1. Epilepsy Awareness Presentation
By Carmel McGinn, Adult Epilepsy Nurse Kerrie Kerrigan, Paediatric Epilepsy Nurse Maura Mackie, Paediatric Epilepsy Nurse Revised June 2016

2. Learning Outcomes
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.

4. 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 spreads.
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.

5. Epilepsy Facts
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 intelligence
Not all types of epilepsy are life long. Approx.75% of children either outgrow their epilepsy or have their epilepsy well controlled on medication
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

6. 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.
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.

7. Diagnosis
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.
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.

8. EEG Test

9. Treatment Usually twice daily
The medicines used are called Antiepileptic drugs (AED).
Epilepsy is usually controlled, but not cured by medication.
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 nausea.
Other treatments options are ketogenic diet, VNS (Vagal Nerve Stimulator) or surgery.
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.
Surgery may be an option for children with very focal epilepsy who have an identifiable area on their MRI and this correlates with their EEG. The process can be lengthy and involves a lot of investigations. Patients in N.Ireland are referred to Manchester Children’s hospital for surgery.

10. Vagal nerve stimulator

11. Potential Triggers Missed or late medication Lack of sleep/tiredness
Stress /Excitement
High Temperature
Menstruation/ puberty
Alcohol/drug
Flickering lights/photosensitivity
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.

12. Classification of seizures
Seizures can be divided into two main groups: Generalised Seizures or Focal (Partial) Seizures
ILAE

14. 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 numbness. OR 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.

15. First Aid Focal Seizures Involving Altered Consciousness or BehaviourDO
Keep Calm
Guide the person from danger
Stay with the person until fully recovered
Talk quietly to reassure them
Repeat anything they have missed
Record time & length of episode
DON’T
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 around
Give the person anything to eat or drink until fully recovered
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

16. Focal Seizure

17. Generalised Seizures
In Generalised seizures the epileptic activity is in both halves of your brain.
The main types of Generalised seizures are:
Tonic Clonic
Absence
Myoclonic
Tonic
Atonic

18. Generalised Seizures Absence seizures Generally a childhood disorder
The child may look blank and stare, lasting a few seconds
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 afterwards

19. Absence Seizure

20. Generalised Seizures
Myoclonic: - The person has shock like contractions of different muscles. These are brief but can happen in clusters and often occur shortly after wakening
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 afterwards
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 these.

21. Tonic-Clonic Seizures
Most common and widely recognised of the generalised seizures. Resulting in loss of consciousness.
Tonic Phase
Muscles contract, body stiffens and person falls to the ground
The person may become pale
Their breathing may be irregular and lips may appear blue
Saliva may dribble from their mouth and can be blood stained if tongue has been bitten
Incontinence may occur

22. Tonic-Clonic Seizures
Clonic Phase
Consists of short sharp rhythmical jerks and gradually slows down
Muscles relax and the body becomes limp
The person will slowly regain consciousness but may be groggy and confused afterwards
Post-ictal state
After the seizure the person can be very tired and have memory loss. This can last from minutes to days.

23. Tonic-Clonic Seizure

24. First Aid Tonic Clonic SeizuresDO
Keep Calm and reassure the person
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 seizure
Stay with the person until fully recovered
DON’T
Put anything in the person’s mouth
Move unless in danger
Restrain the person
Give anything to eat or drink until fully recovered
Attempt to bring the person around
First Aid Seizures Involving Loss of Consciousness
In this type of seizure consciousness is lost Do
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

25. Recovery Position
This slide demonstrates the recovery position

27. 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 regaining consciousness
Person is injured during the seizure
You believe the person needs urgent medical assistance

28. Emergency Medication (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 called.
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.

29. Emergency medication
In most children Buccal midazolam is the drug of choice for emergency use in the community. Only staff or person’s who have received training regarding the individual’s epilepsy plan, should administer this.

30. 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 individual.

31. 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 Epilepsy.
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

32. SUDEP
1 in every thousand people with epilepsy will die suddenly with no obvious cause.
Risk is low but will vary from person to person. Not associated with all seizure types.
Cause: don’t really know. Possible link with seizures and heart rhythm abnormalities.

33. Who is at risk? Tonic clonic /convulsive seizures. Nocturnal seizures.
Young adults.
Having seizures when no one is around to help.
Medication compliance
Lifestyle issues: alcohol, other recreational drugs, poor sleep pattern.
SUDEP rarely happens in children under 16. .

34. Practical Safety Tips
Ensure family/ friends/ colleagues/ carers know about your Epilepsy and first aid care.
Attend all Epilepsy appointments with Nurse or Doctor.
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
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.

35. 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 staff/ carers.
Ensure a risk assessment is carried out for the individual if required.
Ensure you have attended epilepsy awareness/ rescue medication refresher training within the last 2 years (JEC 2012)
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.

36. Information Required About Person’s Epilepsy
Emergency contact details
Type of seizure/s
Any warning or tell tale signs of a pending seizure
What happens
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 is appropriate.
Details of emergency medication if required.
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!

37. 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.

38. USEFUL CONTACTS
JEC Joint epilepsy Council of the U.K and Ireland 2012 Aguideline on training standards for the administration of buccal midazolam.

39. Thank you for listening
Any questions?