Research study at Yale recruiting teens with tics

Investigators at the Yale Child Study Center are conducting research on the potential effectiveness of brain activity biofeedback in reducing tics.  The study has received institutional review board approval.  I am posting the text of the recruitment notice they sent to me:

I am writing to tell you about a new study testing an investigational biofeedback treatment for Tourette Syndrome and Chronic Tic Disorder that will be conducted at the Yale School of Medicine.   As a care provider, you may wish to consider whether this novel treatment, and registered clinical trial, could benefit adolescents presenting with Tourette Disorder or Chronic Tic Disorder.  We are currently recruiting adolescents aged 11-19 who have active tics.

In collaboration with the Yale Child Study Center, this multi-departmental and NIH-funded study is led by Dr. Michelle Hampson in the Department of Diagnostic Radiology. 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.

Participation in this study does require a substantial commitment of time. Over a period of approximately one month, participants will be asked to come to the Yale School of Medicine for eight visits, seven of which will involve a functional magnetic resonance imaging (fMRI) session.  Participants will receive financial compensation for their time and those that live more than 30 miles away may be eligible for travel reimbursement.  The payment for each fMRI session is $80; these typically take around an hour. We also pay $20 per hour for clinical assessments, etc, that are conducted over the course of the study. We estimate that those who complete the study will receive approximately $600 total for their participation (not including any travel reimbursements).

I hope you will share information about this study with anyone who may be interested and eligible. I have enclosed an additional sheet detailing inclusion and exclusion criteria for the study as well as a recruitment flyer that could be posted on a bulletin board, or shared privately with potential participants and family members.  In addition to those who currently qualify we are also interested in individuals who are likely to meet criteria before the study concludes in 2017.

You can download a copy of the flyer for the for the study with their contact information  here.  The inclusion/exclusion criteria for the study are:

Inclusion Criteria:

• Diagnosis of Tourette Syndrome or Chronic Tic Disorder
• currently active tics
• aged 11-19
• ability to execute most common tics without moving head while lying on back

Exclusion Criteria:

• Blindness (because feedback is provided visually)
• Lifetime diagnosis of pervasive developmental disorder, bipolar disorder, or psychotic disorder.
• Presence of any serious psychiatric or psychosocial condition requiring initiation of new treatment or change in current treatment.
• Unwillingness to keep medication stable over the course of the intervention
• Neurological conditions affecting central nervous system
• Change in medication in the month prior to beginning the study
• Full braces (but some retainers are OK)
• Claustrophobia of a degree that they cannot comfortably be scanned
• If common tics involve dramatic changes in breathing that could alter blood oxygenation measurements
• Inability to keep head still while executing most common tics
• Inability to keep head still in mock scanner
• Inability or unwillingness to understand or follow the instructions
• Pregnancy or possible pregnancy
• Subjects may also be excluded after the first MR scan if we are unable to localize a region of their supplementary motor area involved in tics – leaving us without a target area for biofeedback.

New book for your reference shelf 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)

The book is available now from Oxford University Press here, or you can order it from Amazon.

Another Restless Night or Something More?: Five Signs of Sleep Disorders in School-Age Children with Special Needs

From the Kennedy Krieger Institute:

While sleep disturbances are common in all children at some point during childhood, the National Association of School Psychologists estimates that as many as 30 percent of children have restless nights serious enough to be diagnosed with a sleep disorder. For children with special needs, the likelihood of sleep disorders is even higher, due to factors such as physical and behavioral differences, and even side-effects from medication.

Left untreated, sleep disorders can exacerbate existing conditions or cause additional health problems. While not all children with special needs who experience sleep disturbances will be diagnosed with a sleep disorder, experts point to early detection of common signs as the key to improving sleep.

According to Dr. Jennifer Accardo, director of the Sleep Disorders Clinic and Lab at the Kennedy Krieger Institute in Baltimore, Md., parents know their child’s sleep patterns best and are often able to spot a more serious problem if they know the signs.

Signs of Sleep Problems in Children with Special Needs

1. Snoring. Children who struggle to breathe or who noisily pause, gasp or choke in their nighttime breathing are at risk for obstructive sleep apnea. This treatable condition prevents a child from achieving deep, restful sleep and often results in daytime attention and behavior problems.
2. Difficulty falling or staying asleep. Everyone has problems now and then, but chronic difficulty falling or staying asleep can make it hard for children to stay alert and focused during the day. Even children can have insomnia, and those with disabilities tend to struggle the most.
3. Sleepwalking, night terrors and other nighttime activities. At some point, many children walk, talk or cry out in their sleep. Doctors call these occurrences parasomnias and if they happen often or over a long period of time, parents should seek help to find potential triggers.
4. Sleeping too much. Children who have trouble waking up in the morning, getting to school on time or falling asleep during class have clear signs of a sleep problem.
5. Needing parents to be in the room to fall asleep. If children are unable to fall asleep without their parents in the room, then it may be time to seek guidance.

“While a good night’s sleep is important for all children, it is especially critical for children with special needs,” says Dr. Accardo. “Parents can make small changes at home to help their child get a better night’s sleep and improve their performance in daytime activities, therapies and social interactions.”

Tips to Improve Sleep Patterns

1. Make sleep a priority. Without a good night’s sleep, children may have difficulty participating fully in activities such as homework, sports and therapies.
2. Develop a bedtime routine. Everyone needs this, even adults! A short set of calming activities helps children “wind down” to be ready for sleep.
3. Keep schedules consistent between weekdays and weekends.Kids who stay up later and sleep in on weekends may find it hard to return to their regular schedules during the school week.
4. In fact, keep schedules consistent every day! Going to bed and waking up around the same time daily trains your brain to account for the hours you need for other regular activities.
5. Make the bedroom a restful place. TV and video games are not only distracting in the bedroom, but they also produce bright light that signals the brain to wake up.
6. Sleep in the same place every night. Children who sleep on the couch, on the floor or in different beds have more trouble developing good sleep habits.
7. Avoid caffeine. Caffeine in sodas, teas and coffees can keep children and adults awake.
8. Put your child to bed when they are sleepy, but not yet fully asleep. Self-soothing is a fundamental skill for children. Putting children to bed before they are completely asleep gives them an opportunity to develop this skill.
9. Address anxiety. Anxiety commonly affects children with disabilities, and makes sleep difficulties worse.
10. Take note of sleep problem signs. Tracking patterns and signs can help your pediatrician or a sleep expert to more quickly identify the problem and offer solutions.

“If parents are concerned about their child’s sleep patterns and behaviors, they should consult with their pediatrician or a sleep expert,” says Dr. Accardo. “Sleep evaluations can be extremely beneficial in identifying causes and ultimately improving sleep for the entire family.”

For more information on sleep disorders in children with specific diagnoses, see this overview on sleep disorders I wrote in 2009, and find other helpful information and tips in the Sleep Disorders section of the main site, www.tourettesyndrome.net.

The Tale of the Purple Dog

Living with neurological challenges and learning problems can be a lot for a child to cope with, and some may start to feel stupid or bad about themselves.

One of my young patients kept referring to himself in negative terms and his self-esteem was down in the dumps.  So one day, after he had resisted standard cognitive-behavioral strategies, I decided to try another approach and took him out to my waiting room, which is filled with art by the very talented Daniel Patrick Kessler.

I pointed to one of the images, Celebrating Diversity II, and asked him what he saw.

We talked about the painting, and how even though each dog was a different color, they were all dogs. Different, but same. Same, but different. And didn’t all the colors make things more fun?

“Would it be kind of boring if they were all the same color?” I asked.

“Yes,” he replied.

“So…. which dog are you?” I asked him.

He looked at the painting for a minute and then said, “I’m the purple dog.”

Since that day, he humorously refers to himself as The Purple Dog. His parents affectionately call him The Purple Dog, too, but most importantly, he’s accepted that while he’s different from other dogs, he’s still a dog, and a fun one at that.

That one exchange changed his outlook. His mood improved and he started doing better in school. He no longer refers to himself as a “stupid r—–.” Now he refers to himself with pride as “The Purple Dog.”

“The Purple Dog” wrote about some of his experiences, and with his permission and his parent’s, I’m reproducing his story here:

Once there was a purple dog. This dog was always made fun of and he had very little confidence in himself. He thought of himself as low and had very little value. All the other dogs were regular dog breeds such as dalmatians, golden retrievers, pugs etc. so the purple dog was made fun of because he was different.

The purple dog wished and prayed every single day that he wasn’t different because he hated being laughed at by the other dogs. The purple dog usually stayed at home when all the other dogs were hanging out and having fun. The purple dog also had trouble in mathematics so the other dogs used to call him stupid. Unfortunately the purple dog didn’t have the confidence to try harder in math because he had such low self esteem. The purple dog had no friends because all the other dogs laughed at him and called him stupid.

However one day when the purple dog tried to play soccer he was simply brilliant at it. Then he tried the tenor saxophone and he was brilliant at that too. He joined his school band and he captained his school soccer team.

He did phenomenal in school after that because his confidence was high. Everyone thought he was worthless but he proved them wrong!!!!!!! He made a ton of friends later after he realized that he was the Purple Dog – unique and special in his own way!

Thank you, Purple Dog, for sharing your story. And thank you, Daniel Patrick Kessler, for helping celebrate diversity and for giving me a tool to help a young child appreciate that although he’s different in some ways, he can be proud of who he is.

Can brain imaging accurately diagnose chronic neuropsychiatric disorders?

This may be the most exciting research report I’ve read in years, and happily for everyone, it’s available for free online in full-text version. The authors of the study are Ravi Bansal, Lawrence H. Staib, Andrew F. Laine, Xuejun Hao, Dongrong Xu, Jun Liu, Myrna Weissman, and Bradley S. Peterson:

Here’s  part of the Abstract from their report, below. This is obviously somewhat technical, but I know that some of my blog readers aren’t afraid to tackle the more technical research:

METHODS:

We have developed an automated method to diagnose individuals as having one of various neuropsychiatric illnesses using only anatomical MRI scans. The method employs a semi-supervised learning algorithm that discovers natural groupings of brains based on the spatial patterns of variation in the morphology of the cerebral cortex and other brain regions. We used split-half and leave-one-out cross-validation analyses in large MRI datasets to assess the reproducibility and diagnostic accuracy of those groupings.

RESULTS:

In MRI datasets from persons with Attention-Deficit/Hyperactivity Disorder, Schizophrenia, Tourette Syndrome, Bipolar Disorder, or persons at high or low familial risk for Major Depressive Disorder, our method discriminated with high specificity and nearly perfect sensitivity the brains of persons who had one specific neuropsychiatric disorder from the brains of healthy participants and the brains of persons who had a different neuropsychiatric disorder.

CONCLUSIONS:

Although the classification algorithm presupposes the availability of precisely delineated brain regions, our findings suggest that patterns of morphological variation across brain surfaces, extracted from MRI scans alone, can successfully diagnose the presence of chronic neuropsychiatric disorders. Extensions of these methods are likely to provide biomarkers that will aid in identifying biological subtypes of those disorders, predicting disease course, and individualizing treatments for a wide range of neuropsychiatric illnesses.

You can download the full article (.pdf, 4.2M)

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Citation: Bansal R, Staib LH, Laine AF, Hao X, Xu D, et al.(2012) Anatomical Brain Images Alone Can Accurately Diagnose Chronic Neuropsychiatric Illnesses. PLoS ONE 7(12): e50698. doi:10.1371/journal.pone.0050698

Editor: Wang Zhan, University of Maryland, United States of America
Received April 18, 2012; Accepted October 25, 2012; Published December 7, 2012
Copyright: 2012 Bansal et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

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