Supporting children affected by epilepsy
CEO and Managing Director of Epilepsy Action Australia Carol Ireland explores the difficulties children affected by epilepsy face, and offers new options to support them.
Today, around 147,000 children and youth in Australia are living with epilepsy. Each year a further 7,000 will develop epilepsy.
The incidence of epilepsy is high in young children. As the youth and adults of our future, the earlier support can be given to children and their families affected by epilepsy, the greater is their chance of developing the skills and resources needed to optimise their life outcomes.
Research shows that a child’s development is most rapid during their pre-school years. Early intervention can bring out the full potential of the child and lead to parents changing their attitude towards their child and becoming better able to deal with their child’s behaviours. It is key to building resilience, and much preferable to remediation attempted later. During the early school years, misunderstanding and lack of education about the impacts that epilepsy can have on learning have led to many children missing the school support required to assist them to achieve to their capacity. Some of the neurological effects on cognition can be subtle or be misinterpreted as ‘day dreaming’ or ‘poor behaviour’. Lack of early identification and support for these learning needs can have profound consequences on the child’s learning as well as on the social and emotional experience of school.
Sadly, two-thirds of children and young people with epilepsy in mainstream schools under achieve academically in relation to their intellectual skills. Then there is the impact of epilepsy on our youth. Based on research and first-hand experience, Epilepsy Action Australia recognises that youth with epilepsy are particularly vulnerable to the risks associated with the condition compared with other age groups. Stress, depression and poor self-esteem are significant problems among teenagers, and sadly the risk of suicide is even greater in depressed youth with epilepsy than in the general youth population.
Lack of early identification and support for these learning needs can have profound consequences on the child’s learning as well as on the social and emotional experience of school.
Tragically, young people with epilepsy also have a higher risk of SUDEP (Sudden Unexplained Death in Epilepsy), yet most remain unaware of the everyday risk factors involved. Lifestyle changes for young people like parties and other social events may interfere with the teen’s ability to make the right decisions, including taking their medication as prescribed and maintaining healthy eating habits and sleep patterns. Further, the misconceptions of other young people about epilepsy can cause misunderstanding, stigma or even isolation for the young person with epilepsy.
In September 2013, seventy three young people aged between 16 and 23 who are living with epilepsy came to Sydney from across Australia to attend Epilepsy Action’s national youth forum. It was heart breaking to hear from many of them about their lack of friends and their common experiences of teasing and bullying. There is no doubt that the complexity and unpredictability of seizures can greatly constrain young people’s options for independent living. Though they may have a basic understanding of seizures and related safety concerns, it seems youth are less well informed about how seizures and learning, emotional, behavioural and social adjustment are related - yet this is essential if they are to take responsibility for their own care.
So what can we do to optimise outcomes for children and youth with epilepsy? Epilepsy Action wants to partner with parents to provide the best support possible for their child’s development, and provide youth access to accurate information and support to make appropriate life choices, improve their future prospects, security, and social adjustments. We also recognise that GPs have a unique and trusted relationship with families of children and youth with epilepsy and can play a key role in helping optimise life outcomes.
Last year we developed MyEpilepsyKey: a brand new innovation from Epilepsy Action to support people living with epilepsy to access the tools and resources they need to live well with epilepsy. This key–shaped USB stick provides access to specially ‘curated’ content that has been tailored to meet the needs of people with epilepsy, accessible anytime, anywhere via internet enabled devices. MyEpilepsyKey offers four streams of information and resources tailored to meet the needs of parents of children with epilepsy and youth with epilepsy, as well as online services to aid the journey with epilepsy no matter what age or stage of life. Please get in touch with us to learn more about this resource.
As the trusted doctor of a child or young person with epilepsy, GPs can make a real difference to the lives and futures of these young patients and their families, and we hope to be able to assist you in supporting your patients.
Carol Ireland Dip Reh. Couns. FAIM, MFIA
Carol is the CEO and Managing Director of Epilepsy Action Australia, with an extensive background spanning 30 years in the not-for-profit human services sector including chief operations and other senior management roles. Learn more about Epilepsy Action Australia at http://www.epilepsy.org.au/