The truth behind Ellen's little absences

Childhood epilepsy is such a rare condition that it often goes unnoticed. Luckily for Lisa Doyle's daughter, her teacher was quick to spot the symptoms
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The Independent Online
Nobody noticed anything wrong with my daughter until she went to school. OK, she was inclined to daydream, couldn't seem to follow instructions and asked the same questions repeatedly, but it all seemed perfectly normal to us.

Her teacher thought differently. Within a few months of her starting school, she said she was worried about Ellen's co-ordination. The following term, she noticed the daydreaming. I eventually mentioned it to my GP and Ellen was referred for an electroencephalogram (EEG).

Utterly confident there could be nothing seriously amiss, I sat in the EEG suite chatting amicably with the technician, as the test went on. About half way through, I realised from her face that the impossible was true - my child was suffering uncontrolled epileptic fits.

These fits were all but undetectable to anyone who wasn't looking for them, but they were terrifyingly frequent. In the first five minutes of the EEG, Ellen had seven seizures, each one around six seconds long.

This type of seizure is called an absence and it is literally that - the child is not there for a few seconds. They can't see or hear anything while it lasts, but take up where they left off when it is over. Some wet their pants, but most don't - it is as though the lights are on, but there's nobody home.

A child suffering an absence will usually stop what she's doing, stare, look a bit pale and possibly flutter her eyelids or drop her head slightly forwards. My daughter turns her head away, so nobody can see, then shouts "What? What?" in case she's missed anything. Once you know what to look for, it doesn't look at all like normal daydreaming, but unfortunately neither teachers nor parents are taught to look for it.

Yet it's not all that rare. According to Dr Frank Besag, medical director of St Piers Lingfield, a residential school for children with epilepsy, around 7,000 schoolchildren in Britain suffer absence seizures. They may have a few seizures a day or literally thousands - with no visible symptoms to draw attention to their needs. The consequences for their education are potentially devastating.

"There haven't been any careful studies of this, but I think children with this condition almost all underperform at school," says Dr Besag. "Absences interfere with social interaction, particularly in a group, and children often withdraw from the rest of the class. And repeated seizures continually disrupt their train of thought, which makes them seem disoriented."

Ellen was one of the lucky ones. Her teacher had taught a child with epilepsy once before, so she had some experience of absence seizures. But in a large class, with a teacher who knows almost nothing about it, absences may easily go unnoticed. The child at the back of the class who doesn't seem to take much in may be dismissed as simply not very bright - and his inability to do as he's told attributed to wilfulness rather than epilepsy.

Even though at least 80 per cent of children with all forms of epilepsy are in mainstream schools, there is no special training for teachers in dealing with them. Yet teachers' input is crucial in dealing sensitively with all kinds of seizures, helping to diagnose absences and, once treatment begins, reporting back on drug reactions.

There are also a few adjustments in teaching methods - none of which are routinely taught to teachers - that can help a child to avoid school failure. So whether a child receives the right kind of educational help is entirely down to chance.

This lottery might have continued indefinitely if it were not for the David Lewis organisation in Alderley Edge, Cheshire, which specialises in epilepsy. It launched its Epilepsy in Education initiative on Monday, with a two-year programme to train teachers about all forms of epilepsy in a fifth of the nation's schools.

According to David Settle, deputy chief executive of the organisation, first on the list is the question of attitude. "Children with epilepsy are of normal intelligence," he says. "Our expectations should be high and we should expose them to the same demands as other children."

He is critical of the impact of some current teaching methods on children with epilepsy. He says: "Resource-based or active learning may not help these children nearly as well as old-fashioned didactic teaching with regular recaps of information."

Ellen is eight now and her life is much easier than it was a year ago. She has found a medication that suits her and has pretty well caught up at school. But without the help of the school in the first place, Ellen would be sitting in a daydream at the back of the class. If the Epilepsy in Education initiative succeeds in persuading schools to take absence epilepsy more seriously, Ellen's 7,000 contemporaries may have the same chances that she is getting.

For advice and teacher information packs, contact the National Society for Epilepsy, Chalfont St Peter, Gerrards Cross, Bucks SL9 ORJ (01494 873991).

For information about Epilepsy in Education and teacher information packs, contact the David Lewis Organisation, Alderley Edge, Cheshire SK9 7UD (01565 872613).

For general information, ring the British Epilepsy Association helpline (Freefone 0800 309030).