I am delighted to let everyone know that a new comprehensive book on Tourette Syndrome is available from Oxford University Press. Sheryl Pruitt and I were honored to be asked to write the chapter for educators. The book, Tourette Syndrome, is edited by Davide Martino and James F. Leckman. Here is the table of contents:
SECTION 1 CLINICAL PHENOMENOLOGY and EPIDEMIOLOGY
Chapter 1 Phenomenology of tics and sensory urges: the self under siege
James F Leckman, Michael H Bloch, Denis G Sukhodolsky, Lawrence Scahill, Robert A King (Child Study Center, Yale University, New Haven, CT, USA)
Chapter 2 The phenomenology of attention deficit hyperactivity disorder in Tourette syndrome
Aribert Rothenberger (University of Gottingen, Germany) and Veit Roessner (University Medical Center, Dresden, Germany)
Chapter 3 The phenomenology of obsessive-compulsive symptoms in Tourette syndrome
Ygor A Ferrao (Universidade Federal de Ciencias de Saude de Porto Alegre, Brazil), Pedro G de Alvarenga, Ana G Hounie, Maria Alice de Mathis, Maria C de Rosario and Euripedes Miguel (University of Sao Paulo Medical School, Brazil)
Chapter 4 Other psychiatric co-morbidities in Tourette syndrome
Danielle Cath (Utrecht University, The Netherlands) and Andrea Ludolph (University of Ulm, Germany)
Chapter 5 Clinical course and adulthood-outcome in Tourette syndrome
Michael Bloch (Yale Child Study Center, New Haven, CT, USA)
Chapter 6 Prevalence and methods for population screening
Lawrence Scahill (Yale Child Study Center, New Haven, CT, USA) and Soren Dalsgaard (Denmark)
SECTION 2 ETIOLOGY
Chapter 7 Genetic susceptibility in Tourette syndrome
Thomas Fernandez and Matthew W State (Child Study Center, Yale University, New Haven, CT, USA)
Chapter 8 Perinatal adversities and Tourette syndrome
Pieter J Hoekstra (University of Groningen, The Netherlands)
Chapter 9 Infections and tic disorders
Tanya K Murphy (University of Florida College of Medicine, Gainesville, FA, USA)
SECTION 3 PATHOPHYSIOLOGY
Chapter 10 Cellular and molecular pathology in Tourette syndrome
Flora M Vaccarino, Yuko Kataoka and Jessica Lennington (Child Study Center, Yale University, New Haven, CT, USA)
Chapter 11 Electrophysiology in Tourette syndrome
Michael Orth (University of Ulm, Germany)
Chapter 12 Neurobiology and functional anatomy of tic disorders
Deanna J Greene, Kevin J Black, Bradley L Schlaggar (University of Washington, St. Louis, MO, USA)
Chapter 13 The Neurochemistry of Tourette syndrome
Harvey S Singer (Johns Hopkins University School of Medicine, Baltimore, MD, USA)
Chapter 14 Immunity and stress response in Tourette syndrome
Davide Martino (Queen Mary University of London, London, UK)
Chapter 15 Animal models of tics
Kevin W McCairn, Yukio Imamura and Masaki Isoda (Okinawa Institute of Science and Technology, Okinawa, Japan)
SECTION 4 DIAGNOSIS AND ASSESSMENT
Chapter 16 Wither the relationship between etiology and phenotype in Tourette syndrome?
Mary M Robertson (St. George’s Hospital and Medical School, London, UK) and Valsamma Eapen (University of New South Wales, Sydney, Australia)
Chapter 17 The differential diagnosis of tic disorders
Roger Kurlan (Atlantic Neuroscience Institute, Summit, NJ, USA)
Chapter 18 Comprehensive assessment strategies
Robert A King and Angeli Landeros-Weisenberger (Child Study Center, Yale University, New Haven, CT, USA)
Chapter 19 Clinical rating instruments in Tourette syndrome
Andrea E Cavanna and John CP Piedad (University of Birmingham, Birmingham, UK)
Chapter 20 Neuropsychological assessment in Tourette syndrome
Tara Murphy (Great Ormond Street Hospital for Children, London, UK) and Clare Eddy (University of Birmingham, Birmingham, UK)
Chapter 21 Social and adaptive functioning in Tourette syndrome
Denis G Sukhodolsky, Virginia W Eicher and James F Leckman (Child Study Center, Yale University, New Haven, CT, USA)
SECTION 5 TREATMENT
Chapter 22 Psychoeducational interventions: what every parent and family member needs to know
Eli R Lebowitz and Lawrence Scahill (Child Study Center, Yale University, New Haven, CT, USA)
Chapter 23 Cognitive-behavioural treatment for tics
Matthew R Capriotti and Douglas W Woods (University of Wisconsin, Milwaukee, WI, USA)
Chapter 24 Pharmacological treatment of tics
Veit Roessner (University Medical Center, Dresden, Germany) and Aribert Rothenberger (University of Gottingen, Germany)
Chapter 25 Treatment of psychiatric co-morbidities in Tourette syndrome
Francesco Cardona (University of Rome “La Sapienza”, Rome, Italy) and Renata Rizzo (University of Catania, Catania, Italy)
Chapter 26 Surgical treatment of Tourette syndrome
Mauro Porta, Marco Sassi and Domenico Servello (IRCCS Galeazzi, Milan, Italy)
Chapter 27 Alternative treatments in Tourette syndrome
Beata Zolovska and Barbara Coffey (NYU Child Study Center, New York City, NY, USA)
SECTION 6 RESOURCES & SUPPORT
Chapter 28 Information and social support for patients and families
Kirsten Muller-Vahl (Hannover Medical School, Hannover, Germany)
Chapter 29 Information and support for educators
Sheryl K Pruitt (Parkaire Consultants, Marietta, GA, USA) and Leslie E Packer (Independent Practice, North Bellmore, NY)
Chapter 30 Tourette syndrome support organisations around the world
Louise Roper (University of Birmingham, Birmingham, UK), Peter Hollenbeck (Purdue University, West Lafayette, IN, USA) and Hugh Rickards (University of Birmingham, Birmingham, UK)
A recent study by Pieter Hoekstra, Andrea Dietrich, Mark Edwards, Ishraga Elamin, and Davide Martino reviews some the literature on prenatal and perinatal environmental factors that may influence the onset and course of Tourette syndrome. From the abstract, some key points:
- Pregnancy-related noxious exposures may be more frequent in pregnancies of children who will develop TS, particularly maternal smoking and prenatal life stressors experienced by the mother.
- Low birth weight and use of forceps delivery may be associated with greater tic severity, and my also increase the rate or risk of ADHD and OCD.
- Psychosocial stress remains the most important contextual factor influencing tic severity, as confirmed by prospective studies.
While correlation does not prove causation, the link between maternal smoking during pregnancy and ADHD and TS has been documented for decades. If you’re pregnant, you may not be able to control all the external stressors in your life, but if you haven’t cut down or quit smoking already, speak to your doctor about getting help.
I always appreciate it when research confirms my hypotheses or what I do clinically based on my professional experiences and training in behavioral psychology.
Some new research by Beetsma, van den Hout, Engelhard, Rijkeboer, and Cath in Behavioral Neurology suggests that giving in to the urge to tic (the premonitory urges) may be counterproductive and make the child or adult more likely to tic than less likely to tic the next time they experience the urge.
Here’s the abstract of their study:
Tics in Tourette Syndrome (TS) are often preceded by ‘premonitory urges’: annoying feelings or bodily sensations. We hypothesized that, by reducing annoyance of premonitory urges, tic behaviour may be reinforced. In a 2X2 experimental design in healthy participants, we studied the effects of premonitory urges (operationalized as air puffs on the eye) and tic behaviour (deliberate eye blinking after a puff or a sound) on changes in subjective evaluation of air puffs, and EMG responses on the m. orbicularis oculi. The experimental group with air puffs+ blinking experienced a decrease in subjective annoyance of the air puff, but habituation of the EMG response was blocked and length of EMG response increased. In the control groups (air puffs without instruction to blink, no air puffs), these effects were absent. When extrapolating to the situation in TS patients, these findings suggest that performance of tics is reinforced by reducing the subjective annoyance of premonitory urges, while simultaneously preventing habituation or even inducing sensitisation of the physiological motor response.
This is actually just straight behavioral psychology: any response (in this case, a tic) that decreases an unpleasant situation (in this case, the premonitory urge) is maintained or even strengthened. This same type of analysis applies to the performance of compulsive behaviors in the presence of an obsessive thought: engaging in the behavior reduces the worrying or persisting thought, thereby maintaining or strengthening the compulsive behavior.
Every time the individual gives in to the urge to tic, then, it may be strengthening the tic. And that has important implications for treatment.
I shudder whenever I see news stories suggesting that an individual accused of heinous crimes may have Tourette’s Disorder or some related diagnosis, as such stories may mislead the public into thinking that these conditions cause or increase the risk of bad or criminal behavior.
In Norway, Anders Breivik is on trial for actions that he has already confessed to: the bombing of government buildings in Oslo and then an attack on a youth camp in Utøya. All told, he left 77 dead. The only issue before the court at this time is whether Breivik was legally sane at the time of his terrorist actions or if he was insane.
Enter the psychiatric opinions, stage left. The Local reports:
Ulrik Fredrik Malt, a psychiatry professor at the University of Oslo, said the 33-year-old Breivik was suffering from Asperger’s syndrome, Tourette’s syndrome and narcissistic personality disorder, but was likely not psychotic.
The question of Breivik’s sanity is key to his ongoing trial. Though judges are certain to find him guilty, they must decide if he was criminally sane or not.
Their decision would affect whether he gets mental treatment in a secure psychiatric facility.
Asperger’s is a developmental disorder on the autistic spectrum that often is characterized by a lack of empathy. Tourette’s is a neurological disorder marked by tics and verbal outbursts.
Malt said Tourette’s could explain why Breivik has frequently smiled inappropriately throughout the trial.
The psychiatrist left open the possibility that Breivik was suffering from paranoid psychosis but said the chances of such a condition were less than 25 percent.
Breivik, who admitted killing 77 people in a July 22nd bomb attack and shooting rampage, wants to prove his sanity because he thinks more people would give credence to his extremist ideology — described as a crusade against multiculturalism and a pending “Muslim invasion” of Norway and Europe.
Malt’s opinion is based on his observations of Breivik during his trial, which started on April 16th, but he has not interviewed the defendant.
So what impression do such media reports create in the public’s mind? Is it any wonder that some parents are reluctant to have others know their children’s diagnoses?
We really need to do a better job of educating the public.
The Yale Child Study Center is recruiting participants for a study and asked me to post this notice. The study has been approved by Yale’s Institutional Review Board:
I am writing to inform you of a pilot study at the Yale Child Study Center. The purpose of this study is to investigate the efficacy and dosing of a new extended-release form of guanfacine (trade name Intuniv®) for the treatment of tics in children with a Chronic Tic Disorder.
This study, funded by Shire Pharmaceuticals, is being conducted Yale and at two other research centers, New York University Child Study Center and University of Southern Florida. Guanfacine, which is primarily used to treat high blood pressure, has also been used to treat children with Tourette Syndrome (TS) and Attention Deficit Hyperactivity Disorder (ADHD). Although this drug has been used in TS with some success, the direct effect of the medication on tic severity has not been formally studied. In 2009, a new extended-release form of guanfacine was approved by the FDA for treatment. This pilot study will examine the efficacy and dosage of this new extended-release formula in hopes of finding a new medication to treat tics with limited adverse effects.
Eligible children are between the ages of 6 and 17, weigh at least 15 kg (33 lbs), and have a DSM-IV diagnosis of Tourette Disorder or a Chronic Tic Disorder (Chronic Motor Tic or Chronic Vocal Tic). Once enrolled, children will be randomly assigned to either the active treatment or placebo. Regardless of assignment, children will be placed in an 8 week treatment program of an increasing dosage with follow-up visits at 2 week intervals. Medication will be carefully monitored throughout the entire program. If necessary, the medication dose will be lowered or ceased.
After the 8 week treatment period, children will be assessed for treatment response. Children who were assigned to the active treatment and had a decrease in tic severity will be allowed to continue treatment for another 8 weeks. Children in the placebo control group who did not show any improvement will be given the option to try guanfacine for an 8 week period. During this extension phase, participants will be required to attend 2-4 additional follow-up visits.
With your help, we can complete this pilot study and contribute to the advancement of effective treatments for Chronic Tic Disorders. Enclosed is a brief information sheet describing the study. These flyers are not intended for general distribution to parents, but can be posted on bulletin boards or in common areas. Parents who express interest can be given a flyer.
If you have any questions or would like to discuss specific cases and referrals, please feel free to contact us at any time. Thank you for your attention.
Lawrence Scahill, MSN, PhD, Principal Investigator
You can download the flyer on the study here. If you’d like to participate or have questions, contact:
Clinical Research Coordinator
Tel: (203) 737-5317