Epilepsy is notoriously difficult to diagnose and treat, even though it is as common in children as insulin dependent diabetes. Professor Helen Cross offers an illuminating guide to the effective treatment and management of this condition.
Epilepsy is a condition where individuals are prone to recurrent epileptic seizures. Epileptic seizures occur as a direct result of a change in the electrical activity of the brain. This leads to an involuntary change in movement, behaviour or awareness. Strictly speaking epilepsy is not a single condition, there are up to 40 different types and so more accurately they should therefore be called 'the epilepsies'.
Epilepsy can present at any age, and may have many different causes. Epilepsy is estimated to affect between 362,000 and 415,000 people in England with around 112,000 under 25s in the UK thought to have the condition. In addition, there will be further individuals, estimated at another 124,500 people, who have been diagnosed with epilepsy, but in whom the diagnosis is incorrect. This means in children it is as common as insulin dependent diabetes.
What causes epilepsy?
There are many different causes. Some result from an abnormality of the brain, such as a malformation, tumour or stroke and others are due to a change in the genetic makeup of the brain. Very few however are directly inherited and in up to 40% we are yet to find the cause. However when the type of epilepsy and its cause is determined, some indication can be given as to how long an individual may be at risk of the epilepsy, or indeed whether there is a chance of growing out of the condition. In some children, epilepsy will occur in the context of where there are already resultant physical or learning disabilities. In others it will arise out of the blue and subsequently can be associated with learning problems.
First steps after diagnosis
As epileptic seizures are most often unpredictable and can occur at any time it is therefore vital for families at the outset to be given advice on safety; namely to avoid anything that could be dangerous should the individual have an epileptic seizure. This could include not climbing, not swimming without 1:1 supervision and not riding a bike in a busy street, although issues may be different according to the age and the ability of the individual. Another example would be for children to sleep in a low bed if prone to seizures during sleep.
How is epilepsy treated?
The first line of treatment is medication; two thirds of individuals with epilepsy will be controlled on medication. However the medication does not treat the underlying cause, it only suppresses the tendency to have seizures.Choosing the right medication can also be a challenge. There are many different anti-epileptic medications. The choice will be based on the individual person, and the type of epilepsy. Different medications will have different effects dependent on the type of epilepsy and some may also be contraindicated in certain types of epilepsy. It is therefore important for the specialist to also carefully consider the appropriate medication for the individual. Even then there may be a need to try more than one medication before the right one is found.
What happens if the treatment doesn't work?
For those who continue with seizures despite medication other options may be considered. The ketogenic diet is a high fat diet designed to mimic the effects on the body of starvation. It was determined considerable time ago that starvation improved seizures in children with epilepsy. It was thought this was due to the ketones generated by the body; by providing most of the calories as fat a similar effect can be achieved, and it has been shown to be as effective as any newer anti-epileptic agent in children who have failed at least two anti-epileptic medications. It is quite a restrictive diet, low in protein and carbohydrate, but has been made more palatable over time with increasing numbers of recipes (see http://www.matthewsfriends.org/). It's effect in adults remains unclear although more relaxed forms of the diet such as the modified Atkins diet may be effective.
How does epilepsy affect an individual and their families?
Epilepsy affects individuals and their families in different ways. The seizures themselves may manifest in different ways and in differing frequencies. They may involve simply staring and loss of awareness, a change in behaviour, loss of muscle tone or stiffening with jerking. In children who have had no previous problems where medication has controlled seizures, they may lead their lives without interruption. It is sensible to be regular with sleep, and take the medication on a regular basis. Individuals with epilepsy have a wide range of abilities. Some with existing learning problems may develop epilepsy, in others learning and behaviour difficulties develop at a later stage. The relative role of the underlying cause and the epilepsy remains unclear in many. It is natural for those working with these children to blame the medication for the problems experienced, but often the seizures and underlying cause of the epilepsy are equally to blame.
Where can parents seek help about paediatric epilepsy?
As already stated, any parent with a concern about epilepsy should go to their GP in the first instance. Epilepsy is a complex condition and there are many misconceptions about it (i.e. that people with epilepsy cannot go to nightclubs, watch television or play sports). Epilepsy is unique to each individual so it is important parents seek help from trained medical professionals and not from individuals offering untested alternative treatments.
For further support visit www.youngepilepsy.org.uk