The frequency of epilepsy occurring in people with a learning disability is higher than in the population as a whole. About 30% of people with a learning disability also have some form of epilepsy. However, the more severe the learning disability the more likely it is that the person will also have epilepsy. In people with a severe learning disability at least 50% also have epilepsy.
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Having a learning disability does not cause someone to have epilepsy and neither does having epilepsy cause a learning disability. Both epilepsy and learning disabilities are outward symptoms of underlying brain dysfunction or damage.
The underlying damage may have existed from birth. Some learning disabilities are associated with genetic conditions such as Down's syndrome. Head injuries from accidents, infections or tumours can also cause damage which may lead to learning disabilities.
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There are many types of epileptic seizure and some may involve strange behaviour. Seizures in people with learning disabilities may not be easy to recognise due to the level of brain damage that has occurred. Long periods of confusion, or unusual or repetitive behaviour may be signs of a seizure. Some people with a learning disability show unusual behaviour which might not be a seizure but another sign of brain damage.
Seizures may therefore go unrecognised or be difficult to tell apart from other behaviour associated with the learning disability itself. This may be more likely for people with poor communication skills.
When this behaviour occurs, it can be helpful to write down details about what happens. Tests such as an EEG (electroencephalogram) may help to decide whether or not this is a seizure.
Training in epilepsy awareness, including seizure types, is available from the National Society for Epilepsy (NSE).
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Treatment of seizures in people with a learning disability is carried out in the same way as for people without learning disabilities. However seizure control may be more difficult to achieve due to the level of damage to the brain. The seizures may also be more severe or more frequent.
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Blood testing on a regular basis is not usually necessary for most anti-epileptic drugs as the tests can only give a rough guide to the drug levels in the body. The exception to this is phenytoin.
Blood levels may be taken to check if the medication is being taken as prescribed. They can also be used to check that the person is not experiencing any side effects which they may not be able to describe. Saliva testing may be possible as an alternative to blood testing for some people.
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Some people may react to their anti-epileptic medication. A brain that has been damaged is more prone to possible side effects. Reactions can include feeling drowsy or sick, effects on vision or changes in behaviour. Sometimes side effects include poor attention, restlessness and slowed or unsteady movement. These may be difficult to tell apart from the signs of the underlying damage to the brain. If someone is not able to communicate what they are feeling, this may result in withdrawn or challenging behaviour.
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Cognitive functioning is described as the mental process of knowing, thinking and learning. Difficulties with this process in people with learning disabilities are usually due to the underlying brain damage that caused the epilepsy rather than the epilepsy itself. If the seizures are well controlled and the drug regime is kept simple, further cognitive difficulties are less likely. If seizures are poorly controlled or very frequent they may affect the person's overall quality of life. If seizure control increases these difficulties may also improve.
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Having a learning disability does not exclude a person from neurosurgery to improve their seizure control. However, surgery is not suitable for everyone who has epilepsy. It may be a possibility for some people whose seizures are not controlled with medication.
There are many factors that are taken into account when someone is considered for surgery and each case is looked at individually. Careful consideration is given to both the potential benefits and the possible adverse effects of surgery upon the individual.
This factsheet is based on one written by The National Society for Epilepsy in 2002. Read the full factsheet
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