tourette syndrome plus

Tourette Syndrome Plus

Tourette Syndrome "Plus"

The Pros and Cons of the Terminology

or

"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.

Tourette Syndrome: Minimizing Confusion

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 !!

posted by TSNowWhat at 7:06 PM

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