Diagnosing epilepsy in people with learning disabilities

• The difficulties of diagnosing epilepsy
• Referral to a specialist
• Keeping a seizure diary
• NICE and SIGN Guidelines

The difficulties of diagnosing epilepsy in people with learning disabilities

Epilepsy can be difficult to diagnose. This is because there is no one test that will say for certain that someone has epilepsy.

Diagnosing epilepsy in a person with learning disabilities can be even more difficult. This is for several reasons. Some people with learning disabilities have repetitive behaviours, or movement disorders that can be mistaken for partial seizures.  In addition, they might find it hard to communicate what has happened to them, or how they feel. Also, people may feel that certain behaviours are caused by seizures. 

An epilepsy specialist is the best person to decide which symptoms are related to epilepsy, and which are not. This is important to make sure the person gets the best treatment for their condition.

• More information about diagnosing epilepsy

Referral to a specialist

A person with a learning disability, who may also have epilepsy, should be referred by their family doctor to an epilepsy specialist for an assessment. This may be at a general epilepsy clinic or at a specialist epilepsy clinic for people with learning disabilities. These are some of the questions that might come up.

• When did the seizures start?
• When do the seizures happen?
• How often do they happen?
• Are there any possible cause(s)?
• What do the seizures look like?
• Are there any particular seizure triggers?
• Is there a known cause for the person’s learning disabilities?
• Does the person have any physical, behavioural or medical problems?
• What kind of anti-epileptic drugs (AEDs) have been prescribed? Do you know the dosage? Do these cause any problems? 
• Have any different AEDs been prescribed in the past? If so, why were they changed? 
• Have any drugs been prescribed for any other condition?
• Have any tests, such as EEG, CT or MRI scans been done?

This information will be used in an individual treatment plan. It will help a carer to give the help or care that is needed.

Keeping a seizure diary

It can be helpful for doctors to make a diagnosis if you keep a written record of when a person’s seizures happen. This should include the dates and what kind of seizures they were. It may be useful to record any other details, such as having a late night, a period, or being unwell. All of these are known triggers of epileptic seizures for some people.

Seizure diaries are available from Epilepsy Action.

NICE and SIGN Guidelines

The National Institute for Health and Clinical Excellence (NICE) is an organisation which provides guidance on treatments and care for people using the NHS in England, Wales and Northern Ireland. In Scotland the Scottish Intercollegiate Guidelines Network (SIGN) performs a similar role.

The NICE Guidelines (2004) and SIGN Guidelines (2003) on the treatment of epilepsy, state that people with learning disabilities should have the same access to treatment for their epilepsy as anybody else. They may also have additional treatment needs, which should be met by appropriate health professionals.

The NICE and SIGN Guidelines recommend that people with epilepsy should have their epilepsy and treatment reviewed every year.