Blog About Tourette Syndrome - Tourette's Disorder

Sunday, December 18, 2005

Tourette Syndrome Plus

Tourette Syndrome “Plus”

The Pros and Cons of the Terminology
"Splitters" versus "Lumpers"

The term “Tourette Syndrome Plus,” or TS+, was coined by Leslie Packer, PhD, to remind people to sort out symptoms that may be coming from conditions other than Tourette’s. The “plus” refers to comorbid conditions, beyond the diagnostic criterion for Tourette’s, which an individual may have. For example, one might have TS plus AD/HD or TS plus bipolar or TS plus learning disabilities. The idea was to remind people of the importance of “splitting” rather than “lumping” of diagnoses, in order to more appropriately target treatment towards problematic symptoms. For example, if a child has anxiety in addition to tics, the anxiety may warrant treatment priority. If a child has attention-deficit, hyperactivity disorder along with tics, treating the AD/HD most often takes priority over treating the tics. If a child has angry, explosive outbursts and inflexible behaviors (colloquially referred to as “rage,” although there is no such diagnostic entity or medical term), then the comorbid conditions beyond Tourette’s, which are leading to those behaviors, should be identified and treated (“rage” has been found not to be associated with Tourette’s, yet we still hear the term “Tourette’s rage”).

Tourette Syndrome "Plus"
“When I first began talking to people about TS, I realized that when some people would say ‘That's a symptom of my son's TS,’ they weren't talking about tics but about features or symptoms of disorders such as Attention Deficit Hyperactivity Disorder or obsessive-compulsive symptoms. So to decrease confusion in our communication, in 1991, I introduced the term ‘TS+’ to refer to individuals who have TS plus features of one or more other disorders such as Attention Deficit Hyperactivity Disorder (ADHD), Obsessive-Compulsive Disorder (OCD), anxiety, self-injurious behaviors, anger or rage outbursts, or depression, to name but some of the conditions that may be associated with or frequently comorbid with TS. The goal was to help people remember that not everything may be a tic of TS, and that the child may have other conditions that may be responsible for any impairment they are experiencing.

‘TS+’ is not a technical or diagnostic term, but rather a convenient way to remind ourselves that there is (sic) often other things affecting a child who has been diagnosed with TS. This is particularly evident when we examine school functioning. In the vast majority of cases I've dealt with over the years, it is seldom the tics that are the child's or teen's biggest problem.

Unfortunately, and despite my best efforts to remind people not to attribute everything to TS when it may be due to something else, all too many people continue to describe people with TS as having a variety of problems that may not be due to TS at all, but rather to some other condition. For example, one publication from the National Tourette Syndrome Association suggested that TS was linked with Central Auditory Processing Disorder (CAPD), and yet there is not one study that shows any direct association between TS and CAPD. Such imprecise writing does not further our understanding of TS. It is one thing to say that children with TS and Attention Deficit Hyperactivity Disorder may be more likely to have CAPD, but it is quite another thing to say that children with TS are more likely to have CAPD.”

So, in spite of Dr. Packer’s best intent when coining the term, and her efforts to clarify the correct usage of the term she coined, the horse is out of the barn, and is not going to be corralled. A tour of internet websites and message boards shows that the term is still most often used incorrectly, by people who believe that the symptoms of their comorbid conditions can be rolled in under the Tourette’s umbrella. Many laypersons and professionals alike have come to use the term to broadly refer to Tourette’s symptoms in general, and confusion of diagnostic boundaries results. When conditions comorbid with tics aren’t correctly identified, the risk is that the appropriate and most effective treatment can’t be targeted. For example, if a child has tics plus bipolar disorder, you can’t treat the bipolar correctly by thinking the manic behaviors are coming from Tourette’s and trying to treat the tics. Bipolar responds to mood stabilizers, rather than the typical medications which treat tics.

Although the term TS+ does make it more convenient for those who need to describe a child who has diagnoses beyond tics, in my opinion, the current mis-usage of the term by most people who employ it does more harm than good, and the term should be eliminated from Tourette’s terminology. Here is a summary of some of the issues:

1. “TS-only” versus “TS-plus:” but ... Tourette’s is TS-only. The diagnostic criterion for Tourette’s define a tic disorder, which may occur along a spectrum from mild to severe. It doesn’t define a tic disorder plus AD/HD or a tic disorder plus bipolar or whatever. The widespread usage of the term “TS-plus” had led to the need for another term, “TS-only,” to counteract the common usage of the term “TS-plus.” And it goes beyond that: one finds all kinds of awkward terminology used to desribed diagnostic Tourette's syndrome, such as, pure TS, plain TS, and so on. This may lead some to forget that the people who have “TS-only” are the people who have ... well ... Tourette’s according to DSM criterion. There should be no need for additional names to describe those who do have the basic condition as defined in the DSM. They should not be the “exception” that needs clarification, because another term has necessitated that clarification. The true nature of Tourette’s is obscured when one thinks of “TS-only” as the exception, and fails to dig deeper and realize that most cases of Tourette’s (i.e.; TS-only) probably go under-detected and misdiagnosed, while ascertainment and referral bias brings clinical attention to more cases of Tourette’s plus comorbidities (TS-plus). People who don’t have comorbid conditions along with their tics are less likely to come to diagnostic attention, and less likely to come to tertiary, clinical attention where they will end up in a published study.

Persons with TS+ are more likely than TS-Only to have problematic behaviours. … Co-occurring or "comorbid" problems or disorders often determine the impact of the TS, as well as whether medical treatment is needed. One should be very careful to not attribute everything to the TS diagnosis; if you do, you may overlook important possibilities.”

And, also from Roger Freeman, MD
An international perspective on Tourette syndrome: selected findings from 3,500 individuals in 22 countries. Freeman RD, Fast DK, Burd L, Kerbeshian J, Robertson MM, Sandor P. Dev Med Child Neurol. 2000 Jul;42(7):436-47. "The small proportion of individuals with TS only reflects a clinical and epidemiological dilemma: most individuals with TS seen and followed in clinics are comorbid and therefore contribute to the idea that TS is necessarily associated with other disorders and behavioral problems ... However, the prevalence of behavioral problems in the TS only group may not differ from the general population.”

2. One can find endless examples of persons who erroneously employ the term “TS plus,” to the point that generates confusion about what Tourette’s is, and may lead to inappropriate treatment. This can lead people with perhaps undiagnosed comorbid conditions to truly believe that their symptoms are typical of or common to people with Tourette’s, while missing other diagnoses which would benefit from accurate identification and treatment. One finds this very frequently with respect to bipolar disorder, learning disabilities, “rage,” and AD/HD. It also increases the myth, misinformation, and stigmatization attached unnecessarily to a diagnosis of Tourette’s.

3. “Lumping” comorbid conditions under the “TS-plus” umbrella is misleading. Since the tics rarely are the first treatment priority, and comorbid conditions are most frequently what leads to academic, social or behavioral difficulties, why are we calling attention to the Tourette’s as the source of the problems, by employing the label “TS-plus?” If we need to use shorthand, why aren’t we saying “AD/HD+” for a child with AD/HD plus tics, or “bipolar plus” for a child with bipolar plus tics? That would make it clearer what symptoms should be targeted for treatment.

4. The Tourette Syndrome Study Group seems to agree on the importance of the benefits of reductionism, and “calling a diagnostic spade a spade.”

Challenging Phenomenology in Tourette Syndrome and Obsessive–Compulsive Disorder:
The Benefits of Reductionism

“In the clinical setting, a reductionistic approach makes most sense. Describe the action as accurately as possible, calling complex behaviours “intentional repetitive behaviours” (12) if they are not definite pure forms. Describe all epiphenomena including sensory phenomena, cognitions, affective state, changes with the completion of the action, how endpoint is judged, senselessness and so on. Treatment, therefore, focuses on the most disabling symptoms, with the aim to improve overall quality of life rather than to eliminate all symptoms. Medication choice is based on knowledge of how parsed phenomena best respond to specific current therapies. For the purpose of diagnosis, certain labels may be applied (“OCD” or “Tourette”), but the therapeutic path will more closely relate to the pattern of phenomena than will the broad labels which, by nature, will lose resolution when it comes to understanding the individual’s unique situation.

Faced with related phenomenology dilemmas, the TS Classification Study Group (13) used a reductionistic approach when it said of its numerous tic syndromes, “Although some of these separate entities may ultimately be shown to be caused by the same etiology (or even the same gene), until that is established it is considered best to divide the condition into distinct entities.” “(This classification) can both expand and consolidate, as (etiological factors) are identified (13).” One promise of reductionism is that accurate description of the variations of phenotype will lead to the best chance of correlating such variation with neurobiological underpinnings, as the latter become elucidated. We may find that phonic tics are simply motor tics of noise-making musculature; however, we may find that they are somehow neurobiologically distinct from other tics. We do not yet know, and until we do, we should continue to subdivide them. An approach such as this one has already led to the description of two likely biologically distinct types of OCD (10).”

Tourette Syndrome - Now What?

TSNW - TSNowWhat - TouretteNowWhat - Tourette Syndrome Now What?
are the names I post under, but you should be aware that other webmasters have used my name in an attempt to drive traffic to their own sites ... I guess imitation is the sincerest form of flattery !!


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