My six-year-old has Tourette Syndrome...
Q. Our six-year old son has multiple tics and has been diagnosed with Tourette Syndrome. His behaviour is challenging and we are worried about his future. We do not want to go down the route of medication. A. The key feature of this inherited neurological condition is uncontrollable and entirely involuntary movements (eg blinking, facial twitches and shoulder shrugging) and sounds. One mother described her seven-year old ‘making a continuous stream of whooshing, growling and animal-type noises at home at the end of a school day’.
There are no specific diagnostic tests for Tourette Syndrome (TS) but it is thought to affect one schoolchild in every hundred, the majority boys, and a much smaller number of adults. ‘The most important message is that most children outgrow the condition’, according to psychologist Dr. Tara Murphy and psychiatrist Dr. Isobel Heyman from the Tourette Syndrome Service at Great Ormond Street Hospital for Children. ‘Even if tics do not completely disappear, young adults generally cope with them well. So feeling optimistic and helping your son not to be defined by the tics is crucial. He will really be helped by adults accepting him, helping him manage tics and emphasising his strengths.’
Oppositional behaviour – being defiant and disruptive – is the most common behavioural problem in young children generally and even more common in children with TS. Behaviour management strategies, sometimes called “parent training”, work well. ‘The basic principle is to reinforce and reward the behaviour you want to see and pay as little attention as possible when the child is naughty or difficult. Your GP can access this for you via your local child and adolescent mental health services (CAMHS).’
Behavioural techniques for helping children manage tics can be valuable in reducing the intensity and impact in some children. Experts are researching to see if these can be delivered to groups of children. Comprehensive behavioural intervention for tics (CBIT) is beginning to be available for adults via telemedicine, eg Skype.
Relaxation training, yoga and meditation, also bodywork, gentle stretching exercise, aromatherapy and hypnotherapy may help TS, according to the British charity Tourettes Action (www.tourette-action.org). Research is ongoing into the role of mobile apps in helping TS among young people, for instance with habit reducing training and relaxation.
Children may be referred for an educational psychology report (on the NHS or a private assessment) to help parents and teachers know how best to help children individually, from day to day. The parent of one child found it helpful to know he had ‘loop thinking; where the child gets stuck on the same idea. Addressing him by name, making eye contact and asking him clearly to do something different helped break the cycle.
Nutritional therapy may prove useful although there is little sound scientific evidence so far, apart from a German study that suggested caffeine-containing drinks might worsen tics, according to Drs Murphy and Heyman. However, some health professionals in America recommend diets that help rebalance the gut, repopulating it with good bacteria(treattourettes.ca). The Association for Comprehensive NeuroTherapy (www.latitudes.org) was started in 1996 to give families information and resources on how factors including diet and nutritional imbalances, chemical exposures, allergies and the immune system can affect TS and other neurological conditions.
A YOU reader whose granddaughter has an allergy to bee and wasp stings reminds anyone who is affected to carry an adrenaline injection kit (such as Anapen, EpiPen or Jext), ideally two in case one fails or a second dose is needed. Anyone who shows signs of a severe reaction, e.g. difficulty in breathing, feeling dizzy or weak, or a rash appearing away from the sting, should call 999. More information from the Anaphylaxis Campaign/www.anaphylaxis.org.uk
WEBSITE OF THE WEEK: www.dailygood.org
This is the good news site to visit when, as one reader puts it, ‘you think the world is going to hell in a handcart’. The content is always positive and mostly interesting, inspiring and heart-warming. Recently I liked ‘How to retrain your brain with three words’ from Freakonomics authors Steven D. Levitt and Stephen J. Dubner (the words? ‘I don’t know…’), and a batch of uplifting photos, including a blind girl experiencing joy from touching a horse’s face.