Dr. Cathy Budman in collaboration with the Feinstein Institute for Medical Research at North Shore LIJ are recruiting teens with tics for a new study on the potential effectiveness of PSYRX101, a synthetic drug, where the active ingredient is Ecopipam. Details of the study and criteria for participation can be found on the Research Studies Seeking Participants page in the section on Tourette Syndrome.
Investigators at the Yale Child Study Center are recruiting teens with tics for a new study on the potential effectiveness of biofeedback in reducing tics. The purpose of this study is to determine whether individuals can gain control over a region of their brain known as the supplementary motor area when provided with feedback about activity in that brain region, and to investigate if increased control over the brain area translates into an improvement in tic symptoms. Details of the study can be found on the Research Studies Seeking Participants page in the section on Tourette Syndrome.
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)
It’s annual review time in many school districts throughout the U.S. And while many states now have computerized systems for generating Individualized Education Programs (IEPs), the programs are often sorely lacking in addressing the many kinds of deficits students with Executive Dysfunction (EDF) experience.
Remembering that our goal is to prepare the student for independent functioning post-school, it is not enough to lend them our frontal lobes to chunk their work or to prioritize it for them. We need to teach them how to generate prioritized to-do lists, how to monitor their progress towards a goal, how to pace themselves, how to plan, how to sequence, how to organize their materials, time, and space, etc.
It’s a lot. And we need to ensure that we have goals for each deficit area. So here are some terrific resources to help you formulate goals, objectives, and accommodations for students with EDF:
Tigers, Too: Checklists for Classroom Objectives and Interventions (Dornbush & Pruitt, Parkaire Press, 2010). Tigers, Too Checklists provides an easy format to identify necessary and appropriate goals for the student. The book is a supplement to Tigers, Too: Executive Functions/Speed of Processing/Memory – Impact on academic, behavioral, and social functioning of students with ADHD, Tourette syndrome, and OCD: Modifications and Interventions by the same authors (2009).
Need some accommodation ideas for students with EDF in a convenient format organized by issue? See my book, Find a Way or Make a Way: Checklists of Helpful Accommodations for Students with Attention Deficit Hyperactivity Disorder, Executive Dysfunction, Mood Disorders, Tourette’s Syndrome, Obsessive-Compulsive Disorder, and Other Neurological Challenges (Packer, Parkaire Press, 2009). This book contains some of the great classroom accommodation ideas that are explained in more detail in Challenging Kids, Challenged Teachers (Packer & Pruitt, 2010).
A study approved by Vanderbilt University is offering parents of students with disabilities the opportunity to share their experiences in working with the schools.
Parents are asked to complete a survey about: themselves, their children, and their relationship with the school.
To participate in the survey, please go to the secure survey address on Vanderbilt’s site.
If you have any questions about the study, you may contact the senior investigator, Meghan Burke or call (615) 585-1420.
There’s a new report from the CDC of a significant increase in the percentage of children who are, or who have ever been, diagnosed with Attention Deficit Hyperactivity Disorder. They now estimate that 9.5% of youth either are diagnosed with ADHD or have been at some point.
Some of the other significant findings are that of those with current ADHD, nearly half (46.7%) have mild ADHD, with the remainder having moderate (39.5%) or severe (13.8%) ADHD. Not surprisingly, ADHD continues to be diagnosed more than twice as often among boys as girls (13.2% versus 5.6%). Among children with current ADHD, 66.3% were taking medication for the disorder.
The biggest increases in diagnosed cases were for older teens, multiracial and Hispanic children, and children with a primary language other than English.
The study is creating quite a buzz, and you can read their report here (see pp. 1439-1443 for the study).
For other articles and resources on ADHD, see the ADHD section of this web site.
TOURETTES UNCOVERED profiles four different children living with the burden and stigma of Tourette Syndrome. In this world-premiere hour-long special, Discovery Health follows Jaylen, Marques, Jonah and Colin and their families as they learn to cope with this mysterious and often misunderstood condition.
The documentary premiers Sept. 13, 2010 at 9 pm. Check your local cable provider for the Discovery Health Channel. “Tourette’s Uncovered” will also be replayed at 11:00 pm on September 13 and again on September 15 at 10:00 pm. You can check the TSA Facebook page for updates on future airings on Discovery Health and The Learning Channel (TLC) as well.
You can find more about the four children on TSA’s web site.
Looking for some tips on how to help your child get off to a good start this year? I’ve posted a series of tips over on the companion blog. Find tips on what to tell your child’s teacher, re-establishing sleep and wake-up routines, boosting homework compliance, clothing and lunch issues, and helping your child if they are anxious about getting lost in a new school. More tips to come!
Remember that the companion blog is interactive. You can add your own tips to share with other parents or ask a question or discuss any of the topics covered on the site.
The main part of the web site is not interactive, but I’ve also created a companion blog, the Tourette Syndrome “Plus” Blog, where I post new research on the disorders covered on this site. I also post advocacy news in education, announcements of upcoming events, discussions of upcoming changes in the diagnostic criteria for the disorders, and controversies of interest to parents. Anyone can read the blog or get the news feed from the blog. If you’d like to comment on the blog, registration is free. Hope to see you there!
Checklists of Helpful Accommodations for Students with ADHD, Executive Dysfunctions, Mood Disorders, Tourette’s Syndrome, OCD and Other Neurological Challenges. Available from Parkaire Press.
If you need help preparing for a 504 or an IEP meeting, this guide with reproducible checklists may be just what you need. In it, you will find checklists of accommodation strategies for tics, obsessions and compulsions, medication side effects, mood disorders, homework hassles, handwriting issues, etc. Bring a copy to any team meeting so that the team can look at all of the ideas for each challenge and determine which ones to try for your child.