Rylan Vogelzang, a 12-year-old living with Autism and Tourette Syndrome, made a picture book about what it’s like living inside his brain called “If I Squeeze Your Head I’m Sorry.” His mother, Gwen Vogelzang, and co-illustrator Ellie McLaughlin talk about the book.
Tourette’s syndrome
The cause of Tourette’s syndrome is unknown. However, it’s thought to be linked to problems with an area of the brain known as the basal ganglia.
The basal ganglia are a group of specialised brain cells located deep inside the brain. The cells help regulate the body’s movements.
Research suggests the basal ganglia may also play a role in higher brain functions such as motivation and decision making.
In people with Tourette’s syndrome, it appears tics are the result of a temporary problem occuring inside the basal ganglia which disrupts the decision-making process.
The person suddenly develops an unconscious urge to perform an action (the tic) that the conscious mind regards as both unwanted and unexplained.
It’s not known what actually goes wrong with the basal ganglia. One theory suggests excessive levels of a naturally occurring chemical called dopamine, which can have powerful effects on the brain, could be responsible.
Alternatively, the dopamine levels could be normal in people with Tourette’s syndrome, but they may be particularly sensitive to its effects.
Brain imaging studies have also shown the structure of the basal ganglia is different in people with Tourette’s syndrome. However, it’s unclear whether these changes are due to a dopamine imbalance or sensitivity, or the cause of it.
As with the cause of Tourette’s syndrome, it’s not known what triggers it. There are several theories, which are outlined below.
Genetics appears to play a part in some cases of Tourette’s syndrome, as it often runs in families.
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Further evidence suggests if one identical twin develops Tourette’s syndrome, there’s about a one in two chance the other twin will also develop it.
A genetic mutation may disrupt the normal development of the brain, triggering the symptoms of Tourette’s syndrome. A genetic mutation is where the instructions contained in all living cells become scrambled in some way.
Read more about genetics.
Another theory is Tourette’s syndrome may be linked to a childhood infection by streptococcal bacteria (bacteria that usually cause a sore throat).
In an attempt to fight off the infection, the immune system produces antibodies (proteins). The antibodies may interact with brain tissue, affecting the brain’s functioning.
Following a throat infection, some children have developed the symptoms of Tourette’s syndrome, as well as the symptoms of obsessive compulsive disorder (OCD).
Some doctors believe this may be a separate condition in its own right and have called it ‘paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections’, or PANDAS for short.
However, the concept of PANDAS is controversial because research findings have been inconsistent. It may be that it’s only responsible for a small number of Tourette’s syndrome cases. Further research is needed to clarify the issue.
In the meantime, the same treatments are recommended as those used in ordinary tic disorders and Tourette’s syndrome.
Tourette’s Syndrome
If your child has tics, it doesn’t necessarily mean they have Tourette’s syndrome.
Children often develop tics before growing out of them after several months. These are known as transient tics.
For tics to be classified as Tourette’s syndrome, they have to be present for at least a year and include at least one vocal tic.
Tics can be:
vocal (sounds) – such as grunting, coughing or shouting out words
physical (movements) – such as jerking of the head or jumping up and down
Tics can also be:
simple – for example, making a small movement or uttering a single sound
complex – for example, making a series of movements or speaking a long phrase
Most people diagnosed with Tourette’s syndrome have a combination of physical and vocal tics, which can be both simple and complex.
Examples of simple vocal tics include:
grunting
clearing the throat
coughing
screaming
sniffing
squeaking
blowing
Examples of simple physical tics include:
blinking
jerking the head
twitching the nose
rolling the eyes
twisting the neck
rotating the shoulders
Examples of complex vocal tics include:
repeating other people’s phrases (echolalia)
repeating the same phrase over and over again (palilalia)
swearing loudly or shouting inappropriate words and phrases (coprolalia)
Swearing is often associated with Tourette’s syndrome, but it’s actually a fairly uncommon symptom affecting a minority of people with the syndrome.
Examples of complex physical tics include:
shaking the head
hitting or kicking objects
jumping
shaking
touching themselves or others
copying the movements of others (echopraxia)
making obscene gestures, such as giving someone ‘the finger’ (copropraxia)
Most people with Tourette’s syndrome experience uncomfortable or unusual feelings before having a tic. These feelings are known as premonitory sensations.
Premonitory sensations are only relieved after the tic has been carried out, in a similar way to how an itch can only be relieved by scratching it.
Examples of premonitory sensations include:
a burning feeling in the eyes that feels as if it can only be relieved by blinking
tension in a muscle that can only be relieved by twitching or stretching the muscle
a dry or sore throat that can only be relieved by grunting or by clearing the throat
an itchy joint or limb that can only be relieved by twisting the joint or limb
If your child has Tourette’s syndrome, their tics will probably tend to follow a set pattern. They may be worse during periods of:
tiredness
illness
nervous excitement
relaxation after a busy day
On the other hand, the tics are often reduced when they’re doing an enjoyable activity involving a high level of concentration, such as reading an interesting book or playing competitive sports.
You may find your child is able to control their tics when they’re in situations where they would be particularly noticeable, such as in a school classroom. However, controlling tics can be difficult and tiring over prolonged periods of time.
Many children with Tourette’s syndrome often experience a sudden ‘release’ of tics after trying to suppress them – for example, after returning home from school.
You should contact your GP if either you or your child starts experiencing tics.
Many children have tics for several months before growing out of them, so a tic doesn’t necessarily mean your child has Tourette’s syndrome.
However, symptoms such as tics do need to be investigated.