Living with epilepsy

Most children with epilepsy attend mainstream schools. Many children with epilepsy have no other major condition and the seizures are well controlled.

Some children with epilepsy have other major conditions (such as learning difficulties) and may require special schooling. Depression is more common in adolescence when the young person may become very frustrated, have low self esteem and have fears of losing control.

Direct supervision may be required to manage safety issues indoors/outdoors.

Children with poorly controlled seizures should not engage in activities that are potentially harmful. They should not be allowed to take unsupervised baths (because of the risk of drowning). Supervised swimming, bike riding (helmeted) and playing video games are considered by most neurologists to be safe activities.

Aids / adaptations

Non-slip rugs and high balcony railings are two simple adaptations. A bed alarm can detect convulsive seizures occurring during sleep, some models also monitor the heart rate and breathing patterns. A pressure mat alerts when a person lands on the mat e.g. falling out of bed or wandering in a seizure. Special breathable pillows are available to minimise the risk of suffocation. In the bathroom, a walk-in shower with a non-slip floor or mat and a shower seat may minimise the risk of injury.

These types of measures indicate that the family is taking additional steps when the child’s seizure control is poor and hence at increased risk.

Nocturnal (night-time) seizures

Some seizures occur at night and for some children, seizures occur only at night.

Once a child is in bed, they are not at risk of falling and injuring themselves. The danger of choking or being suffocated by a pillow is extremely small and special pillows are available on the market to reduce this possibility to a minimum. Alternatively, the individual may choose not to use a pillow.

Parents may choose to use a mattress alarm that detects when a child has a convulsive seizure and triggers the alarm. Note - these aids may be used by parents / carers to create a safer environment for their child and so are not reliable indicators of overall severity of functional restriction. There are also other adaptations which could be made to the room such as the use of a low bed.

With some types of epilepsy, confused or automatic behaviour may lead to the danger of wandering or other behaviour, which may lead to harm. In these circumstances, it would be sensible for appropriate precautions to be taken, such as having another person in the house and minimizing hazards.

It should be sufficient that someone is present in the house with the child, as there would not usually be a need for another person to remain awake observing the child in case they had a fit.