Tourette Syndrome Forum http://www.tourettesyndrome.ca/ Tourette Syndrome Foundation of Canada Support and Information Forum en Fri, 18 May 2012 06:44:52 GMT vBulletin 60 http://www.tourettesyndrome.ca/images/tsfc/misc/rss.png Tourette Syndrome Forum http://www.tourettesyndrome.ca/ Magnesium and B-Complex Supplements. http://www.tourettesyndrome.ca/showthread.php?6231-Magnesium-and-B-Complex-Supplements&goto=newpost Wed, 16 May 2012 21:07:39 GMT Hello, new to this forum. My daughter is 11 years old and has had tics on and off since she was about 7 years old. The tics took quite a long... Hello, new to this forum.

My daughter is 11 years old and has had tics on and off since she was about 7 years old. The tics took quite a long hiatus in 2011. With very little activity. Before that there were some moderate tics.

This past March she caught a bad cold with bronchitis. Very bad cough. Well, the cold went away, but the cough remained. And it was so bad that she would cough loudly about 2 times per minute. All day. We finally concluded that it wasn't a long lasting infection/cold/virus. But that she had developed a habit cough/tic from her cold.

I mean it was very disruptive to all around her. Us, at school etc... Finally I just told her to try to take a deep breath every time she felt the need to cough.

Well guess what, that was a mistake because then she developed a new tic that had her taking a really deep breath/sigh.

So, my wife and I am at our wits end here. So, I finally looked up on the internet on some possible homeopathic remedies.

My plan of attack was to first try for a month to give her magnesium and B-complex vitamins every morning. And if that didn't do it. Add the tic tamer homeopathic drops to the regimine. I didn't want to try too much at once. Because, I wanted to see both of those affects seperately. I bought both the supplements and the tic tamer.

Well she has been taking the Magnesium and B-complex supplements since this past thursday 5/10. And, believe it or not, they are working well. Her cough frequency has been reduced to almost no cough at all. And the breathing/sigh tic is almost gone as well.

I really am totally shocked this strategy worked. For now the tic tamer will have to sit on the shelf for another day. I am really being cautiously optimistic for now. Because I really cannot believe such a simple solution would work for a supposedly complex health issue.

Just thought I would share. :smile: ]]> General Support and Advice brianmayeux http://www.tourettesyndrome.ca/showthread.php?6231-Magnesium-and-B-Complex-Supplements Daughter newly diagnosed and I have so many questions with TS plus! http://www.tourettesyndrome.ca/showthread.php?6230-Daughter-newly-diagnosed-and-I-have-so-many-questions-with-TS-plus%21&goto=newpost Wed, 16 May 2012 20:45:15 GMT Hi, my daughter was just diagnosed on Thursday with Tourette. I am trying to read all that I can to get a better understanding of what she is going... Hi, my daughter was just diagnosed on Thursday with Tourette. I am trying to read all that I can to get a better understanding of what she is going through and what I can do to help her. Her tics do not bother her and are very mild.

I am concerned about the "plus" part and not sure that some of the things I am concerned with are associated with TS. I believe she has dyslexia and possibly ADD. She also has blank stares but the neurologist tested her and said that she is not suffering from Absent seizures. I was then told when I called the neurologists office today that the blank stares can be part of her TS but have not read that anywhere else.

I live in Georgia and have found I feel most educated by your site and that is why I am posting here for any help or advice.

I should also say that my daughter's tics started I guess a year to a year and a half ago. From what I recall she would smell her hands CONSTANTLY. I thought it was just an odd thing she did. I realize that can be OCD but have not noticed any other OCD issues with her since that time. She also had blinking hard, scrunching her nose while eating, sighing repeatedly, shaking her head, pushing her head forward and clearing her throat, making this very quiet ticking noise with her tongue while watching tv, whistling while sucking air in and then in the middle of talking would do it.

Many of these I thought were just odd things she did and then I realized they are not. She does not do them constantly and each one has been replaced by another. I still wonder if it is TS because it is not something she constantly does. When she has a tic she might do them 3 times a day.

I feel I really do not know who to ask questions to but did make another appointment to talk to the Neurologist on May 29th. Can anyone tell me if you know if the blank staring is a symptom of TS? What about Dyslexia?

I see Add, ADHD, OCD, but not really dyslexia. Any and all help is appreciated. I am just trying to find what is best for my child and not feeling that I know where to begin. I am more concerned with the "plus" part but want to be able to recognize if she is ticcing just so I can maybe keep a log to better see what might cause her to tic whether it be anxiousness, stress, excitement, etc..

Thank you in advance! ]]> General Support and Advice poshpoodle http://www.tourettesyndrome.ca/showthread.php?6230-Daughter-newly-diagnosed-and-I-have-so-many-questions-with-TS-plus%21 <![CDATA[DSM-5 What's In and What's Out]]> http://www.tourettesyndrome.ca/showthread.php?6228-DSM-5-What-s-In-and-What-s-Out&goto=newpost Tue, 15 May 2012 16:44:16 GMT DSM-5: What's In, What's Out
MedPage Today
Published: May 10, 2012

PHILADELPHIA -- Reports here provided what may be the last public update on DSM-5, the next edition of American psychiatry's diagnostic guide, before it is formally released in May 2013.

Many changes have been made since the first draft of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders was put out for public comment in early 2010, according to workgroup leaders speaking at several heavily attended symposia at the American Psychiatric Association's (APA) annual meeting.

The current version, DSM-IV, was released in 1994.

The update effort has been led by DSM-5 task force chairman David Kupfer, MD, of the University of Pittsburgh, and APA research director Darrel Regier, MD, MPH.

The actual work of rewriting the manual fell to 13 workgroups, which tackled disorders in 20 categories. The final drafts are to be completed by August, then they must be approved by a scientific review committee and the task force leadership, and finally by the APA's governing bodies.

Kupfer said the final version has to be completed by December, when it's set to go to the printer. Its formal release is planned for the APA's annual meeting next May in San Francisco.

Here's a brief overview of the changes you can expect.

WHAT'S OUT

Kupfer and Regier gave the workgroups marching orders at the outset. These included:

  • Eliminate "not otherwise specified" (NOS) diagnoses within categories
  • Remove functional impairments as necessary components of the diagnostic criteria
  • Use scientific evidence to justify classifications and criteria



To a great but not complete extent, the DSM-5 workgroups complied with those instructions. Every one of the dozens of disorder categories has been reorganized and/or rewritten to bring them into line with research conducted over the past 20 years. Often, the groups found no basis for classifications and diagnoses contained in DSM-IV. Here are highlights of what is set to be dumped in DSM-5:

Axes. DSM-IV's main organizational scheme was to divide disorders, contributing factors, and global functional assessments into 5 axes -- notably with Axis I containing clinical, substance-related, and learning disorders and Axis II comprising personality and certain other disability-based disorders.

The DSM-5 leadership determined early on that there was no scientific basis for this distinction, and so disorders in the new edition will be presented as a simple list of 20 chapters for disorder families.

NOS diagnoses. Most disorder families in DSM-IV included an NOS diagnosis that served as a catchall for patients who appeared to have some kind of disorder but who didn't fit into the established categories.

In practice, however, some of these became extremely popular. The head of the eating disorders workgroup, for example, cited data indicating that more than half of all patients diagnosed with an eating disorder were coded for "ED-NOS." Also, some disorders that were now well recognized and characterized were included in NOS categories, such as restless legs disorder.

In DSM-5, NOS categories are either gone entirely or replaced with NEC for "not elsewhere classified." NEC categories will include a list of "specifiers," each with a specific diagnostic code, that will convey clinical information. For example, Depressive Disorder NEC comes with 5 specifiers such as "short duration" that indicate the patient's clinical condition and why it doesn't meet criteria for one of the main depression syndromes.

Bereavement exclusion in major depression. One of the most controversial proposals in DSM-5 does away with the restriction that diagnosis of major depression cannot be given to patients reporting severe grief from the death of a loved one if the death occurred within the preceding two months.

As MedPage Today previously reported, the depression workgroup believes that there is no scientific justification to disqualify patients from diagnosis and treatment if they otherwise meet criteria for major depression.

But in a bow to critics, they have proposed to include a caveat in the checklist criteria for major depression noting that certain symptoms appear in normal grief but that others may warrant attention -- as did DSM-IV though in a different way.

Catatonia as a psychotic diagnosis. The group has reworked the diagnostic criteria for catatonia and removed it as a subtype of schizophrenia. Instead, catatonia is now a specifier in schizophrenia and several other psychiatric diagnoses. The DSM-IV diagnosis of catatonia related to a general medical condition will be retained, and DSM-5 will also create a new "Catatonia NEC" diagnosis for patients showing catatonia of uncertain origin or associated with neurodevelopmental conditions such as autism.

Gender identity disorder. Individuals who believe their biological gender doesn't match their gender identification will no longer be labeled with a disorder. Instead, if they seek psychiatric treatment, they can be labeled with "gender dysphoria."

The workgroup responsible for dealing with the hot-button issue considered a variety of other approaches, addressed later in this article. Ultimately they settled on a formal diagnosis -- potentially qualifying a patient for insurance-paid treatment if they want it -- but with a less pejorative name than "disorder."

Substance abuse. DSM-IV created separate diagnoses for "abuse" and "dependence" in people having problems with mind-altering substances such as marijuana and narcotics. The DSM-5 workgroup in this area agreed that the vast amount of research conducted in recent decades pointed to substance-related problems as occurring on a continuum, such that the abuse-dependence distinction was purely arbitrary.

Hence, DSM-5 will instead feature "substance use disorders" as the diagnosis for people with such problems.

Also out are physical tolerance and withdrawal symptoms as criteria for a disorder diagnosis. O'Brien noted that these reflect the body's adaptation to chemicals and are not necessary to a diagnosis.

WHAT'S IN (or STILL IN)

In a commentary delivered to APA meeting attendees, Norman Sartorius, MD, of the World Health Organization, remarked on "the irresistible tendency to introduce new names" when revising diagnostic criteria. And indeed, the DSM-5 workgroups were unable to resist it.

But Sartorius also noted that new names can be beneficial -- as long as they are accompanied by preparation and education.

In addition to new names, some entirely new disorders and methods of diagnosing them are slated to appear in DSM-5.

Dimensions. Perhaps the most important conceptual innovation in DSM-5 is its use of dimensional assessments in most disorder categories. These are indicators of severity for certain symptoms. They may be common "cross-cutting" features that appear in conjunction with many disorders, such as suicide risk and anxiety. Or they may be specific to a particular disorder, such as the frequency of flashbacks in PTSD.

Biomarkers. For the first time, results of objective testing will be part of the formal diagnostic criteria in psychiatry. Many sleep-wake disorders in DSM-5 will require polysomnography for a diagnosis. Also, narcolepsy is set to become narcolepsy/hypocretin deficiency, with the latter condition diagnosed on the basis of hypocretin measurements in cerebrospinal fluid.

Functional impairments. Despite the leadership's wish to eliminate functional impairments and patient distress as necessary requirements for diagnoses, some of the DSM-5 workgroups found that they couldn't get rid of them.

For example, an autism diagnosis will still require "symptoms [that] together limit and impair everyday functioning." Similarly, proposed criteria for PTSD include "the disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning."

Regier acknowledged to MedPage Today that impairments are part and parcel of some disorders, particularly those defined by neuropsychiatric deficits. But for many categories -- especially the personality disorders -- functional impairments were transferred from the checklist criteria into the dimensional assessments.

Disruptive Mood Dysregulation Disorder. This is the controversial new designation for children showing persistent foul temper punctuated by bursts of rage. When first proposed, it was widely derided as an attempt to medicalize "toddler tantrums" (even though the criteria clearly stated it was for children older than 5.)

But the workgroup stuck to its guns, although it did drop the name "temper dysregulation with dysphoria" that they had initially proposed.

Autism Spectrum Disorder. This was another controversial move, insofar as it combined Asperger's syndrome with overt autism, as well as two other DSM-IV categories, into a single disorder. Many in the autism community have been unhappy with the proposal -- one member of the workgroup in this area quit in protest -- but the remaining members were adamant that the change was justified and that many of the criticisms were simply wrong.

"Craving." A key innovation in the diagnosis of substance use disorders is a requirement that the patient report or demonstrate craving for the particular substance. Workgroup chairman Charles O'Brien, MD, of the University of Pennsylvania, said this is the key symptom that separates addiction from mere heavy use.

He added that a wealth of recent research has established that craving can be measured -- he had hoped that an objective test might be included in the DSM-5 criteria, but his workgroup felt it was not ready quite yet.

Premenstrual Dysphoric Disorder. Promoted from DSM-IV's appendix to be a full-fledged diagnosis in the depressive disorders family.

Binge Eating Disorder. Promoted from the DSM-IV appendix into the eating disorders.

WHAT DIDN'T MAKE IT

Not everything that was initially considered for DSM-5 ended up in the near-final draft reviewed at the APA meeting. Some proposals left by the wayside include the following.

Other addictions. Despite substantial pressure both within and outside psychiatry, the relevant workgroup rejected proposals to recognize addictions to sex, food, the Internet, and caffeine as diagnosable disorders.

O'Brien said the group recognized that, anecdotally, many people meet most of the criteria for addiction to these behaviors. But the DSM-5 emphasis on scientific justification precluded listing them. Said O'Brien, "We looked at sex addiction, but there was no science at all. None."

However, Internet gaming addiction will be listed in DSM-5's Section III, the equivalent of the DSM-IV appendix, indicating that more research is needed and wanted.

The word "addiction." In fact, it is not used in any DSM-5 names. Instead, they are labeled "use disorders," as in "opioid use disorder." O'Brien said this choice was made over his objection. "They're addictions," he said. "That's the word people are going to use." But others in his group thought the word "disorder" was less pejorative and stigmatizing.

Mixed anxiety-depression. Many patients present with both types of symptoms, creating a diagnostic dilemma -- are they anxious with depression or depressed with anxiety? Early in DSM-5 it was decided to split the difference and create a new diagnosis that included both.

But, as they say in Hollywood, it didn't test well with audiences. In particular, field trials of the proposed definition found that different clinicians interpreted the criteria differently, leading to reliability scores near zero. The condition will go into Section III in DSM-5.

Attenuated psychosis syndrome. This was to be the home for patients with low-level hallucinations and thinking disturbances. Proponents thought that, if someone comes to a psychiatrist with such symptoms, they should receive some type of treatment for which a diagnosis would be needed. Some research also suggested that these symptoms often -- though not always -- precede a full-blown psychotic episode.

But the concept was criticized because it might give patients who might never go on to more severe symptoms the "psychotic" label, and perhaps antipsychotic drug therapy, with little research to back up its effectiveness.

In the end, it was decided to put the condition in Section III after field testing failed to determine whether the criteria were reliable -- confidence intervals were too broad to mean anything.

Posttraumatic Stress Injury. Some in the military and veterans community had lobbied to replace the word "disorder" in PTSD's name with "injury," as less pejorative and permanent-seeming. The workgroup on trauma- and stressor-related disorders did not do so, but they did rewrite its definition considerably -- in particular, adding 9 dimensional assessments to the checklist criteria and splitting PTSD in children from PTSD in adolescents and adults.

Transgenderism as a V code. In seeking to destigmatize what was called gender identity disorder in DSM-IV, one proposal was to list it -- with or without a new name -- as a so-called V code. In DSM-IV, this was a chart code used to flag items of clinical interest that were not diagnosable or treatable conditions in their own right -- such as problems at school or noncompliance with treatment.

It was rejected, as were suggestions that the condition be dropped from DSM-5 altogether.

Other proposed diagnoses. Many additional conditions proposed for inclusion in DSM-5 will be placed in Section III with the hope of attracting more research. These include the following:

Body integrity disorder (wanting healthy limbs cut off because "it feels right")
Male-to-eunuch disorder (wanting surgery to become asexual)
Hypersexual behavior (wanting to have sex all the time)
Persistent Complicated Bereavement Disorder (prolonged or severe grief that does not meet criteria for major depression)
Skin-picking syndrome
Olfactory reference syndrome (believing one smells bad)

WHAT TO LOOK FORWARD TO

Publication of DSM-5 next May is not the end of the process. Here's a peek at what lies down the road.

Primary care version. When DSM-5 comes out, it will be a weighty document like its predecessors. Not only will it include the diagnostic criteria for many dozens of diseases, many of them rare, it will also come with long text explanations for each diagnosis that primary care physicians do not need for everyday practice. DSM-5 officials said they expect to produce a slimmer, trimmer primary care version in 2014.

Code changes. The DSM-5 will also include ICD-9 codes for the individual diagnostic codes, with codes for the U.S. implementation of ICD-10 included as well, probably in parentheses, Regier said.

But the recent delay in ICD-10's implementation -- at least until 2014, perhaps later -- creates some uncertainty for DSM-5.

Regier said that, although he had no inside knowledge, the government may decide to skip ICD-10 altogether, instead going straight to ICD-11, which is to be released internationally in 2015. If that were to happen, DSM-5 would likely be reissued with those codes.

He emphasized that the DSM-5 task force has been working with the developers of ICD-11 to ensure that their respective products are relatively synchronized.

New governance for continued revision. With the completion of what Kupfer has called "DSM-5.0" later this year, a structure within APA to oversee its subsequent revision -- expected to be a more continuous process than in the past -- must be created.

The APA's outgoing president, John Oldham, MD, said no plan has yet been developed for DSM-5.1 and beyond. He said the organization would begin to address that in the near future, although finishing version 5.0 remains the top priority. ]]> Research Studies, Scientific Reports Steve http://www.tourettesyndrome.ca/showthread.php?6228-DSM-5-What-s-In-and-What-s-Out Talking to herself http://www.tourettesyndrome.ca/showthread.php?6227-Talking-to-herself&goto=newpost Mon, 14 May 2012 13:05:52 GMT Good day, My daughter was diagnosed with TS and OCD at 5 years old. She has been talking to herself now since she was old enough to talk. She is... Good day,

My daughter was diagnosed with TS and OCD at 5 years old. She has been talking to herself now since she was old enough to talk. She is now 11 and stil talking to herself. She goes off to a side to do this alone. Hoping to find out if anyone else has or is experincing this. ]]> New Members: Introductions Danica http://www.tourettesyndrome.ca/showthread.php?6227-Talking-to-herself Anger Issues? Broken Relationship... http://www.tourettesyndrome.ca/showthread.php?6226-Anger-Issues-Broken-Relationship&goto=newpost Sun, 13 May 2012 19:51:09 GMT Hi everyone, This is my first post. I am a 30 year old ER doctor and began dating someone who has a mild form of tourettes with symptoms including... Hi everyone,
This is my first post. I am a 30 year old ER doctor and began dating someone who has a mild form of tourettes with symptoms including throat clearing and sniffling. She and I were dating for approx 10 months and during the course of our relationship I began to realize that she more angry and annoyed at a lot of different scenarios. Along with anger, she was/is very accusational towards others. I believe it has affected her life in multiple areas such as friends, family and of course romantic relationships. I got to the point where i could not deal with the constant defending of myself and walking on egg shells so i didn't upset her. We ended up splitting and the next day her sister said that maybe her anger is a manifestation of her tourettes. She was unaware of any neurologic/behavioral issues that came along with the diagnosis. She was always concerned about the physical manifestations and ignored the mental. I unfortunately was unaware that tourettes can exacerbate anger management problems and have never been exposed. I of course wish i knew this information before i broke up with her. Feel like i failed her as a partner since i guess i gave up. She understands this now and is going to see therapy. Maybe she needed to lose me in order to recognize her anger is really a problem. Either way... has anyone on this forum seen similiar events or relationships break up due to anger management issues. Is this truly a symptom of the disease that is common? Like I said, i'm a doc but have never been exposed to the personal issues of tourette patients. Thank you for your time. ]]> General Support and Advice rbt81 http://www.tourettesyndrome.ca/showthread.php?6226-Anger-Issues-Broken-Relationship <![CDATA[Mother's Day Ideas]]> http://www.tourettesyndrome.ca/showthread.php?6225-Mother-s-Day-Ideas&goto=newpost Sat, 12 May 2012 22:22:52 GMT I made this mother's day video last year and thought I'd post it around instead of making a new video for 2012. Still just as suitable, huh?:cool:

]]> Across The Fence SpiderThug http://www.tourettesyndrome.ca/showthread.php?6225-Mother-s-Day-Ideas First Pedi Neuro Appointment http://www.tourettesyndrome.ca/showthread.php?6224-First-Pedi-Neuro-Appointment&goto=newpost Fri, 11 May 2012 02:01:57 GMT My son is 5, and his pediatrician has just referred us to a pediatric neurologist. We are still waiting to hear back on the appoint time, but I am... My son is 5, and his pediatrician has just referred us to a pediatric neurologist. We are still waiting to hear back on the appoint time, but I am starting a log of his tics. I wanted some advice on what we should have ready for the doctor.

So far I have created a spreadsheet so I can keep track of his tics. The way I thought about doing it was recording the number of each type of tic for one minute in the morning and evening while he is relaxing and watching TV. One minute once a day while he is playing and once while we are just hanging out and talking. Because I am a huge science nerd, today I did three trials for each and took the average of the three. I'm trying to be discrete so he doesn't pick up on what I am doing. He has also started with echolalia, which I am trying to keep track of over the course of the day, since it is not that often right now.

Do you think there is anything I should add to this?

Besides this and a family history, is there anything else that would be beneficial for me to note for the doctor?

Thanks! ]]> General Support and Advice Dawn http://www.tourettesyndrome.ca/showthread.php?6224-First-Pedi-Neuro-Appointment Free Desktop Wallpaper Photos from National Geographic http://www.tourettesyndrome.ca/showthread.php?6223-Free-Desktop-Wallpaper-Photos-from-National-Geographic&goto=newpost Fri, 11 May 2012 00:44:23 GMT If you're looking for beautiful desktop wallpaper or just some beautiful photos from National Geographic, HERE are some free desktop wallpaper photos from the National Geographic Galleries. ]]> Across The Fence Steve http://www.tourettesyndrome.ca/showthread.php?6223-Free-Desktop-Wallpaper-Photos-from-National-Geographic Update on My Story About Living with TS http://www.tourettesyndrome.ca/showthread.php?6222-Update-on-My-Story-About-Living-with-TS&goto=newpost Thu, 10 May 2012 16:49:45 GMT Back in September 2011, I uploaded an essay describing my life living with TS. Attached is an updated essay. I really hope it helps anyone that is... Back in September 2011, I uploaded an essay describing my life living with TS. Attached is an updated essay.

I really hope it helps anyone that is dealing with TS. :smile:
Attached Files
]]> Symptoms, Causes, and Resources ts1999 http://www.tourettesyndrome.ca/showthread.php?6222-Update-on-My-Story-About-Living-with-TS Rage attacks triggered by sounds in speech http://www.tourettesyndrome.ca/showthread.php?6220-Rage-attacks-triggered-by-sounds-in-speech&goto=newpost Wed, 09 May 2012 18:12:44 GMT Hi guys, in addition to tics, I experience periods of intense rage when I hear people say certain sounds in speech - specifically hard 'k' sounds sometimes 't' sounds. Is anyone experiencing the same?

It's really, really frustrating because I get angry at loved ones for basically no good reason other than the sounds they're saying in normal speech. I'm taking citalopram and it's helping with the tics, but doesn't do anything for these sounds triggers and anger.

Thanks guys. ]]> Symptoms, Causes, and Resources Shogun http://www.tourettesyndrome.ca/showthread.php?6220-Rage-attacks-triggered-by-sounds-in-speech May 15 - June 15 Tourette Awareness Month: TSA U.S. http://www.tourettesyndrome.ca/showthread.php?6218-May-15-June-15-Tourette-Awareness-Month-TSA-U-S&goto=newpost Tue, 08 May 2012 19:16:04 GMT *Tourette Syndrome Awareness Month is May 15 - June 15, 2012 * (http://www.tsa-usa.org/news/0512awarenessmo.html) Bayside, New York – May 15,...
Tourette Syndrome Awareness Month
is May 15 - June 15, 2012


Bayside, New York – May 15, 2012

From May 15 to June 15, the Tourette Syndrome Association (TSA®)—the only national, voluntary health organization for people with Tourette Syndrome (TS) (in the United States)—joins the hundreds of thousands of families affected by TS to help raise awareness of this baffling disorder during National Tourette Syndrome Awareness Month.

In 2005 Congress introduced a concurrent resolution (H. Con. Res. 430 and S. Con. Res 113)), which “recognizes the importance of early diagnosis, proper treatment and enhanced public awareness of TS and supporting the goals and ideals of a National Tourette Syndrome Awareness Month.”

"Although media coverage has led thousands of children and adults to proper diagnosis of the condition,” said Judit Ungar, President, TSA, “many more are troubled by symptoms which remain undiagnosed.” The aim of TS Awareness Month, she added, is to encourage such people to seek medical attention.

Marked by involuntary body movements and vocal sounds called tics, it is estimated that some 200,000 Americans have the disorder, with millions more manifesting associated conditions. National Tourette Syndrome Awareness Month, which was first established by TSA in 1997, provides an opportunity for the TSA, its chapters and others in the TS community to educate the public about this much misunderstood and misdiagnosed neurological condition.

Throughout the month, local TSA chapters across the country will work to raise awareness, increase education and reduce stigma associated with TS. One such event is Government Relations Awareness Week from May 28 to June 1. During this week, TSA chapters and families hold district meetings with elected officials and community leaders to raise local, state and federal elected officials' awareness of issues impacting families living with Tourette Syndrome.

Locally, many TSA Chapters will be hosting many events throughout the month, so be sure to contact your state’s TSA Chapter and Support Groups for details.

Founded in 1972, the TSA celebrates 40 years of service to the Tourette Syndrome community worldwide and has a three-pronged mission of education, research and service. TSA has 33 chapters and more than 150 support groups throughout the country. For more information on TS, call 1-888-4-TOURET or visit http://tsa-usa.org.

TSA-Awareness-Month-Flyer2012.jpg

click here for full size downloadable flyer
Please feel free to download, print and distribute our new TS Awareness Month Flyer
to local businesses, schools, libraries and medical offices to exhibit and display!
You may add it to websites and social media sites as well to help spread the word!
Attached Images
]]> Myths, Stigma, and Raising Awareness Steve http://www.tourettesyndrome.ca/showthread.php?6218-May-15-June-15-Tourette-Awareness-Month-TSA-U-S The Truth About Tourette: A Report from Australia http://www.tourettesyndrome.ca/showthread.php?6217-The-Truth-About-Tourette-A-Report-from-Australia&goto=newpost Tue, 08 May 2012 16:21:28 GMT GOOD LIFE: The truth about Tourettes... GOOD LIFE: The truth about Tourettes
Illawarra Mercury, Australia
LISA WACHSMUTH
08 May, 2012


Fourteen-year-old Cassidy Richardson has learned to live with Tourette syndrome - it’s the misconceptions she and her family can live without.
‘‘I’ve never heard her swearing’’ and ‘‘But she’s always so well behaved!’’ are a couple of the familiar comments made to her mother Janelye when hearing about the Kiama teen’s condition.

Coprolalia (the involuntary utterance of inappropriate or obscene words) is just one of the symptoms of Tourette syndrome (TS) - and only a small percentage suffer from it - but it’s the one thing many people associate with the neurological disorder.

That’s not surprising considering the only point of reference many have is films like Deuce Bigalow: Male Gigolo where one character with Tourettes uncontrollably screams out profanities.

However the reality is that the variety and complexity of tics or tic-like symptoms that can be seen in TS is enormous. In Cassidy’s case they became obvious in 2005, although it took four years to get a diagnosis.

‘‘We first noticed the symptoms when Cassidy was in Year 3, although the motor tics which included head shaking, flicking and nose twitching had probably started when she was in Year 2. Then in Years 4 and 5 the vocal tics - sniffs and grunts and throat clearing - began,’’ Janelye says.

‘‘She’d also been diagnosed with acute rhinitis so we initially put the throat clearing and sniffing down to that. It was hard to differentiate between the allergy and what we now know are vocal tics.’’

It was Cassidy who diagnosed herself after seeing some Tourette syndrome awareness advertisements on television. Her self-diagnosis was confirmed by a specialist and she’s also been diagnosed with Obsessive Compulsive Disorder, which is one of the co-morbid conditions that can go along with TS.

A proper diagnosis has enabled Cassidy, her parents and three siblings to better cope with its effect on all their lives.

‘‘Cassidy has some fantastic friends who support her, and her school gives her wonderful support, but she has experienced bullying because of her tics and we’ve had to keep her home from school for days at a time when her vocal tics get really bad,’’ Janelye says.

‘‘The symptoms wax and wane, so no two days are ever the same. And while she can hold onto them - if she’s in class for instance - they do build up and need to be released at some stage. When she was younger she used to hold onto them all day and when she’d come home she’d nearly shake her head off her shoulders the tics were so violent.

‘‘Now she has a time-out card which she can show to her teacher so she can leave the classroom with no questions asked.’’

Medication is sometimes prescribed for those with severe tics, but for milder tics self-management is advised, says Janelye.

‘‘When I’m tired, stressed or nervous they get worse, so sleep and relaxation can help,’’ says Cassidy.

The biggest help, though, has been dance. ‘‘Cassidy has always got to be doing something, she’s always got to be moving, and now she focuses a lot of that energy into dance - she does up to 16 classes a week,’’ Janelye says.

Raising awareness of the condition, which affects 1 per cent of the population, is the goal of Tourette Syndrome Awareness Week this week and includes a Sydney (Australia) conference on Saturday.

The week is run by Tourette Syndrome Association of Australia (TSAA), which gives support and information to families who are dealing with the condition.

Marea and Andrew Whitley of Port Kembla say awareness is better today than it was when their twin sons Jordan and Jarrod, now 27, were young. The boys were diagnosed with Tourettes at age 12, but the symptoms had been apparent since they were in Year 2.

‘‘They had attention problems and were first diagnosed with ADD - a co-morbid symptom with TS,’’ Marea says. ‘‘We dismissed the ticcing, as it was something I had as a child. I now know I have TS too, although it’s never been diagnosed.

‘‘But the ticcing got worse as the boys got into their teenage years and they were eventually diagnosed, which made things a lot clearer and we had a better understanding of what we were dealing with.’’

Jordan did not want medication and struggled through school with the help of a scribe as his tics made it hard for him to write. Jarrod took medication which helped ease the symptoms somewhat, but in Year 11 he stopped taking it as he didn’t ‘‘feel like himself’’ on it.

‘‘Jordan, who has also been diagnosed with Asperger’s syndrome, still struggles, but his body tics have eased and his vocal tics have become more sophisticated with age,’’ Marea says. ‘‘Jarrod has a good job, is married with two kids, and is doing well. A lot of the external symptoms disappear or ease, with maturity, like mine did.’’

Cambewarra family Matt and Julianne Dallas have also got two children - Macauley, 12 and Anabelle, 8 - with Tourettes.

Matt, vice-president of TSAA, says the couple had no idea what was going on when Macauley’s symptoms appeared.

‘‘Macauley first developed tics when he was about three - they are constantly evolving and have included motor tics such as jumping, rolling eyes and blinking, and vocal tics such as sniffing and throat noises,’’ he says. ‘‘He wasn’t diagnosed till he was about six or seven. Before that we were doing the worst thing possible - telling him to stop - which just put more pressure on him.’’

When Anabelle started ticcing at five, the couple knew what to look for but it’s still not easy. ‘‘Anabelle’s tics can put her at risk of hurting herself,’’ Julianne says. ‘‘She can’t sit still and she throws handstands a lot, even at Coles when we are grocery shopping, and she holds her breath. She has a lot of vocal tics - squeaks and whistles - and she often repeats words she hears when out in public.’’

The children are home schooled, after bullying caused Macauley to be pulled out of school in Year 3. And they throw their energies into extra-curricula activities - dance for Anabelle and guitar for Macauley.

‘‘That repetition that they need, and that can cause problems for them, can actually help them in some areas - as they put all their focus into their chosen activities,’’ Julianne says.

The couple use diversion tactics, relaxation techniques - and a lot of love - to help their children deal with Tourettes and are looking into cognitive behaviour therapy. ‘‘The children’s symptoms come and go and the severity changes,’’ Julianne says. ‘‘We try different things to help them, such as distraction or simply a hug, and such things work some days, but not others.’’ ]]> Myths, Stigma, and Raising Awareness Steve http://www.tourettesyndrome.ca/showthread.php?6217-The-Truth-About-Tourette-A-Report-from-Australia Harmless Frantic Fun http://www.tourettesyndrome.ca/showthread.php?6216-Harmless-Frantic-Fun&goto=newpost Tue, 08 May 2012 02:06:38 GMT I had 30 minutes to consume as many as I could and I really made the most of it. Such frantic fun is most therapeutic and I thrive in such repetitive... I had 30 minutes to consume as many as I could and I really made the most of it. Such frantic fun is most therapeutic and I thrive in such repetitive time based activities.

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After that I started on the mushrooms. :smile:

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]]> Adults with Tourette Feelers http://www.tourettesyndrome.ca/showthread.php?6216-Harmless-Frantic-Fun In-Service Feedback http://www.tourettesyndrome.ca/showthread.php?6215-In-Service-Feedback&goto=newpost Mon, 07 May 2012 18:30:47 GMT Image: http://tourette.ca/blogs/files/2012/04/puzzle_rgb2-300x221.jpg (http://tourette.ca/blogs/files/2012/04/puzzle_rgb2.jpg)Last week we profiled... Last week we profiled a number of our in-service presenters. Today we wanted to cap it off by offering you a glimpse into the audience’s reactions to in-service presentations. Here is what students, educators, parents and communities had to say after receiving an in-service from one of the TSFC’s skilled in-service*presenters:
“The strategies and information were the strongest aspect of the session…I had limited knowledge prior and feel that I have the information and coping strategies I need”
—Teacher candidate
“The instructor was very personable with lots of hands-on experience and stories to share!”
—High school student
“My students were so engaged by the discussion..thank you so much for the wonderful and informative session!”
—Elementary school teacher
“You were such a hit! Everyone on staff is demanding that you come back again soon! We want to have you come again to do another session.”
—High school principal
“My son was really happy with the presentation…he came home excited that even HE learned something. Thank you so much!”
—Parent of student with TS
“There was so much that I learned about that I didn’t know!”
—Special Education Resource Teacher
“…it made such a difference to our daughter that you went in and had a session with the staff. Now I feel that everyone ‘gets it’!”
—Parent of student with TS
“Fabulous!”
—Coordinator of Students Services
To learn more about becoming an in-service presenter in your community, please contact Ashley at ashley@tourette.ca.


Read more... ]]> TSFC Blog TSFC Forum Newsbot http://www.tourettesyndrome.ca/showthread.php?6215-In-Service-Feedback Overdosed and Overmedicated http://www.tourettesyndrome.ca/showthread.php?6214-Overdosed-and-Overmedicated&goto=newpost Mon, 07 May 2012 13:43:44 GMT A little perspective has been provided by this opinion piece from the Globe and Mail. This may apply more for the associated disorders of Tourette... A little perspective has been provided by this opinion piece from the Globe and Mail.
This may apply more for the associated disorders of Tourette Syndrome like ADHD and OCD.
However, this quote is in the middle of the article:

Quote:
Children need a diagnosis in order to get access to special school services. Anxious parents with difficult-to-manage children are desperate for a ray of hope. And harried family doctors want to help them. Eighty per cent of all psychiatric medication is prescribed by family doctors, who may spend only a few minutes with the patient and have little or no expertise in psychiatry.
Is anybody normal any more?
Margaret Wente
From Saturday's Globe and Mail
Published Saturday, May. 05, 2012 2:00AM EDT
Last updated Sunday, May. 06, 2012 6:15PM EDT

Are you ever worried that you (or a loved one) have mental problems that require professional attention? If not, then maybe you should be. Consider the following list of symptoms:
– Do you binge out on forbidden foods [Häagen-Dazs, Cheetos] more than a couple of times a month?
– Were you extremely sad and depressed for a month or two after your mother died, or even longer?
– Does your seven-year-old have frequent temper tantrums?
– Do you get cranky before your period?
– Are you forgetting more things than you used to?

If you answered yes to any of these questions, beware. Taken from the top, these behaviours could be symptoms of: Binge Eating Disorder, Major Depressive Disorder, Disruptive Mood Dysregulation Disorder (or possibly an even more serious condition, Child Bipolar Disorder), Premenstrual Attention Deficit Disorder, and Mild Neurocognitive Disorder. All of these conditions could wind up in the next edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM), due out next year.

The DSM, which is used by doctors, clinicians, health-care providers, social workers and insurance companies, is the bible of psychiatry. It has a big impact on the way millions of people lead their lives and on the way mental health resources are spent. Now it has become the focus of a fierce controversy over the distinctions between normal and abnormal behaviour, the role of pharmaceutical marketing in the treatment of mental illness, the overtreatment of children and the medicalization of the ups and downs of everyday life.

“We’re being overdosed and overmedicated,” says Allen Frances, professor emeritus at Duke University, who is a leading critic of the DSM and of what’s known as “diagnostic inflation.”

Dr. Frances is no ordinary gadfly. He chaired the task force that oversaw the current edition of the DSM, which loosened the criteria for disorders such as autism. After that, the number of children diagnosed with these disorders exploded. The autism rate grew more than 20-fold, as severely autistic kids were lumped in with kids who were just peculiar, difficult or eccentric. Meantime, the rate of attention-deficit hyperactivity disorder tripled. Today, 10 per cent of kids in the U.S. have been diagnosed with ADHD. The percentages are lower in Canada, but the trends are the same.

Looser diagnostic criteria are one of several factors that have driven the number of “disordered” children to record highs. Children need a diagnosis in order to get access to special school services. Anxious parents with difficult-to-manage children are desperate for a ray of hope. And harried family doctors want to help them. Eighty per cent of all psychiatric medication is prescribed by family doctors, who may spend only a few minutes with the patient and have little or no expertise in psychiatry.

Then there are the drug companies.

Until recently, the drugs used to treat attention-deficit hyperactivity disorder weren’t very profitable. They’d been around for 40 years. Now, the pharmaceutical industry has developed a new generation of highly profitable patented drugs, which are marketed aggressively to doctors and – in the United States – consumers. The ADHD market has become a billion-dollar jackpot.

“Drug companies will do everything possible to exploit the child market,” Dr. Frances says. The newest fad, he says, is Child Bipolar Disorder, which he describes as the product of an unholy alliance between the drug companies and fancy psychiatrists at Harvard. This condition used to be vanishingly rare. Now it is 40 times more common. “The causes behind the surge in childhood bipolar disorder are no mystery,” he wrote recently. “[They are] a combustible combination of overly influential thought leaders, aggressive drug company marketing, desperate parents and gullible doctors.”

None of this is meant to diminish the devastating impact of serious mental illness, or the relief that treatment can bring. For severely troubled kids, the right drugs are a godsend. And many children need and deserve extra help at school, no matter what their diagnosis. But over-diagnosis has serious consequences. “Giving kids a label is a real problem,” Dr. Frances says. “It weighs them down and reduces their expectations.” The vastly increased use of antipsychotics is especially problematic, because these drugs have harmful side-effects such as dramatic weight gain, diabetes and heart disease.

The irony is that even as the system misdiagnoses people who are essentially normal, the people who really do need treatment fall through the cracks. Only half of people with severe depression get treatment, he says.

Some of the experts working on the next edition of the DSM – called DSM-5, because it will be the fifth edition – regard Dr. Frances as a menace. But he has a growing number of allies among ordinary people and other professionals who think the psychiatric establishment is losing touch with common sense. People who have experienced the profound emotions of bereavement are especially infuriated that their grief at losing loved ones could be labelled (after only two weeks) as a mental aberration.

“The people working on DSM-5 are well-meaning,” he says. “They’re not corrupt. What they don’t understand is the false-positive blowback and the unintended consequences.” And if they have their way, they will eventually medicalize normalcy out of existence. What happens when every difficult kid becomes labelled as a child with a chemical imbalance, or when the normal forgetting that comes with age becomes a mental disorder? As Dr. Frances puts it, “We create a society of people who regard themselves as sick.”

Allen Frances will appear on TVO’s The Agenda on May 12, 2012 and will lecture in Toronto as part of Mental Health Week. ]]> Diagnosis and Treatment of Tourette Syndrome Tina@Tourette http://www.tourettesyndrome.ca/showthread.php?6214-Overdosed-and-Overmedicated