Often misunderstood or misdiagnosed, Tourette syndrome and tic disorders have high rates of co-occurrence with diagnosis of ADHD, anxiety, sensory integration disorders, and obsessive compulsive behavior with more than 80 percent of patients being diagnosed before the age of 10.
Listen in as Dr. Coffman discusses how he guides practitioners in recognizing Tic Disorders and Tourette Syndrome, presenting services and features available at The Tourette Association of America Children’s Mercy Center of Excellence – the nation’s ONLY Tourette Association Center of Excellence devoted exclusively to pediatrics.
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Recognizing Tic Disorders and Tourette Syndrome
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Learn more about Keith A. Coffman, MD
Keith A. Coffman, MD
Keith A. Coffman, MD, is Clinical Director of Neurology; Co-Director of Tourette Syndrome Center of Excellence; Director, Movement Disorders Clinic; Associate Program Director, Child Neurology Residency Program; and Professor of Pediatrics, University of Missouri-Kansas City School of Medicine. Dr. Coffman earned his medical degree from Pennsylvania State University College of Medicine, and completed an internship and residencies in Pediatrics and Neurology at Children's Hospital of Pittsburgh. He also completed a fellowship in Child Neurology at the University of Pittsburgh School of Medicine, and has certifications in Neurodevelopmental Disabilities, Neurology with Special Qualifications in Child Neurology, and Pediatrics.Learn more about Keith A. Coffman, MD
Transcription:
Recognizing Tic Disorders and Tourette Syndrome
Dr. Michael Smith (Host): Our topic today is recognizing tic disorders and Tourette Syndrome. My guest is Dr. Keith Coffman. Dr. Coffman is Clinical Director of Neurology and Co-Director of the Tourette Syndrome Center of Excellence at Children’s Mercy. Dr. Coffman, welcome to the show.
Dr. Keith Coffman (Guest): Thank you and good morning.
Dr. Smith: Why are Tourette Syndrome and tic disorders so often misunderstood and even misdiagnosed?
Dr. Coffman: So, the main reason that this group of conditions is under-recognized and under-diagnosed is the public perception of these disorders is typically very inaccurate. It’s been portrayed for many years as a condition where patients have uncontrollable utterances that are socially unacceptable and that actually is a very small minority of those patients who have Tourette Syndrome and things related to it. Most patients who have Tourette have something as simple as an uncontrollable sniffing or throat-clearing or humming that, until it rises to the level of where it’s frequent and noticeable across situations, most people simply ignore it.
Dr. Smith: I guess maybe Hollywood’s a little to blame for that because every time you see a Tourette’s patient on a film or a TV show, it’s the inappropriate cursing and that kind of stuff and that definitely doesn’t help out, does it?
Dr. Coffman: No and that’s part of why there are many patients and families who don’t even have a diagnosis. When we have that first conversation with them, they look at us very often confused as their perception has been shaped by the media.
Dr. Smith: So, what guidance, then, can you offer our listeners today in recognizing Tourette and tic disorders?
Dr. Coffman: A tic is an involuntary movement or sound that is recurrent and stereotyped. So, it either looks the same or sounds the same every time that a child or a teenager does it. It’s something, also, that when you ask a patient about it, he or she may not even be aware that they’re doing it. So, if you say, “Why are you making that sound?” or “Why are you doing that movement?” he or she may say to you, “What are you talking about? I don’t realize I’m doing anything.” And, the other thing that some patients will say is when they’re asked about it, the child will say, “I can’t stop it.” It’s those kinds of questions, that if a parent or a family member hears or sees their child doing something that is going over and over and when asked about it, they’re either unaware or say, “Well, I’ve tried and they can’t stop it,” that’s their clue that that’s really a tic.
Dr. Smith: So, tell us then about the Tourette Syndrome Center of Excellence at Children’s Mercy.
Dr. Coffman: Our center is one of nine nationally recognized centers in the United States for care and treatment of patients with Tourette Syndrome and related disorders. Our center has a child psychiatrist, Dr. Bob Batterson; a child neurologist—myself; two child neurology nurse practitioners; a neuropsychologist; nursing staff, a nurse coordinator; and a family therapist. So, a true comprehensive center for all aspects of need.
Dr. Smith: I’m going to back up for a second to the way we’re under-diagnosing Tourette Syndrome and tic disorders. If we were to not do that, recognize them more in our everyday practice, what do you think the prevalence of, say, Tourette Syndrome actually is, then?
Dr. Coffman: The prevalence around the US and, really, worldwide is around 1% of the population. So, about one in one hundred of the people has Tourette Syndrome or chronic tic disorder. If you think about that perspective, that’s about the same frequency as epilepsy but, in terms of the public knowledge about epilepsy, it far exceeds the public knowledge about Tourette.
Dr. Smith: When you look into the research that’s going on into the ideology of, say, Tourette Syndrome specifically, is there anything new on the horizon that has you excited? That you think could even be a breakthrough?
Dr. Coffman: So, the ideology question has proven to be much more difficult than expected. There have been numerous studies looking at the genetics because we know that Tourette can run in families and the things that go along with Tourette--anxiety disorder, obsessive/compulsive disorder, attention deficit hyperactivity disorder--also cluster within families. Yet, the search for the gene to cause Tourette Syndrome or the location within our genetics to cause it has, at this point, not yielded anything. What is most likely the situation is there are tendencies toward development of Tourette and things related to it that cluster in families--that it takes a certain combination of the right genetics to make a patient show up with Tourette versus obsessive/compulsive versus ADHD. I think some of the biggest research in terms of breakthrough has been looking at the network. So, Tourette Syndrome very much is a difference in the brain’s network of functioning, which is why you get all of these other symptoms along with the tics and looking at patients who are awake and behaving in an MRI scanner and looking at the way that their brain network is activated versus those who don’t have this family of conditions has given a great deal of clue in terms of, this truly is a network difference in function and we have to think about it at the whole brain/whole person level as opposed to just the tics or just the anxiety.
Dr. Smith: So, Children’s Mercy has many multi-disciplinary clinics. I know many of them are models for many other pediatric centers throughout the country. Tell us, or maybe walk us through, what a typical visit is for a patient and the family at the Tourette Syndrome Center of Excellence Children’s Mercy.
Dr. Coffman: Sure. So, I’ll back it up even further. The key thing that makes our center so successful is that we have a very clear intake process where Sandy Price, our nurse coordinator for the center, does a phone interview with the patient’s family before they get scheduled for the appointment. When she meets with them on the phone, she goes through all the child’s symptoms and all the other things that’s going on with the child and says, “Based on what I’m hearing, this is the right first provider within our center for you to see.” And, sometimes that’s myself; sometimes that’s one of our two nurse practitioners, Jamie Kagarice and Laura Banning; sometimes it’s Dr. Batterson; and, in some cases, it actually is Dr. Batterson and myself. Now, what we do there is that the child and their family spend a joint appointment with both neurology and psychiatry and take a team-based approach from the beginning on helping that situation. After the child’s first appointment, it’s then decided what else they might need. Do they need to see our nurse psychologist because they’ve got issues involving school function or cognitive function? Are we in a situation where the Tourette Syndrome and the things related to it are causing enough impact on the home environment that we need family therapy? Or, is it that we need some occupational therapy for some coordination or sensory issues? Or, is the patient a prime candidate for what’s called “CVIT therapy”? CVIT therapy is a technique that’s been proven to help reduce and eliminate tics without medication at all and it feeds on that sometimes urge that patients who have Tourette Syndrome have, where they can tell the tic is going to happen and when they feel that urge to do the tic, similar to the feeling you get before you have to sneeze, that you activate the muscles involved in the tic but make them move in a way opposite you would for the tic to control the tic and truly eliminate it.
Dr. Smith: That’s very interesting. So, what’s the success of that therapy?
Dr. Coffman: So, the success of CVIT is as successful as any medication that’s ever been studied. And that, in terms of treatment, was one of the most groundbreaking studies in the last ten years.
Dr. Smith: That’s amazing. So, that is kind of maybe where you start. The patient comes in, gets to the right first practitioner and then, from there, it’s that team approach that looks at what’s best for that patient and the family. So, I love that multi-disciplinary approach right off the beginning. I think that’s why Children’s Mercy often is so successful. Dr. Coffman, I want to thank you for the work that you’re doing and for coming on this show. You’re listening to Transformational Pediatrics with Children’s Mercy Kansas City. For more information, you can go to ChildrensMercy.org. That’s ChildrensMercy.org. I’m Dr. Mike Smith. Thanks for listening.
Recognizing Tic Disorders and Tourette Syndrome
Dr. Michael Smith (Host): Our topic today is recognizing tic disorders and Tourette Syndrome. My guest is Dr. Keith Coffman. Dr. Coffman is Clinical Director of Neurology and Co-Director of the Tourette Syndrome Center of Excellence at Children’s Mercy. Dr. Coffman, welcome to the show.
Dr. Keith Coffman (Guest): Thank you and good morning.
Dr. Smith: Why are Tourette Syndrome and tic disorders so often misunderstood and even misdiagnosed?
Dr. Coffman: So, the main reason that this group of conditions is under-recognized and under-diagnosed is the public perception of these disorders is typically very inaccurate. It’s been portrayed for many years as a condition where patients have uncontrollable utterances that are socially unacceptable and that actually is a very small minority of those patients who have Tourette Syndrome and things related to it. Most patients who have Tourette have something as simple as an uncontrollable sniffing or throat-clearing or humming that, until it rises to the level of where it’s frequent and noticeable across situations, most people simply ignore it.
Dr. Smith: I guess maybe Hollywood’s a little to blame for that because every time you see a Tourette’s patient on a film or a TV show, it’s the inappropriate cursing and that kind of stuff and that definitely doesn’t help out, does it?
Dr. Coffman: No and that’s part of why there are many patients and families who don’t even have a diagnosis. When we have that first conversation with them, they look at us very often confused as their perception has been shaped by the media.
Dr. Smith: So, what guidance, then, can you offer our listeners today in recognizing Tourette and tic disorders?
Dr. Coffman: A tic is an involuntary movement or sound that is recurrent and stereotyped. So, it either looks the same or sounds the same every time that a child or a teenager does it. It’s something, also, that when you ask a patient about it, he or she may not even be aware that they’re doing it. So, if you say, “Why are you making that sound?” or “Why are you doing that movement?” he or she may say to you, “What are you talking about? I don’t realize I’m doing anything.” And, the other thing that some patients will say is when they’re asked about it, the child will say, “I can’t stop it.” It’s those kinds of questions, that if a parent or a family member hears or sees their child doing something that is going over and over and when asked about it, they’re either unaware or say, “Well, I’ve tried and they can’t stop it,” that’s their clue that that’s really a tic.
Dr. Smith: So, tell us then about the Tourette Syndrome Center of Excellence at Children’s Mercy.
Dr. Coffman: Our center is one of nine nationally recognized centers in the United States for care and treatment of patients with Tourette Syndrome and related disorders. Our center has a child psychiatrist, Dr. Bob Batterson; a child neurologist—myself; two child neurology nurse practitioners; a neuropsychologist; nursing staff, a nurse coordinator; and a family therapist. So, a true comprehensive center for all aspects of need.
Dr. Smith: I’m going to back up for a second to the way we’re under-diagnosing Tourette Syndrome and tic disorders. If we were to not do that, recognize them more in our everyday practice, what do you think the prevalence of, say, Tourette Syndrome actually is, then?
Dr. Coffman: The prevalence around the US and, really, worldwide is around 1% of the population. So, about one in one hundred of the people has Tourette Syndrome or chronic tic disorder. If you think about that perspective, that’s about the same frequency as epilepsy but, in terms of the public knowledge about epilepsy, it far exceeds the public knowledge about Tourette.
Dr. Smith: When you look into the research that’s going on into the ideology of, say, Tourette Syndrome specifically, is there anything new on the horizon that has you excited? That you think could even be a breakthrough?
Dr. Coffman: So, the ideology question has proven to be much more difficult than expected. There have been numerous studies looking at the genetics because we know that Tourette can run in families and the things that go along with Tourette--anxiety disorder, obsessive/compulsive disorder, attention deficit hyperactivity disorder--also cluster within families. Yet, the search for the gene to cause Tourette Syndrome or the location within our genetics to cause it has, at this point, not yielded anything. What is most likely the situation is there are tendencies toward development of Tourette and things related to it that cluster in families--that it takes a certain combination of the right genetics to make a patient show up with Tourette versus obsessive/compulsive versus ADHD. I think some of the biggest research in terms of breakthrough has been looking at the network. So, Tourette Syndrome very much is a difference in the brain’s network of functioning, which is why you get all of these other symptoms along with the tics and looking at patients who are awake and behaving in an MRI scanner and looking at the way that their brain network is activated versus those who don’t have this family of conditions has given a great deal of clue in terms of, this truly is a network difference in function and we have to think about it at the whole brain/whole person level as opposed to just the tics or just the anxiety.
Dr. Smith: So, Children’s Mercy has many multi-disciplinary clinics. I know many of them are models for many other pediatric centers throughout the country. Tell us, or maybe walk us through, what a typical visit is for a patient and the family at the Tourette Syndrome Center of Excellence Children’s Mercy.
Dr. Coffman: Sure. So, I’ll back it up even further. The key thing that makes our center so successful is that we have a very clear intake process where Sandy Price, our nurse coordinator for the center, does a phone interview with the patient’s family before they get scheduled for the appointment. When she meets with them on the phone, she goes through all the child’s symptoms and all the other things that’s going on with the child and says, “Based on what I’m hearing, this is the right first provider within our center for you to see.” And, sometimes that’s myself; sometimes that’s one of our two nurse practitioners, Jamie Kagarice and Laura Banning; sometimes it’s Dr. Batterson; and, in some cases, it actually is Dr. Batterson and myself. Now, what we do there is that the child and their family spend a joint appointment with both neurology and psychiatry and take a team-based approach from the beginning on helping that situation. After the child’s first appointment, it’s then decided what else they might need. Do they need to see our nurse psychologist because they’ve got issues involving school function or cognitive function? Are we in a situation where the Tourette Syndrome and the things related to it are causing enough impact on the home environment that we need family therapy? Or, is it that we need some occupational therapy for some coordination or sensory issues? Or, is the patient a prime candidate for what’s called “CVIT therapy”? CVIT therapy is a technique that’s been proven to help reduce and eliminate tics without medication at all and it feeds on that sometimes urge that patients who have Tourette Syndrome have, where they can tell the tic is going to happen and when they feel that urge to do the tic, similar to the feeling you get before you have to sneeze, that you activate the muscles involved in the tic but make them move in a way opposite you would for the tic to control the tic and truly eliminate it.
Dr. Smith: That’s very interesting. So, what’s the success of that therapy?
Dr. Coffman: So, the success of CVIT is as successful as any medication that’s ever been studied. And that, in terms of treatment, was one of the most groundbreaking studies in the last ten years.
Dr. Smith: That’s amazing. So, that is kind of maybe where you start. The patient comes in, gets to the right first practitioner and then, from there, it’s that team approach that looks at what’s best for that patient and the family. So, I love that multi-disciplinary approach right off the beginning. I think that’s why Children’s Mercy often is so successful. Dr. Coffman, I want to thank you for the work that you’re doing and for coming on this show. You’re listening to Transformational Pediatrics with Children’s Mercy Kansas City. For more information, you can go to ChildrensMercy.org. That’s ChildrensMercy.org. I’m Dr. Mike Smith. Thanks for listening.