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CBIT Explained, Part Three: Who Should Take CBIT?

In this blog series, Steve Pally, administrator of the TSFC Forum (www.tourettesyndrome.ca), explains the basics of CBIT, or Comprehensive Behavioral Intervention for Tics. See part one here and part two here.

CBIT is ideal for individuals who feel they have one or more bothersome tics (not a tic that bothers someone else, but rather a tic that causes the individual discomfort, distress or difficulty).

CBIT also requires a self-aware individual. Self-awareness in children matures at about the age of 10 (+/-2 years), at which time they become aware when they tic or are about to tic (the premonitory urge).

Unfortunately, trained and certified CBIT therapists are limited in number and can be difficult to locate. By contacting a local TSFC affiliate, you may learn if a CBIT therapist is practicing in your area. If there isn’t, let your own doctor or therapist know that CBIT training is available. When more people alert local medical professionals that CBIT therapy is needed, the number of competently trained CBIT therapists will increase.

References:
1) Cook CR, Blacher J. Evidence-based psychosocial treatments for tic disorders. Clin Psychol: Science and Practice. 2007;14(3):252–67
2) http://www.cdc.gov/ncbddd/tourette/treatments.html#CBIT
3) NJCTS Webinar April 23, 2014 Dr. Lawrence W. Brown MD, Pediatric Neuropsychiatry Program, The Children’s Hospital of Philadelphia
4) Behavior Therapy for Children With Tourette Disorder
5) Randomized Trial of Behavior Therapy for Adults With Tourette Syndrome
6) Canadian Guidelines for the Evidence Based Treatment of Tourette Syndrome Page 66

Major input from:
CBIT Training, Dr. Douglas Woods PhD, Professor and Department Head, Department of Psychology, Texas A&M University

IMG_0038-avatar--wAbout the blogger: Steve Pally was diagnosed with TS as an adult in his mid-forties. He has volunteered with TSFC for nearly three decades and currently co-administers the TSFC information and support Forum at www.TouretteSyndrome.ca. His interest in CBIT was sparked when he realized many of the strategies taught in a ten-week period in CBIT today were familiar to him, but took him decades on his own to discover them, as have many other adults with TS. That’s why he is eager to acquaint as many people as he can with CBIT so they can take advantage of recent developments for tic management.

CBIT Explained, Part Two: How Does CBIT Work?

In this blog series, Steve Pally, administrator of the TSFC Forum (www.tourettesyndrome.ca), explains the basics of CBIT, or Comprehensive Behavioral Intervention for Tics.

Studies published in peer reviewed journals have demonstrated the effectiveness of CBIT.

It’s thought to work by strengthening the neural pathways between the basal ganglia and the prefrontal cortex of the brain. The basal ganglia is the region of the brain where Tourette Syndrome is thought to originate by the spontaneous release of unwanted muscle actions, while the prefrontal cortex is the region of the brain where voluntary control over our actions occurs.

CBIT breaks the premonitory urge → tic → relief feedback cycle by implementing a Competing Response (CR), an action that’s less conspicuous than the tic itself and can be performed without any external aids or devices.

(Please note that even though behavioral therapies like those involved in CBIT can help reduce the severity of tics, this does not mean that tics are just psychological or that anyone with tics should be able to control them—tics due to TS are very much neurologically based and involuntary. CBIT is not  “Stop It” therapy, but rather “Do Something Else” therapy.)

In time, usually after a few of months of applying the CR combined with the other comprehensive components of CBIT, most children develop the ability to manage their tics to their satisfaction.

Having learned the techniques taught in CBIT, the child is then able, usually on their own, to develop their own CRs for other bothersome tics, and continue using the relaxation strategies and the knowledge gained from understanding their tic triggers to more effectively manage their symptoms throughout their lives.

Part three will be published tomorrow. See part one here.

IMG_0038-avatar--wAbout the blogger: Steve Pally was diagnosed with TS as an adult in his mid-forties. He has volunteered with TSFC for nearly three decades and currently co-administers the TSFC information and support Forum at www.TouretteSyndrome.ca. His interest in CBIT was sparked when he realized many of the strategies taught in a ten-week period in CBIT today were familiar to him, but took him decades on his own to discover them, as have many other adults with TS. That’s why he is eager to acquaint as many people as he can with CBIT so they can take advantage of recent developments for tic management.

CBIT Explained, Part One: What is CBIT?

In this blog series, Steve Pally, administrator of the TSFC Forum (www.tourettesyndrome.ca), explains the basics of CBIT, or Comprehensive Behavioral Intervention for Tics.

CBIT (pronounced see-bit) is a non-pharmacological treatment for Tourette Syndrome.

It combines six strategic therapeutic components in the form of a clinically proven, comprehensive therapy to help a person with Tourette Syndrome manage their tics, including:

  • Psychoeducation: Examining what situations tend to make tics worse and what situations make tics better. A person can then use this knowledge to avoid the situations that exacerbate their tics or find ways to lessen their impact. They might also seek out situations that lessen tic activity.
  • Self-awareness training: Learning to recognize signs that a tic is about to occur. Tics are usually preceded by a premonitory urge which is the key to knowing when a tic is about to be expressed.
  • Relaxation training: Acquiring strategies for minimizing stress and managing tics. Examples include deep breathing, progressive muscle relaxation and guided imagery.
  • Tic Analysis: Identifying a person’s most bothersome tic (Note: not the tic that bothers someone else, but rather the tic that causes the individual the most discomfort, distress or difficulty). A CBIT therapist helps the individual to recognize any premonitory urge or urges that precede that particular tic. They then break down the tic into its components (i.e., the precise muscle movements involved in the tic from start to finish).
  • Competing Response (CR)/Tic Blocker: Responding to the urge to perform a particular tic with an action that’s less conspicuous than the tic itself and can be performed without any external aids or devices. For example, if a person with TS has a tic that involves head rubbing, a new action might be for that person to place his or her hands on his or her knees, or to cross his or her arms so that the head rubbing cannot take place. Once a person identifies a CR for their bothersome tic, they perform the CR whenever they experience the urge to perform the bothersome tic, until the urge passes, usually in a minute or two.
  • Social support: Getting encouragement and assistance from family, friends and educators. Parents may have to advocate on their child’s behalf at school to alert teachers about a child’s needs. Positive reinforcement at home is also important for children. When a child employs the correct CR, they should be praised. If they happen to miss using the CR and the tic emerges, parents need to remind the child about using the CR, not in a punitive tone, but in a supportive and encouraging one.

CBIT does not cure Tourette Syndrome or eradicate tics; rather, it provides strategies to help manage tic symptoms and lessen their impact.

Parts two and three will be published this week.

IMG_0038-avatar--wAbout the blogger: Steve Pally was diagnosed with TS as an adult in his mid-forties. He has volunteered with TSFC for nearly three decades and currently co-administers the TSFC information and support Forum at www.TouretteSyndrome.ca. His interest in CBIT was sparked when he realized many of the strategies taught in a ten-week period in CBIT today were familiar to him, but took him decades on his own to discover them, as have many other adults with TS. That’s why he is eager to acquaint as many people as he can with CBIT so they can take advantage of recent developments for tic management.

Ask Dr. Ticcy: Should I Monitor My Other Son for Signs of TS?

Ask_Dr_Ticcy_LogoDear Dr. Ticcy,

What are the odds of two boys in the same family having Tourette? Our eight-year-old was recently diagnosed with TS and now we are noticing a lot of the same signs in our six-year-old. It’s only been going on for about a month and I know that a correct diagnosis of TS needs to have at least one year of tics. Should we continue to monitor?

Concerned Parent

Dear Concerned Parent,

While some families have only one child with TS, many families have multiple children with TS. This reflects the fact that TS is a genetic condition passed on from parent to child. Statistically, if a person has TS, they have a 5-15% chance of having a first degree relative (parent, child, or sibling) with TS. This means that your 6-year-old may have as high as a 15% chance of having TS given their sibling’s recent diagnosis. Keep in mind TS is not the only type of tic disorder and the other milder tic disorders are more heritable or common than TS. It could be that your son’s tics are due one of these other conditions. You can find more information on tic disorders other than Tourette on our blog here.

In order to be diagnosed with TS, a person must experience tics for more than one year (the year starts the day that the first tic appears). During this period, the person’s tics may wax and wane or come and go in frequency. The old diagnostic criteria stated that in order to be diagnosed with TS, a person must not have a tic-free period longer than three months. This is not included in the most recent set of diagnostic criteria (DSM-V) and it is therefore not considered by physicians during their assessment. Other important criteria including having more than one motor tic and one or more vocal tics that appear before the age of 18 (hence TS is considered a child-onset condition).

You may continue to monitor your six-year-old, keeping in mind that just because their sibling has TS doesn’t necessarily mean that they do, too. Record your child’s symptoms, including what they are, their frequency, and any potential triggers in a tic journal or log. Bring this information with you to future medical appointments. Additionally, remember that just like your older child, your younger one will require a referral if they are to see a specialist and specialists often have long wait times. You may want to factor this in by obtaining a referral and getting on the wait list sooner rather than later.

Finally, consider getting some support for yourself and your family. Locate your local TSFC Chapter to connect with families and resources in your community. The TSFC offers a number of supports and services including free e-counselling for parents, adults and young adults with TS and peer support groups. You may also want to consider purchasing some reading material like the TSFC’s book Understanding Tourette Syndrome: A Handbook for Families, which will help you to better understand TS and give you strategies for supporting your children.

If you have any questions, ask a local TSFC volunteer or contact the National Office at 1-800-361-3120 or tsfc@tourette.ca.

Sincerely,

Dr. Ticcy

Dr. Ticcy is a pseudonym for the TSFC National Office, which draws on information from experts across Canada and beyond to answer questions from the TS community. Please send your questions to tsfc@tourette.ca with the salutation “Dear Dr. Ticcy.”

Studies Confirm Exercise Effective As Tic Treatment

Is Exercise the Anti-tic Medicine We Don’t Take Enough Of? Studies Confirm Certain Exercises Help Tics Go Away.

Boy-weightsIn 2005, Drs. Leckman & Swain published a comprehensive work on TS called Tourette Syndrome & Tic Disorders: A Practical Guide to Diagnosis & Treatment. On the question of treatment, they noted that no ideal anti-tic treatment exists. Instead, challenging tics are best tackled with a multi-pronged approach that may include education, behavioural therapy, and prescription medication. Drs. Leckman & Swain mentioned diet and lifestyle, briefly acknowledging that while exercise is generally beneficial, its effects on tics are not well-studied and therefore not well understood.

Fast-forward six years to 2011: A case report detailing the use of physical exercise to treat TS, poor motor function, and pain in a 12-year-old boy is published in the Chang Gung Medical Journal. The article describes a young boy struggling with poor health for a number of reasons. He is overweight. He is having a hard time doing activities he enjoys due to pain and tightness. His mother is concerned about the negative impact of his tics on his daily life. Healthcare professionals prescribe exercise and fitness training.

Once a week for three months, the boy completes a two-hour fitness session of running, stretching, muscle strengthening, balance training, and upper-body coordination exercises. The results are very positive: reduced pain, increased flexibility, improved balance, and better writing skills. On top of that, the boys’ doctors note that their patient unexpectedly “had a reduction in the severity of his tics without taking anti-tic medication” (7).

Before concluding that exercise acts as anti-tic medication, there are a few important points to consider. In the case of the young boy, his physicians stressed that they didn’t simply prescribe exercise in general. They treated their patient with “individualized therapeutic exercises” that targeted his specific health challenges. Also, this was only one documented success story, and a single case of improvement does not a tried and true treatment approach make.

Fast-forward another three years to April 2014: Behaviour Modification publishes a Nottingham UK study about the impact of exercise on 18 young people with TS. The study compares the frequency of tics before, during and after exercise sessions, and finds significant reduction in the subjects tics both during and after physical activity. In addition, the participants experienced improvements in anxiety and mood.

With this kind of evidence, it seems reasonable to conclude that exercise is a promising form of tic treatment. If this is the case, the issue of lack of exercise, whether due to not having the time, money or motivation to exercise regularly, becomes an even bigger problem. Consider the stats. Statistics Canada’s Canadian Health Measures Survey found that two-thirds of adults and one-quarter of children are overweight or obese, representing a significant increase since the 1980s. Not surprisingly, as Canadians have become heavier over the past 25 years, we’ve also become much less physically active. Stats Can also reported that a whopping half of all Canadians (48%) aged 12 or older were inactive—defined as less than half an hour of walking per day—during their leisure time. It begs the question: if exercise is so good for us, why aren’t we doing more of it?

Do you find that exercise helps with either your TS or the TS of someone you know? What type of exercises do you find work best? Let us know in the comments below.

Sources:
Swain, James E. and Leckman, James F.  Tourette Syndrome and Tic Disorders Overview and Practical Guide to Diagnosis and Treatment.  Psychiatry (Edgmont). Jul 2005; 2(7): 26–36.

Wen-Yu Liu et al.  Health-related Physical Fitness Management for a Child with Tourette Syndrome. Chang Gung Med J Vol. 34 No. 6 (Suppl) 2012, 4-9.

Nixon et al. Reduced Tic Symptomatology in Tourette Syndrome After an Acute Bout of Exercise: An ObservationalStudy Behav Modif  April: 2014.

Statistics Canada, “Fitness of Canadian adults: Results from the 2007-2009 Canadian Health Measures Survey“, and “Fitness of Canadian children and youth: Results from the 2007-2009 Canadian Health Measures Survey“, part of Health Reports, Vol. 21, no. 1 (82-003-X, free), http://www.statcan.gc.ca/daily-quotidien/100113/dq100113a-eng.htmhttp://www.statcan.gc.ca/pub/82-003-x/2006008/article/phys/10307-eng.htm.

Landmark Study Reveals Impacts of Neurological Conditions on Canadians

nhcc_logoNeurological Health Charities Canada or NHCC, of which the Tourette Syndrome Foundation of Canada is a founding member, has just released a very important study—the first of its kind—detailing the impact of neurological conditions, including TS, on the estimated 3.6 million Canadians directly affected by them.

Among the dramatic highlights of the study are revelations that Canadians affected by neurological conditions:

  • Are five times more likely to experience unemployment than the general population;
  • Use healthcare services more than those affected by other chronic conditions;
  • Make up over half of those in home care or long term care facilities; and
  • Are twice as likely to report symptoms of depression than those without such conditions.

As well, over a third of the 177,000 Canadians who participated in the study reported that their family had experienced a financial crisis in the last year. If they had caregivers, those caregivers were twice as likely to experience distress than those caring for individuals without a neurological condition. The study also projected a two-decade spike in cases of Alzheimer’s disease and related dementias and Parkinson’s disease, as well as traumatic brain injury.

Says the NHCC:

The study provides rich new information about neurological conditions in Canada. It also highlights remaining knowledge gaps and identifies areas, which, if addressed, could significantly reduce the negative impacts of neurological conditions on individuals, families, health care systems and society.

Says Dr. Tamara Pringsheim, who sits on our Professional Advisory Board and is responsible for the Canadian Guidelines for the Evidence-Based Treatment of Tourette Syndrome,

The National Population Health Study of Neurological Conditions is unique in that it represents a collaboration between so many groups and individuals (e.g. patients, advocacy groups, health care leaders, researchers and other key stakeholders). The information generated from this important study has paved the way to help us improve neurological care and to guide future research needs in Canada and beyond.

We look forward to that future as we face the challenges of today in our Tourette community.

For more information and to read the study report, click here.

Deep Brain Stimulation, Part Three: Who’s a Good Fit for DBS?

The use of brain surgery to treat TS receives a lot of media attention; however, this coverage most often doesn’t go into detail about who is the right fit for it. There are a lot of factors to consider beyond simply whether or not a person’s tics are really severe.

You may read part one of this three-part blog series here and part two here.

DBS model

According to a recent article published in the Journal of Movement Disorders, there are nine or more important considerations made regarding the suitability of a candidate for Deep Brain Stimulation or DBS:

  1. Tics result in severe distress, self-injury, incapacitation, and/or disruption of quality of life.
  2. The patient is over age 25 (except in exceptional cases).
  3. Medication (usually at least three different types) has been tried and has failed.
  4. Patient hasn’t undergone treatment for any associated conditions or other medical condition(s) during the previous 6 months.
  5.  Botox injections have been considered, if possible.
  6. Any psychiatric disorders, including anxiety, depression and bipolar disorder, have been treated and stabilized.
  7. Patient has undergone screening for possible cognitive dysfunction and dementia.
  8. An expert, such as a psychiatrist or neurologist, diagnosed the TS.
  9. Patients were informed about the behavioral therapy treatment approach.

According to a several DBS experts, having a team of professionals from different fields who have experience with movement disorders is also critical. This team might include: a psychiatrist, neurologist, neurosurgeon, neuropsychologist, and in some cases, a social worker, occupational or physical therapist, and speech therapist. Experts recommend that this team meet to discuss the results of imaging (e.g. Magnetic Resonance Imaging). This model is similar to an approach used in cancer treatment (medical oncology boards).

Lastly, it’s important to remember that DBS is time-intensive. A commitment to give a lot of time—not just due to the procedure itself, but also because of the pre- and post- operative workups—is important to strengthen the chances for success. Consider that on average, a patient may need to return for device re-programming 4-8 times in the first six months! In short, DSB treatment is still far from being over once the person undergoes the actually surgery.

Overall, while DBS for TS is promising in certain cases, it is still a work in progress. Some patients who undergo the procedure may not benefit significantly. On the bright side, as research on DBS continues (countless DBS studies were published this year alone), medical professionals will come to better understand who with TS might benefit from DBS.

Source:

“Deep Brain Stimulation for TS” by Okun & Ward et al. Published in A Family’s Guide to Tourette Syndrome. Walkup, Mink & McNaught(eds.), Bloomington IN: iUniverse, 2012.

Deep Brain Stimulation, Part Two: New Data on Long-term Impact

The use of brain surgery to treat TS receives a lot of media attention. This three-part blog series will give you up-to-date information about this treatment approach. Stay tuned for part three, which will be published tomorrow. You may read part one here.

DBS model

Deep Brain Stimulation (DBS) is a surgical procedure that involves implanting an electrode in the brain, implanting a pulse generator in the upper chest, and running a cable under the skin to connect the two. Electric pulses from the generator pass through the cable to the electrode deep within the brain with the goal of neuro-modulating or moderating abnormal signals common to patients with treatment-resistant TS.

To date, there are almost 100 reported cases of people with treatment-resistant TS receiving DBS. Among the 100 cases, DBS targeted several different places in brain, with nine different locations stimulated in total.

A new study published this month documented 17 DBS cases over periods of one to four years, each targeting the same location in the brain (thalamic stimulation). Most of the patients experienced tic reduction post-DBS, which was on average about a 48.3% decrease in motor and 41.3% decrease in vocal tics.

An important finding from this particular study was that the reduction in tics tended to last over time. This was the longest study ever conducted on patients who had DBS for medically-intractable TS. The authors checked in with the patients one month, three months and then between 8-46 months later, depending on the patient. The average final check-in was at the two year or 24 month mark. The study concluded that the benefits of the procedure tend to last and be stable over several years up to four years’ time.

On balance, it is also important to note that eight of the 17 patients or 47% needed to keep taking medication even after their DBS surgery. Four patients had negative side effects including anxiety, infection, dizziness, poor balance and worsening of stuttering. Two patients asked to have the device removed.

If you are interested in reading this article, it’s available online here.

Source:

Sachdev PS, Mohan A, Cannon E, Crawford JD, Silberstein P, et al. (2014) Deep Brain Stimulation of the Antero-Medial Globus Pallidus Interna for Tourette Syndrome. PLoS ONE 9(8): e104926. doi:10.1371/journal.pone.0104926

Deep Brain Stimulation, Part One: How Does It Work?

The use of brain surgery to treat TS receives a lot of media attention. This three-part blog series will give you up-to-date information about this treatment approach. Part one will explain how the surgery works and how it might negatively affect someone with TS. Stay tuned for parts two and three, which will be published on Tuesday and Wednesday.

DBS modelA common question about Tourette Syndrome is about how it’s treated medically. At present, there is no one-size-fits-all answer. How much medical attention or treatment a person receives for tics depends on how the tics impact them—whether they are physically painful and/or make it difficult to function. For fairly minor tics, education and support are often enough. More severe tics can be treated with one or more prescription medications and/or behaviour therapy.

For a small number of people with TS, prescription medications have little effect. Their tics are extremely severe and both significantly and negatively impact their quality of life. On top of that, their tics are resistant to medications.

For these individuals, a relatively new surgical approach, called Deep Brain Stimulation or DBS, could be a potential treatment. DBS refers to the direct delivery of an electric pulse to the brain to help moderate abnormal signals associated with TS. The electric pulse comes from an electrode that is implanted directly into the brain and connected to a pulse generator via a cable or lead (pictured). The lead and generator are also surgically implanted within the body, with the lead running down the neck and skull, and over the collarbone and pulse generator sitting in the upper chest. Similar to a pacemaker, the generator has a battery and computer that send electric pluses directly to brain via the lead. The device settings—the size, voltage and frequency of the electric pulse—are all adjustable. The key question is, does DBS have the desired effect of decreasing or eliminating tics?

Again, the answer is complicated. DBS received a lot of positive media hype with some headlines hailing it as a life-changing treatment or even a cure for TS. There have been some positive outcomes in some cases. Within the medical community however, the reaction is mixed.

DBS is controversial partly because it’s so new (not a lot of studies or cases exist) and partly due to questions about side effects and effectiveness. The Canadian Guidelines for the Evidence-Based Treatment of Tourette Syndrome rates DBS as “Insufficient evidence to make a formal recommendation” for adults and “Not recommended” for children (see page 76 of the Guidelines for more information). These ratings reflect the lack of documented cases and studies on DBS as well as concerns that DBS benefits might actually come from natural waning of tics or the placebo effect rather than the device. Adverse effects like restricted daily activity due to energy loss, skin infection, nausea, vertigo and anxiety are also concerns.

As well, the surgery comes with risks. Current research estimates that infection due to DSB occurs in more than 5% of cases. The device has no blood supply. It or the electrodes can potentially damage a blood vessel, which can lead to bleeding or a stroke. DSB often affects one’s ability to get words out and it can worsen mood or cognition. In rare cases, suicidal thoughts result. Finally, depending on the way the procedure is performed, there may be an increased risk of problems with walking, talking and thinking.

For more information on DBS, stay tuned for parts two and three of this blog series.

Sources:

The Canadian Guidelines for the Evidence-based Treatment of Tourette Syndrome (2012)

A Family Guide to Tourette Syndrome (2012)

Parkinson’s Disease: Guide to Deep Brain Stimulation Therapy (2014)

 

Why Tourette and Not Tourette’s?

You’ve probably noticed that there are almost as many names for Tourette Syndrome as there are tics (well, maybe not quite that many). These include:

  • Tourette Syndrome
  • Tourette’s Syndrome
  • Tourette’s disorder
  • Gilles de la Tourette Syndrome
  • Tourette
  • Tourette’s
  • TS
  • GTS

images (1)

If you’re grammatically inclined, you may have wondered why some use the possessive form (Tourette’s), while others do not (Tourette), and whether it matters at all.

The truth is, what really matters is that our message reaches as many Canadians as possible: what TS is and what it isn’t. So long as these conversations are happening, that’s great. It’s what’s most important.

That said, we at the Tourette Syndrome Foundation of Canada always use Tourette, never Tourette’s. It’s our policy (we also never use terms like afflicted, victim, suffering, disease or Tourette child, but those are subjects for another blog post).

Many members of the medical community want to end the use of possessive markers (the ’s in Tourette’s) for the names of disorders, diseases and conditions entirely. Their view is that it’s cumbersome and inconsistent, especially when different terms appear in medical publications, and we agree.

The main issue with using Tourette’s is that Gilles de la Tourette, after whom the disorder named, didn’t even have Tourette Syndrome (unlike, for example, in the case of Lou Gehrig’s disease). Dr. Tourette was the first physician to report it. In this way, the possessive marker is inaccurate and misleading.

So we’re left with Tourette.

We recognize that many members of our community, as well as the public, are used to saying Tourette’s and will probably go on doing so for quite awhile. Again, that’s okay. We’ll all continue to make progress no matter what we call it.

The TSFC has chosen to reflect the current medical direction in our work as we strive to educate Canada about TS to the best of our ability. We hope you’ll join us in the years to come!