'Rules' and Tourette Syndrome

For children with Tourette Syndrome, in the classroom, following & understanding 'Rules' may be one of their greatest challenges! Impulsiveness, compulsions and obsessions, attention deficit, reactivity, problems with conversational turn-taking/reciprocity, vocal tics and many other Tourette's behaviours may cause difficulty and frustration in the structured and often 'low-tolerance' environment of the classroom and school. The effort and stress that results from trying to conform to sometimes bewildering, and often inflexible, rules can be an additional source of great anxiety that compounds that due to suppressing and hiding involuntary tics. Increased stress may have a very significant impact on the severity of tics and other Tourette symptoms placing a child with TS at even further educational disadvantage. Clearly rules and procedures are an essential part of the smooth running of schools and managing children's education in a classroom setting however teachers, if they are to successfully 'include' a child with TS will have to find a balance in allowing more flexibility for that child while maintaining overall class discipline. Achieving fairness may be a challenge as other children may not understand rules being applied differently to different students. If the child (and their parents) are willing, an informative talk or video presentation on TS and what it is may be very helpful. You can find links on the 'Resources' page to some useful information. One approach that has proven extremely inappropriate in all cases is that of continual and consistent admonishment of the child with TS. Often just 'not reacting' (especially negatively) to vocal tics and other TS behaviours helps diffuse, and avoid increasing, stress for the child and, surprisingly, other members of the class will rapidly accept and understand once they have had TS explained to them.
Teaching/educational resources
TSA Youth Ambassador video/presentation
Brad Cohen visits a UK school


A fictional but realistic portrayal of a TS child responding to the 'Rules'  
Courtesy of THINKFilm Co.

Microstructure assessment of grey matter nuclei in adult Tourette patients

Neuner I, Kupriyanova Y, Stöcker T, Huang R, Posnansky O, Schneider F, Shah NJ
Microstructure assessment of grey matter nuclei in adult Tourette patients by diffusion tensor imaging.
Neurosci Lett 2011 Jan 3; 487(1):22-6.

The onset of TS occurs during childhood; many patients experience a subsequent reduction of tic frequency and severity suggesting that the pathways involved play a significant developmental role. Research has mainly focused on the cortico-striato-thalamo-cortical circuit, but clinical symptoms and recent neuroimaging studies suggest the involvement of limbic structures as well. We acquired diffusion-weighted data at 1.5 T in fifteen adult patients fulfilling the DSM-IV-TR criteria for TS and in a healthy control group. Based on the Harvard-Oxford subcortical structural atlas we investigated the microstructure of grey matter nuclei such as the nucleus accumbens, the amygdala, the putamen, the pallidum and the thalamus. The basal ganglia and the thalamus show in the direct comparison between patients and control subjects no significant differences in the diffusion indices. However, within the Tourette group the correlation coefficients between diffusion parameters and measures of tic severity indicate that the individual microstructure of the basal ganglia has an influence on the individual clinical phenotype. The microstructure assessment of the amygdala and nucleus accumbens in TS revealed a significant difference for the left nucleus accumbens and the right amygdala. Our findings suggest two pathophysiologic patterns in TS. One pattern could indicate altered connectivity based on the correlation between the increased mean and axial diffusivity in the basal ganglia and tic severity. The other pattern is characterized by the increase in radial diffusivity in the amygdala and the correlation between radial diffusivity in the nucleus accumbens and tic measures indicating potentially altered myelination.


Abstract Copyright: Medline

Influence of sympathetic autonomic arousal on tics

Nagai Y, Cavanna A, Critchley HD
Influence of sympathetic autonomic arousal on tics: implications for a therapeutic behavioral intervention for Tourette syndrome.
J Psychosom Res 2009 Dec; 67(6):599-605.

The pharmacological treatment of Tourette syndrome (TS) has improved due to the application of new medications and combinations of medications, coupled to greater phenomenological and neurobiological understanding of the condition. Nevertheless, for many individuals with TS, potentially troublesome tics persist despite optimized drug treatment. Anecdotally, a relationship is frequently described between tic frequency and states of bodily arousal and/or focused attention. The galvanic skin response (GSR) is an accessible and sensitive index of sympathetic nervous activity, reflecting centrally induced changes in peripheral autonomic arousal. Sympathetic nervous arousal, measured using GSR, has been shown to have an inverse relationship with an electroencephalographic index of cortical excitability (slow cortical potential), and GSR arousal biofeedback shows promise as an adjunctive therapy in management of treatment-resistant epilepsy.We examined how changes in sympathetic arousal, induced using GSR biofeedback, impact on tic frequency in individuals with TS. Two different physiological states (sympathetic arousal and relaxation) were induced using GSR biofeedback in 15 individuals with a diagnosis of TS. During both biofeedback sessions, participants were videotaped to monitor the occurrence of tics.We observed significantly lower tics during relaxation biofeedback compared to arousal biofeedback, with tic frequency positively correlating with sympathetic arousal during the arousal session.These findings indicate that the conjunction of focused attention to task and reduced peripheral sympathetic tone inhibits tic expression and suggests a potential therapeutic role of biofeedback relaxation training for tic management in patients with TS.

Abstract Copyright: Medline

Shane Fistell: A Portrait of Tourette Syndrome

Shane Fistell: A Portrait of Tourette Syndrome


An insightful and moving portrayal of a remarkable man and a much misunderstood disorder. Shane Fistell has been featured in several documentaries about TS, appeared in movies, is an active TS advocate and an accomplished painter and sculptor. Shane does not usually hide his 'symptoms' or take medication but allows full expression of his condition through his life and art. He has an extraordinarily 'tactile' and direct connection to his environment.


Due to problems with embedding IMDB videos, use the vertical scroll bar to centre the video and view player controls >



More documentary video material about Shane: http://tsfocus.blogspot.com/2011/10/video-documentary-films-about-tourette.html

Christmas and Holiday Wishes to 

all our followers and supporters :)

Tourette Syndrome: the self under siege

Leckman JF, Bloch MH, Scahill L, King RA
Tourette syndrome: the self under siege. [Journal Article, Research Support, N.I.H]
J Child Neurol 2006 Aug; 21(8):642-9.

"Tourette syndrome is a neurodevelopmental disorder characterized by motor and vocal tics--rapid, repetitive, stereotyped movements or vocalizations. Tourette syndrome typically has a prepubertal onset, and boys are more commonly affected than girls. Symptoms usually begin with transient bouts of simple motor tics. By age 10 years, most children are aware of nearly irresistible somatosensory urges that precede the tics. These urges likely reflect a defect in sensorimotor gating because they intrude into the child's conscious awareness and become a source of distraction and distress. A momentary sense of relief typically follows the completion of a tic. Over the course of hours, tics occur in bouts, with a regular intertic interval. Tics increase during periods of emotional excitement and fatigue. Tics can become "complex" in nature and appear to be purposeful. Tics can be willfully suppressed for brief intervals and can be evoked by the mere mention of them. Tics typically diminish during periods of goal-directed behavior, especially those that involve both heightened attention and fine motor or vocal control, as occur in musical and athletic performances. Over the course of months, tics wax and wane. New tics appear, often in response to new sources of somatosensory irritation, such as the appearance of a persistent vocal tic (a cough) following a cold. Over the course of years, tic severity typically peaks between 8 and 12 years of age. By the end of the second decade of life, many individuals are virtually tic free. Less than 20% of cases continue to experience clinically impairing tics as adults. Tics rarely occur in isolation, and other coexisting conditions--such as behavioral disinhibition, hypersensitivity to a broad range of sensory stimuli, problems with visual motor integration, procedural learning difficulties, attention-deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder, depression, anxiety, and emotional instability--are often a greater source of impairment than the tics themselves. Emerging behavioral treatments of Tourette syndrome are based in part on an understanding of the moment-to-moment experience of somatosensory urges and motor response. With identification of specific genes of major effect and advances in our understanding of the neural circuitry of sensorimotor gating, habit formation, and procedural memory--together with insights from postmortem brain studies, in vivo brain imaging, and electrophysiologic recordings--we might be on the threshold of a deeper understanding of the phenomenology and natural history of Tourette syndrome."

Abstract quotation © J Child Neurol. External link: Full Article (requires subscription)

Bullying No Way with Jaylen Arnold, Robin Arnold and Actor Dash Mihok

Meet Jaylen Arnold, a boy with Tourette Syndrome who is 'stomping the stigma' and creating a campaign "Bullying No Way." An incredible kid with an amazing mum are joined by acclaimed actor Dash Mihok a mentor, supporter and advocate.

 

Or view on Coffee Klatch page: LINK

Listen to internet radio with The Coffee Klatch on Blog Talk Radio

Ruth Ojadi in 'I Swear I Can Sing' BBC3 Documentary

At 25, Ruth Ojadi had an amazing singing voice and a place to study music at university. She should have been on her way to the top. Instead, Ruth was diagnosed with Tourette's Syndrome and her life fell apart. The blinks and twitches her GP had put down to nerves became worse and before long she started swearing and blurting out inappropriate comments, eventually dropping out of university and locking herself away. Now, three years on, Ruth has decided to take her life back and once again step up to the mic, but when a trip to the supermarket is such a struggle how will she cope with getting up on stage?


BBC iPlayer View Online (now expired) http://www.bbc.co.uk/iplayer/episode/b018cqgl/Tourettes_I_Swear_I_Can_Sing/


YouTube: http://www.youtube.com/watch?v=KTEY84SwJFY 
To see all parts click 'watch on YouTube'

Tourette Syndrome: information for school nurses.

Golder T
Tourette Syndrome: information for school nurses. [Journal Article]
J Sch Nurs 2010 Feb; 26(1):11-7.

Tourette Syndrome (TS) is a neurobehavioral disorder that consists of simple and complex tics. This disorder can significantly affect a child's self-esteem and academic success. Although some believe that only adults are affected, this disorder occurs most frequently in early childhood and symptoms decrease with age. Diagnosis of this disorder can be difficult due to the high incidence of comorbidity of other psychiatric illnesses, such as attention-deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), bipolar disease, and depression. Early recognition of the disorder allows positive interventions geared toward controlling tics and provides an outlet for tic release. Children and families who are affected by the disorder may attempt to hide the behaviors due to embarrassment of tics. The school nurse is instrumental in working with parents, staff, and other children to assure understanding of the disorder, provide coordination of care, and provide a safe outlet for the child to release the stress of tics during the school day.


Abstract © Medline

Thinning of sensorimotor cortices in children with Tourette syndrome.

Sowell ER, Kan E, Yoshii J, Thompson PM, Bansal R, Xu D, Toga AW, Peterson BS
Thinning of sensorimotor cortices in children with Tourette syndrome. [Journal Article, Research Support, N.I.H]
Nat Neurosci 2008 Jun; 11(6):637-9.

The basal ganglia portions of cortico-striato-thalamo-cortical (CSTC) circuits have consistently been implicated in the pathogenesis of Tourette syndrome, whereas motor and sensorimotor cortices in these circuits have been relatively overlooked. Using magnetic resonance imaging, we detected cortical thinning in frontal and parietal lobes in groups of Tourette syndrome children relative to controls. This thinning was most prominent in ventral portions of the sensory and motor homunculi that control the facial, orolingual and laryngeal musculature that is commonly involved in tic symptoms. Correlations of cortical thickness in sensorimotor regions with tic symptoms suggest that these brain regions are important in the pathogenesis of Tourette syndrome.


Abstract © Medline

Marc Elliot - 'Live and Let Live' Live presentation: TED

Marc Elliot has a book coming out in January 2012 'What makes you tic?'


'Marc attended Washington University in St. Louis, where he majored in biology and pursued a pre-medicine path in hopes of following the footsteps of the pediatric surgeon who saved his life. Upon graduating in May of 2008, Marc embarked upon a speaking tour around the nation. It was just something to do before he became a doctor. His subject was tolerance.

In his presentation, "What Makes You Tic?," he took his experiences of not fitting in, of not feeling comfortable with others, to discuss fundamental lessons about tolerance—how to live with our own, and others' differences. Little did he know this would become his calling.

Over the past three years, he has spoken to hundreds of groups and organizations, reaching out to over 75,000 individuals in the US and internationally. At the age of 26, Marc has now found a way to use his own story, and his triumph over handicaps as a way of helping individuals around the world overcome think about tolerance in a new light.'

Response to emotional faces in Tourette's patients

Neuner I, Kellermann T, Stöcker T, Kircher T, Habel U, Shah JN, Schneider F
Amygdala hypersensitivity in response to emotional faces in Tourette's patients. [Journal Article, Research Support, Non-U.S. Gov't]
World J Biol Psychiatry 2010 Oct; 11(7):858-72.

Tourette's syndrome is characterised by motor and vocal tics as well as a high level of impulsivity and emotional dysregulation. Neuroimaging studies point to structural changes of the basal ganglia, prefrontal cortex and parts of the limbic system. However, there is no link between behavioural symptoms and the structural changes in the amygdala. One aspect of daily social interaction is the perception of emotional facial expressions, closely linked to amgydala function.We therefore investigated via fMRI the implicit discrimination of six emotional facial expressions in 19 adult Tourette's patients.In comparison to healthy control group, Tourette's patients showed significantly higher amygdala activation, especially pronounced for fearful, angry and neutral expressions. The BOLD-activity of the left amygdala correlated negatively with the personality trait extraversion.We will discuss these findings as a result of either deficient frontal inhibition due to structural changes or a desynchronization in the interaction of the cortico-striato-thalamo-cortical network within structures of the limbic system. Our data show an altered pattern of implicit emotion discrimination and emphasize the need to consider motor and non-motor symptoms in Tourette's syndrome in the choice of both behavioural and pharmacological treatment.

Abstract: Copyright - Medline

Sensory, motor, affective, and behavioural issues in TS

Kimber TE 
An update on Tourette syndrome. [Journal Article, Review]
Curr Neurol Neurosci Rep 2010 Jul; 10(4):286-91.


Recent advances in our understanding of the phenomenology, etiology, pathophysiology, and treatment of Tourette syndrome are discussed. Tourette syndrome appears to involve dysfunction of limbic and somatosensory "traffic" through the basal ganglia, within corticostriatal-thalamocortical circuits. Dynamic alterations in the balance of these inputs may dictate the manifestations (sensory, motor, affective, and behavioral) of the disorder at any given time. Individualized assessment and treatment are the keys to optimal treatment of this condition.

Abstract: Copyright - Medline

Tommy Bryan helps battle Tourette’s with poetry

A poem written by teenager Tommy Bryan, with hopes that others can relate to it. From Teens4Tourettes: 
"I am the wolf that howls in the night .... "
http://www.njcts.org/teens4ts/boy-helps-battle-tourettes-with-poetry/