What Makes Us Tic? Understanding and Treating Movement Disorders in Childhood

August 25, 2023

Transcript

Dr. Angela Kade Goepferd: This is Talking Pediatrics, a clinical podcast by Children’s Minnesota, home to the kid experts where the complex is our every day. Each week we bring you intriguing stories and relevant pediatric health care information as we partner with you in the care of your patients. Our guests, data, ideas and practical tips will surprise, challenge, and perhaps change how you care for kids.

Welcome to Talking Pediatrics. I’m your host Dr. Angela Kade Goepferd. It is estimated that as many as 1.4 million people in the U.S. have tic disorders, which includes close to half a million children. Tic disorders commonly present in childhood and can have impacts on school, mental health, social skills, self-esteem, and even measured levels of parenting stress and frustration.

Joining us today to learn more about tic disorders is Dr. Mered Parnes, director of Pediatric Movement Disorders Clinic, and assistant professor in child neurology at Texas Children’s Hospital at Baylor College of Medicine in Houston, Texas. Welcome to Talking Pediatrics, and thanks for joining us today.

Dr. Mered Parnes: Thanks for having me, Angela.

Dr. Angela Kade Goepferd: Well, I’m really excited to talk about TIC disorders today, but first I’d just love to introduce you a little bit more to our listeners. And I’d love to hear more about how you became passionate about pediatric movement disorders, and why this is an area of focus for you.

Dr. Mered Parnes: I’m a child neurologist by training first and foremost, originally. And while I was training in child neurology, I got to spend some time with my predecessor in my current role, Amber Stoko. And I just really noticed that I enjoyed seeing patients with movement disorders, and interacting with them, and figuring out the puzzle by exam and history, and getting about the business of trying to make people be better. And I just kind of fell in love with this field.

Dr. Angela Kade Goepferd: From the introduction, there’s certainly a lot of kids that could benefit from intervention for movement disorders. So I think it’s wonderful to have folks like you that are really passionate about helping kids and families with that.

Dr. Mered Parnes: One of the things that I like a lot about it is that it’s kind of an old school physical exam-based field. It has a lot to do with what we have been able to train our eyeballs to recognize, what patterns we can recognize, and I think there’s a real appeal to that. We meet these patients, we hear the story, and then there’s some software in our brain that hopefully is working to recognize these patterns of movements that we’re seeing. And then based on that, all the ancillary studies, if we need any, and all the treatment rests on that. So it’s cool, fun kind of field.

Dr. Angela Kade Goepferd: So let’s start with some of the basics. How would we define a tic or a tic disorder?

Dr. Mered Parnes: Yeah, tics are brief, patterned, repetitive purposeless movements and sounds. They are unwanted, and many people describe an uncomfortable sensation that they need to occur in response to an uncomfortable feeling that we call premonitory urge. And we call the movements motor tics, and the sounds we call vocal tics or phonic tics.

Dr. Angela Kade Goepferd: How would you differentiate diagnosing someone with a tic disorder versus Tourette’s, what are the criteria for that diagnosis?

Dr. Mered Parnes: Yeah, I think this is a big, can be a source of confusion and cause the word Tourette … The words Tourettes Syndrome can cause a lot of anxiety for caregivers. I’m glad you asked, because it’s one of the things that I really try and straighten out in the initial visit, and make clear, and try and dial down if there is some associated anxiety that caregivers may have.

So tics are the symptom and then we call the clinical syndrome Tourette, or in some cases other things, based on certain criteria. So if someone has had tics for at least 12 months, and they have at least two movements and at least one sound, and it doesn’t have to be consistently for 12 months, but just 12 months since the very, very first one, and it started younger than age 18, then we call that Tourette Syndrome.

I think the way that we slice up these tic disorders into different boxes right now is a little bit counterintuitive and I kind of hope that maybe one day we do it differently. Because I think that almost everyone would agree that these tics are the same in these different disorders.

For example, if someone were only to have movements and they never have any sounds, then we call it Persistent Motor Tic Disorder. But in every other way it’s the same. Or you could have Persistent Phonic Tic Disorder. And if it’s less than 12 months, then that’s in a different category as well. Then we call that provisional tic disorder.

Dr. Angela Kade Goepferd: And it would seem to me that one reason, if any, to sort of create different classifications when it comes to diagnosis would be if the intervention or treatment were different based on the diagnosis. Or the reason for it coming into being was different.

And we can talk a little bit more later in the podcast about different treatments. But just sort of quickly from your perspective, does it matter what particular diagnosis someone has in terms of how you would approach them for intervention?

Dr. Mered Parnes: In a counterintuitive way, it doesn’t matter. I think tics are tics. They respond to medications similarly, they behave similarly. They wax and wane over time. They often improve in adult years. They may be at their worst between around 9, 10, 11, 12 for a lot of people. Not for everyone.

Dr. Angela Kade Goepferd: One other sort of classification question. I’ve heard people describe simple tics versus complex tics. And of course my pediatrician brain makes it sound like simple is somehow less severe, and complex is somehow more severe. But could you differentiate those terms for us and what those mean?

Dr. Mered Parnes: I tend not to focus on it a whole lot, but simple tics are what we would think of as less-complex movements, like simple tics that are sounds like sniffing, grunting, throat-clearing. And common simple motor tics are things like excessive blinking or forceful blinking, eye rolling that we call oculogyric movements, facial grimacing, maybe a single neck roll, or neck flexion, or other quick neck movement that’s in one direction. Things like that we would call simple.

And then those tend to occur in the head and neck for a lot of people, and we say there’s a rostrocaudal gradient. Some people may develop more distal movements, and potentially more complex movements too. So maybe multiple movements at once, or complex vocal utterances, or things like that.

Dr. Angela Kade Goepferd: One thing I’ve seen in practice, and I wonder if we could talk about this a little bit, is other conditions associated with tics. So anxiety is a big one that comes to mind. Are there other disorders that are commonly associated with tics?

Dr. Mered Parnes: Yeah, we routinely screen for ADHD and for OCD or obsessive compulsive behaviors, which are pretty common. About half of folks with tics, based on what study you look at, have OCD or have ADHD. And about 30 or so percent may have both.

Dr. Angela Kade Goepferd: Speaking of screening and recognizing tics, is being diagnosed with having a tic or a tic disorder, something that can happen in the pediatrician’s office? Or is that something that needs a referral to neurology for more diagnosis and evaluation?

Dr. Mered Parnes: Certainly it’s a diagnosis that can be made. I think that there are some things that sometimes can be confounders. In particular, there’s another type of movement called a stereotypy. So tics are these brief, repetitive, patterned movements or sounds. They last about a second or so at a time. And sometimes people need to do it two or three times in a row. But they’re not prolonged rhythmic kinds of events.

If you think about the movement that most of us make with our leg when we’re sitting and trying to pay attention, human beings, we tend to like these rhythmic, repetitive, prolonged kinds of runs of movements, and that’s called the stereotypy.

And we talk about that very often in the autism population, where caregivers often call that stimming. Stimming is a synonym for stereo. They tend to be longer and they tend to have a rhythm. Sometimes people will look at that and say, well, that looks like a tic. But I think the thing to remember is that tics are brief and they last about a second each.

Dr. Angela Kade Goepferd: So if I see a kid and I diagnose them with having a tic disorder, I’m then thinking, what next? So I do want to get into talking about some different treatments, but I first want to ask the question, do we need to treat tics? Is this something kids will outgrow? Is it going to get worse with time if we don’t do anything?

Dr. Mered Parnes: The first time I meet someone who has tics, I want caregivers and folks affected by tics to know that this is A-okay. And some people have brown eyes, and some people have blue eyes, and some people have tics.
So what I want to know, first and foremost, when I meet someone who has tics is, do any of these things bother you? And they might say, “Huh? What are you talking about?”

Or they might say, “Yeah, it’s really annoying. Sometimes my eyelids hurt, and when my teacher is at the board, sometimes I can’t really see very well.” Or, “These neck movements that I have, they make me roll my neck, and I’m reading. And I keep losing my place, and I’m running out of time on my tests.”

And kids, even four year old kids can say, “I don’t like these. I wish they weren’t here.” And that’s my metric, either it’s bugging the kid and in that case we treat these things. Or they don’t care about them, I don’t care about them.

Dr. Angela Kade Goepferd: So let’s talk about different treatments for tic disorders. So let’s start with medications. Are there medications that are helpful for a tic disorder?

Dr. Mered Parnes: The most effective treatments overall for bothersome tics are oral medications. There’s a behavioral therapy as well called CBIT, Comprehensive Behavioral Intervention for Tics, that for some people can be helpful and is often worth trying. If we take everything into account, probably the most effective medications for tics are things that affect dopamine hitting the dopamine receptors.

So those are dopamine receptor blocking medications, fluphenazine and risperidone tend to be very effective and generally speaking are well-tolerated. The other class of medications that we have right now is called VMAT two inhibitors, and those decrease the release of dopamine so that fewer molecules of dopamine hit dopamine receptors, the D2 receptor in particular, and make tics be less that way.

There are some other medications I’ll mention as well that also sometimes can be helpful, including alpha two agonists, clonidine and guanfacine. People use them often. I find them to be particularly sedating, and not always as powerful as I need them to be in terms of improving control of tics.

And another one that we use is topiramate, which is an anti-seizure medicine, and there’s some evidence that can be helpful against tics as well. We also have been using botulinum toxin injections to reduce tics, and we have made some headway in our clinic. In a lot of patients we can reduce some bothersome tics, particularly tics of the neck. Because those muscles tend to be commonly involved, and not difficult to get at, and perhaps simple enough in the movements that they generate.

Dr. Angela Kade Goepferd: One thing that I commonly see on a medication list of kids with tic disorders are SSRIs, because often they’ve been diagnosed with anxiety and have those. Do those medications help tics, make tics worse, don’t do anything for tics?

Dr. Mered Parnes: There are people who have tics and OCD. And sometimes the OCD acts as a driver for the frequency of tics. For example, someone has to do everything in sets of three. And the tics have to occur in sets of three. To get that urge to go away and to have it feel just right, it has to be done three times, or five times or whatever.

And so in those cases, we do think about using SSRIs or similar medications that are efficacious in treating OCD in particular. Don’t be afraid to treat ADHD the same way that you would treat ADHD otherwise. If you were going to use a stimulant medicine to treat ADHD in someone irrespective of their tics, I would say go ahead and do it. And be aware that tics wax and wane and change over time, and that’s their nature.

I have seen this approach where, because tics very commonly, it’s their nature to worsen in the setting of feeling stress, sometimes people will try and treat stress anxiety with SSRIs or those kinds of medicines. And I think in those situations it’s less helpful.

I think we’re always going to have stress in our lives, and tics don’t only happen when we’re stressed. They happen just because. They’re going to fluctuate, they wax and wane and change over time. And that’s just what they do because that’s their nature, and that’s going to continue to happen. So I think if it’s a tic problem and really not an anxiety problem or an OCD driving tics, then I’d say if it’s a tic problem, we treat it with tic medicine.

Dr. Angela Kade Goepferd: One of the things I wanted to be sure to ask you about, because I think those of us who are in primary care practice may have a couple of kids with tics or tic disorders, but you see kids with tic disorders all the time. I wanted to ask about what life is like for kids with tic disorders.

Because as I was preparing for this podcast, I was reading how kids with tic disorders are more likely to have educational plans in schools. They have challenges socially, they’re more likely to be bullied than other kids. So I just wonder if you could tell us what it’s like as best you can to be a kid who has a tic disorder, and how we can support kids who experience tics.

Dr. Mered Parnes: People seem to have different levels of self-consciousness or attention towards those things. I’ll meet kids who are very confident and have an optimal view of their tics. When somebody says, “What are you doing with your eyes?” At school, I want them to say, “Oh, that’s a tic.” That’s a tic. Do you know about tic? Do you not know? Don’t you know what tics are?

Dr. Angela Kade Goepferd: Haven’t you ever seen a tic before? What’s wrong with you?

Dr. Mered Parnes: Yeah, what’s the matter with you? Exactly. I kind of want it to be like that. I want them to feel empowered, and own it, and not necessarily make a mountain out of it.

There are many, many people even who meet criteria for the diagnosis of Tourette Syndrome who have tics that are so mild that people don’t really notice. I encourage people to ask children who have tics how it is for them. Because I think that’s where a lot of my perspective has come from, and it’s driven a lot of my management choices.

Dr. Angela Kade Goepferd: And a follow-up question to that, the other thing I was reading about when I was studying up for this podcast, is impact on parents. And that parents of kids who have tic disorders have higher levels of stress and frustration. And I get the sense that this bothers parents a lot. And so I’d love also to hear from you some tips for us to help support parents, or help parents sort of live with their child who has tics.

Dr. Mered Parnes: The main ways that I try and do what you’re talking about is to, number one, deflate this giant monster that is Tourette Syndrome as an entity. Oh, my kid has tics. Does that mean Tourette Syndrome? And also what’s Tourette Syndrome? And does that mean he’s going to be screaming, and shouting obscenities, and it’s going to be really severe?

So one of the things I am sure to do with initial visits is to dismantle that idea as best I can and also to bring the kid in to the conversation, allow them to be part of the dialogue. I find that the child often can help the parent understand that maybe it’s not that bothersome. Oftentimes we’ll meet parents who may be really frightened that something might be tics. Maybe the kid doesn’t even notice yet that they’re sniffing and blinking.

And they’re saying, “Well, can we start medicine now? Because he’s in second grade and I’m afraid that he’s going to be bullied.” No one has noticed yet, but we ought to treat them now.

I think just to take as much of the power out of that as possible is really helpful. And just to try and get everybody on the same page in terms of, look, this is something that he or she has. And will have, probably for a number of years.

Dr. Angela Kade Goepferd: Sometimes I get parents who think that if they point out the tic to their child, or sort of like someone biting their nails or something. If they point it out, the child has some control over their ability to stop doing the tic. Can you definitively let us know if that is possible?

Dr. Mered Parnes: These are involuntary, and that is clear. And I don’t want parents to feel bad about having said things like that in the past, because that happens often. I’ll meet people who they’ll say, “Boy, he just wouldn’t stop making this noise. And we were reprimanding him for the longest time, and now I feel so terrible.” And that happens. Everybody gets it.

Sometimes I’ll actually engage the child and say, “Hey, do you understand that your mom didn’t know that that was one of your tics? You know that, right?” Yeah. “Do you forgive your mom?” Yeah. “Can you give your mom a hug?” Whatever. In the office, sometimes we can just, poof, make that whole thing go away, hopefully.

But yes, these are involuntary. Most people describe that they incur in the setting of this very, very uncomfortable feeling. And kids usually have really interesting descriptions of this feeling, and I am convinced that we don’t really have very good words to describe what this thing feels like. Maybe like an itch that needs to be scratched, or like the feeling before you have to sneeze.

If that sneeze doesn’t come out, you don’t feel good. It’s something like that, something that people have a hard time describing. This thing has to happen, and then once it happens, that feeling, poof, immediately resolves. And that over time, it will slowly build up again.

So people can often hold it in for very short durations of time. People may have less in certain situations than in others. The problem is that it’s uncomfortable. And that biologically it must happen, and it’s going to happen. And usually people say even if they hold it into their best of the ability, eventually it’ll just come out on its own.

Dr. Angela Kade Goepferd: Yeah. Well, thanks again for joining us today. We learned a lot of information about tics, and tic disorders, and how to talk to kids and families and different treatment options. So I really appreciate your time and your expertise.

Dr. Mered Parnes: Thanks, Angela. I really appreciate being invited, and I had a lot of fun.

Dr. Angela Kade Goepferd: Thank you for joining us for Talking Pediatrics. Come back each week for a new episode with our caregivers and experts in pediatric health. Our executive producer and showrunner is Ilze Vogel. Episodes are engineered, produced, and edited by Jake Beaver. Amie Juba is our marketing representative. For more information and additional episodes, visit us at childrensmn.org/talkingpediatrics, and to rate and review our show, please go to childrensmn.org/survey.