Most people with epilepsy can live normal lives with careful management of their condition and by understanding the risks that are raised by having epilepsy.
When your child is diagnosed with epilepsy, topics like safety and risks should be discussed to help you make informed choices to keep your child safe as much as possible.
Different children will require different precautions at different times.
Not all of the following will apply to all children, but it is important information to know so you can take positive action to reduce risks.
Risks with children
Seizures
Seizures vary from person to person but most seizures affect awareness which can lead to falls or injuries. Some seizures pose more risks that others. These include:
- Generalised tonic clonic seizures
- Seizures that happen during sleep
- Seizures that last longer than normal, or occur in clusters
- Seizures that are difficult to control with treatment
Seizure emergencies – prolonged or cluster seizures
If your child is thought to be at risk of prolonged convulsive seizures, or clusters of seizures, their doctor may prescribe emergency medication and they will need a seizure management plan as these seizure types are considered a medical emergency and can be life threatening. This will inform those who take care of your child (e.g. other family members and close friends, their school or childcare) about what to do in case of a seizure.
Seizures during sleep
If your child has seizures at night or during sleep, consider using a monitor to alert you (e.g. seizure alarm device or audio monitor such as a baby monitor). Your child’s doctor may discuss this and advise on available options or you can also see some options here. This list is not exhaustive.
If your child is sleeping away from home, make sure the adults present know what to do if a seizure happens. See our first aid videos and posters here.
SUDEP
Approximately 1 in 1000 children with epilepsy will die from Sudden Unexpected Death in Epilepsy (SUDEP). This means 999 children with epilepsy will not.
However, epilepsy risks are something you should be aware of and knowing the risks can be the first step into taking action to reduce them.
Epilepsy Action Australia, or your child’s doctor should discuss and provide further information about SUDEP and individual levels of risk, which can vary from person to person.
Preventing injuries
It is important to know of potential seizure related risks so you and your child can take action to reduce them. This is a summary. For more suggestions see our Safety Factsheet
Falls
- When possible, avoid having hard flooring
- Keep stairs and walkways clear from obstructions
- Consider covering sharp edges on furniture with edge/corner guards
- Consider using safety glass or double glazing for doors and windows, or safety film to go over existing glass
- Ensure wide opening windows or balconies have suitable locks to prevent falls during a seizure
- Consider a low bed and place something on the floor next to the bed to cushion a fall
Burns
- Use a guard for open fires and have a thermostat or temperature control for heaters. Central heating or air-conditioners are safer.
- Have your water temperature controlled to a safe temperature.
- When cooking, place saucepan handles away from the cooker edge in case they are knocked
- Supervise your child during barbeques and campfires, especially if they wander or fall during seizures
Water Safety
It is important to take care around water to avoid risk of injury or drowning.
Swimming
- Swimming should always be supervised by adults, or with young children, always accompany them in the water.
- Floatation devices are recommended for children with active seizures.
- If you have any garden ponds at home, keep it covered with a grill or secure the area with fencing. It is best to still supervise your child around ponds.
Bathing
- Young children should always be supervised in the bath.
- When they are old enough to bathe alone, using a shower instead and leave the bathroom door unlocked in case a seizure occurs.
- Consider fitting an outward opening bathroom door in case they have a seizure behind the door.
Sport and recreation
Seizures during exercise are uncommon but occasionally strenuous exercise or activity may increase the chances of a seizure. Take note of your child’s seizure triggers and seek advice from your child’s doctor.
Most sports activities are okay as long as the person with epilepsy avoids anything that may increase their individual seizure risk such as overexertion, over-heating, dehydration, and low blood sugar.
- Check that your child is supervised during activities by an adult who knows about
their epilepsy and what to do if your child has a seizure - Be careful around heights. Avoid free-style climbing unless using proper climbing safety equipment
- Wear the right protection during contact sports or physical activity, such as a protective helmet
- Make sure your child stays well hydrated and has eaten something prior to activities
- DON’T let them continue the activity if child feels faint, lightheaded or nauseous
Make sure those around your child know what to do to help them during and after a seizure. Having a seizure management plan can help with this.
Travel
A few tips to help when going on holidays:
- Take extra medication incase your travel is unexpectedly delayed
- Keep some in carry on luggage in case your luggage is lost or delayed
- If there is a significant time difference at the destination, make gradual adjustments to the timing of taking the medication to be in sync with your destination
- Try to keep to a routine as much as possible and not disrupt sleep patterns too much
- Keep medication in original packaging and if possible, get documentation from your child’s treating doctor to confirm diagnosis and medication.
- Check your insurance covers emergency medical treatment for your child’s epilepsy
- For more about Travel
Mental health and wellbeing
Living with epilepsy can be difficult. Seizures and epilepsy can affect mental health. Common issues include anxiety, depression, low self-esteem or a lack of confidence.
Children and young people show emotional distress in different ways from adults, so it is important to be aware of changes in your child’s mental health and emotions. Speak to their doctor if you notice any changes or have concerns, particularly if the changes are sudden, increasing, extreme, or continue for more than 2-3 weeks.
Working with your child’s healthcare team
The best way to reduce epilepsy risks is to help your child to have as few seizures as possible, and encourage them to build healthy habits in managing their condition. Help them with this by:
- Help them to take their medication as prescribed
- Keeping regular doctors appointments
- Keep a record of seizures to identify patterns and changes
- Report any changes to the doctor
- Identify and avoid seizure triggers when possible
- Ask the doctor about other epilepsy treatments if seizures are resistant to medication
