We told the other children in the nursery that Alex might not be well at times. He might fall on the floor and shake,' remembers nursery teacher Shelley Singh. 'Because of this, when we actually had emergencies the children dealt with them very calmly; in fact once a child came directly to an adult to tell us Alex wasn't very well. We made the situation safe and they just carried on around us.'
One in 130 people in the UK has some form of epilepsy (see box below); three-quarters of those people have their first seizure before the age of 20; and often it starts in early childhood. It stands to reason, then, that most people working in a nursery over a long period will probably deal with at least one child who has epilepsy.
Epilepsy is, in fact, recognised as a disability under the Disability Discrimination Act - it is one of the 'hidden disabilities' that may not be as apparent as, say, cerebral palsy but is subjected to comparable sorts of discrimination. It is also a condition that frightens many people; historically, it has been called the 'falling sickness' or even associated with possession. Partly for this reason, the old term 'fit' has been superseded by 'seizure' (and children are described as 'having epilepsy' rather than 'epileptic').
Quite a few small children have seizures of some sort occasionally (for instance, when their body temperature rises too far). Epileptic seizures are caused by a brief disruption of brain function, causing abnormal electrical activity in the neurones (nerve cells in the brain). The 40 or so different forms of the condition (see box) are linked to neurones in different areas of the brain. Boys tend to be slightly more prone to the condition than girls. Some children with epilepsy do also have other physical or learning disabilities, but most do not. Many take some form of medication, which is the main treatment available (a few people with very severe epilepsy do eventually undergo operations to the brain).
Stick to normality
The most important practical advice for anyone dealing with children with epilepsy is the same as with other disabilities; keep life as 'normal' as possible, and certainly don't exclude children from activities like swimming -but at the same time be as aware as you can. Keep a record or 'seizure chart', with details of all seizures and their outcomes. Make sure you have all the information - not just the basics - from the child's family: are there any warning signs the child, or anyone else, recognises in advance of a seizure, or do certain things 'trigger' a seizure? Do you need to administer any medication, either at regular times during the day or during seizures? Bear in mind, too, that emergency medication is often administered rectally, because that is the quickest way to get it into the bloodstream; this isn't very difficult to do but you need to know how to do it and you should get proper training.
Shelley Singh describes working with Alex, who had a range of types of seizure. 'We had a strict protocol, drawn up between the staff team, the school nurse and Alex's parents. We had to be clear how we dealt with the severe seizures: how long before we gave him rectal valium; how long before we rang emergency services; the different scenarios - outside, inside, out of school; and all the different staff roles. Initially it was quite difficult to draw up but then we all underwent training in how to give rectal valium and we were all familiar with each part of the protocol so that whatever you were doing, even if you were with the other children, you could just do it, without thinking.' With epilepsy this severe, she adds, they needed to be aware where the child was at all times.
Particularly with children this young, information is a two-way business - you need to let parents know anything you notice, such as more frequent seizures, or changes in a child's behaviour. This is even more important for children whose epilepsy is just developing - or when you suspect a child may have epilepsy. Obviously, nobody is expected to have a detailed knowledge of all 40 types and the associated syndromes, but a basic awareness of the condition can make a huge difference, especially if children have 'absences' rather than more major seizures.
Nursery teacher Georgina Farrant now works in a special school and only realised recently that a child she worked with in a mainstream nursery must have had epilepsy. 'She was very clever and very alert, but she would just "shut off" for a few seconds and then shout out "What?" very loudly, so she got into trouble for being a bit naughty and not paying attention. People didn't realise there might be a reason why she shut down, because they thought epilepsy was just about seizures. Now I work with a lot of children who have absences and I give them instructions in a different way because I know I have to check how much information they got the first time round.' There is no denying that epilepsy can be a serious disability. In practice, however, nursery teacher Shani Taylor found that what she needed was information rather than anything else when she had a child with epilepsy in her school. 'We needed to know about Murray's epilepsy, and we had to keep an eye on him. But,' she says cheerfully, 'it really wasn't a problem.' NW
All names have been changed to protect confidentiality.
National Society for Epilepsy helpline: 01494 601400
www.epilepsynse.org.uk
* British Epilepsy Association helpline: 0808 800 5050 www.epilepsy.org.uk
