What is Epilepsy? Epilepsy is a tendency to have recurrent seizures, sometimes called fits, convulsions. Having one seizure does not usually mean that a child has epilepsy. A seizure occurs when the electrical signals which travel along and between the nerve cells in the brain are sent out of order. Because these nerve cells control everything the body does, a seizure can take a number of different forms. It is a common condition affecting 1:242 School Age Children (Epilepsy Action 2005) and is more common in children with learning disability, approximately 22% of people with learning disability have epilepsy.
Important Points Epilepsy is the most common sever neurological disorder in the world. it is a medical & social diagnosis affecting every aspect of a persons life. People can die as a result of a seizure. Some people still have a primitive view of epilepsy. As recently as 1978 two priests in Switzerland were asked to perform an exorcism on a 22 year old woman with epilepsy whose family thought she was possessed by the devil. Most people only have a vague idea of what it means to have epilepsy even though it is one of the three most common chronic conditions, the others being asthma & diabetes. In some cases there remains a stigma attached to the diagnosis of epilepsy. Most people when they hear “Epilepsy” think of tonic clonic seizures previously known as “grand mal seizures” and also associate epilepsy with people who have learning disability these are both untrue. There are approximately 40 different types of seizures some of which will be discussed later on. Epilepsy can develop at any age, however it is most often diagnosed before the age of 20 and after the age of 60.Each persons seizures will be very individual/specific to the person which is why it is important to have individual action plans for each child with epilepsy. Statistics from Epilepsy Action 2005
Epilepsy can be inherited, but in most people there is no family history of epilepsy. In the majority of people, inheritance only plays a limited role and this is especially true of partial seizures. It is thought that contributions made by the father and the mother in relation to the inheritance of epilepsy are of equal importance. Genetic testing is helpful in identifying specific gene defects and thus ensuring appropriate diagnosis, treatment regimes, prognosis and genetic counselling. Some genetic epilepsies include epilepsy with febrile seizure plus, JME, Dravet Syndrome and Ohtahara syndrome.
Following a seizure the person may attend their G.P or Accident Emergency Department.. If there is suspicion of epilepsy, the National Institute for clinical excellence( NICE) guidelines state the person should be referred to a specialist. This specialist is likely to be a Consultant Neurologist, or a Consultant Paediatrician who has a specialist interest in epilepsy. There are 3 key questions that they will be looking to answer. Was the event an epileptic seizure? If so, what type of seizure occurred?. Does your child have an epilepsy syndrome. Eyewitness account to include information on what was happening prior to event, during and after the event. Refer to Young Epilepsy seizure description form.
Treatment The usual way of treating epilepsy is with medication. The aim of the treatment is to control the epilepsy and reduce or prevent seizures occurring. Approximately 70% of people taking anti – epileptic drugs (AED) can expect to heave their seizures greatly reduced. If a person is seizure free for two years the doctor will discuss the option of coming off medication which is then done gradually. Medication The choice of medication will depend on the individual’s type of seizure and the type of epilepsy they experience. Medication must be taken regularly, it is usually prescribed twice a day and therefore not normally required in school hours, it should never be stopped abruptly as this could trigger a seizure. Medication may cause drowsiness, memory problems and difficulty concentrating. It is important to balance effect with side effect. With the correct medication and dosage many people are able to remain seizure free. Ketogenic Diet- high fat low carbohydrate diet, needs supervised by specialist dietician and neurologist. VNS- it is a small device like a pacemaker) surgically implanted into the right upper chest area. It stimulates the vagus nerve and provides an anti epileptic effect.
Potential Triggers Triggers are stimuli which may cause a seizure at a particular time. These are different for everyone, triggers include flickering or flashing lights although this affects only 5% of people with epilepsy. It is important for individuals to recognise their own triggers and try to avoid these or make changes to their lifestyle to help minimise these risks e.g. taking medication before going out if late home and try to catch up on sleep the following day.
First Aid Partial/Focal Seizures In this type of seizure consciousness or behaviour is altered, do not try to stop the seizure Do Guide the child from danger Stay with the child until fully recovered Talk quietly to reassure the child Repeat anything they have missed Record time & length of attack – observe for any other seizures Remain with child until recovery is complete DO NOT Restrain the child – ensure the child can’t injure themselves, remove any harmful objects Act in a way that could frighten the child such as making abrupt movements or shouting at them Assume the child is aware of what is happening or what has happened Give the child anything to eat or drink until fully recovered – their consciousness is altered so the may have difficulty swallowing, you must ensure the child is fully recovered before they are offered anything to eat or drink Attempt to bring the child around – the seizure will stop in its own time
First Aid Seizures Involving Loss of Consciousness In this type of seizure consciousness is lostDo Keep Calm Protect the child from injury – remove harmful objects from nearby Cushion head Place in the recovery position as soon as possible Record length of seizure Remain with child until recovery is complete Reassure child following seizure DO NOT Put anything in the child’s mouth Move unless in danger, only move the child if they are in danger, their head should be supported if they are in a chair and they should be placed in the recovery position as soon as possible following the seizure. Restrain the child Give anything to eat or drink until fully recovered Attempt to bring the child around
This slide demonstrates the recovery position
Status epilepticus is when any seizure lasts for or at least 30 minutes or repeated seizures lasting for a total of 30mins or longer, from which the person does not regain consciousness between each seizure. It is a medical emergency and in rare cases can be life threatening. To prevent this from happening it is important to follow the persons emergency management plan and administer emergency medication or call an ambulance if the seizure or cluster lasts longer than 5 minutes.
Medication side effects ranging from rashes, increase/ decrease in appetite, mood changes, blood problems, memory and concentration problems, depression. Depends on medications used, how many epilepsy medications used and the age and personality of the person with epilepsy. SUDEP- this is a situation where a person has epilepsy and may have a seizure resulting in an associated Cardio- Respiratory arrest leading to a sudden death. Although it is rare, (1 in 400 people with epilepsy) it is being increasingly recognised as a risk in Epilepsy and it is risk related to inadequate control of tonic clonic seizures. High risk patients are those with complex health needs, those who take nocturnal seizures, are on multiple medications, live alone and don’t have a balanced lifestyle. Ways to minimise/ reduce this risk -Ensure the correct diagnosis and type of epilepsy. Ensure correct type and dose of medication is given for epilepsy. Individual should be under the care of a specialist if seizures are not controlled and should attend clinic appointments regularly. Try to get as best seizure control as possible. Ensure someone is available to keep an eye on the person who has epilepsy. Healthy lifestyle advisable- adequate sleep, moderate alcohol intake and avoid any recreational drugs. Refer to sudep.org website
Maintain good links with your Epilepsy Nurse or doctor to discuss any concerns with epilepsy and medication. Do not stop medication abruptly at any time without medical advice. Can drown in bath. Medical Alert bracelet has information about your condition, and who to contact and what to do. People do not have to be told about your epilepsy but if seizures are not well controlled it is safer if other people know what to do and helps to prevent unnecessary admissions to hospital or people putting spoons into your mouth! Assess each sport individually. Some activities generally not advised are boxing and mountain climbing.
Role of Staff As previously stated it is important to have as much information about the seizures and their effect on the person including side effects of medication. If staff notice any unusual behaviour or have concerns they should liaise with the individual parent/carer as medication may need to be reviewed, new triggers may have been identified which require avoidance. School staff often are first to notice and report to parents/ carers any changes.
Information from Parent/Carer As every child will have different seizure patterns it is important that school staff have as much information about each child’s individual seizure pattern. Each child with epilepsy will have an epilepsy care plan which details The type of seizure Warning signs – some children will get an “aura” or warning, this could be feelings of fear or an unusual taste or smell What happens Before a seizure During a seizure After a seizure Duration of the seizure, most seizures last approximately 2 minutes again this will be individual for each child, when observing a seizure two minutes is a very long time!!! Behaviour following a seizure Emergency response for the child Details of emergency medication if required Contact numbers for parents/carers – these numbers should be people who are within easy access of the school and not Granny who lives in Coleraine!
Western Trust Epilepsy Awareness Presentation 2013
Demonstrate an awareness of what Epilepsy
is and recognise different seizure types.
Understand appropriate First Aid
Understand the risks associated with
Epilepsy and the impact on a person’s
quality of life
Demonstrate an understanding of the role of
staff caring for a person with epilepsy.
What is Epilepsy?
Epilepsy is a common, chronic neurological disorder
characterised by unprovoked seizures.
A seizure is caused by a sudden burst of excess electrical
activity in the brain, causing a temporary disruption to the
way the normal brain works.
The disruption results in the brain’s messages becoming
halted or mixed up.
What you experience during a seizure will depend on where
in your brain the epileptic activity begins and how rapidly it
There are many different types of seizures (approx.40
different types) and unique to the individual.
It affects approx.112,000 young people under 25 in the
UK. 1: 250 children and 1: 100 adults.
It can affect anyone at any time.
It is not contagious.
There is no connection between epilepsy and
Not all types of epilepsy are life long. Approx.75% of
children either outgrow their epilepsy or have their
epilepsy well controlled on medication
What causes Epilepsy
In 6 out of 10 cases there is no identifiable cause.
Those epilepsies with a known cause are called
‘symptomatic’. There are two main categories: those
caused by brain injury or disease e.g. Infections,
brain tumours, trauma, malformations or
degenerations, metabolic disorders.
Hereditary factors: Epilepsy can be inherited, but in
most people there is no family history of epilepsy.
Genetic testing can help identify specific Gene
defects, which may be useful for treatment,
prognosis and genetic counselling.
There is no single test that will tell the consultant
whether a person has epilepsy or not.
A diagnosis is based on the medical history and eye
witness account of the event.
Various other tests such as an EEG, MRI, blood
and genetic testing, may help to identify the type of
epilepsy and possible cause.
The medicines used are called Antiepileptic drugs
Epilepsy is usually controlled, but not cured by
Up to 70% of people can become seizure free if they are
on the most appropriate medication for them.
Taken on a regular basis
Usually twice daily
Common side effects include tiredness, dizziness and
Other treatments options are ketogenic diet, VNS (Vagal
Nerve Stimulator) or surgery.
Missed or late medication
Lack of sleep/tiredness
Classification of seizures
Seizures can be divided into two main groups:
Focal (Partial) Seizures
Focal (partial) seizures
Affects just one part of the brain
The person can be fully aware but may experience a
strange sensation e.g.. Funny feeling in their tummy,
strange taste, smell or fear. The person may also
experience twitching of a finger/ face or have
Consciousness may be altered and the person looks
confused. May make strange movements e.g. Lip
smacking, chewing, rubbing, plucking at their clothes
Discharges can spread to the rest of the brain
resulting in a generalised tonic-clonic seizure.
Involving Altered Consciousness or Behaviour
Guide the person from
Stay with the person until
Talk quietly to reassure
Repeat anything they have
Record time & length of
Restrain the person
Act in a way that could
frighten the person such as
making abrupt movements
or shouting at them
Assume the person is
aware of what is happening
Attempt to bring the person
Give the person anything to
eat or drink until fully
In Generalised seizures the epileptic activity is in
both halves of your brain.
The main types of Generalised seizures are:
• Tonic Clonic
•Generally a childhood disorder
•The child may look blank and stare, lasting a few
•Child can appear to be day dreaming or dazed
•Eyelid fluttering/ blinking may occur
•May have minor facial movements or head drop
•Able to continue normal activity almost immediately
Myoclonic: - The person has shock like
contractions of different muscles. These are brief
but can happen in clusters and often occur shortly
Atonic (drop attack): - Sudden loss of muscle tone
and person falls to the ground. Lasts a few seconds
and able to continue normal activity immediately
Tonic:- The person’s muscles contract resulting in a
fall. These are all very brief and recover quickly but
the person may injure themselves as a result of
Most common and widely recognised of the generalised
seizures. Resulting in loss of consciousness.
•Muscles contract, body stiffens and person falls to the
•The person may become pale
•Their breathing may be irregular and lips may appear
•Saliva may dribble from their mouth and can be blood
stained if tongue has been bitten
•Incontinence may occur
•Consists of short sharp rhythmical jerks and gradually
•Muscles relax and the body becomes limp
•The person will slowly regain consciousness but may
be groggy and confused afterwards
•After the seizure the person can be very tired and have
memory loss. This can last from minutes to days.
Tonic Clonic Seizures
Keep Calm and reassure
Protect them from injury –
remove harmful objects
Cushion their head
Aid breathing by gently
placing the person in the
recovery position when the
seizure has stopped
Record time & duration of
Stay with the person until
Put anything in the
Move unless in danger
Restrain the person
Give anything to eat or
drink until fully
Attempt to bring the
Call an Ambulance if ……
The seizure continues for more than 5mins or
longer than is normal for the person.
One seizure follows another without the person
Person is injured during the seizure
You believe the person needs urgent medical
(Buccal Midazolam, Rectal Diazepam or Paraldehyde)
On rare occasions emergency medication is needed
to stop continuous or repeated seizures.
This is to help prevent status epilepticus which is
a medical emergency.
Emergency medication should only be given by
someone who is trained in this procedure and
where consent has been obtained.
If required, an Epilepsy Emergency Medication Plan
(EEMP) will be completed by the Consultant.
In addition to this, an individualised care plan will
also be completed by the identified named nurse.
In the absence of an up to date EEMP or
appropriately trained staff, an ambulance must be
Epilepsy and Risk Assessment
•Risk involves balancing the health and safety
of the individual with not wishing to restrict their
quality of life by being over protective.
•It should be a multi disciplinary process
•Often a complex task and specific to each
Risks with Epilepsy
Stigma and quality of life- over protected
versus informed choice and consent
Risks of injury and fractures, increased
admissions to hospital.
Medication side effects.
SUDEP- Sudden unexpected death in
Practical Safety Tips
Ensure family/ friends/ colleagues/ carers know
about your Epilepsy and first aid care.
Attend all Epilepsy appointments with Nurse or
Take prescribed medication as directed.
Shower rather than bath.
Inform people of your schedule/ routine.
Wear Medic Alert bracelet / necklace.
Most sporting activities are suitable with care
Role Of Staff
Obtain information about the person’s epilepsy
from individual, family/ carer.
Communicate with person and family about any
concerns i.e. seizure pattern, change in ability,
behaviour or mood.
Report & record any seizure activity observed as
per local policy. Communicate with appropriate
Ensure mandatory first aid training is up to date.
Ensure a risk assessment is carried out for the
individual if required.
Information Required About
Emergency contact details
Type of seizure/s
Any warning or tell tale signs of a pending seizure
Before a seizure
During a seizure
After a seizure
How long does the seizure last
How person is following a seizure and what First Aid
Details of emergency medication if required.
Living with Epilepsy
Many fears and myths about Epilepsy are due to a
lack of knowledge.
By finding out about the person’s epilepsy you will
have a better understanding of how you can help.
Children and adults should be encouraged to
actively participate in the same activities as their
peers, where possible promoting independence,
confidence and self esteem.