Diagnosis Genetics Tic Disorders TSFC Affiliates

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.”

Anxiety Children/Youth Tic Treatments TS Research

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.

NHCC TS Research

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.

Adults Deep Brain Stimulation Resources Tic Treatments

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.

Adults Deep Brain Stimulation Resources Tic Treatments

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

Adults Deep Brain Stimulation Resources Tic Treatments

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)

 

TS Awareness TS History TS Research

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!

ADHD Notable People with TS OCD Personal Stories TS Awareness

Our Favourite ‘Tourettic’ TED Talks


Jessica_ThomTED is a nonprofit devoted to sharing “ideas worth spreading” on a variety of topics through short, inspiring, live talks.

The TEDx Program shares TED’s mission and format, but TEDx Talks are organized independently by local communities.

In the spirit of sharing ideas worth spreading and raising awareness about TS, here is a list of recent TEDx Talks on TS and some of the conditions that make up the “plus” in TS+.

 

  • Overcoming Tourette’s Syndrome: Marc Elliot at TEDx Nightingale Bamford School

 

 

  • Tourette Does the Talking: Thomas White at TEDxUND

 

 

  • Tourette’s syndrome—the alchemy of chaos: Jess Thom at TEDx Albertopolis

 

 

  • Living with ADHD in the Age of Information & Social Media: Theo Siggelakis at TEDx QuinnipiacU

 

 

  • Nurturing OCD: Alex Meyers at TEDxCape

 

 

  • Anxiety Disorders & Panic Attacks: Alison Sommer at TEDx Carleton College

Adults TS Research

Help Us Make Workplaces TS-Friendly


peopleMany people tell the Tourette Syndrome Foundation of Canada (TSFC) that they are concerned about workplace discrimination. We are too!

The TSFC is committed to advocating for appropriate, improved and respectful treatment of people with TS in the workplace.

The first step in improving workplace conditions and reducing workplace discrimination is gathering information. We need to learn about what is happening in workplaces right now and what has happened in workplaces in the past.

To do this, the TSFC has joined forces with York University to create an anonymous, short, easy-to-use e-survey about what is like to have TS and work. This is where you come in.

We need your help in getting this survey filled out by as many people as possible.

Every time someone fills out the online survey, the TSFC’s ability to advocate for positive change grows stronger.

Help make sure that the rights of people with TS in the workplace are protected! It only takes a few minutes of your time!

If you are 18 years or old, have TS and are either working or have worked in the past, please click here: https://www.surveymonkey.com/s/tourettesurvey

If you know someone with TS who is 18+ and has work experience, please share the link with them.

Together we can create an empowered community in an inclusive Canada.

Adults Personal Stories Tourette Legacy Files Trek for Tourette TS History Volunteerism

Tourette Legacy Files, Part 1: Terry Ferguson


In this new blog series, we honour the men and women who helped the Tourette Syndrome Foundation of Canada rise from its humble roots and explore the events that shaped its history.

Terry was there from the beginning.

According to an early issue of The Green Leaflet (lovingly published in a Toronto basement using a hand roller press and carbon paper in March 1979), Terry was “one of the earliest to be diagnosed as having Tourette’s Syndrome in Canada.”

Mr. Ferguson was very open about his TS, and had up-to-date knowledge about neurological disorders other than his own. A passionate volunteer for the TS cause, Terry sat on the TSFC Board of Directors as well as “serving on the executive of the Gravenhurst Kinsmen Club,” an Ontario community in which he owned and operated The Muskokan Motel.

Terry was a very kind man, his presence being “a terrific morale booster for many of our members.” He loved photography and electronics. “An avid correspondent,” Mr. Ferguson was always “willing to exchange letters with any member.”

daddy & us

But Terry’s story and his legacy do not end there. The Green Leaflet reads: “Terry is a family man and is very proud of [his wife] Judy who stood by and dotes on his children, son Kenny and daughter, Heather, one year.” When Terry passed away, his family, including Heather and Kenny, now grown up, decided to honour his memory along with Terry’s friends by participating in the Trek for Tourette held in Bracebridge, Ontario.

Each March, this large group treks five kilometres through the crisp Muskoka air to raise funds for the TS cause that Terry so strongly believed in. Some bear the curious writing “VE3 TKF.” If you ask them, they’ll tell you it’s a reference to Terry’s call sign as a ham radio operator, his beloved pastime.

A100_1543

Trek For Tourettes Mar21 2010

Says his daughter Heather, now a proud parent herself:

Growing up with a father who had TS was ‘normal’ to me. I didn’t fully understand it at young age, however growing up I became aware of his physical tics and verbal slurs. When he became excited or anxious about a social gathering or event, his tics would increase. As I matured and understood TS more, I became proud of my dad. He plunged forward in life from a difficult childhood growing up with TS to falling in love, getting married, running his own business (with my Mom for 25 years) and raising my brother Ken and I. My dad was a father in a home full of unconditional love, support, humour and happiness.

We salute Terry Ferguson for his contributions to the TS movement and for being such an incredible role model for so many. May his spirit of volunteerism be an inspiration for other volunteers, current and future.

radio pic