Tourette Syndrome Is A Complex Medical Problem, With Many Co-Morbidities
Question: Q. Our eleven-year-old son was diagnosed with attention deficit hyperactivity disorder when he was five. He has been taking Ritalin since grade 2, and this has helped him greatly in paying attention and learning. He always has a strong temper. But in the last two years, his behaviour has become a lot worse. He flies off the handle with just about anything. He has destroyed some of his favourite toys, and has caused a lot of damage around the house when he gets angry. In the last few months, we noticed him twisting his neck and shrugging his shoulders. Sometimes he makes funny noises which doesn’t seem to make sense. The one thing that we cannot stand is his swearing. None of us swear at all, and we don’t know where he has learned those words. I am really afraid that he is getting worse. Our friends said that it is because of the Ritalin. Is that possible?
What you have described is likely a condition called Tourette Syndrome (TS). It was first described in 1885 by a French neurologist Gilles de la Tourette. It was believed to be an uncommon problem. However, with better understanding of the full spectrum of this disease, TS is now recognized to be a common childhood and adult problem.
As you read this column, you will notice that TS is a very complex medical condition of the brain. From studies of siblings and families of patients diagnosed with TS, scientists have come to the conclusion that it is a hereditary condition, passed on from parents to their children through the genes. Parents and siblings of children with TS often have some of the symptoms, although they are much milder.
In the last few decades, scientists have made tremendous progress in the understanding of the brain and its functions. We know that brain cells communicate by using chemicals between the endings of nerve fibres (these are called synapses). There are many different chemicals working in the brain. In TS, chemicals like dopamine and serotonin (and probably others) are not working properly in some parts of the brain. However, the degree of problem is quite variable, so that symptoms of TS vary from person to person, and can even change in a person with time.
The most distinguishing feature of TS is the presence of tics. There are motor and vocal tics. Motor tics are caused by movement of muscles. Common motor tics include blinking of the eyes, shrugging of the shoulders, flipping head backwards (like trying to get hair out of the eyes), opening the eyes or mouth widely, rolling the eyes upwards, squinting, facial grimacing, arm stretching, or licking of lips.
Some children can have more complex motor tics, like passing hand through the hair in a combing fashion, skipping, jumping, dropping down on one knee, or picking at sores. Some people with TS describe a feeling that their clothes are being too tight. They need to relieve tension by pulling at their clothes, sometimes creating the tic of picking at their crotch.
These tics can appear as early as 4 or 5 years of age. Initially parents may think that they are habits only. They tend to happen almost daily, often many times a day. A child can have one tic for weeks or months, and then change to another tic. Motor tics often increase in elementary school years so that they become much more noticeable, as in your son’s situation.
Some children can suppress the tics under certain circumstances, like at doctor’s office, and sometimes at school. Asking a child to stop the tic, however, is often useless. Within minutes, the child will resume the tic, to the dismay of parents. There is a tendency for tics to get worse under stress.
There are also many kinds of vocal tic. The most common ones are clearing of the throat, grunting, yelling, screaming, sniffing, barking, snorting, coughing and humming. Some children will make engine and animal noises. Sometimes it is difficult to differentiate these motor tics from normal childhood behaviour. Generally, tics are repetitive and they tend to happen at inappropriate times.
The most distressing and unacceptable vocal tic is swearing. Common words that are used are “fuck,” “shit,” and “piss.” These are often said inappropriately, when the child is not angry. It can happen in the middle of a sentence, without relationship to anything else that is being said. Sometimes only the beginning of the words come out, like “fu” or “sh,” so that others may not hear the swear words.
Some people with TS can tell that these swear words keep going around in their heads like obsessive thoughts, although they do not speak them out. Sometimes it is difficult to decide whether swearing is a tic, or the person just like to swear. Swearing tics usually begin several years after onset of motor tics, although I have seen children with swearing tics as young as two or three years of age.
The cause of swearing tic is unknown. Many of the symptoms of TS is felt to be due to a lack of inhibition. Most people know that swear words are wrong, and would not use them under most situations. People with TS seem to have difficulty controlling themselves, even though they know that others don’t like to hear them.
In addition to tics, there are many other features of TS. The most common one is attention deficit hyperactivity disorder (ADHD). The symptoms include short attention span, easy distraction, impulsivity, and hyperactivity. A child with TS may not have all the symptoms of ADHD, and the symptoms can be very mild and insignificant. In your son’s situation, problems with ADHD started many years before tics appeared.
I have to emphasize here that not all children with ADHD will develop TS, and not everyone with TS will have significant symptoms of ADHD.
Obsessive compulsive behaviour (OCB) occurs in about half of those diagnosed with TS. Obsessive thoughts are quite variable. In a young child who is fascinated with dinosaurs or planes, one has to be careful to distinguish this from obsession. Those who have obsession cannot leave the subject easily, and will return to it repeatedly. Some children can have obsession with counting, spelling words backwards and forwards. Some of them can be excellent spellers as a result.
Those with compulsion will have rituals that they have to follow, otherwise “things are not quite right.” They may wash their hands excessively, or check windows, doors, or stoves repeatedly. Some can have compulsive touching or smelling, or repeatedly erase their work because it is not perfect. There is a funny movie called “As Good As It Gets.” It depicts a man with severe OCB and is worth watching if you want to know more about it.
One of the most difficult behaviour that affects children and adults with TS is conduct disorder. It is not totally clear what proportion of children and adults with TS has this problem, but it is very often the reason why parents or teachers seek help from professionals. Some have difficulty accepting “no” for an answer and would “fly off the handle at the drop of a hat.” They can be argumentative, confrontative, and they are never wrong. Everything has to be their way, and if anything goes wrong, it is always someone else’s fault.
Some of them have very short temper, and can throw tantrum over nothing. When they get angry, they can be extremely aggressive, hurting people around them. These rages can cause severe problem in school and at home. As they get older, their behaviour can easily get them into trouble with the law. In some children, this conduct problem can overshadow other symptoms of TS, including tics.
Phobia is another fairly common problem. I have known children who would refuse to go out of their home in the summer because of bees and other insects outside. They can be afraid of darkness, height, being alone, or being in a crowd. They can get terrified and severely misbehave if put in those situations. Some will develop panic attacks that can last for minutes to hours.
Mood swings are very common in those with TS. As a result, a child can be happy one moment, but can be sad, or even depressed, the next. In some children, depression can become serious enough to require medical treatment. Alcoholism and drug addiction are also common. I have seen some young people started heavy drinking in their teenage years. Their families also have a high incidence of alcoholism or addiction.
A small percentage of children with TS have learning disability of one kind or another. That is why it is important to monitor these children carefully and offer them help at an early age to prevent school failure.
As you can see, Tourette Syndrome is a rather complex medical condition, presenting differently in different individuals. Unless one asks the right question, the diagnosis can be easily missed. This is especially true if tics are not obvious or thought to be habits only.
For years, doctors have mistakenly blamed Ritalin as the cause of tics. More recent research has shown that tics are not caused by Ritalin, although Ritalin can “unmask” the tics that will appear as part of TS. For those children with TS who have significant symptoms of ADHD and tics, treatment with Ritalin will often reduce tics.
Because of the complexity of this condition, I am not able to give you any suggestion, other than advising you to see someone who is very knowledgeable about Tourette Syndrome. This can be a paediatrician, a neurologist, or a child psychiatrist.
If you feel a little discouraged because of the information here, please don’t. There are many successful people who have Tourette Syndrome. Dr. Carl Bennett, a Canadian surgeon and pilot, has TS. His story, “A Surgeon’s Life,” was written by Dr. Oliver Sacks, a neurologist. You can find it in the book “The Anthropologist from Mars” by Dr. Sacks.