Diagnosing epilepsy in people with learning disabilities

Epilepsy is difficult to diagnose. This is because there is no one test that can say that someone has epilepsy. Diagnosing epilepsy in a person with learning disabilities can be even more difficult. This is for several reasons. For example, some people with learning disabilities have repeated behaviours, or movement disorders, which can be mistaken for seizures.

They might find it hard to let others know what has happened to them, or how they feel. An epilepsy specialist is the best person to decide which symptoms are epilepsy, and which are not. This is important to make sure the person gets the best treatment for their condition.

Epilepsy Action has more information about diagnosing epilepsy.

Visiting the doctor

This information is a guide to questions that may come up at an appointment with the epilepsy specialist. Sometimes, your family doctor or an epilepsy nurse will go through these, or similar questions, with you

• 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, behavioral or medical problems?
• What kind of epilepsy medicine have they been prescribed?
• Do you know the dose? Does the epilepsy medicine cause any problems?
• Have they had any different epilepsy medicines prescribed in the past? If they have, why were they changed?
• Have they had any medicine prescribed for any other condition?
• Have they had any tests, such as EEG, CT or MRI scans?

The answers to these questions can be used to make a diagnosis and write an individual care plan. This is sometimes known as a patient care plan. Lancashire Teaching Hospitals NHS Trust has kindly agreed to let us publish their patient care plan on our website. Copies of this are available from Epilepsy Action.

Epilepsy Action has more information about seizures, things that trigger seizures, epilepsy medicines and tests for epilepsy.

Keeping a record of seizures

It can be useful to keep a written record of when seizures happen. A record should include the dates and type of seizures. It might also record any other details, such as late nights, periods, or illness. All of these can be triggers of epileptic seizures for some people.

Seizure diaries are available from Epilepsy Action.