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.

This volume includes an overview of tourette syndrome, including diagnosis; symptoms; and treatment, a look at controversies surrounding tourette syndrome, focusing on effectiveness of various treatment including diet, environmental factors, and deep brain stimulation, and personal stories of people living with tourette syndrome such a student that faces bullies, a woman who describes in detail the ‘anatomy of a tic’, and a concert pianist living with tourette syndrome.

One of the chapters in the book is based on material I had prepared for my other web site, SchoolBehavior.com.

Here is the book’s Table of Contents:

CHAPTER 1 Understanding Tourette Syndrome
1. Tourette Syndrome: An Overview — Belinda Rowland and Rebecca J. Frey
2. Tics and Tourette Syndrome Are Common Childhood Conditions — Leslie E. Packer
3. Coprolalia: The Cursing Tic — Lawrence Scahill
4. Tourette Syndrome May Occur with Related Conditions — Centers for Disease Control and Prevention

CHAPTER 2 Controversies Surrounding Tourette Syndrome
1. Various Drugs Can Help Control Tourette Syndrome — David Shprecher and Roger Kurlan
2. Behavioral Therapy Can Help Control Tourette Syndrome — Jeannine Stein
3. Identifying and Minimizing Enviromental Triggers Can Help Control Tourette Syndrome — Sheila Rogers
4. Dietary Changes Can Help Control Tourette Syndrome — Bruce Semon
5. Self-Hypnosis Can Help Control Tourette Syndrome — University Hospitals Case Medical Center
6. A Combination of Therapies Can Help Control Tourette Syndrome — Robert A. King and James F. Leckman

CHAPTER 3 Living with Tourette Syndrome
1. The Anatomy of a Tic — Beth Krah
2. A Teen Struggles with Coprolalia and Bullying — Austin
3. Seeking the Beauty of Stillness — Annette Racond
4. A Student Uses Humor to Teach About Tourette Syndrome — Holly Leber

You can find additional information here.

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.

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 study used the largest sample to date to examine the relationship between key deficits associated with ASD and attainment of phrase and/or fluent speech following a severe language delay, characterized by a child not putting words together into meaningful phrases by age four. As a common milestone of speech development, phrase speech is defined as using non-echoed three-word utterances that sometimes involve a verb and are spontaneous meaningful word combinations; whereas fluent speech is defined as the ability to use complex utterances to talk about topics outside of the immediate physical context.

“We found that nonverbal intelligence was the strongest predictor of phrase speech, while social interest and engagement were as robust, if not greater, when predicting the age that children attained phrase speech and fluent speech,” said Ericka L. Wodka, Ph.D., a neuropsychologist in Kennedy Krieger’s Center for Autism and Related Disorders and lead study author. “Children with typical nonverbal intelligence attained language almost six months ahead of those with scores below the average.”

These findings reinforce that core abilities, such as nonverbal intelligence and social engagement, have a greater influence on the development of communication than other behaviors associated with ASD, such as repetitive and abnormal sensory behaviors. “Our findings continue to support the importance of considering both nonverbal intellectual level and social communication in treatment planning, highlighting the differing impact of these factors as related to treatment goals,” said Dr. Wodka.

Data for this retrospective study were from the Simon Simplex Collection (SSC), a unique multi-site database project that gathers biological and phenotypic data on children with ASD aged four- to eighteen-years-old without a previous genetic history of ASD. The database establishes a permanent repository of genetic samples from 2,700 families, each of which has one child affected with an ASD and unaffected parents and siblings.

From the SSC, a total of 535 children, ages eight years or older, were studied. Using the Autism Diagnostic Interview-Revised (ADI-R), a standard parent-interview that distinguishes children with ASD from non-ASD populations, and the Autism Diagnosis Observation Schedule (ADOS), a clinician-administered observation that assesses social, communicative and stereotyped behaviors, researchers selected children because they either had no phrase speech at their time of enrollment in the SSC or their phrase speech onset occurred after age four. Based on ADI-R results and their language presentation, children in this study were administered one of four evaluation modules – no words or single words (Module 1), phrase speech (Module 2) or fluent speech (Module 3 or 4). Of the 535 participants in the study, 119 children mastered phrase speech and 253 children were speaking fluently by their eighth birthday, while 163 children never attained phrase or fluent speech

“We hope the results of this study empower parents of children with autism and severe language delays to know that, with the appropriate therapy, a child will likely make significant gains in this area over time; however, progress should be expected to be slower for those children with lower intellectual abilities,” said Dr. Wodka. “Additionally, we hope these findings provide clinicians with better defined therapeutic targets for their patients with autism.”

Future longitudinal studies, including both simplex and multiplex families, are required to fully capture the prevalence and predictors of language development in children with ASD. Additionally, further research into the impact of social cognition strategies (e.g., perspective taking) on the development of language, as well as the relationship among specific social deficits and fluent speech development, may hold important implications to the design of intervention.

Source: Kennedy Krieger Institute

Thanks to Sue Marinez for alerting me to this report.

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.

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)

—–
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.

In a study published in Psychiatry Research, Drs. Chen, Budman, Diego Herrera, Witkin, and their colleagues looked at the rate of explosive outbursts in two samples of individuals with TS and comorbid disorders. One sample, consisting of 114 individuals, was from the U.S. and the second sample was from Costa Rica (CR).

From the abstract (emphasis added by me):

Twenty percent of participants had explosive outbursts, with no significant differences in prevalence between the CR (non-clinical) and the US (primarily clinical) samples. In the overall sample, ADHD, greater tic severity, and lower age of tic onset were strongly associated with explosive outbursts. ADHD, prenatal exposure to tobacco, and male gender were significantly associated with explosive outbursts in the US sample. Lower age of onset and greater severity of tics were significantly associated with explosive outbursts in the CR sample. This study confirms previous studies that suggest that clinically significant explosive outbursts are common in TS and associated with ADHD and tic severity. An additional potential risk factor, prenatal exposure to tobacco, was also identified.

I’m somewhat surprised that OCD and mood disorders weren’t also significantly correlated in their sample, but I haven’t seen their sample descriptions to know how much data they had on OCD and mood. Other than that, their results are  generally very consistent with what I’ve seen in my clinical practice.

Carousel image: There are multiple pathways to a “storm.” From Challenging Kids, Challenged Teachers, copyright 2010. All rights reserved.

•  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.

Not only is punishing a child for their symptoms inappropriate and generally ineffective, but recess is important for academic performance and social development, as well as physical development.

A new policy statement from the American Academy of Pediatrics, “The Crucial Role of Recess in Schools,” makes it clear that recess should not be withheld as punishment or sacrificed to academic instruction:

Recess is at the heart of a vigorous debate over the role of schools in promoting the optimal development of the whole child. A growing trend toward reallocating time in school to accentuate the more academic subjects has put this important facet of a child’s school day at risk. Recess serves as a necessary break from the rigors of concentrated, academic challenges in the classroom. But equally important is the fact that safe and well-supervised recess offers cognitive, social, emotional, and physical benefits that may not be fully appreciated when a decision is made to diminish it. Recess is unique from, and a complement to, physical education—not a substitute for it. The American Academy of Pediatrics believes that recess is a crucial and necessary component of a child’s development and, as such, it should not be withheld for punitive or academic reasons.

You can download the full policy statement from the AAP here (.pdf).

1.  Start the conversation.  If you don’t start the conversation, their first source of information may frighten them more.  Start by asking them if they have heard anything about what happened at an elementary school on Friday.  Avoid asking, “Have you heard about the tragic  shooting at a school?” or anything that would start out by elevating the level of emotion.  If they say they’ve heard something, ask them what they’ve heard and then begin to calmly tell them the facts.

You do not want to tell them everything at this point – providing too many details can flood the child and make them fearful. Try to keep your emotions in check so as not to overwhelm your child.  For some of us, this will be the hardest part as we have been crying ourselves and find this incomprehensible or overwhelming.  At this point you need to be focusing on your child and not your own feelings.  Turn the TV off when your children are around because if they see you responding to this with intense emotion and absorption, they will, too.

2. Give them information that is age-appropriate for them. I would not tell pre-schoolers about the tragedy at all, but for elementary school-age children or older, tell them what happened:  a young man got into an elementary school and started shooting teachers and children.  You do not need to tell them right away how many children died. Wait to see if your child asks you. Take your cues from your child’s reactions: if they ask you questions, answer them calmly, but do not give them more information than they are asking for at this point. This is your first conversation about what happened, and they may come back to you numerous times with other questions or concerns.  Each time, calmly answer their questions but do not give them more than what they are asking for.

3. Give them an opportunity to express their feelings about what has happened and what you are telling them. Avoid implanting strong emotions. If you say, “It’s tragic” or “It’s so awful,” your child will adopt your emotional response.  Do not be surprised if young children do not respond as strongly emotionally as you do. Their focus may be on “How does this affect me?” Help them express their emotion.  Children can do things to express their own feelings and to offer comfort to others.  Would they like to do a drawing for themselves? Young children can often express and work through their emotion that way.  Would they like to write “Sandy Hook” on a balloon and then go to a beach or park and release the balloon to release their sadness? Older children may want to send a letter to the children of Sandy Hook to express sympathy or comfort and  can send letters to Sandy Hook, 912 Dickinson Dr., Sandy Hook, CT 06482.  Or perhaps your child might like to go plant something in your garden to remember and honor the children who died. We don’t want to encourage them to overfocus on grief or worry, but do encourage them  to express their emotions and support them in a way that is appropriate for them.   Do not push your child to do any of these things, but be prepared to suggest them if your child seems to be having a difficult time expressing sad or worrying feelings.

4. Reassure your child that they will be kept safe.  This is probably the most important tip I can give you. It is understandable that your child might react by thinking, “What if this happened in my school?”  Tell your child that what happened in Newtown is a very unusual event and  that their school has always kept them safe and will continue to keep them safe. For older children, reassure them but you can add that all schools are working to learn from what happened in Newtown to make their own schools even safer.  If your child expresses concern about going back to school on Monday and wants you to take them, tell them that you will take them on Monday so they can see that their school is safe.

5.  Be prepared.  Young children cannot hang on to sadness or intense feelings for long. After a few minutes, your child may ask, “Can I go out and play” or “Can I go watch my show?” That does not mean your child has no empathy. It means that they are doing what children do – thinking about themselves and their needs.  So yes, let them go out and play or watch their show if you normally would.  Remember that this is just your first conversation with them, and we do want them to learn that even when there’s bad or sad news, life goes on.  Keeping your child in their normal routine will help them cope with the news.

6. Monitor your child afterwards.  Many of our children have OCD, anxiety, or depressive symptoms already.  If your child appears to be thinking about the Newtown tragedy too much in the week or weeks to come, if they suddenly become more clingy or demanding, or if they resist going to school,  they may need more help coping with it.  Keep the lines of communication open, but if you see significant mood or behavior changes, do not hesitate to contact your child’s psychiatrist, psychologist, or pediatrician.  Their school psychologist can also be a helpful resource for children who are having difficulty coping.

Carousel image credit: Image credit: In this photo provided by the Newtown Bee, Connecticut State Police lead children from the Sandy Hook Elementary School in Newtown, Conn., following a reported shooting there Friday, Dec. 14, 2012.  (AP Photo/Newtown Bee, Shannon Hicks)  

The U.S. Food and Drug Administration has sent a warning letter to the Judge Rotenberg Educational Center in Canton, Mass., saying the Graduated Electronic Decelerators it uses to shock patients with autism and severe behavioral disabilities are in violation of FDA regulations.

The FDA says it has twice before notified the Center, on May 23, 2011, and June 29, 2012, that because changes were made to the device since it was approved, the center must file a new application for approval with the FDA. The Judge Rotenberg Center is the sole manufacturer of the GED device, and it is the only facility in the U.S. that uses it. The latest letter from the FDA was dated Dec. 6.

Read more here.

If the devices have been out of compliance with FDA regulations for a while, why didn’t the FDA shut down their last year after JRC reportedly failed to respond appropriately to their May 2011 notification? This federal agency is supposed to be protecting health. And when did they first find out that JRC was using out of compliance devices?

In related news, the U.S. Department of Justice Office of Civil Rights informed me several months ago that its 2010 “routine investigation” of JRC’s use of shock on disabled residents was still under investigation. That can mean a couple of different things, one of which is that they’re trying to negotiate something with JRC to avoid having to take them to court. Alternatively, it could mean that they’re just really slow and not rushing or making this investigation a priority.

When the health and welfare of children and disabled adults may be at risk, the government should be moving much faster than it has to date.

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.

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But all my young patients have returned to therapy, and it’s been interesting to hear how they and their families managed to cope with being without power and having their lives disrupted.

Now you might think that kids with a lot of OCD or anxiety problems would get even more anxious under unplanned and unpredictable circumstances, right?  Well, you’d be wrong.  As I saw after 9/11, kids with anxiety disorders actually did really well – as well as their non-anxious peers, anyway.  Most of the adults in my practice also reported no exacerbations in anxiety during the long power outage, although they reported more frustration and anger, as one might expect, since the adults were dealing with the power company and the children weren’t.

One of the things we also learned was that being without internet and electronics turned out to be a Very Good Thing.  Kids and teens in my practice reported that at first, they felt somewhat disconcerted or at a loss without their usual activities and online interactions, but after a while, they realized they were actually less stressed and more relaxed without all the internet and electronics.  Some found other ways to amuse themselves, like reading or going out more to play on the street during daylight hours when they might otherwise have been indoors on the computer.

Of course, having no school may well have contributed to their less anxious state, but it’s interesting that they uniformly reported feeling better without so much internet and electronics.

Now the trick is for us to capitalize on that awareness.

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