Epilepsy And Learning Difficulties:

Epilepsy occurs due to sudden bursts of electrical activity, causing temporary disruption to the way your brain would normally work. In some people this disruption will cause a seizure. The type of seizure that you have will depend upon which part of the brain is being disrupted, and how quickly and widely it spreads. There are many different types of seizure, however how epilepsy presents in a person will be as individualistic as they are. A person with learning difficulties will be more at risk of developing epilepsy than those that do not have a learning disability. There has been a recent report that suggested that a person who had a learning disability with epilepsy was more likely to also have autism.


Those with Fetal Anti-Convulsant Syndrome that have both epilepsy and a learning disability will have a number of health problems and possibly these will include some physical disabilities. These problems can include:  

  • Feeding or swallowing problems. These make it difficult to eat a good diet or take epilepsy medicines and other medicines.

  • Constipation and urine infections. These can cause more seizures.

  • Communications difficulties. These can make it difficult to talk about problems, or make needs known.


Epilepsy is very difficult to diagnose, especially if someone has Fetal Anti-Convulsant Syndrome, as their ability to express their experiences may be limited.  They may also have a repetitive movement disorder that can be mistaken for a seizure.


It is because of this that it is important that the parent/carer can answer certain questions:


  • 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?

  • How does Fetal Anti-Convulsant Syndrome present itself.

  • Have they had any medicine prescribed for any other condition?

  • Have they had any tests, such as EEG, CT or MRI scans?

  • Will they need re-assurance?

  • Can something be used to distract them?

  • Will they need aesthetic when an imaging scan is performed?


Answers to these questions can help to develop a diagnosis, and to create a care plan for that person. This will be developed using the ‘epilepsy pathway’


Management of Epilepsy:

  • Ensure that the family/caregivers are a part of the development of a care plan.

  • It is important that the complexities of FACS be taken into account.

  • Monitor for side effects including to the possibility of adverse cognitive and behavioural effects of AED therapy.

  • Be willing to explore all therapeutic options.


An eye witness account can be an important tool for diagnosis, it is important that this is as accurate as possible.   If possible you can recording it on a camera or your mobile phone.


A seizure diary is an important tool when understanding the way epilepsy presents in a person.   There are free phone aps that can be used on your mobile phone or you can contact: info@youngepilepsy.org.uk


Testing for Epilepsy:

It is really important to take into account the needs of the child. 


All children, young people and adults with epilepsy and learning disabilities should have a risk assessment including:

  • bathing and showering

  • preparing food

  • using electrical equipment

  • managing prolonged or serial seizures

  • the impact of epilepsy in social settings


  • the suitability of independent living, where the rights of the child, young person or adult are balanced with the role of the carer.


The most common way seizures are treated is with epilepsy medicines. If someone is still having seizures, they might be injured or even die early. Epilepsy medicines help to stop seizures happening, but they don’t cure epilepsy.


Emergency treatment for seizures that last a long time:

Most people have seizures that only last for a short time. These seizures usually stop by themselves, and don’t need emergency treatment.


Some people have seizures that last for longer than 30 minutes, or have one seizure that follows another without becoming conscious in between, for 30 minutes or more. This is called status epilepticus and it is a medical emergency.

If you think somebody is having an episode of status epilepticus, you should call for an ambulance.

© Copyright of Organisation of Anti-Convulsant Syndrome (O.A.C.S) 2/2014 Registered Charity no. 1116497