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After the Diagnosis & Beyond the Tics: Tourette Syndrome in Childhood and Adolescence

A Presentation by Lawrence W. Brown M.D.
Children’s Hospital of Philadelphia
April 23 at 7:30 PM EST
Download webinar here.

In our webinar, we learned about some effective strategies for helping kids and teens with Tourette Syndrome, especially through their formative school years. Why and when tics should be treated was a topic of discussion and that most individuals do not need medication to suppress tics but if medication is indicated well planned drug holidays may help to define need continuing need for medication, but abruptly stopping medication as a test of ongoing need for treatment is inappropriate.

Comment(1)

  1. Lawrence W. Brown M.D. says
    1. At 14 years old, when tics are severe & complex, can we still have hope for things to stabilize or better?

      Absolutely. Many individuals proceed slowly through puberty and some boys are not shaving or girls having periods at 14. Even those who are more physically advanced have slower development of brain circuitry associated with reduction of tics. Even if tics are not improved, there is great hope that more maturity will allow them to handle the tics more effectively.

    2. When do we know if we have things lifelong?

      If tics are still present during college, it is a sign that the individual had best prepare for the possibility that they will not fade away. But it is important to remember that even if tics disappear it is less likely that ADHD and OCD will follow the same successful trajectory. I once was told by a new patient’s mom that her brother was cured of his Tourette. When I asked how he was doing, she responded "terrible" because he had never learned to deal with all of the residual attentional and psychiatric issues.

    3. We have a 13 year old boy with complex motor and vocal tics he has a odd tripping / stumbling forward motion to the point of losing balance and at times falling forward. Have you seen this kind of tripping in the 4,000 you have served?

      Yes, there are always new tics, but this one is not unheard of. bending, writhing, tripping are just variations on a theme. We can treat all tics in general with medication, but individual disabling tics may be equally well addressed with psychological approaches. It may not eliminate tics, but it can allow him to control the really bad one.

    4. How successful is biofeedback with tics, OCD (obsessive compulsive disorder), and ADHD (attention deficit hyperactivity disorder)? Do you recommend it?

      As a neurologist who does not work directly with the broad spectrum of behavioral psychologists (except as part of the virtual team for all kids), I shouldn’t comment too strongly. Biofeedback is just one of the relaxation approaches that can reduce anxiety and thus reduce anxiety-related tics. I have definitely seen it helpful at times, but I don’t have direct knowledge.

    5. How successful is HRT (habit reversal therapy) with tics?

      This is another psychological approach that is gaining acceptance for Tourette syndrome as well as many other disorders. I am aware that my colleague Dr. Martin Franklin in the Penn Anxiety and OCD Center has protocols in process to evaluate this approach.

    6. Our 14 year old daughter has a lot of what I’d call social phobias (basically is afraid to call friends, reach out to friends due to looking "lame"). We’ve raised 4 other teens prior to her and her social phobia seems different than theirs, more pronounced. Is this part of the anxiety disorder and how do we help her?

      Anxiety disorders of all sorts are very common co-morbidities in Tourette syndrome. Social phobia may not be as frequent as OCD or GAD (generalized anxiety disorder) but it certainly is part of the spectrum.

    7. Please speak more about suggestibility, I have an older son, age 28, who bangs his head while he sleeps, rocking it rhythmically. He had a few vocal tics earlier in his life. He still head bangs but doesn’t have vocal. Would he meet the criteria for TS? (Looking at genetic-family issue)

      No. Head banging (also known as rhythmic body movement disorder or the old term jactatio capitis nocturnis) is a separate disorder from tics. It typically starts in late infancy and is outgrown by kindergarten, although there are many affected adults. Treatment is not very effective, but psychological approaches and benzodiazepines (like clonazepam) have been helpful.

    8. My 14 year old daughter just attended the NTSA training in DC, she came home with a bunch of new tics that look like her new friend’s tics. Is this common and how long do you think this waxing phase will last?

      Unfortunately, some kids are very suggestible and pick up new tics from the environment. I have several families who refuse to watch "I have Tourette’s but Tourette’s doesn’t have me" because they know it will lead to new mannerisms. The nice thing is that the added tics usually disappear pretty quickly.

    9. Our 10 yr old son has just developed coprolalia after two years of having TS, does this usually stay with them into adulthood?

      NO, NO, NO. Assuming we are talking about real coprolalia and not just street talk, it is rarely a permanent part of the story. It is amenable to the medications and the psychological approaches to control it.

    10. Does a child’s diet have any impact on tic severity?

      This is a question that hasn’t been fully addressed. The short answer is that dietary regulation has no good evidence. But that simple answer may include some children who have food sensitivities and allergies that can trigger or maintain tics.

    11. My son also has "penis" tics and complains of tics INSIDE his belly and back. Can this be?

      Yes. I have several patients with tics centered on sexual organs and many more with belly lifting or bearing down tics. Obviously, anything with a sexual component like squeezing ones genitals in public is unacceptable and needs to be addressed before it becomes socially disabling or misinterpreted.

    12. Are they any research centers on TS in Florida that I can go to with my son to get help? The medications he is on are just not working.

      This is beyond my knowledge, but I am sure that the Florida Tourette Association or the national organization can point you to local resources.

    13. I believe that sensory issues have a major impact on T.S. Have you seen this in your research?

      More research has been done recently on sensory tics, also called premonitory urges. They are very helpful because it gives the individual (and psychologist) a window of time to intervene to suppress the tics. It also raises some interesting theoretical issues, since for many years Tourette’s has been considered a pure motor disorder.

    14. My son has Multiple TICS and they are COMPLEX and all at one time, especially terrible leg tics. They are interfering with his walking and overall activities of daily living. They NEVER go away. Any help?

      Each person with Tourette has his own burden of tics. It is hard to answer this question if ALL tics are limited to the lower extremities and there have never been any other verbal or the more common head-neck tics. That would lead a neurologist to consider other diagnoses involving the lower extremities. If the complex leg tics are "just" part of the more usual collection of symptoms, then he should be seeing a neurologist or psychiatrist with a comprehensive approach.

    15. Can you speak of Executive Functioning and it’s relation to TS?

      Executive function is jargon for the collection of decision-making processes in the frontal lobes that allow us to make mature choices, tell the forest for the trees, pay attention to important things and skip over the less important, etc. It is a problem that is part of ADHD, and important to Tourette primarily when the two conditions co-exist, as they do in 60-70% of affected people.

    16. If a child reads about (or sees) other types of tics, will this increase the chances that they will start doing these types of tics?

      Unfortunately, some kids are very suggestible and pick up new tics from the environment. I have several families who refuse to watch "I have Tourette’s but Tourette’s doesn’t have me" because they know it will lead to new mannerisms. The nice thing is that the added tics usually disappear pretty quickly

    17. How long is the average waxing and waning phase?

      By their nature, tics always wax and wane. Sometimes we can make sense of the reason why someone has more tics – often stress/anxiety, the post-stress letdown phase, illness, injury – but most of the time they have a life of their own.

    18. If a child has severe tics at 9yrs old, will they be more likely not to grow out of the tics later in life?

      Yes. From both cross-sectional studies of people at all ages and confirmed by longitudinal studies of the same patients over time, tics are often at their worst at approximately 10 years of age. It is at this time that the basal ganglia (deep collections of nerve cells within the brain important to control of motor activity) are completing their maturity, after which tics tend to improve.

    19. How long can someone stay on Topamax? Do children build up a tolerance to this medication?

      There is no reason why someone could not stay on Topamax indefinitely. There is also no reason to suspect that the medication would develop reduced effectiveness over time. However, there may be challenges that overwhelm the ability of Topamax (or any drug) to overcome the tendency to tics.

    20. Has cool laser therapy or acupressure been effective in treating TS symptoms?

      I have no knowledge of laser therapy in the treatment of Tourette syndrome, but acupressure is one of several modalities of relaxation approaches that may have some effect.

    21. How does exercise / sports effect / help with tics?

      This is only an educated guess, but exercise can stabilize mood and produce a feeling of calmness. Also, it can regulate blood pressure and even blood sugar. From my experience, people with Tourette may demonstrate tics when they are playing sports, but the concentration of actual play makes the tics disappear.

    22. Can stuttering be a verbal tic? Especially when associated with neck twitching.

      Stuttering by itself is not considered a tic, but it clearly is related. There is an increasing recognition that stuttering may be a forerunner of tics. And in the presence of Tourette syndrome, stuttering can be seen as an associated tic mannerism. There are anatomical reasons that tie the two together: both involve disturbances within the basal ganglia of the brain.

    23. Is it possible that by just increasing Straterra dose –symptoms such as depression, rage and severe eye blinking can decrease?

      Straterra is a unique medication for ADHD that works differently than the stimulants. While it failed as a primary treatment for anxiety when tested before the drug was released, it definitely can work in that direction. The studies of Straterra in children with ADHD and tic disorders were designed to show only that it was no different than placebo in affecting tics. In fact the trend was in favor of tic reduction, and about a third of children do show sustained tic improvement. I do not know of any support for Straterra as an anti-depressant.

    24. In American Journal or Psychiatry Dec. 2007, an article mentioned success with one patient on finasteride (PROSCAR). Have you heard of any other success with this drug or any investigation in the use of this drug?

      I am unaware of this study, but will look into it. Many new approaches are discovered serendipitously by the unintended effects when physicians are treating something else. However, one should never jump to conclusions and start asking for unproven treatments until large scale studies are completed.

    25. What is your take on PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep Infections). Does it exist?

      This is the subject of a major lecture. If PANDAS exists, it is far smaller in scope than the attention given to it in the lay press. The latest studies show that there is no relationship between tic severity, strep colonization and evidence of recent strep exposure.

    26. Are methylphenidates less tic provoking than amphetamines?

      This has never been clearly demonstrated, although it is my impression that amphetamines produce more stereotypies (repetitive behaviors), anxieties and nail-biting that overlap with tics.

    27. In how many children, whose primary challenge is anxiety, suffer with this into adulthood and beyond?

      The studies vary all over the place, but if I had to advise a family, the general number would be approximately one-third. However, this means nothing since it is impossible to know if you are part of the one-third or the two thirds. And a positive attitude and therapy can clearly help to minimize the effect of the persistent problem even if the worries and anxieties do not go away entirely.

    28. On the "OCD" slide, you had listed TCA: Clomipramine (Anafranil), is this a medication. If so is this an SSRI? My 11 year old son has not had a positive experience with the SSRI’s and I have heard that the Adrenergic Agonist’s are a possibility for treating OCD in "TS".

      Anafranil is a tricyclic antidepressant different than the SSRIs. It is still the first and most effective treatment for pediatric OCD, although side effects and safety concerns make the SSRIs a first line treatment when medication is warranted. Adrenergic drugs including clonidine and guanfacine can help tics, ADHD and anxiety, but I do not know of any direct effect on OCD.

    29. Why is rage associated with TS?

      There are theoretical concerns, but the simple answer is nobody really knows. The frustration of dealing with constantly being out of control and a condition like OCD where it is critical for the individual to be in control sounds like a pretty good set up for rage. And then there is rage in teenagers with raging hormones without tics at all – just ask their parents.

    30. Can you describe what are the characteristics of a good social skills program for a TS kid.

      I know of no special criteria for social skills in Tourette compared to any other reason why a child might need help in friendship skills, taking turns, etc.

    31. Is it necessary to determine whether PANDAS is the appropriate diagnosis? Would different treatments be used?

      This goes back to the controversy around whether PANDAS is a real diagnosis. If you ask about recent evidence for strep in a child with tics, you will often find evidence that implicates exposure to the bacteria within the past months. But that does not mean any cause and effect relationship. If there are sudden explosive tics and a positive strep culture, then it makes sense to treat it, even if there is no other clinical evidence of a strep throat. Only if this recurs would one ever raise the possibility of long term antibiotics. The use of immunomodulatory drugs like IVIG or plasmapheresis should be reserved to specialized programs.

    32. If TS isn’t diagnosed until age 16 or so, and they continue past age 18 or so, is it likely that they will continue into adulthood?

      That makes intuitive sense. However, although the official diagnosis of Tourette allows diagnosis up to 21 years of age, the NEW onset of tics during puberty or beyond is quite unusual and raises the possibility of another diagnosis of a different movement disorder.

    33. My son is 10 and had moderate tics. We are discussing meds with the neurologist, but there are so many meds. How do you know which is the best to start with?

      There is no guarantee for success, and no cookbook to tell the doctor or family which approach will work. The art of medicine is balancing risk and benefit. Most specialists will start with adrenergic drugs (guanfacine or clonidine) if there is time to build it up. Drugs like risperidone (Risperdal) are potentially more effective, work faster, but have greater side effects.

    34. My son tells me talking about his tics makes him want to tic more. What causes that?

      There is a tendency for tics to be suggestible, and it doesn’t always have to come from the outside; sometimes one can suggest things internally.

    35. What’s going on with the social skills program at CHOP.they say it never started.

      There was an attempt several years ago to organize a coalition of individuals who were interested in social skills curriculum. At that time CHOP had several groups going both at the main hospital and in conjunction with clinicians in the community. Unfortunately, social skills groups need to be accessible to the kids and families, and getting to and from University City in the late afternoon is a project of frustration. It turns out that to be successful such programs need to be local as well as connected to a large enough base of referrals that children of a similar age, diagnosis and developmental level.

    36. Especially if it is noticed very soon how does CBT work to help TS?

      That is something best answered by a psychologist. From the perspective of a child neurologist, it appears that benefit can be seen in weeks if the child is developmentally appropriate and the issues uncomplicated.

    37. Are there any other behavior or psychoanalatyic therapies and how do they work?

      Again, this would be best answered by a mental health professional. There are many behavioral approaches, all of which can help at times, some of which are proprietary and expensive which only repackage standard techniques. Psychoanalysis is an approach which has been less popular in recent years in part due to the lack of scientific proof as well as the prolonged and intensive requirements; however, that is not to say that it cannot be helpful in the individual case.

    38. Fear of consequences, is there a questionable area in dealing with TS child and development of conscience?

      This is a difficult area which is not in the usual purview of the child neurologist. Clearly, it is very important that a child develop a sense of conscience, right and wrong, justice, and awareness of the consequences of one’s actions. I would leave it to others more knowledgeable in the education of children whether fear ever has a role as a learning tool.

    39. If a child starts a medicine and you notice a big difference in behavior, (for example, starts sleeping again thru the night, stops whining, much more sedate and reasonable, to what can that be attributed?

      We all use temporal association to attribute cause and effect. It is even more compelling if there is a scientific explanation to support the connection. If a child starts clonidine which can facilitate sleep, and he has a better night’s sleep so that he is more alert and calmer during the day, has a better chance of success and builds upon that success with more positive attitude… it makes sense to me.

    40. You said that ‘fear of consequences’ may not be present in TS related OCD.please explain.

      Individuals with "pure" OCD without tics often have their rituals to prevent something bad happening. Even small children have told me that they must tap 5 times so that their mother is safe. Those with Tourette usually do their rituals until it "feels right".

    41. Someone recently suggested Language services to address social language. Do you have thoughts about reduced social skills or social emotional vs language deficits?

      Some children have no problem with articulation or understanding language, but still have difficult with the emotional meaning of words or social use of language. Even if we teach our children to tell the truth, we don’t want them to go up to people and tell them that they are ugly, etc. Also, metaphor is commonly used in language, and it puts children at great disadvantage when someone says that it is raining cats and dogs, and the child is upset because he can’t find the animals. Social skills training works on semantic use of language, and that can be as helpful as learning to take turns or introduce yourself.

    42. I’ve been reading that tourette children have trouble copying from the board. Why is this? What are the strategies for dealing with it?

      I have never heard of this problem, although I am sure that there are many children with specific learning disabilities (with and without tics) who have difficulties in visual perceptual and visual motor skills.

    43. Where can I find more information on the idea that frustrating/bad experiences can change the brain (and likewise good experiences can change brain for the better)?

      There is an increasing literature about early trauma and post-traumatic stress disorder in changing the amount of stress hormones, response to additional stress, connectivity and function of the brain. There is less about the converse, but it makes sense that if bad experiences change the brain in deleterious ways, then good experiences should allow the brain to develop in wholesome and healthy ways. Even if I can’t prove it, I am convinced that we can build success on success.

    44. What is the best way to deal with the anger issues that crop up in adolescents with TS?

      The best way might be to begin to deal effectively with the complex behaviors that is called Tourette earlier than puberty so that the teen has a successful strategy to deal with the challenges. That is not as condescending as it might sound since many children are not being offered a comprehensive approach when the issues are already present in the pre-teen. If one has to intervene in an adolescent situation which is explosive, the stakes are much higher once they have access to the car keys as well as self-medication like drugs, alcohol and cigarettes. Even if they don’t act out externally, they might develop depression or "cutting" or lose interest in life. At that point, it will take a mental health approach under the supervision of a sensitive and talented child and adolescent psychiatrist to effectively deal with the issues.

    45. Any suggestions for perseverating thoughts – not classic OCD. Can CBT help this?

      Yes, CBT is designed to help this type of perseveration.

    46. I am a 6th grade special education teacher as well as a mother of three sons with mild Tourettes. I am interested to learn more about whether the ADD and learning difficulties will become less pronounced as my boys mature.

      This has already been discussed. The tics are very likely to improve, the hyperactivity is very likely to improve, although inattentive signs of ADHD as well as internal restlessness ("inward hyperactivity") may persist. Learning disabilities do not improve, although compensatory mechanisms should minimize their adverse effects.

    47. How do you handle the impulsivity and aggression and how the rest of society views it?

      Dealing with the stigma of any difference is not anything that is taught in medical school. In the case of Tourette syndrome, we are not even dealing with a "disease" but rather a functional perturbation of normal brain activity. It is my long standing belief (still unproven) that the outcome of a child with Tourette syndrome has more to do with his own, his family’s and his community’s acceptance of the differences aw well as his resilience than with the severity of his tics. The Tourette Syndrome Association is an important factor in reducing the ignorance of most people about the disorder, and most people will be much more accepting once they learn more. I have seen children as young as third grade give reports on Tourette syndrome and change the attitude of the class, and the TSA has effective brochures and wonderful programs to provide in-service education to teachers and staff.

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