New hope in coping with a mystery syndrome

Tourette's syndrome, where the child suffers from symptoms like tics and compulsive obsessive behaviour, has been baffling physicians for some time. However, there is hope...

Eight-year-old Mike Lockman brought home a note from his teacher which said she was worried about his behaviour. She thought Mike was trying to distract other children by making "silly squeaking noises, snorting, and wiggling his nose". Mike's parents, Tom and Sarah, too, had noticed that Mike could not sit still at the dining table; he would have terrible temper outbursts, and he had become extremely possessive about his toys.

He still loved his books and was excellent at memorising information and facts. They realised that he had been "sniffing" (Mary, in fact, even had him tested for allergies), blinking his eyes, and tossing his head for about two years now, and they had got accustomed to these rather odd behavioural patterns. When the diagnosis came in as being Tourette's syndrome, the Lockmans had no idea what this new term meant, and were frightened.

Thus began the Lockmans journey into Tourette's syndrome (TS), an unusual medical condition which continues to baffle physicians. Some symptoms are well-known to the public, but families need greater support from the community in general and from schools in particular.

TS belongs to a group of neurological conditions known as movement disorders and starts at any age before 18 years. At present, Tourette's syndrome is defined and diagnosed entirely by symptoms, and there is no test which can positively identify TS.

The tics and tremors exhibited by a TS sufferer vary in type and intensity. Initially, the tics tend to be eye tics such as blinking of the eyes or opening them widely, followed by facial tics – nose twitching, licking and biting of lips, grimacing. These can disappear altogether and reappear years later in a more complicated form.

Vocal tics – such as sniffing, coughing and grunting – generally appear at a later stage. Many persons are able to partly control or disguise tics in different ways. For example, they pretend to clear their throat as if they have an allergy; or toss the head as if the hair is coming into the eyes. These are coping strategies. The effort of trying to control tics can be physically tiring and once in the safety and privacy of his home, a child with Tourette's syndrome may just want to relax. The relaxation may actually increase the involuntary tics.

Periods of extreme excitement, stress, and tension (holidays, exams, menstrual periods and so on) usually cause an increase in tics.

Children suffering from Tourette's syndrome have other associated symptoms such as compulsive, obsessive behaviours. One child reported how he had to touch things three times, and the compulsions were interfering in his school work. For example, he began worrying about numbers to such an extent that he had to drop maths completely. TS sufferers also exhibit hyperactive behaviour and may have poor social skills. They are disorganised, have poor listening skills, and find it difficult to maintain attention.

In school they can be bright over-achievers, but are socially withdrawn and suffer a low self-esteem because of their behaviour and inability to maintain friendships. In the presence of specific learning disabilities, a child with Tourette's syndrome may require a small classroom size with individual help. The academic programme may require to be modified, and alternatives to writing, reading and note-taking should be provided. Teachers should not allow these children to become the butt of jokes but should seek opportunities to encourage their self-esteem.

Treatment of TS is complicated and families require a lot of support. Medication combined with behaviour therapy is the most typical pattern of intervention. Stimulant medicines such as Ritalin must be used with caution with children who have TS because it can aggravate the tics.

Adolescence can be a turbulent time for most TS youngsters and planning for their future may seem a daunting task for parents, but growing research offers a lot of hope. Today, people with TS are proving their excellence in many fields: they are writers, musicians, basketball and baseball players, even surgeons.