Transcription:
Demystifying Tourette Syndrome: What Parents Need to Know

Bill Klaproth: So, what is Tourette's syndrome? What are the signs and how is it treated? And why do some kids get it and others don't? Well, let's find out what Dr. Robin Jack, pediatric neurologist at Le Bonheur Children's Hospital.

This is the Peds Pod by Le Bonheur Children's Hospital. I'm Bill Klaproth. Dr. Jack, thank you so much for your time. Great to talk with you on such an interesting topic. So let's start here. Can you explain to us what is Tourette's syndrome?

Dr. Robin Jack: Tourette's syndrome is a neurobiological disorder that is presumed to be genetic, which means it runs in families. And it is a disorder in which children have repetitive involuntary movements and also make involuntary noises. And with Tourette's syndrome, the diagnosis requires that those movements or noises are present for more than one year and they could occur intermittently over that year, but they have to be pretty persistent over a one-year period of time.

Bill Klaproth: Okay. So those are kind of the symptoms that you talked about, right? The vocal noises, involuntary movements, those types of things. And we're looking for those that continue for more than a year. Is that correct?

Dr. Robin Jack: That's correct. And for Tourette's syndrome diagnosis to be made, the child will have to have both vocal and motor tics. So the technical diagnosis of Tourette's syndrome is multiple motor and at least one vocal tic present for more than one year. Children may have just motor tics that are present for more than a year. And then that is called chronic motor tic disorder or they may have just vocal tics that are present for more than one year. And that's called chronic vocal tic disorder. And kids who have tic disorders, whether it's Tourette's with both the motor and the vocal or just motor or just vocal may also have other conditions that go along with their tic disorder such as ADHD, hyperactivity, anxiety, obsessive compulsive tendencies, learning problems and even sleep disorders.

Bill Klaproth: So when it comes to Tourette's, you have to unwind this then and go, "Okay, this is ADHD," or "This child has anxiety," or "This truly is Tourette's." So you really need to get in there for the diagnosis and really understand what this is because these other symptoms present in things like ADHD and people with anxiety. Is that correct?

Dr. Robin Jack: Well, I would look at it more this way, you know, ADHD, anxiety, learning problems are very common in childhood. Most of the children don't have associated tic disorders. But children with tic disorders, in addition to their tics, do have a high probability, a high chance of having associated symptoms such as ADHD, obsessive compulsive and anxiety. The diagnosis is a clinical diagnosis. So when a child comes to see me in the office, generally they're referred by their pediatrician because of the tics, the abnormal movements. And then when I'm discussing the tics, I also ask do they have any other symptoms that are bothersome to them or have been identified such as, do they have a diagnosis or symptoms that would suggest that they're hyperactive or inattentive like ADHD? Do they have obsessive compulsive tendencies? Do they stack up their toys? Do they line up their toys? Do they get easily upset if their routine is disrupted? And those are called comorbid conditions. So we ask for symptoms that go along with that.

And if you look at children who have tic disorders, and it is a spectrum from what we call transient or provisional tics, depending on what you read, people will say up to 30% of children in any given classroom may demonstrate tics like eye blinking is the most common, repetitive eye blinking, or wrinkling of the nose, we call that facial grimacing. They may demonstrate those tics over a few months and they go away and they have no other symptoms. So that's a fairly common kind of developmental-- I look at it as a developmental kind of abnormal movement that some children have that go away. If the tics persist and, like I said, if they persist for more than a year, if they're motor and vocal, then that is the diagnosis of Tourette syndrome.

Bill Klaproth: Right. Okay. So when it comes to Tourette's, that telltale sign is motor and vocal tics.

Dr. Robin Jack: That's correct. Yes.

Bill Klaproth: Okay. So then what should a parent do if they think their child has Tourette's?

Dr. Robin Jack: If they notice that their child's having persistent involuntary movements such as eye blinking, facial grimacing or making noises like sniffing or coughing, the first thing is they should discuss it with their pediatrician. If they're transient and they go away within a few months and they have no other symptoms, they may not necessarily have to do anything. If the tics are persistent, or if they're causing the child problems such as disrupting their ability to function in the classroom or causing them pain, like some tics can be fairly aggressive, like neck-jerking type tics or if they're having vocalizations that are disruptive to their school day, then they could seek a consultation with a pediatric neurologist. And then, like I said, normally, we take an exhaustive history and a physical and neurologic exam and determine what the diagnosis is.

Bill Klaproth: So then once a child is diagnosed with Tourette's syndrome, what are the treatment options?

Dr. Robin Jack: We first rely on education, educating the parents, educating the child him or herself and educating the schools that unless the tics are significant or interfering in some way with the child's life, we try to avoid medications, for example, for that. And a lot of times with some classroom accommodation and understanding of what's going on, we can avoid medication.

If the tics are severe or disruptive to the child in any way, then there are various medication options that we can try. And of course, medications all come with potential side effects. And so we try to pick the medications that we think would work the best for that particular child with the fewest side effects.

And also there are behavioral therapies. And there's a specific type of behavioral therapy that is a therapy that was developed with a group of neurologists and psychologists, it's called comprehensive behavioral intervention for tics. And it's a specific type of behavior therapy that uses habit reversal training, as well as other counseling and symptom recognition treatments to help the child learn in certain situations how to manage their tics with these psychological techniques. And it can be very helpful as well.

Bill Klaproth: So then, Dr. Jack, do kids eventually grow out of this or will they have to manage this their whole life? Tell us about that.

Dr. Robin Jack: Each child of course is individual. But looking at it as the patients as a whole, most patients probably depending on again what you read, 60 to 75% of people who have tic disorders and Tourette's syndrome specifically, as they get older, the tics will become much less frequent, much less bothersome, and in many cases will completely go away or be so subtle that they're not at all an issue in the person's life. A large majority of people, the tics do get much better. Now, they may continue. If they have the comorbid symptoms, they may continue to have some problems with, for instance, ADHD-type symptoms or obsessive-compulsive tendencies or anxiety. But for the most part, for most people, the tics do get better into early adulthood.

Bill Klaproth: Yeah, that is good news, I'm sure, and comforting for a lot of parents to hear that. Thinking that, "Okay, we can manage this," and then eventually, as you said, 60 to 75% of the people, they will decrease to the point where they may not even be noticeable or go away all together. So that is really good news. What are some of the other strategies to help kids cope with Tourette's?

Dr. Robin Jack: Well, of course, kids, their primary job is school. And a lot of times the stress that comes along with having Tourette's is in the school, in the classroom where the child may have tics to the point that it disrupts their ability to concentrate, or they may become embarrassing because they're disruptive to those around them. And so educating the school and working with the school and school counselors can be of huge help for these kids to make their life a lot less stressful and make their school life a lot more productive and happy. There's a lot of information out there that can be shared with the schools. We do that from my clinic and there's an excellent national organization called the National Tourette's Syndrome Association. It has a great website where parents can get information that they can share with the school and the school can access educational information from that website as well.

Bill Klaproth: I could see where that would be very beneficial, alerting the school so the teachers know what's going on as well. That's really important.

Dr. Robin Jack: Right.

Bill Klaproth: Earlier, Dr. Jack, you said, this generally is hereditary, kind of passed down through families. Is that how most kids get this? Are certain kids at risk for this that may have no family history of this?

Dr. Robin Jack: I would say a small number of kids with absolutely no family history are diagnosed with Tourette's syndrome. But in my experience, I find that if you take a thorough family history, often you will find the genetic tendencies in the family that may not even be known to the family. I even had parents bring their child in and the child's having tics and the parents say, "Well, no one in my family's ever had it," and they're actually having a tic in front of me and just never were aware of it because it was subtle, it's something they did their whole lives. And it is complex genetically to a certain degree because within a family who may have that genetic tendency, you may have a family member, for instance, a cousin, or an aunt or uncle who had obsessive compulsive tendencies. Or you may have one that had ADHD or some that have anxiety. Some that had kind of simple motor tics that went away and then some that had Tourette's syndrome with different comorbidities. So it's variable within the family and often the families are not aware that until they start thinking about their child and asking other family members and then they find out, "Oh yeah, My cousin's child has tics and then my second cousin's daughter has OCD tendencies," and things like that and then it starts to all make sense.

Bill Klaproth: So can we talk about tics just a little bit more before we wrap up? Can some tics be just normal and then just go away on their own? Like don't we all kind of get them now and then? The little like, "Oh God, my eyelid is kind of... Why is my eyelid..." You know? And then a week later it goes away. What is the telltale sign? If it lasts for more than two weeks or a month or six months, or I'm having this thing where my eye is moving for six months...

Dr. Robin Jack: yeah, I think we all get different little movements that we do because we're irritated or have too much caffeine, but really tic disorder is a childhood disorder. So you do see kids who don't go on to have the diagnosis of Tourette's syndrome or chronic motor or vocal tics who do have transient tics. The most common, like I said, is eye blinking, like repetitive eye blinking or eye rolling or maybe making a little squeaking noise. And that may go on for several weeks to several months and just go away and never come back.

And no one really understands completely the pathophysiology or what in the brain circuits really happening to do this. There's theories, of course, but nobody knows. But to me, it's a developmental process that the movement centers of the brain are going through to try to kind of fine tune the motor circuitry and the motor circuitry's interaction with their environment. And so in kids who have persistent tics, for instance, the most simple tic is repetitive eye blinking. Well, if you get something in your eye, like a piece of dust, you're going to blink. It's kind of an automatic response. That blink is you blink because your sensory nerve in your eye picks up an irritant. It sends the signal to the motor part of your brain. And the motor part of your brain sends a signal to blink until the irritant is gone. And then there should be an inhibition or a break on that system that says, "Okay, the irritant's gone. Stop blinking." People who don't have tic disorders then will stop blinking and that's it. People with tic disorders that break doesn't work. And so once they get an irritant, they start blinking, they just keep blinking and blinking and blinking, and then it becomes like an ingrained circuit and it just keeps happening until the next irritant comes, which might be a cough because you have some drainage and then you start coughing and then that becomes like an ingrained circuit. That's the theory of how it happens. But like I said, no one knows for sure exactly how it happens. But to me, that's an explanation that makes a lot of sense.

Bill Klaproth: Right. Okay. So for the sake of this discussion, when it comes to Tourette's syndrome, we're looking for motor and vocal tics that lasts for over a year, right?

Dr. Robin Jack: Yes, sir. That's correct.

Bill Klaproth: Very good. All right. Dr. Jack, this has really been informative. Is there anything else you want to add? Anything you want to cover that we didn't talk about?

Dr. Robin Jack: I don't think so. I think you asked all the most important questions.

Bill Klaproth: Okay, well, that's good. Well, thank you again for your time. I really appreciate it. And this has been very informative. Thank you again.

Dr. Robin Jack: Thank you so much.

Bill Klaproth: And once again, that's Dr. Robin Jack. And to learn more about the Neuroscience Institute at Le Bonheur, please visit lebonheur.org/neuroscience, and be sure to subscribe to the Peds Pod on Apple Podcasts, Google Podcasts, or wherever you listen to your podcasts. You can also check out lebonheur.org/podcast to view our full podcast library. And if you found this podcast helpful, please share it on your social channels.

This is The Peds Pod by Le Bonheur Children's Hospital. Thanks for listening.