Epilepsy - Indigo Dyslexia Centre

Epilepsy

Epilepsy is not an illness or a disease. It is a tendency of the brain to produce a spasm, seizure or fit if something triggers it. Seizures or fits happen when the neurones in the brain suffer a temporary malfunction. For someone to have epilepsy, they must have experienced repeated seizures or fits over a period of time: a single episode does not warrant the term epilepsy. It affects one in two hundred children, of whom 30% continue to have seizures with learning and emotional difficulties. Anyone can develop it regardless of age, race or sex, but onset is usually before the age of 20 or after 65.

Causes: Sometimes there is no apparent reason for a seizure. In other cases -

Epilepsy may start in childhood or adolescence and be due to that brain’s own idiosyncrasies rather than from brain damage due to a disease or injury.

It may be acquired, as the result of some form of brain damage or as the result of another medical condition. Examples - a difficult birth, a head injury, severe head infection, a stroke or a brain tumour.

Photosensitive Epilepsy is relatively rare and only affects about 3% of people with the condition. Photosensitive epilepsy responds well to medication.

Diagnosis: There may be no external indications that someone has epilepsy and a doctor can only begin to make a diagnosis (1) if more than one seizure has occurred, (2) by questioning the patient and (3) using, if at all possible, the observations of any witnesses to the seizures. Diagnosis may also require other tests, such as blood tests, brain scans and EEGs.

Treatment: Epilepsy can be controlled, sometimes completely, with appropriate drug treatment.

Self-help: People with epilepsy can reduce risks to keep their seizures to a minimum, by

making sure they get enough sleep

drinking alcohol moderately

avoiding emotional upsets

avoiding trigger stimuli such as strobe lights

taking all medication strictly as directed

Seizures: There are two types of seizures: generalised or partial.

Generalised seizures: the whole of the brain is involved and consciousness is lost. Seizures may be major convulsions with limb jerking and unconsciousness, the body going stiff or floppy together with unconsciousness, or limb jerking and momentary lapses of consciousness. Breathing may be noisy and irregular, and some people may suffer incontinence.

Partial seizures: here the disturbance in brain activity starts in or involves one part of the brain. Seizures are very individual but the seizure type will depend on which area of the brain is involved. There are three types of partial seizure; Simple, complex and secondary generalised.

In simple partial seizures consciousness is not impaired. The seizure may be confined to either rhythmical twitching of one limb, unusual tastes or sensations such as pins and needles in parts of the body.

In complex partial seizures consciousness is affected and the person may have no memory of the seizure. The seizures may involve a change in awareness as well as automatic movements such as fiddling with clothes or objects, mumbling, chewing, or wandering about and general confusion.

Secondary generalised seizures occur when a simple or complex partial seizure develops to encompass the whole brain. The result is a convulsive seizure, loss of consciousness and confusion afterwards.

Children and Epilepsy: In the main, epilepsy should not cause problems either for the child or for his classmates and teacher. As with many problems, good communication between home and school is essential. Parents should not be worried to tell the school about their child’s epilepsy and teachers should be willing to listen and learn about the child’s particular form of the condition. Detailed knowledge about the frequency and type of seizures, any triggers, etc, are necessary so that – without unduly mollycoddling – as normal a life at school as possible can be achieved.

What to do during a seizure: Seizures may look worrying, but the thing to remember is that the person having the seizure is not aware of what is happening, and is not in pain. Most seizures do not require medical intervention. At the start of an attack, it is not uncommon for breathing to stop temporarily and the person turn blue until breathing restarts. This is normal. Once started, you should not try to stop an attack, and remember –

Reduce embarrassment to everyone: limit the number of people standing around; once any convulsions have ended and if the person has been incontinent, deal with it quietly, privately and matter-of-factly; be as reassuring and normal as possible afterwards

Do not try to stop the convulsive movements

Do not attempt to put anything in the person’s mouth: they will not swallow their tongue

If possible, make them comfortable by putting something soft under their head

Do not try to move them, however, unless they are in a dangerous place, such as a road

Once any convulsions have stopped, put the person into the recovery position

Check breathing and airways. If breathing is irregular or absent, check the mouth for obstacles

Make a note of the type and length of the seizure – the person or their family may wish to know.

Attacks which do not involve convulsions and loss of consciousness can vary tremendously: be prepared. You may need to stay with the person as a calm and sympathetic presence; if they wander around you may need to help them keep clear of obvious dangers such as stairs. Confusion often follows such a seizure and may be present for some time. Allow them to recover in their own time without undue interference: they may react in an apparently unfriendly way if constantly spoken to. When to call for medical help:

If the person has hurt themselves during the seizure

They cannot breath following an attack

A seizure is followed quickly by one or more further seizures

The seizure lasts for more than five minutes and the usual length of this person’s seizures is unknown

The seizure lasts for longer than you know is usual.

Sudden Unexpected Death in Epilepsy (SUDEP)
Cases of death apparently resulting from epilepsy rather than other factors are being researched. These are usually referred to as Sudden Unexpected Death in Epilepsy, or SUDEP. It is thought that there are around 500 cases a year in the UK when someone with epilepsy dies unexpectedly and for no apparent reason. Those most at risk seem to be 20-40 year olds. Please contact Epilepsy Bereaved
Tel: 01235 772850
Web: www.sudep.org

Other Useful Contacts:

Epilepsy Action (formerly The British Epilepsy Association)
Tel: 0113 210 8800
New Anstey House, Gate Way Drive, Yeadon, Leeds LS19 7XY.
Free helpline: 0808 800 5050
Everything you need to know about epilepsy for sufferers incl teenagers, parents, carers.
Web: www.epilepsy.org.uk
Email: helpline@epilepsy.org.uk

Epilepsy Scotland 48 Govan Road, Glasgow G51 1JL.
Tel: 0141 427 4911
Again, useful material plus local support group information.
Free helpline: 0808 800 2200
Web: www.epilepsyscotland.org.uk
Email: enquiries@epilepsyscotland.org.uk

NCYPE
The National Centre for Young People with Epilepsy
Tel: 01342 832243
St Piers Lane, Lingfield, Surrey RH7 6PW
Website: www.ncype.org.uk
Run a National Assessment Centre, on-site Resource Centre, St Piers School up to 16 and a FE College.

The National Society for Epilepsy
Tel: 01494 601300
Chesham Lane, Chalfont St Peter, Bucks SL9 0RJ
Helpline: 01494 601400
Information, support, respite care, rehabilitation and long term residential care. They produce an award winning info pack for people covering all aspects of epilepsy and learning difficulties.
Web:www.epilepsynse.org.uk/
Also www.epilepsyawareness.co.uk
provide tailor-made training courses for a variety of authorities and organisations.
Tel Sally Gomersall on 01636 682888
email: sally.gomersall@epilepsyawereness.co.uk

Reading: see also OAASIS information sheet ‘Books – where to find them’

Contact the above for their lists of books, and also the following publishers: -
David Fulton Publishers
Tel: 0208 996 3610
Website:www.fultonpublishers.co.uk
Email: mail@fultonpublishers.co.uk

Order via Bookplace Ltd,
Tel: 08000 921 554
Email: customerservice@bookplace-ltd.co.uk

Jessica Kingsley Publishers
Website: www.jkp.com
Email: post@jkp.com
Tel: 0207 833 2307.

Sage Publications
Web: www.sagepub.co.uk
(includes Paul Chapman Publishing and Luck Duck books) for all professionals working in schools and educational settings.

and don’t forget www.amazon.co.uk who have an extensive list of other books on epilepsy.

Cambian Education Services run seven residential special schools and colleges for young people with autistic spectrum disorders, Asperger Syndrome/HFA, severe learning difficulties. OAASIS can give you advice on the schools and send you their prospectuses.

OAASIS produces 8 chargeable publications entitled ‘First Guide to…’; wallet sized cards explaining 9 learning disabilities and a wide range of free Information Sheets. Please contact OAASIS for the full list, or view them on the website at www.oaasis.co.uk. All the information sheets are checked annually, please ensure you have the current version.

Acknowledgements: Thanks to Sally Gomersall, Epilepsy Awareness Training Consultant, Tel/Fax 01636 682888. Also to the Contact a Family, The National Society for Epilepsy and the Epilepsy Action handouts used when researching and writing this Information Sheet.

© OAASIS (Office for Advice Assistance Support and Information on Special needs) This article can be freely reproduced with due attribution of authorship.