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Thread: Comprehensive Course in Tourette Syndrome

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    Post Comprehensive Course in Tourette Syndrome

    Shawn Ewbank, Psy.D., Licensed Psychologist
    August 15, 2013

    NOTE: Due to the length of this comprehensive and thorough tutorial on Tourette Syndrome, I have divided the content over 6 individual posts in this thread for easier reading. For discussions on this course, please post questions and comments...Steve

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    Shawn Ewbank, Psy.D., Licensed Psychologist

    What is Tourette Syndrome?
    Tourette syndrome (TS) is a neurological condition that causes involuntary, purposeless movements and sounds called tics. Tics can occur throughout the body and in endless variety. Tics can simple, such as muscle tensing, eyeblinking, or inaudible movements of air. They can be complex, such as whole body movements or uttering words or phrases. Here is a more extensive list of possible tics. While tics are involuntary (i.e. not controlled by the individual with tics), many individuals can tell that a tic is about to happen because of a quickly building feeling of discomfort, called a premonitory urge that happens before the tic. The awareness of this premonitory urge is useful for the behavioral treatment of tics.

    While many individuals have tics at some point (about 25% of young children), individuals with TS have multiple tics, with tics being there most of the time for at least one year. About 1% of children are thought to have a diagnosis of TS. For individuals with TS or families, here are some useful things to know about what might happen with tics over time.

    In addition to tics, many individuals with Tourette syndrome have other difficulties, called co-morbid disorders. Oftentimes, the co-morbid disorders cause more difficulties than the tics themselves. The two most common co-morbid disorders are attention deficit hyperactivity disorder (ADHD) and obsessive compulsive disorder (OCD). Other frequent co-morbid disorders are anxiety, depression, behavioral problems, rage attacks and trichotillomania (hair pulling). In addition, children and adolescents with TS may have difficulties with peer relationships, social skills, being bullied, and executive functioning. Remember though, not all individuals with tics have these difficulties. Even those with a lot of difficulties can improve dramatically over time.


    My Child has Tics - What do I do?
    Minor tic episodes are a fairly common in young children occurring in about 25% of children at some point in early childhood. When this happens, it is called a transient tic disorder. Tics are usually fairly mild, such as eyeblinking, mouth movements and/or short sounds (squeaks, grunts, puffs of air, etc.). See List of Tics for other common tics. If you are a parent who is concerned about seeing tics in your child, you may consider consulting with your pediatrician. If tics are relatively mild, and have been present for less than a year, a knowledgeable pediatrician is likely to advise you to wait and see what happens because there is a good chance the tics will go away and that no further related difficulties will manifest. If tics are more numerous, complex, or have persisted for over a year, you may consider consulting with a neurologist, who can determine if a diagnosis of Tourette syndrome (TS) is appropriate. Neurologists are well suited to make this diagnosis because they are trained to recognize tics and to rule out other possible explanations for movements and sounds. If a diagnosis of TS is given, a parent can expect that tics will be present, at least some of the time for the remainder of childhood, adolescence, and possibly into adulthood (see What to Expect From Tics Over Time).


    Premonitory Urges
    It is easy to think of Tourette syndrome (TS) as nothing more than the involuntary movements and sounds (see List of Possible Tics) that are the noticeable part of a tic from the perspective of an outside observer. However, before the movement or sound occurs, many individuals experience a premonitory urge. The premonitory urge is a feeling of tension or discomfort that comes before the visible tic. If the tic is delayed, the urge tends to go up, increasing discomfort. Once the tic is performed, the urge goes away either partially or completely. Unfortunately for individuals with TS the urge, along with the discomfort, keeps coming back and the tic is performed again and again (see What it is Like to Have a Tic).

    Premonitory urges are a major factor in a process called reinforcement that makes certain tics habitual. Reinforcement describes the principle where an animal increases any action that immediately increases pleasure or decreases discomfort. For example, if a pigeon is rewarded with food every time it pecks a button, it will quickly learn to peck the button again and again. In the case of tics, humans with TS learn to make a specific movement or sound to relieve the discomfort of the premonitory urge. The more the tic is performed when the urge is present, the stronger the connection between the tic and the urge. The behavioral treatment, Habit Reversal Training (HRT/CBIT) teaches individual to break the connection between the tic and the urge. Certain medications can decrease the premonitory urge and subsequent tic behavior.

    What it is Like to Have a Tic
    For individuals who do not have tics/Tourette syndrome (TS), it can be hard to imagine. Here is an example intended as an approximate comparison to the experience of a tic:

    Picture being in a silent library and developing an urge to cough: you give a little cough and feel better, but ten seconds later the urge returns and you give another little cough. This happens again and again. Worrying about the attention you might be drawing – several fellow readers are glancing in your direction – you attempt to delay the cough. While you delay, the urge increases. It becomes rather difficult to focus on the book you are reading. After delaying the cough as long as seems possible, a series of loud coughs escape. Now, almost everyone in the library seems to be looking up. Ten seconds later, the urge returns. You are now faced with the dilemma of frequently distracting others with soft coughing every ten seconds, occasionally distracting others with periodic loud coughing, or leaving the library. Having tics can be kind of like that.

    List of Possible Tics
    Everyone with Tourette syndrome has a different experience and the list of possible tics would be endless. Here is a list of common and some not-so-common tics divided into motor and vocal categories:

    Motor Tics
    eye movements. Tics that involve movements of the eyeball(s) or eyelids. It is very common for an eye movement tic to be the first or one of the first tics – e.g.:

    Eyeblinking (e.g., multiple quick blinks or a longer hard blink)

    Moving eyes in certain directions (e.g., looking briefly to the left)

    Squinting

    Opening eye wide

    Emotional eye gestures (e.g., surprised, confused, etc)

    facial movements. Tics that involve the nose, mouth, brow and/or cheek muscles – e.g.:

    Eyebrow raise

    Facial grimace (i.e., making a face)

    Wiggling lips back and forth

    simple body-part movements. Tics that occur throughout the body as small movements – e.g.:

    Head shaking

    Shoulder shrugs

    Hand flapping

    Toe wiggling

    muscle tensing. Tics that involve muscle contractions. Many of these tics are not visible to an outside observer – e.g.:

    Stomach

    Thighs

    Hamstring

    Neck

    Buttocks

    complex motor tics. Tics that involve movements of multiple muscle groups, purposeful movements, slow moving tics, and/or multiple basic tics occurring in a chain. These tics take endless possible forms, but here are a few:

    Bending, gyrating or rotating

    Running, sitting or standing

    Dystonic postures – movements that involve slow twisting or squeezing of an area of the body with the end position being temporarily held; usually the end point looks unnatural. A common example is a partial upper torso twist along with a neck twist where the upper body and head are then briefly held in what looks to be an uncomfortable position (which often includes a mask-like facial expression).

    Echopraxia – repeating the gestures of someone else

    Copropraxia – denotes any tic that mirrors an inappropriate gesture – e.g.: putting up ones middle finger

    Self-injurious tics – tics that can lead to direct physical injury (e.g. head banging; sticking objects against the eye). More severe versions of these tics are uncommon, but can sometimes require hospitalization as a means to prevent the tic from occurring. Tics that cause muscle pain through repeated movement do not fall into this category.

    Vocal Tics
    simple vocal/phonic tics. Tics that involve the movement of air and typically result in sound. Sounds made without the movement of air, such as snapping the fingers, still count as motor tics. Here are some examples of simple vocal tics:

    Puffs of air in or out of mouth or nose

    Grunting

    Squeaking

    Coughing

    Animal sounds (e.g., bird chirps, pig grunts, dog barks, etc)

    complex vocal/phonic tics. Tics that involve words or pieces of words – e.g.:

    Syllables

    Words

    Phrases

    Echolalia – repeating someone else's syllables, words or phrases

    Palilalia – repeating ones own syllables, words or phrases

    Coprolalia – tics that mirror inappropriate words (e.g., swear words, ethnic slurs, etc.)

    Blocking – a tic where speaking is disrupted because an individual cannot get the sound out

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    Default Re: Comprehensive Overview Tourette Syndrome

    Shawn Ewbank, Psy.D., Licensed Psychologist
    August 15, 2013


    How to Help My Child Live With Tourette Syndrome
    From first tics, through diagnosis and through adulthood, learning to live with Tourette syndrome is a process that happens over time. With most individuals, tics are first noticed during childhood. Parents and other adults can have a major role in providing a supportive environment that will help a child learn to live with tics. A parent’s ability to adjust to the reality of the diagnosis can be important for the child’s adjustment. The most important thing a parent can do is to focus on the whole child. The emergence of tics has not dramatically changed a child’s personality, skills, joys or interests. Define the child by these core factors. Consider tics as a factor that affects but does not define a child.

    Another component of the adjustment process is self-education. The more you know as a parent, the more you can be helpful to your child (see What Might Happen With Tics Over Time). The initial education process need not be for parents alone, but can involve the whole family, especially the child with tics. Open conversations about tics and the reality of Tourette syndrome is a great way to help everyone in the family to increase acceptance for the challenges that may arise. Children with TS can benefit from being provided with information about tics and TS in age-appropriate ways that are relevant to their symptoms. Beyond general discussions with parents about tics, a child can benefit from TS-focused literature and play. For example, perhaps the child can have a toy or a doll that also has tics; the toy’s tics can be part of parent-influenced pretend play.

    Another potential component of the adjustment process is an advocacy plan that responds to a world that is dangerously misinformed about TS. Painful stigma follows ignorant viewpoints based on television and movies' attempts to be humorous by misrepresenting TS as a disorder that consists only of more extreme (and less common) tics. Parents and individuals with TS can benefit from practiced confidence about how to manage the collision of tics and their social world. They are faced with the task of deciding who to tell, when to tell and what to tell. As a psychologist, I work to support whatever decisions families make on these difficult matters. Within this role, I often encourage that some level of disclosure about tics can be helpful for many reasons. First, I believe that the goal of acceptance of tics can be better achieved through advocacy then through secrecy. Families who raise voices of support for their member with TS, and individuals with TS everywhere, find the diagnosis to be less of a burden and more of a call to action. Second, I think that when the general public is provided with accurate information about tics and TS, they are less likely to make stigmatizing judgments. For example, when a school classroom has been well informed about the realities of their classmate's TS diagnosis, they are less likely to tease or question noticeable tics. Moreover, when tics in the classroom are understood, they will often just fade into the background and become less distracting for everyone. If a child with tics does not have to worry about if classmates are noticing and if so, what are they thinking, he will be better able to stay focused on work and be less concerned about trying to suppress tics. Third, I think that parents who are advocates, educating others about TS early on, are providing a good model for their child to emulate when she is older and can apply her own self-advocacy skills. This can be especially important considering that many children experience an increasing severity of tic symptoms from early childhood throughout early adolescence (see What Might Happen with Tics Over Time).

    A final, important component is support and/or counseling for both parents and individuals with TS. Support can take the form of opening up about the emotional difficulties to family and friends. It can take the form of joining a local chapter of the Tourette Syndrome Association or finding an online support group. For parents, support involves having a place to voice the stressors and frustrations with TS and the challenges that can come with it. If parents can take care of their own emotions, they are in a better place to support the emotional experience of their child. When the available support does not seem like enough for individuals with TS or for their family members, supportive counseling is another option to consider. Even if there is no local expert on TS treatment strategies (e.g. Habit Reversal), it can be helpful to have someone to go to for consistent support.


    What Might Happen with Tics Over Time
    Researchers and doctors refer to this as the course of Tourette syndrome (TS) – i.e., what do tics do at different times throughout a person’s life. The most common course of TS begins with initial tics being noticed at ages 4-6. Sometimes it takes much longer before a TS diagnosis is given or suspected because many parents, and even a lot of doctors, are not experts at recognizing tics. Once they start, tics tend to increase and decrease over time – a phenomenon called “waxing and waning" – with days, weeks or months with lower or higher tics. New tics may emerge and other tics may disappear; sometimes tics vanish forever and sometimes they reemerge at a later point.

    There is some predictability in the amount and severity of tics over time. Early tics are often more mild and can include eyeblinking, small facial movements, puffs of air or little squeaking or humming sounds. Even as tics wax and wane, there is a tendency for tics overall to increase throughout early and middle childhood. As time goes on, tics can become more frequent and more complex (e.g., more involved body movements; a larger repertoire of sounds; see List of Tics for more information). A majority of adults with TS report that their worst tic periods occurred between the ages of 10 and 14 (often 11-12 is the highest peak period). As a child moves through middle and late adolescence, tics will slowly decrease in a lot of individuals – again, waxing and waning throughout. By adulthood, about 1/3 of adults have no noticeable tics, about 1/3 of adults have substantially reduced tics (that are typically quite mild), and about 1/3 of adults continue to have tics in the same waxing and waning fashion.

    Keep in mind that the above-described trend is not a hard-and-fast rule. Everyone is different: There is great variability in the course of TS in different individuals. The severity of tics in early and middle childhood is not considered a good predictor of who might have tics in adulthood; there are no great predictors of this. While many parents find comfort in the hope that tic symptoms will decline in their child, it is best to realize that the future course of an individual with TS is unclear. Learning to live with tics through acceptance, social support and/or supportive counseling, or learning to manage Tourette syndrome with Habit Reversal Therapy or medication is my recommended long-term plan.

    Treatment Options to Decrease Tics/Tourette Syndrome
    The two evidence-based treatment options for tics are medications and Habit Reversal Therapy (HRT/CBIT). A treatment is determined to be "evidence-based" when it demonstrated significantly reduced tics in multiple research studies that met the high standards of the medical and scientific community. Neither medication nor HRT are cures for Tourette syndrome; both treatment options can reduce tics, but do not eliminate them completely. People vary in their response to medication and to behavioral treatment. That said, both treatment options have helped to greatly improve the lives of many individuals by reducing the interference and emotional distress resulting from tics.

    Aside from medications and HRT, there are many purported treatments for Tourette syndrome. These include, dietary changes or supplements, herbal remedies, homeopathy, lifestyle changes, and many others. Unfortunately, there is a lack of scientific evidence for these treatment options. There are, however, plenty of testimonials that will praise various methods to reduce tics. As a psychologist who specializes in tic disorders and their treatment, I am not inclined to give my professional recommendation for these treatments. Knowing that tics have a tendency to increase and decrease over time all on their own (see Tics Over Time) makes it especially challenging to know if a treatment works. Oftentimes, individuals and families try a new treatment approach following a frustrating increase in tics. When tics are at a high point, they are likely to decrease soon. When they do decrease, it is easy to conclude that the treatment worked, even if the tics were just following their natural cycle of waxing and waning. To actually determine if a treatment is successful, rigorous research studies are needed.

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    Default Re: Comprehensive Overview Tourette Syndrome

    Shawn Ewbank, Psy.D., Licensed Psychologist
    August 15, 2013


    Behavioral Treatment – Habit Reversal Therapy (AKA HRT or CBIT) for Tourette Syndrome (TS)
    The behavioral treatment for tics is called Habit Reversal Therapy (HRT). The newest version of HRT is called Comprehensive Behavioral Intervention for Tics (CBIT). The treatment teaches individuals with tics management strategies that can decrease selected tics over time. It can work well in combination with or as an alternative option to medications for tics. Below are the answers to several common questions about this treatment. Also, more information about HRT can be found in my sections on Common Concerns about HRT and on the Environmental Cuing of Tics.

    Who does HRT work for? There is good scientific evidence that HRT works well for children, adolescents and adults with TS. The current published researched focuses on children who are 8 years old or older. However, within my clinic, the TS Program at Rutgers University, we have done some successful slightly modified HRT treatments with children as young as 5. Ideally, the person who has tics gains motivation to practice HRT strategies outside of treatment sessions. As ADHD can result in difficulties with motivation, HRT can be more challenging (but still successful) for individuals with ADHD (or other difficulties that interfere with motivation). In addition, the treatment works best for individuals who are aware of the urges that come before their tics (see section on Premonitory Urges); a big part of treatment will focus on increasing this awareness.

    How does HRT work? HRT teaches three main skills for the management of selected tics. First, Awareness Training helps individuals to consistently recognize cues that a tic is about to happen before it happens. Second, Stimulus Control allows individuals to make changes that can reduce the urge to tic in situations where tics are high. Third, Competing Response Training teaches individuals to replace their tics with incompatible actions that serve as alternatives to tics helping to hold back a tic until the urge to tic decreases. Sounds easy, right? Indeed, learning the basic ideas of HRT is pretty straightforward. Professional expertise is required to navigate all of the unpredictable challenges that arise within most HRT treatments. In an ideal treatment, an individual learns two things: First, they learn specific HRT strategies that reduce current problematic tics. Second, they learn the general ideas for how to apply HRT, becoming experts at managing future tics.

    Addressing Common Concerns about Habit Reversal Therapy (HRT/CBIT)
    Many individuals with Tourette Syndrome (TS) or parents of children with TS have concerns about Habit Reversal Therapy (HRT). Many years back when my clinic, the Tourette Syndrome Program at Rutgers University was entering into communication with the researchers on HRT, we had our doubts as well. Not only have our doubts been put to rest, we are now involved in research on the effectiveness of HRT/CBIT. While no treatment works for everyone – HRT/CBIT for tics included – HRT is helpful in reducing tics for many children and adults. Still, any newly popularized treatment comes with its own set potential downsides. Here is a list of common concerns for HRT:

    Will the efforts to do HRT for tics be too distracting and get in the way of other things? Carrying out HRT strategies certainly takes work; it can at times be distracting, especially right at first. However, as an individual becomes accustomed to using their selected competing response for the target tic, it quickly becomes less and less distracting and becomes more of a habit. Consider a comparison to learning to drive a car. At first every little detail takes a lot of attention and energy. Over time, driving feels natural; little conscious thought is required and attention can be used for other tasks, such as talking to passengers, listening to the radio or looking at the scenery. Similarly, HRT is working well when the competing response is habitual: a natural response to a premonitory urge. When there is a big concern that HRT will be too distracting in certain settings, a skilled clinician will suggest that initial practice periods take place in environments where attention is less of a concern (e.g. during television time instead of during homework time).

    Will the decrease in one tic led to the increase of other tics (or to new tics that replace the old ones)?
    There is no evidence that using HRT for one tic will increase the amount of other tics. Instead, evidence suggests that HRT leads to a decrease in overall tics for most individuals. Of course, over time new tics tend to appear and overall tics tend to increase and decrease. This is the nature of TS (see section on What Might Happen with Tics over Time). In a successful HRT treatment, individuals can learn how to recognize that a new tic is coming on and decide to use HRT for this new tic even without being in treatment.

    Will holding in tics at one time lead to a “rebound effect,” causing a burst of tics at another time? Many parents have noticed predictable times where tics seem to be come out in a burst of tic activity that can be quite disruptive for their child. There are two very common versions of this scenario. One describes a child who has a lot more tics at home compared to other places, (e.g. school). Two describes a phenomenon where the moment child returns from school, there is a burst of tic activity. Parents witnessing this phenomenon might imagine that tics have to come out somewhere and that HRT will simply exacerbate these bursts of tics. As this is a legitimate concern, there is a good deal of research on the matter. Research indicates that inhibiting tics does not lead to rebound effects. HRT does not lead to rebound effects; it appears to lower overall tics, including tics within these periods of bursts. For an explanation of how these predictable tic bursts happen, please see my section on the Environmental Cueing of Tics.

    Won’t the competing response become another tic?
    For a lot of individuals, tics can easily emerge based on a commonly performed motion or sound. A good example of this is when the cough for a cold triggers a coughing tic well beyond the time when residual coughing should have ended. In HRT, competing response training directs an individual to perform an alternative, and usually incompatible action to their tic. For example, an individual with a head-shaking tic might be instructed to lean their head down and tense the muscles in the back of their neck every time they have the urge to head-shake. The concern is that the head-down/neck-tensing movement will become a tic that replaces the head-shaking tic. While this is a legitimate concern, we have never seen it occur in our clinic. The best explanation for why competing responses do not replace tics is that tics serve to relieve an uncomfortable urge (see my section on Premonitory Urges). The relief of discomfort is a powerful reinforcer that helps to maintain the tic over time. Competing responses serve to maintain an uncomfortable urge (that eventually goes away without performing the tic). As there is no reinforcement when a competing response is performed, it does not become habitual and does not become a tic over time.

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    Default Re: Comprehensive Overview Tourette Syndrome

    Shawn Ewbank, Psy.D., Licensed Psychologist
    August 15, 2013


    Medications for Tics and Tourette Syndrome
    There are a number of medications that can be helpful to decrease tic symptoms. If you have decided to give medication a try, I recommend a psychiatrist or neurologist with expertise in tic disorders. Most experts in the area use a similar process in finding the ideal medication(s) to manage tics for a specific individual. As an individual with Tourette syndrome, or a parent making the final decision about medication, it can be useful to know about the different medications and potential side effects (see List of Medications). The two sections below, on deciding whether to use medications and on what to expect from medications, are intended as resources in this decision process. Also, in considering treatment options for tics, I encourage everyone to learn about the behavioral treatment, Habit Reversal Therapy (HRT/CBIT).

    Deciding on Whether to Use Medication For Tics:
    The burden of the final decision about medication is on the parents or individual with tics. As a psychologist, I am often in the role of providing guidance to help people make informed decisions about medication. In this role, I start with the assumption that no one wants to use medication. However, when tics are causing life-disrupting problems and other solutions are not working, medication is a very reasonable option.

    There are two ways that tics cause life-disrupting problems, directly and indirectly. Tics are a direct problem when they interfere with day-to-day tasks, such as tics that disrupt the ability to speak fluently or tics that get in the way of reading or writing. Tics are also a direct problem when they lead to self-harm or pain, such as head butting tics or repeated tics that cause muscle pain by the end of the day (e.g. neck pain from a head-shaking tic). Tics are an indirect problem when they cause emotional distress and/or social difficulties. Emotional distress can include anxiety or depression that results from being self-conscious about tics. Social difficulties can include being teased or bullied about tics, or social rejection due to tics.

    When the disruption from tics is high, it can get in the way of basic life tasks, such as doing well in school or at work, performing day-to-day activities and forming/maintaining relationships. For children and adolescents with tics, these disruptions over time can have negative long-term consequences such as lowering academic achievement or decreasing opportunity for social learning. If the potential advantages from decreases in tics outweigh the potential disadvantages of problematic side effects, then medication becomes a good option. The challenge comes in trying to determine if the advantages seem to outweigh the disadvantages. Education about what to expect from medications can be helpful in making this determination.

    What to Expect From Medications for Tics
    Medications are – unfortunately – not a cure for tic symptoms. However, they can be really helpful to reduce tics. When medication is being used, the goal is to increase an individual’s functioning by reducing the tics as much as possible with as little side effects as possible. On paper, this sounds great. In reality, it can be challenge that takes some trial and error.

    Trying more than one medication before selecting the best one is common because the same medication can work differently for two different people. A medication that reduces tics well with little side effects in one child may have no effect on tics and high side effects in another child. A psychiatrist (or a neurologist) may have to try several different medications before finding one that works best. Usually, a psychiatrist will start with medications tend to have mild side effects. If these do not work well enough, medications that have the potential for more disruptive side effects will be tried next. Unfortunately, the medications with a greater probability of more severe side effects tend to work better to reduce tics. To minimize problems with side effects, psychiatrists usually start with a small dose of a medication and slowly increase the dose over time; reductions in tics and increases in side effects are both monitored. The overall goal is to find a medication that provides the maximum reduction in tics, but keeps side effects low – at times a lengthy process.

    The main two types of medications used for tics are anti-hypertensives and neuroleptics. See List of Specific Medications for more information about these medications and their potential side effects.


    List of Specific Medications for Tics
    Antihypertensives (aka Alpha 2 Agonists) – These medications are used to decrease high blood pressure, but have also been found to result in mild to moderate reductions in tics for some individuals. They have also been found to be mildly effective to reduce ADHD symptoms (especially in combination with a stimulant medication). Here are the two antihypertensives used for tics:

    Guanfacine (brand name = Intuniv/Tenex)
    Clonidine (brand name = Catapres)

    Side Effects: The main two side effects are drowsiness and dizziness. Usually, these side effects decrease within a few weeks of starting the medication. If drowsiness does continue beyond a few weeks, it can get in the way of functioning and may be a reason to try a different medication (especially if there do not seem to be significant reductions in tics). Many psychiatrists/neurologists will use Guanfacine before trying Clonidine because they find less drowsiness with Guanfacine. Also, Guanfacine only needs to be taken 1-2 times per day compared to 3-4 times per day with Clonidine.

    Neuroleptics (AKA Antipsychotics or Dopamine Antagonists) – These medications are used to treat various health and mental-health difficulties, but are most well known for their role in the treatment of Schizophrenia/Psychosis, hence the name antipsychotics. Certain neuroleptics can also be quite effective in the treatment of tic disorders. The drugs work decreasing the brain’s use of a chemical called dopamine, which is used to control body movements. Tics are thought to be caused by an excess amount of dopamine in the areas of the brain that control movements. Decreasing the brains cells’ abilities to pick up dopamine with neuroleptics can decrease tics. There are two types of neuroleptics, typical and atypical. In many ways, these two types of neuroleptics are similar, but there are a few differences. Atypical neuroleptics were developed later than typical neuroleptics. While they have the same side effects, some of the more problematic side effects are different between the two types of neuroleptics. See below for a list of specific side effects following the two lists of different neuroleptics used for tics:

    Typical Neuroleptics

    Haloperidol (brand name = Haldol) – According to research, this is the most effective medication known for tics; studies have suggested an average of a 66% reduction in tics (results vary for different people).
    Pimozide (brand name = Orap)

    There are many other typical Neuroleptics, but these are the main two used for tics.

    Common side effects: dry mouth, drowsiness, tremors, muscle stiffness or cramping, and weight gain (much less weight gain compared to atypical neuroleptics)

    Less common side effects: extrapyramidal symptoms, tardive dyskinesia, and neuroleptic malignant syndrome (all discussed below).

    Extrapyramidal Symptoms (EPS) – this is on the common side effects list for individuals with psychosis. However, neuroleptics for tics are usually given at much lower doses than neuroleptics for psychosis, so this side effect tends to be less common/less severe. EPS are a group of movement symptoms that include:
    Parkinsonism – tremor symptoms and decreased movements with symptoms looking similar to Parkinson’s (symptoms will fade and then disappear if the medication is stopped)
    Akathisia –an internal feeling of uncomfortable restlessness; many individuals with psychosis will stop taking neuroleptics because of this side effect
    Dystonias – a tightening of muscles while twisting the body and briefly freezing in an uncomfortable position (dystonic tics are also a complex motor tic associated with TS; see list of possible tics)
    Acute Dystonic Reaction – severe muscle spasms where it can be difficult to move the neck, face, or other parts of the body

    Tardive Dyskinesia (TD) – repetitive, involuntary, purposeless movements; common TD symptoms are tongue protrusions (sticking out tongue), lip pursing and lip smacking. TD side effects seem quite rare with individuals with tics on typical neuroleptics. Most individuals develop TD only after multiple decades of neuroleptic use and at much higher dose levels than those typically used for individuals with tics. If you suspect TD symptoms are occurring, you should let the prescribing doctor know right away. While the symptoms will usually go away after awhile when the medication is decreased or changed, they can become permanent. Within my TS-specialty clinic at Rutgers, I only know of one case over the past 8 years where TD symptoms appeared in reaction to Orap. I sent the family straight to their psychiatrist, who began tapering off Orap; the TD symptoms disappeared.

    Neuroleptic Malignant Syndrome (NMS) – Very rare side effect that involves a fever, rigid muscles, and changes in mental state (e.g. delirium, disorientation). While this condition is rare, it can be fatal. You should take someone with these symptoms to the emergency room.

    Atypical Neuroleptics

    Risperidone (Risperdal)
    Aripiprazole (Abilify)
    Olanzapine (Zyprexa)
    Ziprasidone (Geodon)
    Quetiapine (Seroquel)

    Side effects: The side effects are the same as for typical neuroleptics, but occur to differing degrees. They also occur to differing degrees within the various atypical neuroleptics, so it is important to learn about the unique side effect profiles for each one. Overall, extrapyramidal symptoms (EPS) tend to be lower with atypical neuroleptics. Since EPS side effects can lead to great discomfort, this is a significant difference. Also, it has been argued that Tardive Dyskinesia is less of a concern with atypical neuroleptics. Unfortunately, weight gain tends to be more severe with atypical neuroleptics. As a recent-occurring shift in medical thinking, many neurologists and psychiatrists now prefer prescribing typical over atypical neuroleptics because weight gain and associated metabolic syndrome cause such severe short and long term health problems.

  5. #5
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    Default Re: Comprehensive Overview Tourette Syndrome

    Environmental Cueing of Tics
    Shawn Ewbank, Psy.D., Licensed Psychologist
    August 15, 2013


    Suppressing Tics and Environmental Cuing of Tics Why tics happen in one location/situation, but not another
    Many individuals with TS give reports that tics are different in different settings: certain tics happen only in certain settings (e.g., at home, but not at school); certain tics are much more intense in certain settings (e.g., a hardly audible squeaking vocal tic that becomes a piercing shout in the privacy of ones bedroom); and certain tics occur at a different rates depending on the setting (e.g., an infrequent eyeblinking tic that happens every couple of seconds in the car). What causes the variance in tics depending on location/situation? A possible explanation is tic suppression: holding back tics in places where ticking could lead to a negative outcome (e.g. ridicule, embarrassment). Unfortunately, suppressing tics can be a distraction that can interfere with other tasks (e.g. schoolwork, socializing, etc). If tic suppression explains low tics in certain settings, performance may be suffering in those settings.

    Indeed, distraction is a common consequence of tics. Tics can cause distractions in school or work settings, such as distraction from suppressing tics, distraction from tic-related task interference (e.g. losing one's place while reading due to eye movement tics; speaking difficulties from sniffing tics, etc.), distractions from anxiety about tics, and distractions from negative social attention following hard-to-disguise tics (e.g. a grunting tic in a quiet classroom or work setting). Any of these distractions can disrupt performance. Having a plan for the management of TS can be important to help minimize the impact of distractions (see section on Learning to Live With Tics).

    Of the many distractions from tics, distraction from tic suppression may be less of a concern. Why is this? Over time, tic urges tend to decrease within any environment/situation where suppressing occurs. Conversely, tics urges tend to increase within any environment/situation where tics are not suppressed (see section on Premonitory Urges for further explanation of tic urges). When a new tic emerges, the inconsistent responding to an urge to tic in different settings (along with an varied presence of an urge in different settings) may predict where a tic will be frequent versus infrequent. For example, a child might have an urge to perform a grunting tic. At school, they worry about what their peers might think and suppress the tic. At home, they feel comfortable there are not any peers around so they perform the tic. Over time, the urge to tic becomes strong at home and weak at school. Therefore, the tic happens more frequently at home than at school with no change in distractibility. When the child enters the high-urge environment of the home, the urges to tic may come on strong, leading to a flurry of tics. This is not because the child has been suppressing his or her tics all day, but because home is an urge-cuing environment.

    Knowing that tics can occur at different rates and intensities in different environments is important when thinking about tics. First, it explains why parents often feel that they see tics that no one else sees; they are probably seeing tics that are not present in other environments. Second, it can allay a concern that suppressed tics are leading to distractions in any environment where the tic is not present (or present at a lower frequency). The distraction from suppressing is likely to dissipate as the urge to tic decreases within the environment of suppression. Third, knowing that tics occur at different rates in different environments can be useful for behavioral therapy for tics, Habit Reversal Therapy (HRT/CBIT). I will often target environments of high-tic frequency as good places to practice HRT strategies for a specific tic.

  6. #6
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    Default Re: Comprehensive Course in Tourette Syndrome

    My Child has a Tourette Syndrome Diagnosis - What do I do?
    Shawn Ewbank, Psy.D., Licensed Psychologist
    August 15, 2013


    For some children, a diagnosis of TS causes little difficulty; tics can remain relatively mild and may not even be noticed by others. A child may remain free of other conditions that can lead to struggles for children with TS. However, for many children, a diagnosis of TS can come with various challenges (see What to Expect from Tics Over Time). Tics may at times get in the way of academic or social tasks, or may lead to difficulties with peer relationships or low self esteem. Also, many children with tics have other psychological and/or learning difficulties, such as obsessive compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD), anxiety, behavioral difficulties, rage attacks, learning disabilities and/or depression. As a parent, it can be useful to learn and prepare for all of these potential challenges. I recommend that parents of a children with TS take these four steps:

    1. Join the mailing lists of TS-focused organizations such as the Tourette Syndrome Association or the New Jersey Center for Tourette Syndrome (serves as a world-wide resource for interested families). In Canada, the Tourette Syndrome Foundation of Canada, In the U.K. Tourettes Action

    2. Learn about the various other potential difficulties that come with TS, so you can recognize if your child is showing any signs of disorders such as OCD or ADHD.

    3. Stay aware of treatment options for tics and of treatment options for other disorders. For a description of psychological treatments for many of these disorders, please take a look at my Treatments Offered section, which describes research validated treatments for various difficulties.

    4. Create a plan of how your will advocate for your child (see Helping my Child to Live with TS for pointers on this plan).

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