral therapies in the treatment of patients with Tourette syndrome, in theory, there needs to be a reason why you’re not. Because those therapies are perhaps the most effective therapies that we have. And certainly there, the therapies that have the least amount of side effects.


And so, if you can, if you can err on the side of using just therapy and not medications, that’s always a benefit.


And so, we have been using, you know, I use in my practice. I use cognitive behavioral therapy and use comprehensive behavior to prevention for tics. And I always check to see whether patients are seeing a therapist. Or sometimes people are resistant to seeing therapist. Sometimes, teenagers can often say, well, I don’t want to see a therapist, and that certainly, you know, that’s something, a decision that people have to make.


Um, the problem, obviously, with therapy is that if you’re not prepared or you’re not, you’re not bought into therapy, and don’t have, and don’t have, you know, faith, that it’s going to help and it tends not to work.


And so so people have to understand that, you know, this is something that’s tried and true.


Kind of, you know, treatment approach that we take with patients.


And so I refer all of my patients and I think that there are certainly times where you have patients who are so anxious that you can’t get them engaged in therapy until you say start a medication and kind of you know, take them off the ledge basically. And so you have to drop their anxiety a few notches to be able to get them to engage with anybody.


But that’s certainly, you know, that’s certainly a short term kind of plan.


Ooh, and so, we always employ Cognitive Behavioral Therapy primarily for obsessive compulsive behavior and to some degree for for ADHD as well.


And then we use comprehensive behavior intervention for tics, for tics specifically. And most therapists do both cebit and CBT.


And and it really is, you know, has become the cornerstone of treatment because, again, you know, in the long run, what what you really want to do is you really want to equip your children with a tool with the Toolbox and the right tools to be able to kind of cope with the difficulties they have and a huge part of that Toolbox are those therapies.


Did I hit all those? There’s one that maybe I didn’t. Did I get everything?


I think you got it. I think she got it all. Thank you. And you mentioned, in passing, in one of your previous answers, you made mention to medical marijuana. We did have a couple of questions, so maybe you can speak to it a little further. What are your thoughts on medical marijuana and is there any research being done on it, and its effects on T S currently, and thoughts about cannabis oil?


So, um, so I was hoping that maybe I wouldn’t have to discuss this, sorry.


No, that’s OK, no, no, because it comes up all the time. So I have a significant concern about medical marijuana in adolescence.


And that is just merely from an addiction standpoint.


And so, so I have, I have certainly shied away from using or from recommending medical marijuana for my adolescent patients. I’ve had a few that have, that have gone, have tried it.


You know, it is, It is approved now in the state of Pennsylvania as well for, for the use of treatment of Tourette syndrome. I do think that there is a data to suggest that medical marijuana probably does have an effect on tics. I think it’s a complicated question.


because it’s very difficult to kind of sort out where that effect lies, whether that effect is in essentially reducing anxiety or whether it’s actually treating the tics directly.


Um, but, but again, I just have an issue and in adolescence, you know, I’m, I do have some experience in the, in the, in the world of addiction as well, and I think that, you know, that, no, The brains don’t don’t fully mature until you’re 25, and all of these medications have some effect in regard to causing some addiction.


If if somebody has an addictive tendency or has that predilection for addiction. And so I wouldn’t want that to be kind of the gateway for anybody. So I have shied away from it.


I have had a number of adult patients who have self medicated over the years, who swear by.


I met marijuana at the time and now medical marijuana that it certainly helps them. Again, it’s just a very complex question of trying to sort out exactly where it’s working and whether it’s merely helping decrease anxiety.


You know, if I had my preference, I would much prefer to see people doing CBT than doing medical marijuana.


From the standpoint of decreasing anxiety and obsessive compulsive behavior.


There is research ongoing OK, thank you.


Here’s another one, somebody is talking about a 12 year old girl that has T S, and is also struggling with Mrs. Sonia.


It’s impacting the family relationships and the question is, is it a common thing in children with … to have mister Sonya and what can be done? How can they help her? So perhaps you can explain Ms. Sonya and then its connection to us. 


Yeah, I don’t, I don’t really know of a specific connection to T S, so Ms., A phony is essentially just the just a kind of A.


Base an overreaction, you know, essentially a negative reaction to specific sounds or noises.


So that if somebody hear something either from themselves or from somebody else.


You know, frequently, it can be something that can be as simple as breathing or, or, you know, sniffling or, you know, a cough, that if they hear that, it triggers a, it extremely kind of negative reaction, that is extremely unpleasant for them.


And, and to my knowledge, you know, I have not seen, um, no, I’ve not seen a lot of … with Tourette necessarily, so I don’t know, I’ve seen, quite a few Tourette patients over my, over the year over the 30 years that I’ve been practicing. And I don’t recall specifically that, you know, seeing patients with that.


It would not be surprising to me because it is probably kind of runs into the same kind of category as obsessive compulsive.


So there’s probably some connection there, you know, the in the centers of the brain where things light up when you see patients who have those problems.


Um and so I would I think the the main the main kind of treatment for that is desensitization similar as as we do with other phobias probably some desensitization therapy that might work for that, but that’s that’s the most I know of it. I would just have to say, I haven’t seen it commonly in Tourette’s syndrome.


So I’m not sure of a connection.


OK, thank you. Is there any data around a correlation between injury and T S in this case specifically someone is mentioning that the child was involved in an accident as a baby STS and is wondering if there is any connection between injury and …?


So the answer to that is Yes. And so, especially, in, in, in, in, a very young person.


So we do know that, that, in children who have had, say, hypoxic ischemic injury at birth, that often can lead to things like sara like cerebral palsy, or, you know, essentially a brain injury at birth.


Or a brain injury very early in life.


Can can be associated with a much higher incidence of Tourette syndrome. So we see that in children with cerebral palsy with hypoxic ischemic injury, we see it also in some other disorders that we see it is. In Autism Spectrum Disorder, we have a much higher incidence of Tourette.


I think that the, that, the issue, specifically with injury, is that, that, you know, when I first started training, I think that we felt that, know, what we were seeing was trapped. Like, behavior. But I think, now, we feel pretty comfortable, that what we’re really seeing, is tretton. So there must be some, some mechanism of, you know, some genetic predisposition in those in the patients who have that issue. And that, that the, the injury may be more likely to allow that genetic predisposition to kind of express itself.


And, and, and we certainly see tick like behavior in patients who have this. We do see it also.


In some other genetic disorders. We can see higher incidence of Tourette.


OK, we have a couple of questions dealing with diet.


one specifically asking how does sugar adversely affect tics? and another asking, are you aware of any benefits of diet on tics? For example, the keto diet. So perhaps you could speak again a little bit to any connections with what’s diet in general and particular things like sugar or other substances.


Or I think I think the best we can say about about sugar is similar to caffeine and that is that you know, anything that is a stimulant in any way is going to, is going to affect Tourette by causing an increase in tics.


But again, you know, that’s just going to be that’s just going to be transient or temporary. It’s not going to be any kind of a long term long term effect on one individuals’ Tourette syndrome or how much they’re ticking. So anytime, you know, anytime somebody is taking, you know, for kids taking using a lot of caffeine or caffeinated drinks or a lot of sugary drinks, that can certainly cause them to have increased stimulation. And the increased stimulation is going to in somebody who’s pre-disposed to having tics is going to have more kicks.


And so we certainly know that that occurs.


The same thing it’s, it’s it’s in the same kind of a, in a way categories.


You can think of is, like, stimulant medications that we use for ADHD.


In the setting of Tourette syndrome very often will increase tics and about 50% of patients, with, with Tourette syndrome, have an increase in tics when they take a stimulant.


It’s the same thing that when, you know, anybody who takes a stimulant can actually tick, even if they don’t have to read if they’re taking enough of the stimuli.


The other issue about, about a diet, we don’t have any.


I don’t think there’s any good data that I know of that is specific, I have had patients try Just About every diet, I think, you know, that the I’ve had a number of patients go gluten free.


I have not had anybody kind of become a vegan necessarily, and, and report to me that that change things. I think that gluten free diets people have reported a benefit to that.


As far as the keto diet, I’m not aware of any, the ketogenic diet, as far as whether that having been used in Tourette. although, I imagine, maybe some people have tried, but I’m not aware of any research into that. And, the benefit to that, it’s a, pretty, you know, it’s a pretty difficult diet to keep on you. It’s mainly used in, in epilepsy.


And so, Children’s Hospital certainly has, has had quite a long history in using the ketogenic diet for, you know, for severe epilepsy, epilepsy syndromes, and it’s not the easiest diet to stick with.


I wouldn’t, and it has other health risks just by the nature of the diet itself. And so, I wouldn’t consider that I don’t think that’s been used.


OK, great, thanks. What is the percentage of males whose tics significantly decrease or subside altogether after 18 years of age and we had another question that asked, is it sort of the opposite? Is it common for T S to get worse in adulthood? So perhaps you could speak to those.


Yeah, so I think that it is not common for 40 S to, know, in, in what we kind of consider to be the standard, kind of, course, of the disorder or the syndrome. It’s, it’s, it’s most common, that tics are not worse and adulthood and usually are better and adulthood. And likewise, the repertoire of tics typically do not change an adult but from what they were in childhood.


So, you know, if somebody had specific tics they did throughout their childhood, we wouldn’t expect them to develop a whole new repertoire of tics when they became an adult. So it’s not really common.


No, I think that you have to probably look at, you know, the underlying kind of generator of the tics.


And so I would commonly look at why, if the tics were increasing to that degree that it was substantially different from when they were younger. I would want to know, was there anything else that could be contributing to that increase in tics, like anxiety or stress, or other other issues?


You know, that being said, you know, I have seen patients in, you know, adult patients who had very minimal tix when they were younger and then had more severe tics that were more noticeable when they were older.


Know, sometimes we say to ourselves, well, maybe they just didn’t remember what their cheeks were like when they were younger.


But, but, you know, I think, I think there have been cases I’ve seen cases of patients who really had no tics when they were young when they were children. And then they had adult onset tics.


No, that’s not really in the diagnostic criteria for Tourette syndrome but I think those of us who’ve seen lots of Tourette patients and especially, you know, I see children and adults, on the that that, you know, I’ve seen it.


I won’t say, you know, commonly, but it certainly has occurred over time.


So the general sense, the general sense is that we expect kicks to peak around puberty, kinda mid teens, and then typically get better in the late teens into the twenties.


And they should they should diminish they tend to probably, never go away completely. But they’re just they’re just, kind of manifested differently in the same thing with the with the associated behavioral manifestations. So the ADHD and the obsessive compulsive behavior unfortunately do not lessen when you’re an adult. But they’re, they’re managed, they manifest very differently and those are personality traits. And so they’re kind of like, hard, wired into your brain, essentially.


OK, thank you.


If your child has had a motor tics, motor takes and vocal tics for over a year, but without correlation to any medication is, does that mean it’s an automatic TAS diagnosis?


Yeah. So, so, that the, I think, the, I think, the, the, the point, and, you know, what I?


So, the diagnostic criteria are, are, for, you, know, we create diagnostic criteria, primarily, for research purposes. And that. And that people know, if we’re doing a research trial, we want to make sure that, that the patients who are that are entering into the trial, have some homogeneous similarity. They have some similarities between all of them, and so, we use diagnostic criteria for that.


And again, that’s not to say that, that people can be diagnosed outside of those diagnostic criteria like patients who have adult onset Tourette syndrome.


So the answer to your question though, if somebody is, is truly having vocal, tics, and motor kicks and they’ve been, it’s been there for over a year and not related to any other condition and not related to an underlying medication, then yes that satisfies the diagnostic criteria for Tourette.


Um, I have patients who come in to see me who have had tics for six months.


And they have both vocal and motor tics and they’ve been ticking for six months and they have a long history of ADHD and maybe a little obsessive compulsive, this or maybe I’m looking at one of their parents. And one of their parents is taking a little bit or one of their parents, their mother, as, you know, tremendously obsessive compulsive. Say mother because it’s more common in the … in females with the with the genetics. Then, then, I may say you know what? We’re not really going to label your child is, having Tourette but I think that, if you want my gut feeling, you know, that’s where we’re heading. Is. that, that’s what this diagnosis is going to be.


So I think you have to take it all. You know, into consideration when you’re, you have to look at the patient as a whole.


In making those, and making those assessments and diagnoses, I’m not a, I’m not a label or so, you know, diagnoses to me or are, you know, I won’t say meaningless, but their diagnoses to me are more of something that people can then research and they can look at and can have a feel that now they know what they have. But really what it comes down to it as we treat it symptomatic link. So we’re treating either the tics or we’re treating the obsessive compulsive behavior, or retreating the Attention Deficit Disorder or ADHD.


We’re not treating Tourette syndrome necessarily because there really is no treatment, per se, for Tourette syndrome.


There’s treatment for the symptoms of Tourette syndrome, and so really that’s the kind of crux of it.


OK, and a bit of a follow up if vocal and motor tics are not interfering with a child’s day to day life. And it’s considered mild and not debilitating, is it important to follow up with a neurologist or is that only necessary to seek professional help when seeking medication?


Well, yeah, I mean, in this country, you can’t get medications without seeking medical, malka help. But, but. But again, if somebody has mild tics that are not disabling.


So, so just to give you kind of some insight into what, you know, what my, you know, what my day is like, when I’m seeing patients, basically. And what I tell my patients in the office is that is that tics are really what bring people in the door, but it’s not what I focus on.


So if somebody has mild tix, what I’m going to do is, you know, clearly, they don’t need treatment for that because they’re not disabling.


It’s not say bothersome to them. The child’s not complaining that they’re, you know, feel socially feel, feel self conscious because of them, and it’s not bothering them. Then, there’s absolutely no reason to treat the chicks. But, big question is going to be, you know, what is their underlying kind of psychological makeup?


And that’s the most important thing to me, is because even if a child is doing well, say, in third or fourth grade, what I’m gonna do is I’m going to educate the family to say OK, things are going well right now. Your child has Tourette syndrome. There’s a very high incidence of ADHD and it’s a very high incidence of obsessive compulsive behavior.


They may not be displaying some of those things right now, but it’s something that you need to watch. And Eugene to make sure that you monitor it going forward. Because the last thing you want to do is have a child all of a sudden, run into a, run into a brick wall in school, or some hurdle, and then find out that at the end of the school year, the child is like not passing. doesn’t have passing grades, because they were having difficulty with attention. And focus.


And so I spend the greatest amount of time talking about education in my, in, in the pediatric population, and talking about the fact that children can do incredibly well, all through, all the way through grammar school. And then they hit middle school, which is a transition time.


And all of a sudden, the difficulty they have with organizational skills, and the difficulty they have with attention and focus might all of a sudden reared its ugly head.


And if you’re not, if you’re not watching, and not prepared to kind of deal with that, then you’re gonna lose time. And losing time in education is significant, If you lose a year of education, that’s not something that you can get back.


So, so the tics are really kind of, to me, more of an indicator of what the underlying, it’s like, the tip of the iceberg. It’s the underlying.


You know, it’s what we, what, what Tourette syndrome is known for, and what its fate, what it’s defined as, but it’s really not the most disabling. And the majority of the disabling features of Tourette syndrome actually track tremendously with, with the attention, with the ADHD.


So children, children with Tourette syndrome, who have no ADHD.


And their OCD is, is not impacting their attention and focus, have, little in the way of disability compared to children with ADHD. And so if you and the, the disability is very similar to that in children with just ADHD. No. Correct.


OK, thank you. We have a question here about research, What does the most recent research indicates regarding the cause of Tourette and what areas of the brain are affected?


So, um, so from a standpoint of the research, I mean we, you know, the the the most, I think, important research that we’ve done recently has been more with the, looking at the basal ganglia. And, you know, we know that there’s different areas of the brain that are affected, like the pre-frontal cortex.


It is also involved and we know those things from medication use and medication history and kind of response to medications. But the, basal ganglia is probably where the, where, the, the, the, the, whole, the main problem lies and that’s the area of the brain that’s involved in forming habits.


And that’s The area of the brain that is involved, in, kind of, turning activity, on, and off, and that’s also the area of the brain that’s involved, with, kind of. Habits becoming, kind of being labeled as good or bad. So habits that are that are harmful versus habits that are not.


And so that area of the brain is, that is the area that is the most most likely, the culprit in regard to in regard to tics tics. For sure.


And and that is why, you know, we see that.


We see that deep brain stimulation, you know, which is used in extreme cases, you know, certainly works at least, at least for some time, works to decrease tix and makes a huge difference.


And so on and has been used it’s no longer kind of experimental It’s no longer investigation was being used as standard therapy in patients that are that are maximally disabled from tics.


It’s also been used for, you know, for other things like obsessive compulsive behavior, too.


So that’s kind of where we think of it, you know.


My, My feeling is that, you know, this.


What the way I describe this, to pay to families and to patients, who, maybe don’t, can’t explain it to themselves are gone, aren’t part articular enough to think to feel it that way is that.


That really the tics are kind of a hypersensitivity, which is where, you know, the basal ganglia is where all the sensory information is coming in and being processed.


And it’s essentially essentially stimuli that that don’t wouldn’t normally reach the level of consciousness in a normal person, are we just have a lower threshold, it corrects patients, and that they, they feel this this hypersensitivity is kind of like more noticeable to them. So that kind of best example I give her if if a family, you know, if it’s multiple members in a family suffer, an upper respiratory infection, and they’re all coughing. And then what will happen is like everybody will stop coughing after three days except 1.


1 of the, one of the children keep coughing for a month and and develops into a habit, that is, that is a tick.


So that’s how tics can often develop and.


And that’s a habit that forms, because of this problem, with the basal ganglia.


OK, thank you. We have a couple of questions on genetics related to genetics.


So, what is the likelihood of passing Tourette to your child if you have the diagnosis, and someone also asked, essentially, if, there are two kids have it, but the parents don’t.


No, Is it considered a genetic disorder? How do you explain if the kids haven’t, but parents do not?


So, we, you know, we’re doing that research actually at chop. So we have a study at Children’s Hospital, where we are. Doing genetic studies and drawing blood on.


Children who have a diagnosis of Tourette when both, when neither parent has any, any diagnosis of Tourette. so we are actually doing those genetic studies.


And so, I think to answer the first question, which is, you know, what is the what are the chances that if you have Tourette syndrome, what are the chances of your child having Tourette syndrome?


And, you know, for many years, we built, we felt that this was a simple what we call autosomal dominant trade, meaning that that each child had a 50 50 shot of having the genetics. The genetic material passed on to them.


and that the difference between males and females was that males had about 100% penetrant rate, which meant that if they had the genetic material.


They would demonstrate the full spectrum of Tourette syndrome, whereas women have about a 60% penetrance rate and. and that only 60% will demonstrate will display the whole spectrum of Tourette syndrome with tics and everything, and that and that but that many of them may display. Just obsessive compulsive behavior. So, in the early genetic studies.


Looking at large families, with Tourette syndrome, you saw much higher incidence of women with obsessive compulsive behavior in those families without having tix much, much higher than the general population.


And so that was the original kind of idea. I think we now feel strongly that this is that it’s not simple, lot of thermal dominant that it’s probably what we call it by lineal trance transmission. Meaning that both parents probably contribute something to it.


And that it’s not just a single parent that contributes everything.


And so that probably explains why we see we see Tourette syndrome say in two children with neither parent having the false, you know, having any symptoms at all.


And that is probably that they, that the parents probably carry some genetic material but not enough for, for them to basically develop the condition. But enough for them to pass on some of it that, that, it’s likely for their children to have it.


And that’s probably the best explanation for that.


And the second way that we kind of explain that is also when we talk about, and I’m just blanking on the term now but where essentially, you know, the question is, well, if it’s by lineal how is it that it is likely that two people would need it? Who both have the genetic material? And that is that, oh, it’s called a sort of meeting.


And so, a sort of meeting means that that, like personalities attract each other and so that very often through a sort of meeting, there might be a higher incidence of, of, you know, parents with kind of similar genetic backgrounds in regard to those issues. That might attract, and that’s why you see this. You see this incidence of tourettes, it could also be that people have kind of spontaneous mutations.


Obviously, it wouldn’t be common to have a spontaneous mutation in two children.


So, it’d be more likely explained by some some kind of bilinear transmission. Some contribution from both parents.


I normally sit in my office, and, and like, you know, I, the parents, and try to decide, who’s the guilty party.


And, you know, it’s, it’s very often that, you know, when we talk, when I’m talking about kind of the tics and the ADHD and the obsessive compulsive news. that, like, you know, the parents are kind of looking at each other like that. I’m describing some behavior that they have that they never recognized as being abnormal.


OK, we have another question, to going back to Medication.


I’ve read about a new medication called, capa Pam, for Tourette Is it being used now?


So I don’t, we’re not, you, it’s not, I don’t think it’s released. I don’t think we’re using it. I think it’s, I don’t think it’s available to use, it’s a medication that, that was, has been trialed and had very promising results. So that there’s a likelihood that it may be out sometime soon.


But I don’t believe it’s available commercially right now.


OK. And somebody asked about the dental guards and asks if they are worth trying. So perhaps you can just share with us what if anything you know about the dental guards?


I don’t really know much.


No, I, I think, Uh, I’m not even sure, because I have not.


I have not know, talked, about using them with any patients, and so I don’t really, I’m not familiar with it.


Um, I would love to hear more about it. I would imagine that it’s something to do with with trying to kind of decrease the you know again. It’s these this hypersensitivity in these kind of like a lower threshold for stimuli to reach the level of consciousness.


And so, if somebody is having some problem where they’re, you know, kind of snapping their job, doing different things, it could, that could change things for them, but I’m not, I’m not familiar with it in any other way, OK, Thank you. Is dizziness and body soreness a side effect from tics?


I mean … can be kix can be very uncomfortable.


And so, I would say that like specific, no specific pain related to a specific, specific tics would be very common.


I don’t think in general that I would consider that I would consider body pain to be kind of like something specific.


And dizziness would also be something that I think would be you know difficult to, attribute to Tourette syndrome. You know, when I’m using, when, we’re using quantity and I want the scene, both those medications are actually blood pressure medications. And so if you’re using those medications and you are complaining of dizziness, that’s certainly possible that, it could be dropping your blood pressure somewhat.


And so that’s something that’s a question that I ask everybody who’s on quantitative glyphosate, and, like, are you experiencing any lightheadedness, dizziness, but not dizziness, per se.


OK, and here we have, just a question again about some things, whether or not they can be considered tics. So our … repetitive phase, it phrases excuse me, like I love you. Hey, mom, and guess what? Considered a vocal tick?




So, there’s actually a, there’s, I don’t know if I can I think I can have it. I think I mentioned this.


There’s a, there’s a great podcast on that that somebody who works with the New Jersey Center for Tourette Syndrome, Sarah …, who is a counselor for the, for the, the the Leadership academy.


Basically, she and I did a podcast And the podcast is called brainwaves.


And if you Google brainwaves and Tourette Syndrome, you can listen to her, describe her tics. She’s incredibly articulate. She’s a wonderful person, I’ve known her for many years. And since she works with the New Jersey Senator for Tourette syndrome as well, I think I can mentioned her on this program, and she’s very open about her, about her Tourette syndrome.


And she gives a great, a great kind of description of phrases like that and what happens and how they feel. And it would be great if people want to listen to that brainwaves episode.


I think I think that would be very helpful in describing, but absolutely saying full phrases can absolutely be a tick.


OK, I think we have time for a couple more questions. So we’ll see if we can just finish up a few more can. And adult FTS without active Tics, for example, childhood history of tics medicated for ADHD and most if not all tics subside. In other words, are you still considered as having T S if tics are no longer active?


That’s a good question.


I mean, you know, I think that I think that what I, what I would say to that, is that, is that yes. I think the answer is you still have to read. And the reason I say that is because, you know, you still have the same risk. Your children still have the same risk.


So I think you still have Tourette syndrome. You had the tics when you were young so that you have the diagnosis.


And I think you would still be susceptible to having tics in the right situation.


So, even though maybe your chicks have have resolved you know, given the right circumstances of anxiety or stress or stimulants there’s, there’s a high likelihood that you can certainly develop tics again.


And you know, I’ve had patients who’ve been in remission for many years and then develop tics again. And so my the answer would be yes because I don’t think those genetics ever go away. And so you certainly have the genetic underpinning to kind of have had the syndrome and certainly to have tics resurface at any time.


Right, let’s try one more. I have one daughter was T S with tics and OCD. I have an older daughter that has extreme anxiety. Could my older daughter have the extreme anxiety that might be related to T S without tics?


Yes, yeah, so that’s that. So with the extreme anxiety, you know, what I would say would be, you know, have they gone through formal neuropsychological testing and, you know, it’s very likely that, you know, I consider kind of obsessive compulsive behavior, anxiety on a continuum.


And so very often, people with extreme anxiety also have underlying obsessive compulsive behavior, are a tendency to having that.


And so yeah, I would absolutely say that, if I had it, you know, that, if I add one child with Tourette and another child with anxiety, that the child with anxiety, certainly as, is, probably, you know, especially a female, is, is definitely in that realm of kind of the behavioral manifestations.


And so, you know, you can’t diagnose them with Tourette’s syndrome because they don’t have tics.


But when you’re looking at that, talking to talking to people about the heredity, vegetarian nature of Tourette syndrome, you would certainly say that there’s a good likelihood that that, that that child would could have children or could pass on the genetic material for Tourette syndrome.


OK, and I think, I’ll throw in one more question came in, asking about acupuncture or Chinese herbal medicine. Do you know anything about these as treatment’s 40 S?


I don’t know about them specifically for TS but I’ve had TS patients who’ve who’ve used acupuncture before.


And you know I’ve recommended acupuncture to a number of my patients, not just my Tourette syndrome patients but to other patients, pain patients, chronic pain patients I think and headache patients. I think that, from my perspective, there’s not a huge downside to trying acupuncture.


And I think there is reason to believe from a standpoint of, you know, other Western, you know, other Eastern Medicines, that, that there’s, you know, there can be very significant advantages, probably the majority of them from a standpoint of relaxation, kind of, and stress reduction.


And so I think that if you can do acupuncture that kind of works in that, in that fashion, that would probably significantly less than Texas, significantly less than anxiety, what would be the youngest that you would use acupuncture on.


That’s a good question, I don’t really know that answer. And so I think that would kind of be, you know, I think it would probably be, it would probably be an adolescent.


I probably would not do it on a child.


And that just has to do with some of the pain, kinda some of the newer data that we have regarding pain and everything, with children.


And so I probably would look at, I would probably look at doing adolescence because it really requires no significant understanding of what we’re doing.


OK, great, I think we’ve answered almost all of the questions. If there are any that have gone unanswered at this point, we will put them up on our blog. I want to thank doctor … for his time and for for all the answers to these wonderful questions. Help to people have found this to be helpful, and I’d like to turn it back over to Kelly to wrap things up for this evening.


  1. Christine says:

    I have been finding that most practitioners do not accept insurance for CBIT. Can you comment on why this is the case?
    Thank you

    • Dr. Michael Rubenstein says:

      Unfortunately, psychiatric and psychological services have for a long time been fee for service, though you should be able to get some reimbursement from your insurance company by submitting the bills. They are usually reimbursed at 50% of the “usual and customary fee” which means that they have a maximum fee that they will reimburse half of. If you have an HMO, then they may provide psychological services through a psychiatric center that is fully covered.

  2. Christine says:

    What do you think about the self guided “tic helper” program?

    • Dr. Michael Rubenstein says:

      I feel that having a one on one therapist trained in providing CBIT is probably best, but if that is unavailable for whatever reason, there is good evidence that Tic Helper (www.tichelper.com) works very well.

  3. Rina Engel says:

    Is there a way to see the questions that were asked this evening?

    • Kelley T says:

      Rina, A transcript of the webinar will be available in the next couple of days. Send me a reminder next Tuesday and I send the transcript to you.

  4. Carol M says:

    My son is 16, almost 17 and was diagnosed in 3rd grade. He’s been through a lot like so many others. He’s expressing concern about how to handle the frustration with remote learning. Besides TS, he injured his L4/L5 and has daily pain. How can I help him?

    • Dr. Michael Rubenstein says:

      I don’t have any other great words of wisdom as far as the remote learning is concerned as you are not alone. I can’t imagine anything more frustrating for Tourette’s patients than trying to focus on learning at home. As for the low back injury, I am a huge believer in physical therapy and have been through numerous sessions myself.

  5. Sarah P says:

    What are ways we can calm the nervous system? Due to tics my son refuses to learn to drive. This is seriously debilitating to him. Have you seen this new product: Apollo Neuro? A wearable device that may be calming to the nervous system.

  6. Melanie C says:

    For an adult with TS is verbally acting out made up scenarios and also using echolalia in these scenarios traditionally a symptom of TS? I hear my adult son with TS doing this in his room(with the door closed)all the time.Has no ID,autism,mental illness.

  7. NS says:

    For a new onset tic on a 9 year old boy, with no other medical comorbidities is it worth to start any treatment? I just can’t sit and wait if his tic will go away on its own. Thanks

  8. Eric K says:

    Any success with Abilify and is it different from risperidone?

  9. Elaine V says:

    What have been the most beneficial medications for tics? My son just started Intuniv and I haven’t noticed a major change yet, he has been on it for3 weeks.