Tourette Syndrome And Other Tic Disorders
Explaining Tics Frequently Asked Questions Coping with Tics & TS
Tourette Syndrome PANDAS Treatment Outlook
"Isn't Tourette Syndrome the one where they shout and swear?" is the question that I'm often asked. Gilles de la Tourette Syndrome is a widely misunderstood and under-diagnosed neurobiological condition, and sufferers can experience prejudice and ridicule.
What can start as blinking and sniffing, can develop into a condition that
affects every area of our lives. Tourette
Syndrome is a spectrum disorder - it varies with each individual, and may be anywhere on
the spectrum between very mild and severe. For most, it may never develop
beyond blinking and sniffing (and the like), which are often written off as “nervous
habits” or allergy symptoms.
Every child
or adult is different, and each child or adult is affected differently by TS. TS does not affect intelligence – on the
links page you will find articles about a successful pilot and surgeon, NBA basket ball
player and Samuel Johnson, all who have or had Tourette Syndrome.
The presence of tics though, does not mean the individual has Tourette Syndrome. See below for descriptions of the various tic disorders, including TS.
Transient Tic Disorder Chronic Tic Disorder Tourette Syndrome PANDAS
Tics are movements or sounds
that are repeatedly over and over again. Some examples of tics include: eye blinking, nose scrunching, lip licking,
rolling eyes, shoulder shrugs, nodding or shaking head, neck stretching, head flicking
(hair out of eyes?), squinting, opening mouth, smelling fingers, kicking, feet tapping,
touching – objects and people, echoing others words or actions (echolalia &
echopraxia), flapping arms, poking, throat clearing, sniffing, barking, coughing, humming,
whistling, spitting, screaming, shouting, stuttering, obscene words (coprolalia) and
gestures (copropraxia), grunting.
It is coprolalia that often receives
the media attention – but it is present in only a small minority of people with
Tourette Syndrome.
Tics are involuntary and therefore
the person has no, or very limited, control over them. Some people are able to
suppress them for a short time, but this usually results in even more tics when they are
released. The person with TS describes these tics as compelling - they have to do
them, if they try not to, they don't "feel right". The release of the tic,
momentarily at least, eases that feeling. The sensation prior to a sneeze has been
likened to that of the "urge" that precedes a tic - it has to be
expressed. If you try now not to blink, after a short time, you feel you have to
blink, and there is nothing you can do to prevent you from finally blinking.
David Bowles has written an excellent explanation of experiencing tics
Tics often disappear during sleep (though not always - some people's tics continue all night), during times of concentration (working on a computer etc) or relaxing. They are often worse during times of stress, or for some, during times of relaxation when they are able to tic without worrying about the reaction of others (perhaps watching TV in the evening). Some people only tic when they are in the refuge of their own home, and others may not be aware of the tics (at least some of the time). It is often not the tics which cause a problem, but the reaction or attitude of others. Coping with Tics & TS
Often begin during the early school years. 1 in 5 children have tics at some time. (That's 6 children in every UK classroom of 30 children!)
Transient tics last only weeks or a
few months and usually are not associated with specific behavioural or school problems.
They are especially noticeable with excitement or fatigue. Boys are three to four
times more often affected than girls. While transient tics do not last for more than a
year, sometimes a child may have several episodes of tics over several years.
Chronic tics do not change.
While transient tics come and go - with sniffing replaced by forehead furrowing or finger
snapping, chronic tics (movements or sounds - but not both) may remain unchanged for
years.
A person may have several chronic tics, which don't change.
Many people now believe that all tic disorders are closely related, and are perhaps part of the same spectrum.
Is characterised by many varied,
frequently changing motor and phonic tics.
The diagnostic criteria (According to the ICD -10. F95.2) are: Onset before the age of 18; Multiple motor tics and one or more vocal tics (to be present at some time, but not necessarily concurrently); The frequency of tics must be many times a day, nearly every day, for more than one year, with no period of remission during that year lasting longer than 2 months. (The Amercian DSM 4 diagnositic criteria are almost identical, particularly now that the criteria "the condition causes marked distress" has been removed in the DSM 4-R)
Although the tics are involuntary, many people are able to suppress their tics for some time (minutes, maybe hours) – however, this is often followed by the release of a flurry of tics. There is usually an internal urge to tic, which may include tension, not feeling “right”, and anxiety. (see explanation of tics above)
TS is often accompanied by
additional difficulties that are commonly observed in TS patients, such as attention
problems, or obsessions & compulsions. (See Other
Problems)
There are no diagnostic tests, although tests are usually performed to rule out other conditions - blood tests to exclude metabolic disorders, and an EEG (electroencephalogram) to rule out epilepsy. Diagnosis is made on the clinical history – that is, observing the person, and/or by hearing the history of the tics from the sufferer or their parents. It is common for the tics to disappear as soon the doctor's surgery is entered, and to return again straight afterwards – tics don’t appear on order. Some people have found it helps to videotape their children’s tics. Most GPs have precious little knowledge of TS, and often believe that coprolalia should be present for diagnosis. In fairness to them, it is often difficult to diagnose a condition that they haven’t come across before (to their knowledge anyway). If you are in this position with your GP, ask for a referral to a neurologist or neuropsychiatrist. There are professionals around the UK who do specialise in treating TS – the TSA UK keeps a list (available to members) of such professionals. Alternatively, you could post a question in the discussion forum - say where you're from and others may be able to advise you on a nearby doctor.
TS is genetically inherited. If a parent has the gene, there is a 50% chance of each child inheriting the gene. If they do, a boy has a 99% chance of the gene being expressed either as TS (50%), or another tic disorder, or as ADHD or OCD. TS is closely related to ADHD and OCD, and it is usually the case that other members of the family have symptoms of one or more of the 3 disorders. A girl has a 70% probability of the gene being expressed as one of these disorders. Boys with TS outnumber girls by 4:1.
In TS, there appears to be an over-sensitivity to, or inability to regulate, dopamine - a neuro-transmitter (a chemical which helps the nerve signals on their way). A current theory is that the problem may also lie with the action of dopamine on the various receptor sites. Other neuro-transmitters such as serotonin may also be involved.
Streptococcal
infection is thought to be a trigger/cause for Tourette Syndrome or OCD symptoms
– PANDAS (Paediatric
Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). PANDAS is often of very sudden onset (following
?strep throat infection). These children experience worsening symptoms when they
have a strep infection. It is not the streptococcal infection itself which
is the problem, but the body's responsive antibodies, which appear to trigger the TS or
OCD symptoms. More PANDAS information
available from the Links page.
TS is thought to be under-diagnosed in its milder forms. It is usually “Tourette Syndrome Plus” (with associated/co-morbid problems such as obsessional-compulsive behaviours, attention deficit problems, and other behavioural issues) that families seek help for.
TS alone often causes no
behavioural or educational problems, with the only symptom being motor and vocal tics.
Professor Mary Robertson, in her new book "Tourette Syndrome - A Practical Guide for Teachers, Parents and Carers" (which I thoroughly recommend - see Books page) says "We should like to emphasise again that:
- Majority of children with TS have it in a mild form
- They are probably undiagnosed
- They are not under the care of a doctor"
And "In one family study of TS adults and children in the community, the majority were mildly affected, and only 8 out of 50 (16%) individuals with TS had ever seen a doctor for symptoms....(Robertson and Gourdie 1990)"
Professor Robertson (and Baron-Coehn 1998) suggest there are 3 types of TS. 'Pure TS', (or TS Only) which consists of motor and phonic tics only. 'Full Blown TS', which includes coprolalia, copropraxia, echolalia, echopraxia, palilalia. And 'TS-Plus', which includes ADHD, OCB or OCD, Self-Injurious Behaviours. This sub-type would also include those TS patients with depression, anxiety, personality disorders, Oppositional Defiant Disorder, Conduct Disorder and any other learning problems.
Treatment often isn't necessary. In the vast majority of cases, TS is mild - a diagnosis though is still important. Having a name for the tics may be all that is required, an explanation for years of tics and "habits" (as people often call them), for the teasing, for feeling "weird" and being misunderstood. If the tics, or other conditions, are causing problems, then there are medications that can help. There is no one medication that will rid all tics and it is often necessary to try 2 or 3 (maybe more) medications, and then vary the dosage until optimum relief is experienced.
Other methods such as learning to relax, alternative treatments or behavioural therapy may help. Many people are able to redirect a troublesome tic, and substitute another, perhaps more acceptable one.
People with TS live a normal life span. It is thought that tics may peak or worsen at or between the ages of 9-15, and thereafter decrease. Many people with TS, about a third, lose all tics completely by adulthood, although tics sometimes do return later in life. Another third experience a reduction in their symptoms by adulthood, and the remaining third have tics (which may be severely disruptive) throughout their life. However, as can be seen from the list of positives - the vast majority of people lead a successful life. Another study (Leckman et al 1998) has shown that in about half of patients, the tic symptoms will remit completely by late adolescence. More info from the FAQ page, and at Tourette Syndrome - Now What?. Excerpts of research articles here
Article: Many kids with Tourette's get better with time
There is an information sheet or leaflet which may be printed out - they contain the same information which has been condensed, and which you may find helpful to give to others.
Please see the Links page for more treatment or medication information.
Explaining Tics