tsihead

4. More Than Just Tics

Sometimes people with TS also have other difficulties. If you find that you have lots of worries and have to do things that cancel out the worries or find that you have difficulties paying attention, are very active and have difficulties sitting still and getting work done then it may be helpful to speak with a health professional. If these activities/things take up a lot of time, upset you or mean that you cannot get through the day as easily as you would like to then it is a good idea to go to your doctor and ask to see a specialist.

The Future

It may be helpful to know that for most young people with TS, their tics will decrease significantly by the time they are 16 or 17 years. Having tics should not restrict your life. Some people worry that they will not be able to drive or go to university due to their tics. This is not the case. Although having tics may be making you feel frustrated at the moment, it is helpful to know that many people have tics,everyday and manage to live very happy, fulfilled lives.

The main thing to remember that having Tourette Syndrome is only a very small part of you. Most of all you are you.

Suggested Reading

• Nix Your Tics! Eliminate Unwanted Tic Symptoms:A How-To Guide For Young People, by Duncan McKinlay 2007

• Tic Talk: Living with Tourette Syndrome: A 9-Year-Old Boy’s Story in His Own Words by Dylan Peters, Paul Howey, and Zachary Wendland 2009

• Treatments that Work series, ‘Managing Tourette Syndrome – a behavioural intervention’. D. Woods, 2008. (Professional support – workbooks for adults and children)

• ‘Coping with Tourette Syndrome – a workbook for Kids with Tic Disorders’, Sandra Buffolano, 2008. (Parents and families guide)

Tourette Syndrome and Co-occurring Conditions

The strict definition of Gilles de la Tourette syndrome is that the child or adult will have a history of multiple motor (simple or complex) and one or more vocal tics (simple or complex) for a period greater than a year with no time without the tics of longer than 3 months.

Tourette syndrome is often described as a syndrome rather than simply characterised by the tics themselves. The syndrome usually refers to other behavioural difficulties which will be described briefly below. It is suggested that if you have concerns that a child or adult who has tics also has any of the difficulties mentioned below that you make an appointment to speak with your doctor discuss your concerns with them so that a referral can be made to the appropriate health or educational professional.

Attention Deficit Hyperactivity Disorder / Attention Deficit Disorder (ADHD / ADD)

A significant number of people with tics (up to two- thirds) also have difficulties with attention, hyperactivity and impulsivity. These difficulties are often present before the tics are seen. Sometimes tics can be mistaken for fidgetiness seen in children with attention difficulties. Studies of children with Tourette syndrome and attention difficulties suggest that it is often the difficulties with attention that can cause them difficulties with learning and social interactions. A combination of behavioural and medical treatments for treating ADHD are considered to be helpful.

Irish websites which offer additional information on ADHD and local supports for children, parents and adults with ADHD are www.hadd.ie, www.adhd.ie and www.incadds.ie.

Book references which also add further information are: ‘ Helping Kids and Teens with ADHD in School - A Workbook for Classroom Support and Managing Transitions’ by Joanne Steer and Kate Horstmann.

Obsessive Compulsive Disorder (OCD)

Another commonly reported difficulty by children and adults with TS are difficulties with obsessions (a recurring unwanted thought) in which the person feels that they have to carry out an action (compulsion) in order to stop a negative consequence from occurring. These thinking and behavioural patterns are experienced at some level by many people, but tend to take up a lot of time and cause high levels of distress to people who have OCD. The effects of OCD can cause the child or adult to have difficulties at school or work and in their everyday function. Studies show that both children and adults can benefit from Cognitive Behavioural Therapy and / or medication to treat the symptoms.

Websites which provide some more information on OCD are www.ocdireland.org, or a UK website www.ocdaction.org.uk

Books which may be of interest: Breaking Free from OCD by Jo Derisley, Isobel Heyman, Sarah Robinson, Cynthia Turner and Lisa Jo Robinson. An extensive booklist on OCD is also available on www.ocdireland.org.

Anger Outbursts and Mood Difficulties

Another difficulty often found in people with TS are rage attacks or anger outbursts. These episodes present similar to the sorts of tantrums seen in young children. The tendency to having a ‘short-fuse’ is likely to be associated with the brain-basis of TS but may also be due to frustration experienced from having to manage frequent tics. There are helpful behavioural approaches to managing these sorts of episodes. A good understanding of TS by the person themselves, their family and those around them may also help manage these episodes and develop strategies to manage them. Some people with TS may experience low mood. Strategies to support mood and support the person should be discussed with your doctor.

Helpful web based references include: www.cpri.

thehealthline.ca/clinics.asp

Specific Learning Difficulties

Most children with TS will have learning abilities similar to those found in the typical population. However, having TS may increase the likelihood of needing support for a specific learning difficulty such as dyslexia, dyspraxia and specific language impairment. Some children with tics have been found to have difficulties with writing and fine motor control and co-ordination. If this is the case then it may be appropriate to consider additional strategies to support these difficulties at school and work. It is recommended that if you have concerns about learning in a child or adult with TS then this is discussed with an educational professional as soon as possible.

Depression

Depression is a very common disorder that can affect children, adolescents and adults. When a person is suffering from a depressive episode he/she may experience low mood or sadness or a lack of enjoyment in life for most of the day, every day for a period of two weeks or more. In young people sadness may show itself as being irritable or angry. People with depression often have other symptoms, such as poor concentration, a lack of interest in normal activities or relationships, and may find that their appetite and sleep are affected (either increased or decreased). In severe cases a person affected by depression may have thoughts of self harm or suicide.

The most important thing to know about depression isthat it can be treated and fully recovered from. A variety of treatments and supports are available for all ages, and options include talking therapies as well as medications. If you are concerned that you or someone you know may be suffering from depression talk to someone about it, and start the process towards recovery. You can discuss your symptoms with your GP (or your psychiatrist if you are attending one), who will help you find the best approach to recovery for you. Useful online information regarding depression, treatments and support groups can be found on;

www.aware.ie and www.yourmentalhealth.ie , (adults and young people); www.letsomeoneknow.ie and www.reachout.com (young people).

Tourette Syndrome