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  • Shaken Baby Syndrome

    Tuesday, 21 July 2015 16:28
  • Amniotic fluid problems

    Thursday, 14 May 2015 12:54
  • Choosing a pre-school

    Friday, 10 April 2015 17:50
  • Newborn reflexes

    Tuesday, 03 March 2015 15:49
  • Mastitis

    Tuesday, 03 March 2015 15:41
  • Pelvic floor exercises

    Wednesday, 11 February 2015 17:20
  • Colic

    Wednesday, 11 February 2015 17:11
  • Antenatal Classes

    Monday, 03 June 2013 09:34
  • Strap-in-the-Future

    Thursday, 30 June 2011 13:52

Tourette Syndrome (TS)

tourette small“You can’t help but do movements, it’s almost like…you have to do something. It’s like a volcano – almost – if the volcano doesn’t explode the world will blow up.”

Tourette Syndrome (TS) is a neurological condition that causes an individual to make involuntary, stereotypical sounds and movements that they cannot control. These brief, repetitive, purposeless, non-rhythmic, impulsive sounds and movements are known as tics. Tics that produce movements are known as “motor tics; and those that produce sound are called “vocal” or “phonic tics”. The condition was first described in 1885 by a French neurologist, Dr. Georges de la Tourette. TS affect 1 in 100 children, mostly boys. Tourette’s symptoms generally begin in early childhood, between the ages of 3 and 9. A significant number of children (1 in 5) will experience one or more tics at some point in their development. The most common being eye blinking that is not due to an allergy or vision problem. If tics are present on and off for more than a year and follow a pattern of emergence, worsening, subsiding, then disappearing, a diagnosis of Tourette’s needs to be considered.

Diagnosis:

Doctors diagnose TS on the basis of observation, reports and by obtaining a detailed history from the parent or child. There is currently no test to confirm a diagnosis of TS. Your doctors may order tests to rule out other conditions that produce similar symptoms.

Cause:

Scientists are unsure about what causes TS, but it seems to be the result of problems in one or more areas in the brain. Tourette’s is thought to have a genetic basis but the exact gene or genes involved are unknown. Environmental and situational factors also influence the frequency and severity of tics.

Symptoms:

The symptoms of Tourette Syndrome include: a minimum of two motor tics and at least one verbal tic; tics that persist for more then one year; and tics that begin before age 18.

Tics are classified as either simple or complex. They may involve movements or vocalizations. Simple motor tics are involuntary, repetitive movements, involving a limited number of muscle groups (usually the face/neck/head region). For example, eye blinking; shoulder shrugging, head jerking, or facial grimacing. Simple vocalizations commonly include repetitive throat clearing, sniffing, or grunting.

Complex tics involve several muscle groups and are made up of distinct, coordinated patterns of movement. For example, a facial grimace may be combined with a head twist and a shoulder shrug. Some complex motor tics may appear purposeful, such as touching objects or other people, jumping up and down, twisting, bending, or imitating someone else’s actions (echopraxia). Complex vocalizations consist of linguistically meaningful words or phrases. This may involve repeating one phrase over and over, either in the form of echolalia (repeating the words or phrases of others) or palilalia (repeating one’s own last words).

In their most dramatic and disabling form, complex motor tics are comprised of motor movements that are self-injurious, such as punching oneself in the face. 10-15% of individuals with TS display what is known as coprolalia. Coprolalia is a vocal tic; in which the individual utters social inappropriate words or phrases, such as swear words or ethnic slurs.

Some tics are preceded by an urge or sensation in the affected muscle group, called a premonitory urge. Examples include a rising feeling in the stomach, a build-up of tension, or a wave-like feeling moving towards the affected muscle groups. Some individuals with TS feel the need to complete a tic a certain way or a certain number of times in order to relieve the building urge or reduce the muscular sensation. In the words of one Tourette’s sufferer: “If I don’t do my tics – I get angry, cross and stressed”.

The ability to suppress or modify tics generally increases around age 10. However, experience shows that in most cases the tics will eventually be released. While some individuals are able to control their tics to a certain extent, others are not able to suppress them at all.

Tics are commonly worse during times of anxiety or excitement and tend to improve with calmness or focused activity. Physically, tics may be triggered by certain experiences. For example, neckties may trigger neck ticks and hearing another person sniff or clearing their throat may trigger vocalizations.

Tics can also happen when a person first falls asleep. They tend to diminish or completely disappear during the deeper stages of sleep. Under certain conditions, children may not tic at all, such as at the doctor’s office or when they are totally and constructively engrossed in an activity. Presenting a novel or fascinating activity or situation, shifts their neurochemistry from their tics to the task at hand.

There are a number of factors that may affect the frequency and severity of tics. Tic symptoms may increase due to time pressure, stress, arousal, before and after performing skilled tasks, during times of fatigue, illness (infection), or allergy, environmental heat, the premenstrual period, when attempting to suppress tics or talking about them, or when ingesting caffeine. On the other hand, tics may decrease during school holidays, when children are sleeping, distracted, non-anxiously engrossed, during skilled tasks, provided with novel situations, and when they are asked to suppress their tics (initial response).

Motor tics are generally more common than vocal tics. However, all tics tend to occur in “bouts” or bursts. When the number of “bouts” increases, the child is said to be in the “waxing” cycle; and when the bouts decrease, they are said to be in the “waning” cycle.

Disorders associated with TS:

Most children diagnosed with TS, will also have symptoms of other disorders or conditions. These include Obsessive-Compulsive Disorder (OCD), Attention Deficit Hyperactivity Disorder (ADHD), and mood disorders such as anxiety, depression and bipolar disorder. Some children may experience problems with fine motor control and visual-motor integration. It is important for parents to be aware of possible comorbidity (the existence of more than one neurological disorder) and for educators to be alert to the presence of other conditions that may impact on academic and social-behavioural functioning.

The progression of TS:

Tics are more common in children than adults and there seems to be a tendency for things to get worse before they get better. In the majority of cases, tics tend to reach their peak severity between the ages of 10-12. Most people with TS show an improvement in symptoms in their late teens or early twenties, and tics may disappear completely.

Treatment:

There is currently no cure for TS, but there are several effective treatments geared towards reducing the severity and frequency of tic symptoms, as well as associated problem areas.

Tics are generally mild and do not require medication. If they are more pronounced and difficult to handle, medication may be considered. The aim is to find the right medication and dosage, and to minimize side effects, such as sleepiness, restlessness, weight gain and behavioural changes.

Behavioural treatments such as awareness training and competing response training are helpful ways of managing tic symptoms. These interventions focus on habit reversal. During awareness training, the individual is asked to identify each tic out loud. The aim of the competing response part is to learn a new behaviour that cannot be performed at the same time as the tic. For example, if a person has a tic that involves head rubbing, they may learn to cross their arms or place their hands on their knees so that head rubbing cannot take place.

Comprehensive Behavioural Intervention for Tics (CBIT) has also had promising results in reducing tic symptoms and related tic impairment in children. CBIT involves establishing a better understanding of the types of tics a person is having, as well as situations that make tics worse. If possible, changes are made to the surroundings, together with habit reversal techniques. For example, if a child often has certain tics at school, the child’s teacher can be educated about TS and possibly rearrange the classroom seating to make the tics less visible. At the same time, when the child experiences a premonitory urge, they can learn to perform a new behaviour to decrease how often the tic occurs.

Psychological distress can make tics worse. Children with TS may feel upset or angry about their condition. Counsellors and TS organizations can help children explain their tics to others. This allows for a greater level of acceptance and understanding, and the realization that children with Tourette’s are like everyone else.

Parent training can also be beneficial for children with TS and related disorders, and their families. Parent training helps parents understand their child’s issues and teaches parenting skills specific to these problems. For example, the use of positive reinforcement and discipline that is effective for their child.

How to help your child:

If your child has recently been diagnosed with Tourette’s Syndrome, you may be experiencing intense emotions. While a diagnosis and knowing what is “wrong” can be a relief; you may also be feeling scared, guilty and sad. Most parents need time to process and accept the diagnosis.

Children who have Tourette’s want to be treated like everyone else. At times this may be challenging due to the symptoms and unpredictability of the disorder. One of the hallmarks of TS is tic variability. There is no way of preventing your child from going through the ups and downs of tic symptoms. Never lose sight of your child and who they are during difficult periods. Remember that your child is not a disorder; they are just your child.

Help your child accept that they may experience discomfort and obstacles when they are symptomatic. Young children may be unaware of their tics, and if they are, they may be unable to suppress them. It is not recommended to encourage your child to suppress their tics. The effort required to suppress tics may distract your child from what they need to pay attention to (such as school classes); or it may result in fatigue, stress or exhaustion, followed by the tics being released in explosive ways (delayed reaction). Model and teach your child effective coping mechanisms. Reassure them that they have your understanding, acceptance and support.

Help them discover a sense of humour and celebrate who they are. If you are constantly waiting and watching for symptoms of Tourette’s you may miss opportunities to enjoy your child.

Set realistic expectations and boundaries on the basis of your child’s unique needs. Learn to distinguish between age appropriate behaviours and those that can be attributed to the disorder. Sometimes children are just being children.

Communicate openly and honestly as a family. Do not allow any family members to use “disability” as a justification for bad behaviour that can be controlled or avoided.

Educate yourself and help others understand your child’s condition. Stand together as a family and advocate for your child. Tics are involuntary sounds and movements. As one child pointed out: “I can stop ticking when you can stop breathing”.

Children with TS are as intelligent as the general population, however they may have special educational needs. While a child’s tics may not directly impact on academic functioning, their teacher needs to be made aware of possible interference or distress and the need for some accommodations. Children with uncomplicated TS (TS only) are more likely to have visual –motor integration difficulties than their non-TS peers. This may impact on handwriting activities or copying from the board. They may also require additional time during testing to accommodate for interference from tics. Children with vocal tics may feel embarrassed when reading aloud and may hesitate to ask questions in class. In a supportive environment that makes room for tic symptoms and assists with peer issues, children with uncomplicated TS should be able to learn and perform on an equal level to their non-TS peers. Children with TS need your help to develop healthy peer relationships and to boost their self-esteem, especially concerning school and family functioning. If a child has TS and ADHD, there is an increased risk of learning disability and an increased likelihood of referral for special education. Take your child for an assessment and place them in a school that best suits their needs.

Take care of yourself. If you feel overwhelmed, take some time out to relax or enjoy activities with friends.

“And while you may want to change the world to make it a safer place for your child, while you’re out trying to change the world, remember that we need to help our children fit into the world as it is.” (Leslie E. Packer: 2004)

References

Leslie E. Packer, PhD. A letter to parents of children newly diagnosed with Tourette’s Syndrome. http://www.schoolbehavior.com. Published 2004. Accessed November 20, 2013.

Leslie E. Packer, PhD. Tic and Tourette’s Syndrome: Overview. http://www.schoolbehavior.com/disorders/tourettes-syndrome/tics-and-tourettes-syndrome-overview/. Published 2004. Accessed November 26, 2013.

National Institute of Neurological Disorders and Stroke. Tourette Syndrome Fact Sheet. http://www.ninds.nih.gov/disorders/tourette/detail_tourette.htm. Published January 2012. Updated October 19, 2012. Accessed November 20, 2013.

Tourette Syndrome Association, Inc. What is Tourette’s Syndrome? http://tsa-usa.org. Published 2010. Accessed November 20, 2013.


You Tube. Kids with Tourettes In Their Own Words. http://www.youtube.com/watch?v=kGf6jBxAs6g.
Published June 4, 2013. Accessed November 26, 2013.