Q&A with a Cinical Nurse Specialist in Paediatric Epilepsy
A: It is good to be observant and proactive when it comes to matters of mental health. Signs of anxiety can vary from child to child, here is a list of behaviours to be aware of:
– Avoidance of certain situations
– Overestimating risks and threats
– Declining invitations, showing signs of social withdrawal
– Underestimating their ability and own self-worth
– Difficulty in concentration
– Poor memory
– Irritable behaviour
– Becoming withdrawn
There are also many physiological effects of anxiety; these include fast breathing, increased heart rate, sweating, irritability, nausea, tense muscles and a dry mouth. Ask your child how they feel.
If not treated these physical symptoms can lead to tiredness, low energy, less motivation and decreased activity levels. Should the symptoms have an impact on sleep quality, this can exacerbate these feelings further and cause an inability to concentrate and think clearly.
Headspace defines anxiety as “Fear, worry or dread which is out of proportion and impacts on day to day functioning.” If you believe your child is exhibiting some of the behaviours listed above or you have other concerns, it is best to seek help.
A: Recent studies show that approximately fifty percent of children with epilepsy will experience anxiety disorders at some point. Many factors could contribute to a child feeling anxious, some directly related to epilepsy and others related to cognitive, psychological or social influences.
Some children may feel anxious about being given a diagnosis of epilepsy, and perhaps they don’t fully understand what is happening to them or what it may mean for their future. There are many myths and misunderstandings about epilepsy so ensure your child has access to age-appropriate information, be there to answer questions when they arise and reassure them they are not alone with this diagnosis. Also ask your child if they have fears about epilepsy and what they are, depending on the developmental age of the child these concerns are likely to be very different to those adults experience. Hospital appointments, tests such as EEGs, MRIs, and blood tests, seeing multiple health professionals, visiting different hospitals and the transition to adult services may be challenging especially if the child does not fully understand or know what is expected of them.
Seizures activity can make a child feel anxious, and many people report fear as an early sign of a seizure or an emotion experienced during the seizure. A common concern for people with epilepsy is the unpredictability of when and where a seizure could occur. In children, this may present as an over-dependence on a parent perhaps leading to a social or separation anxiety disorder. The child may be afraid of sustaining an injury during a seizure or feel embarrassment from either the seizure themselves or a symptom such as incontinence. Many children are not aware they are having a seizure or remember anything about them afterwards, it must be can be scary for a child to wake up and realise they are in an ambulance or the Emergency Department. In addition to raising anxiety, this can also result in social withdrawal and isolation. Providing reassurance and explaining what events have occurred may alleviate anxiety and provide comfort to the child.
A: Having epilepsy does not mean your child cannot thrive academically after all Albert Einstein had epilepsy! However, we do know that some children with epilepsy may experience learning difficulties, including memory, concentration, and organisational skills which may impact on their cognition and overall academic progress. These difficulties could be caused by several factors depending on the individual child.
Should the child be experiencing frequent seizures such as absences in class, they may miss information and instructions required for completing tasks, impacting on their ability to complete tasks both in lessons and those set for homework. Children may also feel drowsy due to side effects of medication, or their sleep patterns may be affected, difficulties in concentration and memory can all contribute to stress and anxiety.
It is crucial that any learning difficulties are recognised early so the child can get the appropriate support at school. If not addressed lessons can be particularly challenging for the child, and they may be perceived as being less intelligent or not making an effort in class which can lead to low self-esteem, low confidence and eventually possible school avoidance and phobias. Research suggests the incidence of anxiety is particularly increased where children have coexisting difficulties with intelligence, cognition, and concentration thus affecting their ability to adapt and develop effective coping strategies. To learn more about how epilepsy can influence learning, behaviour, and cognition have a look at Strong Foundations, an online tool written for parents of school-aged children.
It is important that children feel safe and secure at school, teachers should have knowledge of what to do should a seizure occur and the overall impact of epilepsy on a child’s well-being. Epilepsy Action Australia can provide professional training for school staff in addition to multiple resources for educating the other students. Having an individualised Seizure Management Plan is essential for all children with epilepsy, knowing a plan is in place and having staff who are confident and competent in seizure first aid can help the child feel reassured they will be safe should a seizure occur. Dispelling myths and talking openly about epilepsy promotes a positive attitude and supportive environment.
A: Firstly we need to discover why your child feels they have no friends and the next step is making this experience easier for her. A chat with her class teacher may help to understand, and they may also be able to facilitate social interactions during group activities or working in pairs. Unfortunately, many children with medical conditions miss time off school, and this is true of epilepsy. Hospital appointments, tests, seizures, feeling unwell or management of triggers can all contribute to time off. This not only means they are at a disadvantage academically, needing to catch up on missed work but classmates may have found someone else to sit with or hang out with at lunchtime.
Sometimes the child requires practical strategies such as phrases to use and ways to invite themselves along so they can fit in and feel included. Other children benefit from increasing social opportunities such as out of school sports or clubs and inviting friends over to play.
Q: Are there different types of anxiety and which are more common in children with epilepsy?
A: Yes, there are multiple types of anxiety, both social anxiety disorder (also known as social phobia) and generalised anxiety disorder (GAD) are frequently diagnosed in children with epilepsy. Other types of anxiety include specific phobias, panic disorder, separation anxiety, post-traumatic stress disorder, selective mutism, obsessive-compulsive disorder (OCD) and agoraphobia. Treatment approaches may be different depending on the child’s diagnosis which is why it is important to seek professional support.
Q: Why is it important to address anxiety, can I wait and see if things settle naturally?
A: If anxiety is not recognised and treated promptly, this could place the child at an emotion, a physical and social disadvantage.
The long-term effects include:
– Low energy and activity levels
– Less motivation
– Poorer adherence and prognosis
– Low immunity
– Muscle tension/soreness
Receiving treatment for anxiety and developing coping strategies can avoid anxiety impacting on physical health and provide the child tools to deal with future challenges
Q: My child is too anxious to sleep in their own bed in case they have a seizure during the night?
A: This situation is both common and understandable; similarly parents are often afraid for the child to sleep alone too. Often the parent and child feel more secure if they sleep in the same bed following a seizure or diagnosis of epilepsy. This is perfectly fine for a short period, don’t rush but take small steps to settle the child back in their own room. For some children, their seizures only occur during the day, for others only at night. Often the child will feel safer after a period of being seizure free so give medications time to reach therapeutic levels before making the transition back to their own room.
Assure the child you will check on them and allow time to for them get used to their own bedroom again. Sometimes having a new bed cover or cuddly toy helps other times just knowing their parents are listening out and will check on them. For those children who have medication-resistant seizures a type of safety monitor may be beneficial. There are many kinds of alarms and seizure detectors on the market so talk to your doctor or epilepsy nurse about which product would be most suitable.
A: I would recommend seeking help if the symptoms occur regularly if the behaviours are impacting on day-to-day living and are preventing the child from doing what they wish to.
Q: Where can I get help for my child and what is the treatment for anxiety?
A: I would advise taking the child to their General Practitioner (GP). GPs can carry out assessments to determine the level of anxiety the child is experiencing and can recommend the most appropriate treatment. It is possible the GP may suggest short-term medication (yes, it is possible to take anti-anxiety and anti-epileptic medications at the same time) and may refer to a psychologist. If wishing to see a psychologist privately, a list of practitioners and their areas of expertise can be found on the Australian Psychological Society website. https://www.psychology.org.au/Find-a-Psychologist There are many approaches and types of treatment including identification of anxiety triggers, changing thought processes and behaviours, stress management and developing coping strategies.
Do talk to the child’s teacher as there may be situations or times of the day that can be identified as more challenging. Giving notice before changing activities or additional help to organise themselves at the start of a lesson could be of benefit. Some children may prefer to arrive early to school to avoid the rush, and pictorial timetables could help a child anxious about routine and coping with change. Having the conversation about disclosure and educating the class about epilepsy is important to gauge the correct timing for the child and amount of information shared.
Health professionals such as Paediatricians, Neurologists, and Epilepsy Nurses will have specialist knowledge about the relationship between epilepsy and anxiety and will understand the impact epilepsy can have on mental health. Many hospitals will have a multi-disciplinary team (including psychologists, social workers, occupational therapists) to support the child or will have strong links with supports within the community.
Most importantly parents can help by becoming informed, and this may be through talking to health professionals or other parents and seeking available information. Assisting the child to recognise activities and situations that are particularly challenging can assist in the identification of anxiety triggers, a diary may be beneficial for this. Many people can shy away from having conversations about mental health but sometimes talking frankly and addressing the elephant in the room can break the ice and open up communication. Remember maintaining optimum physical health is fundamental: regular exercise, fresh air, and a balanced diet are key to overall well-being. A child-centered team approach with the family, friends, school and health professionals working together is recommended for the best outcomes.
A: Epilepsy Action can provide information and resources via My Epilepsy Key or the website. Experienced nurses are available to support both the child and the family to meet individual needs and achieve optimum outcomes. Services can be delivered nationally to both urban and rural areas ensuring families have ongoing access to necessary support. Age-appropriate information is available to young people along with opportunities for peer support.
Q: Are there other organisations that could help?
A: Yes, many organisations are providing specialised services, support, and information including:
– Reach (support for young people by young people)
– Beyond Blue (including their Brave tool for children with anxiety)
– Headspace (mental health support for people aged 12-25 years)
– Livewire (a safe online space for children to meet peers with chronic health conditions)
– Mindspot (online assessment and treatment for anxiety and depression)
– Trapeze (providing support for those transitioning into adult services)
- Headspace (2013) Psychosocial Assessment for Young People http://headspace.org.au/assets/EOI/ATTACHMENT-D-headspace-Psychosocial-Assessment-Tool- 2013.pdf
- Jones, J, Blocher, J, Jackson, D, Sung, C, & Fujikawa, M (2014), ‘Social anxiety and self-concept in children with epilepsy: A pilot intervention study,’ Seizure, 23, 9, pp. 780-785, PsycINFO, EBSCOhost
- McEwan, M. J., Espie, C. A., Metcalfe, J., Brodie, M. J. & Wilson, M. T. (2004) Quality of Life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods. Seizure: the Journal of the British Epilepsy Association, 13 (1) 15 – 31
- Reilly, C, & Ballantine, R (2011), ‘Epilepsy in school‐aged children: More than just seizures?’, Support For Learning, 26, 4, pp. 144-151, PsycINFO, EBSCOhost
- Reilly, C, Kent, E, & Neville, B (2013), ‘Review: Psychopathology in childhood epilepsy’, Child And Adolescent Mental Health, 18, 2, pp. 65-75, PsycINFO, EBSCOhost
- Rodenburg, R, Wagner, J, Austin, J, Kerr, M, & Dunn, D (2011), ‘Psychosocial issues for children with epilepsy’, Epilepsy & Behavior, 22, 1, pp. 47-54, PsycINFO, EBSCOhost.