Childhood epilepsy

A Guide for Parents

Monitoring seizures How should schools be Q&A: Medication at night supporting your child? Frequently Information Make sure your child is asked questions to keep your fully included at school child safe while surrounding sleeping medication and Inside vaccinations youngepilepsy.org.uk This is an interactive pdf In the top right hand corner of each page you will find these interactive elements

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2 A GUIDE youngepilepsy.org.uk FOR PARENTS

Foreword

Epilepsy is the most common neurological condition worldwide. It is complex and having a diagnosis does not always provide immediate answers.

Epileptic seizures can be truly terrifying This is an interactive pdf to see. Families often feel alone and experience high levels of anxiety. The unpredictable nature of the condition often leaves families feeling a lack of control. As a family, learning to understand your child’s epilepsy can be a daunting and difficult journey.

This handbook is one of a great many tools that Young Epilepsy has developed using research and consultation, with real families, to give you support in making informed decisions. The aim is to help you, one step at a time, as you navigate some of the new places and situations in which you will find yourself.

This guide has been created to help you understand how epilepsy presents, how to keep your child safe and tell you about available treatments. We also hope it will provide you with information on living with a child with epilepsy and managing their condition, at school and at home.

We hope you will find it useful as you begin your journey.

Professor Helen Cross OBE, The Prince of Wales’s Chair of Childhood Epilepsy

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Contents

Introduction...... 5 Living with epilepsy...... 28 Taking care of yourself...... 28 What is epilepsy?...... 6 A good night’s sleep...... 28 Is it epilepsy?...... 6 Sleep development...... 29 What causes epilepsy?...... 6 Monitoring seizures at night...... 30 What is a seizure?...... 7 Sleepovers...... 32 Different types of seizure...... 7 Explaining epilepsy to your child...... 32 Generalised seizures...... 8 Balancing risk and safety...... 33 Focal seizures...... 9 Travelling and holidays...... 34 Seizure triggers...... 10 Learning and behaviour...... 35 Photosensitive epilepsy...... 11 What causes learning and behavioural problems in ...... Epilepsy syndromes...... 12 children with epilepsy? 36 How seizure-related factors impact learning Childhood Absence Epilepsy...... 12 and behaviour...... 36 Juvenile Myoclonic Epilepsy...... 12 Epilepsy and Autism...... 38 Benign Rolandic Epilepsy...... 12 Epilepsy and ADHD...... 39 Panayiotopoulos Syndrome...... 12 Emotional disorders...... 39 Managing challenging behaviour...... 40 Diagnosing epilepsy...... 13 Dealing with psychosocial and emotional issues...... 41 EEG (electroencephalogram)...... 13 Brain scans...... 14 How should schools be supporting your child?... 43 Blood tests...... 14 Individual Healthcare Plans (IHPs)...... 43 Supporting learning and behavioural needs...... 43 ...... Managing seizures 15 Training school staff...... 44 Keeping records...... 17 Inclusion...... 44 Sudden Unexplained Death in Epilepsy (SUDEP)...... 17 Record keeping...... 44

Treatments for epilepsy...... 18 Epilepsy, adolescence and beyond...... 46 Medication...... 18 Becoming independent...... 46 How do AEDs work?...... 18 Issues affecting young women...... 47 Side effects of medication...... 19 AEDs, contraception and pregnancy ...... 47 Taking medication...... 19 Q&A: Epilepsy and adolescence...... 48 Other treatments for epilepsy...... 20 Higher education...... 50 Q&A about medication...... 22 Getting a job...... 51 Working with professionals...... 24 Benefits and support...... 52 Who’s who?...... 24 Useful resources...... 53

4 With thanks to...... 54 5

More information and support...... 54

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Introduction

This guide has been designed to give parents the basic information they need when caring for a child with epilepsy.

Caring for a child who is experiencing seizures can be distressing. The biggest challenge you will face is the fear of the unknown, so having some knowledge and information about epilepsy will help you to feel more confident. In the beginning it is likely you will not know much about the condition, or how it will affect your child and their future. Remember that living with epilepsy does not mean your child cannot enjoy a full and rewarding life.

This guide has been written by experts from Young Epilepsy, Great Ormond Street Hospital and University College London Great Ormond Street Institute of Child Health. It would also not have been possible without the help of a great many parents who have told us what they would have liked to have known, when their child was first diagnosed.

If you have any specific questions or if you feel you would like to speak to someone, contact our helpline by phone, text or email:

01342 831342

sms 07860 023789 e [email protected]

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What is epilepsy?

Epilepsy is a neurological condition that disrupts the normal electrical activity our brains use to communicate with the rest of the body.

This disruption causes seizures. What causes epilepsy? Epilepsy is the medical term used It is perfectly normal to want to understand why your child has epilepsy when someone has a tendency and what may have caused it. Your doctor may be able to advise you to have recurrent seizures. on this. However, in around 60% of cases a specific cause is not found. A one-off seizure does not necessarily mean the person will Cases with an identifiable cause predominantly fall under two develop epilepsy. categories: those that are caused by brain injury or brain disease (structural or metabolic causes) and those in which genetics are a factor. Epilepsy affects approximately 112,000 young people, aged 25 Brain injury or diseases that Genetic factors that may and under, in the UK alone. may cause epilepsy: cause epilepsy: The first thing to know is that around three quarters of children • birth trauma – which can result • genetic abnormalities that will either outgrow their epilepsy in low oxygen levels (hypoxia) cause epilepsy and subsequent damage to or have it well controlled by • epilepsy syndromes with a brain tissue antiepileptic medication. It is not genetic basis (such as Benign necessarily a barrier to success. • abnormal development of the Rolandic Epilepsy or Juvenile brain during pregnancy Myoclonic Epilepsy) Is it epilepsy? • premature birth – which can Epilepsy can be difficult to cause haemorrhages (bleeds) in diagnose. Doctors are reliant the brain tissue on eyewitness accounts of TOP TIPS • damage to the brain as a result possible seizures to help them Most genetic causes arise of head injury decide whether or not a child from a gene mutation in an has epilepsy. Children can have • infections of the brain individual. Very few epilepsies unexpected events affecting (encephalitis) or brain linings are inherited and there is often movement, breathing or alertness (meningitis) no family history of epilepsy. for reasons other than epilepsy so other possible causes need to • brain tumours be considered. • metabolic (biochemical) disorders such as low blood Any investigations carried out are glucose, abnormal calcium 6 used to support a diagnosis or metabolism or the effects of 7 classify the seizures. For more drugs (particularly alcohol) information go to Diagnosing • autoimmune disorders, where epilepsy on page 13. specific antibodies affect the brain

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What is a seizure?

A seizure is a sudden episode of electrical activity in the brain that can cause involuntary muscle movements or changes in sensation, behaviour or consciousness.

Seizures will usually only last for Different types of seizure a brief period of time. As they There is a common misconception that epilepsy only involves can occur out of the blue, and someone falling to the floor and shaking. It is much more varied than if your child is not responding in this as there are over 40 different types of seizure and everyone’s their usual way, it can be very epilepsy is unique to them. distressing. Identifying which type of seizure your child has experienced is really Seizures can take many forms important as it will help the medical team to decide on the best because the brain is responsible course of treatment. for such a wide range of the body’s functions. What a seizure Young Epilepsy’s free app includes an easy-to-use seizure video looks like will depend on where function, symptom log and diary which can help you to keep track of in the brain the burst of electrical any suspected seizures. activity occurs. Seizures may cause your child’s limbs to twitch Use our app or their muscles to become very stiff or floppy. They may lose consciousness and fall to the floor and shake, they may Seizures fall into two main groups: experience strange sensations, Generalised seizures Focal seizures such as an odd smell or taste, or they may stop what they are doing and stare. There really are a lot of ways a seizure can manifest itself.

Most seizures usually last from a few seconds to a few minutes and stop without any treatment. Some may go on for longer and medication will be needed to stop Both sides of the brain are Only part of the brain is them. For more information see affected from the start and affected. The symptoms and 7 Managing seizures on page 15. the child will be unconscious, level of awareness depend on even if only briefly. the area of the brain involved.

Find out more on our website

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Generalised seizures occur during the seizure. This seizures usually occur shortly after is probably the type of seizure Generalised seizures occur when waking (sometimes known as a most people think of when they both sides (hemispheres) of the ‘messy breakfast’) or before going hear about epilepsy. Like all brain are affected by abnormal to bed when the child is tired. generalised seizures, they are electrical activity and the child During myoclonic seizures there caused by electrical discharges becomes unconscious. is a loss of consciousness but, as firing simultaneously throughout these seizures tend to last less than the brain. This type of seizure Tonic seizures a second, it is hardly noticeable. has two phases, the tonic phase Sometimes myoclonic seizures occur Tonic means an increase in tone followed by the clonic phase. in clusters. or tightness. In these seizures the muscles rapidly constrict, Tonic phase: The child becomes Absence seizures (typical) causing the child’s limbs and rigid as their muscles contract. Absence seizures used to be body to become rigid. They They may let out a cry as air may lose balance and fall to the referred to as ‘petit mal’ seizures. is pushed out of their lungs They often begin in childhood and do ground, usually backwards, with but they are not in any pain. consequent risk of injury. Tonic not usually continue into adulthood. Consciousness is lost and They may occur many times a day seizures are generally short they will usually fall to the floor (less than a minute) and the child and provoke a brief ‘trance-like’ if standing, often backwards. state. The child will stare blankly into recovers rapidly. They often occur Breathing may become laboured at night. space and be unresponsive usually or stop momentarily. As their for 5 to 10 seconds. Recovery is breathing pattern changes they Atonic seizures immediate and the child continues may lose colour and the skin what they were doing so the seizure Atonic is the opposite of tonic. around the mouth may appear may go unnoticed. Their failure to During an atonic seizure there blue, as there is less oxygen than respond, when they are spoken to, will be a loss of all muscle tone, usual in the lungs. often results in the child being told which causes the child to suddenly off in school for not paying attention flop forward and fall. These are Clonic phase: The muscles then or for daydreaming. The child is sometimes referred to as ‘drop relax and tighten rhythmically, unaware of their seizure afterwards. attacks’ and can appear quite causing the body and limbs to jerk This seizure type is associated dramatic as the child falls heavily or convulse. As the seizure comes with characteristic changes in EEG to the ground. Although the to an end, the rhythmical jerking (electroencephalogram) recordings. seizure is very brief (less than stops and the muscles relax. The 15 seconds) and the child can child will regain consciousness Absence seizures (atypical) often continue with activities quite but is often confused and it can These atypical seizures do not quickly, following the seizure, there take some time for them to return start or finish as abruptly as typical is a significant risk of facial or head to normal. They may also have absence seizures. The seizures injuries. Protective headwear may been incontinent or bitten their usually last longer and may have be recommended to prevent injury tongue. Often the child will be additional features such as changes if these seizures occur frequently. exhausted and need to sleep. in muscle tone. These changes may result in small movements, Tonic-clonic seizures Myoclonic seizures such as a slight nodding of the 8 Traditionally, these seizures were ‘Myo’ means muscle and ‘clonic’ head or a chewing action and the 9 referred to as ‘grand mal’ which means jerk. When myoclonic child may continue to respond means ‘great illness’. Now, seizures occur, the muscles to their surroundings. These however, the name tonic-clonic contract rapidly rather as if the atypical absence seizures are often goes some way to describe the child has had a very brief shock- associated with other seizure types actual physical symptoms that like contraction. Myoclonic and/or learning disabilities. 8 A GUIDE youngepilepsy.org.uk FOR PARENTS

Focal seizures Focal seizures are the result of intense electrical activity occurring in an area on one side of the brain, namely the ‘focus’ of the seizure. These seizures are described according to their manifestations, particularly whether they cause changes in movement (motor symptoms) or sensation (sensory symptoms) for the child. What the seizure looks like depends on where in the brain it comes from and what function that area is responsible for. There may be some impairment of consciousness with these seizures although sometimes the child may be fully aware throughout. Focal seizures can spread to affect the whole brain, resulting in a generalised seizure known as a ‘bilateral convulsive seizure’.

Temporal lobe epilepsy a feeling of déjà vu, butterflies Frontal lobe epilepsy This is the most common type in the stomach, nausea, The frontal lobes are a large area of of epilepsy that causes focal odd smells or tastes. These the brain responsible for emotional seizures and it can start in sensations may occur alone behaviour, personality, planning, children of any age. The temporal or may be a precursor (aura) problem solving and some high lobes are primarily responsible to further seizure activity that level cognitive functions, as well as for smell and auditory perception, impairs consciousness. the control of movement. Seizures language and memory. Seizure that arise from this part of the brain activity focussed in this area of These complex seizures may will vary in nature depending on the brain means the child may cause unusual movements, which particular part of the frontal experience a sudden strange such as lip smacking or finger lobe is involved. They will often mix of feelings, emotions or fumbling. They may also develop occur in clusters that start and thoughts they might find difficult into tonic-clonic seizures and end abruptly. They may produce to describe. These may include tend to be followed by confusion. weakness in certain muscles, including those used in speech, or cause sudden movements in the limbs, such as the flinging out of an arm. Seizures usually occur during sleep and can present in very strange and dramatic ways including head turning, grimacing, thrashing around or cycling movements of the legs.

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Occipital lobe epilepsy This lobe, in the posterior part of the brain, is responsible for processing visual information and recognising shapes and colours. Occipital lobe seizures are less common than other focal seizures. They usually present with vision-related symptoms such as rapid eye blinking, seeing patterns, flashing lights or colours. Seizures can spread to the temporal or frontal lobes. When this happens the characteristics of the seizure change, often making it hard to recognise as occipital lobe epilepsy.

Parietal lobe epilepsy The parietal lobes are responsible for interpreting sensory information, spatial orientation as well as artistic Seizure triggers and musical appreciation. Febrile seizures Sometimes, when a child has Seizures arising from this part Febrile seizures (also known epilepsy, certain situations may of the brain usually result in as febrile convulsions) may make a seizure more likely to occur. strange sensations and are occur in children between These are called triggers and vary often referred to as sensory the ages of 6 months and from child to child. seizures. These may present 6 years. These seizures as tingling or warmness often Commonly reported triggers can happen when a child occuring down one side of include: has a high temperature. the body. There may be areas • overtiredness A diagnosis of epilepsy is of numbness or an unusual • illness or fever not usually made in these feeling of a difference in the • stress and anxiety children as they are often size of the limbs. • overexcitement isolated events with a known • ingestion of alcohol or taking cause. However, some recreational drugs children may have additional TOP TIPS • changes in medication or risk factors that make it missed doses likely they will develop other Focal seizures can spread • menstruation types of seizure. These risk to affect the whole brain, factors include abnormal resulting in a generalised • flashing or flickering lights 10 development prior to the 11 seizure known as a ‘Bilateral If you are aware of your child’s first febrile seizure or a family Convulsive Seizure’. seizure triggers, it can make it history of non-febrile seizures. easier to predict when seizures are more likely to occur.

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Photosensitive If your child has ƒƒ Do not allow your child to play epilepsy been diagnosed with a game on-screen when they photosensitive epilepsy, the are tired. Tiredness can increase Only about 5% of children with following precautions would the chance of your child having epilepsy are sensitive to flashing be advisable. a seizure. or flickering lights, geometric shapes or patterns. A flicker ƒƒ If playing a video game, sit ƒƒ Encourage your child to take rate of between 5 and 30 times your child in a well-lit room, regular breaks and rest between a second is the frequency most at least 3 metres from a TV on-screen games. You could likely to cause problems. screen or 1 metre from a suggest a 10 minute break computer screen. following 45 minutes of play. Other triggers, commonly ƒƒ If possible, your child should ƒƒ Consider buying a liquid crystal encountered in these children, use a remote control to display (LCD) or 100 Hertz include sunlight reflecting on change TV channels. If they television (the number of times water or the effect caused as approach the TV, encourage a flash or flicker occurs a the child passes by light shining them to cover one eye with second is measured in Hertz). through a row of trees or railings. the palm of their hand. These are less likely to trigger photosensitive seizures than plasma screens which often have high contrast levels. TOP TIPS If your child has photosensitive epilepsy and you think a flashing light Non Epileptic or bold pattern will trigger a seizure, cover one of their eyes and turn Attack Disorders them away from the stimulus to reduce the neuronal stimulation. (NEADs) NEADs differ from epilepsy as they do not occur as a result of disruption to electrical activity in the brain. NEADs can look the same (or similar) to epileptic seizures but it is important to remember the cause is different. They can be linked to anxiety, stress or stressful situations and may be mistaken for fainting or panic attacks which can include hyper- ventilation. NEADs are taken very seriously by medical professionals and can be 11 treated successfully.

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Epilepsy syndromes

A syndrome is a group of symptoms and signs that occur together and indicate a specific disease or condition.

An epilepsy syndrome is The diagnosis is usually made with speech. These can develop diagnosed by the combination by a combination of clinical into tonic-clonic seizures. Usually, of several features, such as history, triggering of seizures by children are otherwise well with age of onset of seizures, types hyperventilation and EEG testing. no significant learning impairment. of seizures, EEG (brain wave Diagnosis is based on description pattern) changes in between or of the seizures and sometimes during seizures along with other Juvenile Myoclonic accompanying EEG changes. tests such as MRI brain scan or Epilepsy (JME) Some children do not need genetic investigations. medication, especially if they have This syndrome starts most infrequent seizures at night, but commonly between the ages of With the rapid advances in for others medication can help to 12 and 18 years. It is associated genetics more syndromes are control their symptoms. with myoclonic jerking movements being recognised. Here are a few of the limbs. Many children have of the more common syndromes tonic-clonic or absence seizures and you can find further Panayiotopoulos as well. Seizures are often information on others, seen in triggered by tiredness, stress or Syndrome children, on our website. alcohol and up to 40% of children This usually starts between are photosensitive. There may be 3 to 5 years of age, though Find out more on our website a genetic link with JME occurring sometimes a little older. Seizures in other family members. There are occur very infrequently and are usually changes seen on an EEG characterised by nausea and Childhood Absence and medication is usually effective. vomiting, sweating, dilated pupils Epilepsy This form of epilepsy often and drooling. It is often associated with turning of the head, or eyes, This syndrome affects up to continues to adulthood though to one side and sometimes clonic 12% of children with epilepsy. usually becomes less severe. movements of the limbs. The Absence seizures, with loss child may become unresponsive of awareness lasting several and these seizures tend to be seconds, tend to recur Benign Rolandic prolonged, often lasting 20 to 30 throughout the day. The seizures, Epilepsy minutes or more. This syndrome though frequent, tend to be brief This form of epilepsy tends to is diagnosed by the typical seizure and respond well to medication. start between the ages of pattern and EEG which shows This type of seizure tends to 3 and 10 years. It has a good spikes, mainly in the occipital start between the ages of 4 and outcome with most children area of the brain. Children are 9 years and 90% will grow out of becoming seizure-free by the otherwise well and development 12 their seizures by adolescence. age of 15. Typically, children 13 is normal. As seizures are so Development tends to be have two or three focal seizures infrequent, nearly always stopping normal in these children though affecting the mouth and face, within 2 to 3 years, medication is concentration at school may be usually at night or soon after often not necessary. affected. Sometimes they may waking, which often results in develop other seizure types. dribbling, gurgling or difficulties 12 A GUIDE youngepilepsy.org.uk FOR PARENTS

Diagnosing epilepsy

Although there is no single diagnostic test for epilepsy, a number of investigations are used.

The results of these tests, EEG It is a painless investigation but together with eyewitness (electroencephalogram) can take time. The EEG is most accounts of seizures or film useful when it is used alongside recordings, will be considered An EEG is a useful tool in the video recordings so your doctor when making a diagnosis. The diagnosis of epilepsy. A number of can observe what is going on investigations also aim to look for small electrodes, attached by wires in the brain and, at the same an identifiable cause and to help to the EEG computer, are placed time, witness how your child is determine the best treatment. on the surface of your child’s head behaving. with a sticky paste or glue. They Your doctor will want to know may be kept on for a short time Results of the EEG may show details of the whole episode, (up to an hour) or for a much longer where in the brain the electrical including what happened before, period (several days). activity starts and if particular during and after the seizure. Whilst the EEG is taking place, the patterns of activity are occurring. They will need to ask you lots of computer records the electrical This can help to identify an questions when you meet them. activity occurring in the brain. It can epilepsy syndrome as well as If you can film any episodes (on give the doctor detailed information assist the doctor in deciding on your phone) this can be very about any seizures that take place. the most appropriate treatment. helpful, but always ensure your child’s care needs are met before worrying about capturing an event on film. Make a note of how long seizures last. It will also be helpful if you can keep a description of exactly what happens to your child during a seizure or suspected seizure.

TOP TIPS When going for an ambulatory EEG, remember to dress in clothes that are easy to 13 remove, e.g. with buttons or zips, so they do not cause problems going over the head.

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Routine EEG Ambulatory EEG Video telemetry The recording lasts for around The electrodes are placed on the Your child has to stay in a 30 minutes to an hour and is head and connected to a small special room during this done whilst your child is awake. mobile unit carried in a bag around procedure whilst the EEG is They may be asked to open the waist. The child may go home recorded simultaneously with and close their eyes, watch for several hours or sometimes a video. It usually involves an a strobe light (to look for days. They can carry on as normal overnight stay in a hospital or photosensitivity) or to breathe and the EEG records activity specialist centre. heavily (hyperventilate) to see throughout the day and night. Data how the brain responds. is downloaded back at the hospital.

Brain scans Scans are only carried out when Blood tests the benefits of doing so outweigh Brain scans are used to give a In some children, blood tests the risks. They are relatively safe detailed picture of the brain’s may be performed to exclude and painless, although your child structure. This can be helpful other diagnoses, or in an attempt may require sedation as they need in identifying any areas of the to find the underlying cause of to be very still in order to obtain a brain that have not developed the epilepsy. If these tests are clear image. perfectly, or any area of damage required then all blood samples to brain tissue. MRI (Magnetic Sometimes an injection is given can usually be taken in one go. Resonance Imaging) scanning, as part of the procedure. A dye which uses magnetic fields, is injected into the bloodstream is the technique of choice which highlights the blood TOP TIPS for investigating epilepsy. vessels in the brain. If the child presents with a To remove any leftover glue after sudden illness or seizures, CT The scans identify whether there an EEG, use plenty of conditioner (Computerised Tomography) is any structural abnormality in the when you wash your child’s hair scanning may be used as this brain, for example as the result and gently tease it out. can be done more quickly and of a lack of oxygen or a bleed. 14 15 is readily available. CT scans Understanding the potential cause of use low-dose radiation X-rays. seizures will help with the diagnosis of epilepsy and guide decisions about the best course of treatment.

14 A GUIDE youngepilepsy.org.uk FOR PARENTS Managing seizures

Watching your child having a seizure can be very frightening even if it only lasts for a few seconds.

Most individual seizures stop without the need for It is important to seek urgent emergency treatment, but it is important that a few medical attention by calling 999 simple steps are followed to keep someone safe. for an ambulance if your child: • has never had a seizure before

1 Stay calm and make sure your child is in • is not breathing or is blue around a safe place with space to move freely. the lips Ensure there is nothing in the way that • has a seizure lasting for more may hinder their breathing. It is also than 5 minutes important to record how long the seizure • is not responding to you after the lasts, so try to remember to start timing. seizure has stopped • has sustained an injury during a seizure

2 Let the seizure run its course … don’t restrict Seizures that last for longer than their movements or put anything in their mouth. 5 minutes need treating with an emergency or rescue medication. This is because the longer a seizure goes on the harder it is to stop. When a seizure lasts for more than 30 minutes 3 Once the seizure ends, put your child it becomes a condition known as onto their side to recover. Gently tilt status epilepticus. This is a medical their head back as this will help to emergency as the body systems are keep their airway clear. under such prolonged stress.

If your child’s doctor feels your child is at risk of prolonged seizures, you 4 will be prescribed an emergency Make a note of what happened leading up medication you can administer to, during and after the seizure ended. at home. Paramedics will be able to monitor your child and further medication can be given, if needed, 15 at the hospital.

Find out more about emergency medications and watch a short film on our website

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TOP TIPS

Keeping accurate records of possible seizures:

As soon as you can, take some time to sit down and write a description of exactly what happened. Head movements

Make a note of... Eye movements

Medication given Changes in breathing

How long the movements or behaviours last

Movements of the arms and legs Changes in skin colour

How long it takes Changes in for your child to fully recover how your child responds to you

It is also helpful to note what your Don’t forget to keep 16 child was doing before the episode a diary with the exact 17 started and where it happened. times and dates.

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Keeping records Sudden Unexplained Although rare and unpredictable, certain risk factors increase the It is important to monitor any Death in Epilepsy risk of SUDEP. Young adults unusual behaviour in your child (SUDEP) living alone, who have poorly as it could be seizure-related. Thankfully this condition is controlled tonic-clonic seizures Recording abnormal, or strange, uncommon, affecting 1 in 1000 during sleep, can be at greater movements and behaviour can people with epilepsy. It only risk. Abrupt or frequent medication help to build a clearer picture of occurs rarely in children. changes, the need for more than your child’s epilepsy, resulting in one antiepileptic drug or sudden treatment that is better targeted to SUDEP is said to have occurred withdrawal of medication can also their seizures. when someone, with epilepsy, increase the risk. dies suddenly and unexpectedly The free Young Epilepsy app for an unknown reason with, or Remember SUDEP is rare but is a tool which can be used to without, evidence of having had a action can be taken to reduce the help keep accurate records of seizure. It usually occurs at night risks. It is important to encourage your child’s epilepsy. It includes when there are no witnesses. your child to take their medication an easy-to-use seizure video There are known to be changes regularly, reliably and to avoid function, symptom log, diary in heart rate and breathing during adjusting the dose without and medical prompts as well as tonic-clonic seizures but there is consulting a doctor. Identifying discreetly stored emergency and no obvious explanation for death seizure triggers (e.g. overtiredness contact details. in SUDEP. or alcohol) and avoiding them can help. If your child is away from Use our app Factsheet available on website home, encourage them to confide in friends about their epilepsy and to explain to them what to do in the event of a seizure.

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Treatments for epilepsy

Antiepileptic medication is the first line of treatment for epilepsy, although there are other options available that may be considered if seizures prove drug resistant.

Medication How do AEDs work? so regular blood tests will be needed. Your doctor may also need The most common treatment Antiepileptic drugs work by creating to monitor how your child’s other for epilepsy is medication. an environment in the brain making body systems, such as their liver, Medicines used to treat epilepsy it less likely that a seizure will occur. are responding to the medication. are referred to as antiepileptic The brain is a very complex organ

drugs or AEDs. They do not and many intricate structures Medications don’t always work cure epilepsy or treat the cause, and processes are involved in and your child may continue to but they aim to reduce the its everyday functioning. During experience seizures even when likelihood of seizures occurring. seizures a combination of processes they are taking the optimum can disrupt the delicate balance dose. If there is no change in the There are a large number within the brain and this results in frequency of the seizures, your of AEDs available in the UK sudden bursts of electrical activity. doctor will recommend trying an and most are used on adults AEDs are designed to maintain a alternative AED. before they are licensed for better balance so this disruption is use in children. Your doctor prevented. Some AEDs enhance When another AED is introduced, will choose the best one for particular chemical processes it may be as an ‘add-on’ to an your child based on a number within the brain and others work existing medication which is of factors. These include by blocking or inhibiting different continued. Alternatively, it may the types of seizure they are chemical processes. replace the existing medication, experiencing, which syndrome which will need to be gradually they have, the likelihood of Finding the right medication for reduced. This can be very seizures recurring and the your child may take some time, so frustrating as starting and benefits or potential adverse it is important to persist. AEDs are stopping medications can take a effects of the treatment. always introduced at a very low long time, but it is important to be dose and then gradually increased. patient and stick to the plan. It is not usual to start treatment This process allows the body to get after just one seizure unless used to the medication and reduces it occurred for a clear reason the chance of adverse side effects. TOP TIPS which makes it very likely that Increasing the dose to the right An individual Healthcare Plan further seizures will follow. level may take a few months and it (IHP) or an RCPCH Epilepsy is vital you follow the plan given to Passport can help to ensure you by your doctor. The optimum 18 any important information about 19 dose for your child is decided using your child and their epilepsy is a calculation based on your child’s available in an emergency. height and weight. For some AEDs it is important to check how much medication is in the bloodstream,

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Side effects of medication As with all medications, AEDs can have side effects. You should receive a patient information leaflet with the medication which lists any known side effects and how likely they are to occur.

Some common side effects of AEDs include: • drowsiness or lethargy • irritability or mood swings • changes in behaviour • weight loss or gain and appetite changes • difficulty concentrating, learning and memory problems • dizziness or unsteadiness • hair loss

It is important you keep a record of any responses to medication, changes in behaviour or potential Taking medication ƒƒ If your child has been taking side effects so you can tell your medication regularly, do not Most medications will be doctor. Monitoring behaviour is stop it suddenly without available in a form suitable for especially relevant in younger advice from your doctor. children as they may not be your child. Those most likely to able to tell you if they are feeling be prescribed for young children ƒƒ Always keep a record of the nauseous, but they may be irritable will come in a liquid form. Some different medications your or off their food. medications come in a sprinkle child has been prescribed. form and some tablets may be We can believe we remember crushed into food, but it is best which medication was given TOP TIPS to check with the pharmacist in the past, but we forget all before doing this. Slow- too easily. It is best to have If your child develops a rash release tablets should not be a record of when a medicine soon after, or within a month crushed. was started and stopped, the dose given and the results of, starting a medication this ƒƒ It is important the medication and side effects it had. can be a sign of an allergic is given regularly and at set reaction and it is important times each day to maintain ƒƒ Always check you have 19 you seek urgent medical constant blood levels to enough medication for your attention. An allergic reaction optimise seizure control. child so you do not run out. can be serious. Use our app

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Other treatments for epilepsy Although medication is usually the first line of treatment for epilepsy, there are other options available that may be considered if seizures prove drug-resistant.

Neurosurgery Brain surgery may be considered as a treatment for epilepsy if: • medication is ineffective • the results of detailed investigations show the seizures are coming from a specific part of the brain • removal or disconnection of this area will not cause further complications Vagus Nerve Stimulation Ketogenic Diet The decision for your child to Vagus Nerve Stimulation (VNS) Dietary treatments for epilepsy have surgery is not an easy one can be used alongside other have been around for over a and the team working with you treatments, such as medication, hundred years. There are a will support you. You will have and is considered when seizures number of specialised diets plenty of opportunities to discuss are very frequent. A small device, available. They are all are based the risks and benefits with your similar to a cardiac pacemaker, on the same principle of using child’s doctor and surgeon. It is is implanted under the skin near a controlled diet to enable the likely your child will need help too the collar bone and is connected body to produce ketones by and a play specialist can spend to the vagus nerve in the neck. metabolising fats. This diet, used time with your child to help them By stimulating the nerve at alongside AEDs, may not be understand what will happen. regular intervals, the frequency effective for everyone but, for and intensity of seizures may be some, it may improve seizure Depending on the type of reduced. It often takes around control with fewer side effects epilepsy and area from which a year before improvements in than other treatments. Any the seizures originate, there are seizure control are observed dietary treatments for epilepsy a variety of surgical procedures and there can be side effects. should only be used under the that may be performed. This treatment has been used in supervision of a consultant and children as young as six months specialist dietician. For more

Factsheet available on website of age, but it is more commonly information, visit used in older children. www.matthewsfriends.org 20 21

Factsheet available on website Factsheet available on website

20 A GUIDE youngepilepsy.org.uk FOR PARENTS

Deep Brain Stimulation Complementary medicine If stress is one of your child’s This is a procedure that may and alternative therapies triggers for seizures, it may be that be considered for those whose Finding a way to control your massage with certain essential oils seizures are poorly controlled on child’s seizures with no side will help relaxation. It is important antiepileptic drugs and for whom effects would be ideal. Some that any therapist is qualified or other surgery is not suitable. people turn to complementary regulated and knows about your It involves electrodes being therapies such as homeopathy, child’s epilepsy and their treatment. inserted into a part of the brain aromatherapy, massage, where there is epileptic activity. acupuncture, chiropractic Be aware that although some oils These are attached to extension treatment, yoga or relaxation have been reported as beneficial, wires under the skin leading to therapy to help their child’s others may make seizures worse. a neurostimulator in the chest. epilepsy. There is no conclusive It is important not to change your Impulses from this, controlled by scientific evidence these therapies medication without consulting a programmer, can stimulate the reduce seizures. As a result, most your doctor and to consider part of the brain with epileptic doctors will not recommend them. the possibility of an increase in activity. However, as the evidence It is important to discuss seizures. Some herbal remedies, for its efficacy is limited and there with your doctor first if you for example St John’s Wort, is a risk of side effects, careful are planning to see an may interact with antiepileptic consideration is taken before this alternative therapist. drugs and affect seizure control, option is commenced. There is so always take medical advice currently restricted availability for before starting anything new. this procedure.

Factsheet available on website

External Trigeminal Nerve Stimulation (eTNS) This is a newer procedure not yet widely available in the UK. An external stimulator attached to patches on the forehead triggers impulses along the trigeminal nerve. This sends signals to specific brain regions to prevent seizures. It is designed to be worn at night and has been used in those aged 9 years and upwards with drug-resistant epilepsy, as an addition to antiepileptic drugs. Current results suggest a greater than 50% reduction of seizures 21 in some individuals and further trials will show if benefits persist long term.

21 A GUIDE youngepilepsy.org.uk FOR PARENTS

Q&A: Commonly asked questions about medication …

What do I do if I have extra dose is taken, but others Can my child take other forgotten to give my child may cause side effects if the medicines at the same time? their medication? blood levels rise even a little. Most of the common If a dose of medication is medications used in young missed and you remember up Why do medicines have two children are safe to take to three hours after missing the different names and which alongside antiepileptic drugs, dose, give the forgotten dose one should I be getting? but you should always ask immediately. If you remember Most medications have both a the pharmacist if you are only at, or near, the time the brand name and what is known buying over-the-counter next dose is due, just give your as a generic name, usually the medicines. Your GP will know child the usual dose. chemical name of the active what medications your child drug. When new drugs are is on, but if your consultant What should I do if my developed the manufacturers has made a recent change to child is sick or spits out the have exclusive rights to make your medication or its dose, medication? that drug for a set period of you should tell your GP. With time as they have invested in most AEDs, the normal dose If your child vomits within 15 the research, development of paracetamol or ibuprofen minutes of taking a dose of and testing over many years. will not cause any problems. medication or you are able This results in a branded drug. However, ibuprofen and to identify it in the vomit, you Once this period is finished, other anti-inflammatory drugs should give the dose again. If other manufacturers are allowed may increase the effects you are not able to identify the to make the same drug and of phenytoin, so consult a medication, do not give it again. it is then called by its generic pharmacist or doctor before If you are concerned, speak to chemical name. giving this to your child. your pharmacist or GP.

Generic drugs are generally Can my child have the usual What should I do if I have cheaper but it is important for childhood vaccines? given too much medication? those on antiepileptic drugs to Children can be safely If you have given too much remain on the branded version immunised with routine medication, it is important you as children, in particular, are childhood vaccines if their seek urgent medical advice very sensitive to any changes. condition is stable. If still being from your doctor or pharmacist. Your consultant and GP will be investigated, children can have Some medicines may not able to prescribe the branded their immunisations postponed. cause much of a problem if an medication.

22 For non-emergency number queries, you can call the NHS on 111 to speak to an adviser. 23

22 A GUIDE youngepilepsy.org.uk FOR PARENTS

Some vaccines can cause a rise in body temperature which ? can occasionally trigger a febrile seizure, especially in children ? with a family history of these. The vaccine can still be given as normal, with monitoring and treatment of a temperature rise as necessary. A high temperature ? can occur within 24 hours of ? the DTP vaccine and regular paracetamol for 24 hours after the ? vaccine may prevent this. With the MMR vaccine, a temperature rise may occur up to a week after.

Are meningococcal and HPV vaccines safe? Teenagers and students are offered a meningococcal vaccine to protect against meningitis. This can safely be given if seizures are stable and any fever after the immunisation can be treated with paracetamol. Girls aged 12 to13 years are offered the HPV vaccine and this is usually administered at school. Occasionally, fainting with associated jerk-like movements has been reported afterwards. Lying down for 15 minutes post-immunisation can help to prevent this.

For non-emergency number queries, you can call the NHS on 111 to speak to an adviser. 23

23 A GUIDE youngepilepsy.org.uk FOR PARENTS

Working with professionals

When you have a child with a health condition, you will suddenly find yourself in a new place where it seems everyone is speaking a language you don’t yet understand. There is a lot to learn and it can feel very daunting.

The professionals you will meet However, some children may be special interest in the condition. are highly trained specialists who seen by their GP first and then At the hospital you may also see know a lot about epilepsy and referred to a paediatrician at the an epilepsy nurse specialist. the brain, but remember you are local hospital. This is an experienced nurse who the expert on your child. Only you has completed additional training know if their behaviour is unusual Your paediatrician will be your in epilepsy. They are often your for them. main doctor and will keep your first port of call if you have any GP informed about diagnosis and concerns or questions between The doctors and nurses will help treatment. You should still see appointments. You will be given you to understand more about your GP if you have any other a contact number for them and your child’s health condition but health concerns. If you have a they are happy to be called. they will ask you for information health visitor, they will also be They are often very experienced about what has been happening. kept informed. Your paediatrician at supporting families and can Remember there is no diagnostic may arrange for your child to answer most questions. If there test for epilepsy, so the doctors have some investigations. They are specific queries they cannot rely on information from you will decide on the best course of answer, they may be able to and your observations of any treatment to be prescribed and speak to the paediatrician about suspected seizures. inform your GP. your concerns.

You are likely to see a fair bit The National Institute for Health Some children will need to be seen of these people, so it is worth and Care Excellence (NICE) by a more specialist doctor and developing a good relationship so publishes guidelines on how your paediatrician may refer you you can talk openly about your children with epilepsy should to a clinic at a specialist centre concerns, hopes and fears. be managed by doctors. The or hospital (tertiary level care) to latest guidance states that a see a paediatric neurologist. specialist should see all children This specialist may request further Who’s who? who present with seizures within tests or investigations and may If you were at home when your two weeks of the first seizure. discuss other treatment options child first had a seizure, or As epilepsy is one of the most or medications with you. They will suspected seizure, then it is likely common neurological conditions write to your paediatrician and GP you will have seen a paediatrician in childhood, many paediatricians to keep them informed so they can 24 25 (children’s doctor) in the accident are additionally trained in epilepsy monitor your child’s treatment. and emergency department. and are known as having a

24 A GUIDE youngepilepsy.org.uk FOR PARENTS

Preparing for consultations and appointments - top tips from parents

It is worth spending some time Keep a record of all seizures, Ask about emergency preparing for any appointments including any suspected seizure medication and, if it is with your child’s doctor. Write activity you may be concerned prescribed, make sure you down any questions you have, about. It’s easy to think you will understand when it should in advance, as it is easy to remember it all, but it is very easy be given – it can be written forget them when you are in to forget. (Young Epilepsy has a down into what is known as the clinic or are distracted by free app you can use, or you an ‘emergency protocol’. This your child. can download record forms from document will then be used if the website.) your child is admitted to hospital. No question is silly or irrelevant. Although your doctor doesn’t Make sure you ask as you may Agree a care plan with your have a crystal ball, it’s ok to ask regret it if you don’t. doctor and make sure you about the future. This could understand it before you leave. include long-term prognosis, Make sure you get answers Managing multiple medications whether you child’s seizures to all your questions from can be confusing so make sure it are likely to become controlled the doctor and don’t be is written down in a way you can or if they will grow out of them, afraid to ask for clarification if easily follow. there is something you don’t what you should expect over understand. the coming months or years and Find out more on our website what the impact will be on your child’s development.

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25 SPECIALISTS IN EPILEPSY SUPPORT Assistive Technology Can Help You Assistive Technology will provide you with the peace of mind you’ve been looking for. Alert-iT is a forward thinking manufacturer specialising in the design, production, & distribution of care alarms systems in the UK and Europe, we will help reduce the stress of caring.

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27 A GUIDE youngepilepsy.org.uk FOR PARENTS

Living with epilepsy

Day-to-day life with a child can be stressful for any parent, but even more so if your child has a health condition. It is completely normal to worry about how you will cope.

Taking care of yourself Many parents go through a range A good night’s sleep of feelings when their child is Life is very busy and most parents In order to face the day you need diagnosed with a medical condition we meet spend very little time to start after a good night’s sleep. and it can take some time to find the looking after themselves – their Extreme tiredness can be really new ‘normal’. Initially you may feel a children and family come first. hard on your physical, mental sense of grief or even shock at the and emotional health. If you find diagnosis. Some parents experience In order to be there for everyone you are not getting sufficient feelings of guilt, but it is important to else, you do need to take care of sleep, then try to rest when you accept that you are not to blame. yourself. An occasional evening can – you really will feel better out or even a quick daytime nap for it. Enlisting friends and family When worry and anxiety take over can help recharge your batteries. to help with meals, household and you feel overwhelmed, it is Even these simple things can chores and looking after other important you recognise you need seem unachievable at times and children from time-to-time can support too. There may be some the effort required can feel like it give you some respite. periods when you feel low or even outweighs the benefits. It is worth depressed. If this persists, you making this effort as you will feel The experience of a serious need to seek some help – make an better for it and it will benefit the medical condition is a stressful appointment to talk to your GP. rest of your family. event for any family. For the child, concerns about seizures at night You will also find you become an Family and friends can be a great and anxieties about their epilepsy expert on lots of things you never source of support, although there in general can affect their sleep. expected. Over time you will find may be times when you feel they This may result in temporary positive ways of coping. With the don’t understand the challenges regression to ‘younger’ behaviour, knowledge you acquire you may you are facing. Some parents find such as requiring the presence even begin to support others as it helpful to meet, or talk, with of a parent to fall asleep. Setting they start their journey. other parents of children who limits and enforcing rules may, have had similar experiences. for a time, become a secondary Your epilepsy nurse specialist concern to your child’s physical may know of a local support TOP TIPS health. However, in the long group you can join, or you may Make the most of your term, good sleep, or the best find one of the online parent appointments: remember your sleep possible, is integral to the forums a good way to connect epilepsy diary, speak up if you management of epilepsy. Creating 28 with others. feel changes are needed to the right environment, by avoiding 29 improve seizure control, discuss electronic devices and televisions any side effects you think your in the bedroom and ensuring it is child is experiencing. dark and quiet, will help.

28 A GUIDE youngepilepsy.org.uk FOR PARENTS

Sleep development The general advice in the table below also applies to children with epilepsy. If your child has a specific sleep problem, or you have a particular concern, do talk to your child’s GP or paediatrician for further advice. Sleep develops just like many other skills. Sleep patterns and requirements change dramatically over the first months and years of life. These patterns will continue to develop and mature right up to late adolescence. The following table shows you what to expect and gives some general tips on things you can do to encourage sleep.

Age Night-time sleep/ Naps/ 24 hours Milestones in General advice 24 hours sleep behaviour Newborn 10 to 19 hours of sleep per 24 hours. Sleep gradually aligns Place baby to sleep on his/her to 2 Sleep periods separated by 1 to 2 hours with periods of dark. back, on a firm surface.* months awake both during the day and at night time. Encourage natural light exposure in the morning.

2 to 12 9 to 10 hours. 3 to 4 hours Develops ability to Put baby into cot, drowsy but months Average 2 to 6 in total; initially self-soothe (e.g. awake. wakings a night – in 4 periods, thumb sucking). Aim to wean off night feeds/ may not always wake decreasing to 2. Develops sleep-onset bottles by 6 months. parents. associations (e.g. a Avoid sleep-onset associations special stuffed toy). that require parental intervention 12 9.5 to 10.5 hours. 2 to 3 hours in Increasing (e.g. rocking, verbal soothing). months total; decreasing importance of ritual to 3 years from 2 to 1 nap and routine. per day.

3 to 5 9 to 10 hours. About 25% of Starting school may Reading as part of the bedtime years 4-year-olds may require a shift in sleep routine may encourage better still nap. schedule. sleep. 6 to 12 9 to 10 hours. Daytime napping, Circadian preference Avoid television at bedtime and years sleepiness or (i.e. whether a person do not have a TV set in the dozing off are not is a natural ‘owl’ bedroom. normal in this age or ‘lark’) begins to Avoid caffeine-containing drinks group. This may emerge. (e.g. Coke, Pepsi). suggest a problem with sleep quantity or quality. 12 to 18 9 to 9.5 hours. Most None. The onset of puberty Electronic devices (e.g. mobile years get 7 to 7.5 hours brings a natural sleep phones, gaming systems) should due to early school phase delay (i.e. not be used near bedtime. start times. tendency to stay up Encourage efficient time or wake up about 2 management rather than ‘staying hours later than in up’ to complete homework. middle childhood).

29 * apart from this point, which applies up to the age of 18 months, advice applies to all subsequent age groups as well. Ref: A Clinical Guide to Pediatric Sleep: Diagnosis and Management of Sleep Problems by Jodi A. Mindell and Judith A. Owens (Lippincott Williams & Wilkins 2010).

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Monitoring seizures There are a number of devices feature allows these movements at night on the market designed to alert to be detected without triggering you to the onset of seizures. the alarm. As an additional You will very naturally be anxious Every child is different and so feature some monitors include if your child has seizures and you must be sure to consult a microphone to detect any will want to keep a close eye your doctor, or epilepsy vocalisations or sounds that may on them, even whilst they are nurse specialist, if you are occur before or during a seizure. sleeping. Around 20−40% of considering purchasing any seizures in childhood occur in night-time safety equipment. There are also digital movement sleep (this is much higher than sensor monitors available which in adults) and some epilepsy Basic audio-visual equipment provide a discreet way to monitor syndromes are characterised The simplest form of device is seizures. The monitor itself can by mainly night-time seizures. a listening monitor, such as a fit into the palm of a hand and is Seizures occurring during the baby monitor. This allows you equipped with high performance night are often referred to as to hear any sounds from your sensors able to identify seizure- nocturnal seizures. child’s room, but remember induced movements, whilst some seizures may be silent and ignoring sleep activities. Any There are also some types therefore you may miss them. detected irregularities alert the of seizure that tend to occur You can also have a monitor with parent or carer via a radio system. on waking, such as infantile a camera, so you are able to see spasms. It can be helpful if you Multi-symptom monitoring your child. However, neither of make a note of when seizures these devices will directly alert you These monitors are often are happening to help your to a possible seizure. designed to detect a number doctor look for any patterns. of symptoms associated with Tiredness and sleep deprivation Monitors detecting seizures – including bed wetting are commonly reported triggers movements associated and salivation. They can also be for seizures, so it is important to with seizures activated if the child leaves the establish good sleep habits. bed, if the child falls out of bed Several devices on the market during a seizure or leaves the bed monitor movements associated Although antiepileptic medications in a confused state. There is no with seizures, including muscle may affect sleep, effective one-size fits all solution, but the spasms. A special sensor pad treatment of seizures is likely sensors used in each monitor are is placed under the mattress of to improve sleep quality in the personalised according to the the bed or cot and settings are long run. needs of the child. tailored so its sensitivity levels Many parents are particularly can be altered to detect even the Monitors that detect changes anxious about nocturnal seizures small movements associated with in heart rate some seizures. as it is not possible to be with Some research has reported there your child all the time. Parents are often changes in heart rate at When movements are detected, need sleep too. Disturbed sleep the onset of a seizure. A device is an alarm is activated on the may be inevitable when caring for now available that monitors heart base unit or a mobile pager. a child who has seizures overnight rate overnight. A small sensor is The settings are programmed but many parents like the added worn on the wrist or ankle and 30 for each individual and take into 31 peace of mind a seizure monitor uses Bluetooth technology to account other movements that or assistive technology equipment connect to a base unit (dedicated may be associated with turning may give them. iPad) running an app which sends over or adjusting sleep position. an alert if the heart rate alters from An adjustable delay control the set parameters.

30 A GUIDE youngepilepsy.org.uk FOR PARENTS

Ways to monitor seizures at night 1

3 2 4

Basic audio-visual Monitors that detect movements 1 equipment 2 associated with seizures

Remember some seizures may be silent and therefore A special sensor pad is placed under the mattress of the you may miss them using baby monitors. bed or cot and, when movements are detected, an alarm is activated on the base unit or a mobile pager.

Multi-symptom Monitors that detect 3 monitoring 4 changes in heart rate

Monitors detect a number of symptoms that may A small sensor is worn on the wrist or ankle and an be associated with seizures – including bed wetting alert is triggered if the heart rate alters from the set and salivation. They can also be activated if the child parameters. leaves the bed.

Finding the right solution for your child. They will spend As with all medical devices, for you some time with you finding out seizure monitors undergo rigorous There are a number of about your particular needs to testing and must be compliant manufacturers of assistive assess whether their device will with certain ISO standards. A list 31 technology devices designed work for you. They will need to of manufacturers and suppliers of to alert you when seizure-like know some basic information monitors is available from activity occurs. It is important to such as the weight and height of our website. contact a number of them to find your child and what their typical out which will be most suitable seizures look like. Find out more on our website

31 A GUIDE youngepilepsy.org.uk FOR PARENTS

Sleepovers Having sleepovers can be an important part of your child’s social development. If you are anxious about your child going to a sleepover, in case they have a seizure, the best thing is to discuss concerns with the other parents as well as your child so they understand your reasons for being wary. An easy solution may be to have the sleepover at your house but inevitably circumstances will Explaining epilepsy is a manageable condition. mean it needs to be at a friend’s to your child It helps to support their participation house at some point – such as in activities and sports they enjoy It can be difficult to explain to your for birthday parties. An initial step so they see how they can do things child what a condition like epilepsy may be to pick your child up at like other children. will mean for them, especially an agreed time before bedtime when you are learning about it and and then work up to them staying There are many good resources coming to terms with it yourself. overnight. and story books available, How you respond to the diagnosis which you can read through can influence how your child copes There are ways to reduce with your child, to help explain with their epilepsy. your anxiety and ensure your seizures. If your child enjoys child’s safety. using a computer, there are some It is important to be open with practical websites with forums ƒƒ Make sure the friend’s parents your child. Most children cope where young people can contact are aware your child has better when they understand what others in a similar position and epilepsy, knows what their is going on. How much you talk exchange information. seizures look like, how to about it will depend on your child’s manage them and check the age and level of understanding, Siblings may also find it difficult parents are comfortable as younger children may be and frightening when a child has doing this. overwhelmed with too many seizures. They may feel isolated, facts. Keep explanations easy to ƒƒ Discuss with your child whether anxious or helpless. Explaining understand and be as positive as the other children at the things to them, discussing you can. It can help to ‘normalise’ sleepover should know about their feelings and encouraging their epilepsy, explaining that it their epilepsy. It is important questions may help to resolve any affects many children. they know to get an adult if a build-up of jealousy, fear seizure occurs. or resentment. Encourage your child to ask ƒƒ Where relevant, discuss the questions and to express feelings It is also important to encourage management of any triggers about their concerns. They may be friends and relatives to learn with the friend’s parents and anxious about all the unknowns, 32 about the subject, so you may 33 your child – such as staying not being in full control or being find yourself providing relevant up too late and playing ‘different’. Help your child accept information for them as well. computer games for long epilepsy for what it is and show it periods without a break.

32 A GUIDE youngepilepsy.org.uk FOR PARENTS

Balancing risk Bathing Sleep and safety Children should be supervised in If your child has seizures at the bath at all times. Older children bedtime, it may be helpful to Taking part in sports and activities should use a shower where possible, have bed guards. A solid design is important for all children. You preferably one with a seat. If an older rather than slats will prevent limbs should encourage your child to child has a bath, keep the water becoming trapped. To reduce enjoy a full social life with as few shallow and ensure someone is injuries if your child falls out of restrictions as possible. Seizures outside the door, which should be bed, you can lower the height of are less likely to occur when unlocked and preferably ajar, so they the bed or put a mattress at the children are engaged in activities can hear if a seizure occurs. side to cushion any fall. they enjoy.

Other sensible precautions Some parents decide they would It is important to take sensible include: like a safety or anti-suffocation precautions, assess risk with pillow. These are normally made each activity and consider ways • plastic, not glass, shower screens of soft, highly porous foam of making each one as safe as or a shower curtain that permit greater airflow than possible, while avoiding being • a water temperature regulator set conventional pillows. They have overprotective. Imposing too to between 37−40oC to prevent a gentle rippled surface which many restrictions can affect your scalding provides an abundance of air child’s self-esteem and increase cavities between the surface the likelihood of anxiety and • bathroom doors hung so they of the pillow and the net cover. depression. open outwards to ensure your child will not be trapped in the These pillows should not be used for babies or children under three Things to consider when event of a seizure years old. assessing risk: Cycling • your child’s age Take precautions when your child is Safety precautions to take • your child’s capabilities out on a bike. Ensure they are always around the house • frequency of seizures accompanied and avoid busy roads. ƒƒ Radiator and fire guards, They should always wear a helmet. preferably with rounded edges, • any auras or warnings prior to should be secured in place. seizures Playing ƒƒ A cooker guard should be fitted • types of seizures Children should be encouraged to go and back hobs used when out with their friends but you should • triggers for seizures possible, with pan handles discourage your child from climbing turned inwards and towards • consequences if a seizure trees or anything higher than their the back. happens during the activity own height. ƒƒ Glass in doors, low windows and Swimming furniture should be safety glass if Ensure a competent swimmer TOP TIPS possible. If not, a protective film (who is aware of the seizures) to cover the surfaces can reduce swims with your child and is It is helpful to have bathroom risk of injury. doors that swing out, so watching them at all times. At ƒƒ Fitting corner edge guards 33 change hinges if necessary. the start of the session, inform to furniture can reduce injury Always ensure any internal the lifeguard about your child’s during seizures. epilepsy. If possible, try to choose lockable doors can be opened less crowded times for swimming. from the outside.

33 A GUIDE youngepilepsy.org.uk FOR PARENTS

Travelling and holidays There is no reason why you should not travel with your child in the same way as with other children, though it is important to consider taking the following precautions to make things easier.

expire 20/07/16 expire expire20/07/1620/07/16 expire 20/07/16 20/07/16

Avoid letting your child become overtired or Give your child their If your child has rescue or dehydrated from travelling and the heat. If your medication at regular intervals emergency medication child is going to be staying up late at night, and make gradual adjustments prescribed for prolonged encourage them to have a sleep during the day. to the time difference of the seizures, check the expiry date country you are visiting. and have it with you at all times.

genericgenericgeneric namename expire name 20/07/16 generic name generic name If you are travelling by plane, you should take Carry a doctor’s letter with As the names of medicines your child’s medication in your hand luggage details of your child’s condition vary in different countries, in case your hold luggage is lost or delayed. and the medication they take, take medication in its original Inform the airline about your child’s condition. preferably translated into the packaging and be familiar with If your child has medication in liquid form, language of the country you the scientific (generic) name. check with the airline regarding the rules about are visiting. taking liquids on board.

expire generic 20/07/16 name

Before you leave for a holiday, make sure your If your child is going to be away Take extra medication with you, holiday insurance covers emergency medical from you for any periods during in case your return journey is treatment for your child’s epilepsy. Some the holiday, a medical alert delayed. insurance companies may need a letter from bracelet with details of their your doctor so it’s worth allowing plenty of time seizures would be useful. before you go to organise these things.

34 35

The Traveller’s Handbook for People withgeneric Epilepsy produced by the International Bureau for Epilepsy name (IBE), has useful information and epilepsy first aid instructions translatedexpire into 13 languages. This can be expire 20/07/16 downloaded from www.ibe-travelhandbook.org 20/07/16

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generic generic name name A GUIDE youngepilepsy.org.uk FOR PARENTS

Learning and behaviour

An epilepsy diagnosis is not necessarily a barrier to success; many children with the condition will achieve both academically and socially.

Although learning difficulties are not an automatic You can learn more about the difficulties children with consequence of epilepsy, children with the condition epilepsy face in school by reading Young Epilepsy’s are at greater risk of learning and behavioural issues CHESS (Children with Epilepsy in Sussex Schools) than those without it. However, these difficulties are report. It is free to download from our website. often missed because of the pressing medical needs of epilepsy. Find out more on our website

Effects on learning and behaviour

Children with epilepsy may experience difficulties with: • visual, verbal and short-term memory • sentence comprehension • reading • spelling • speech and language • mathematics and problem solving • motor ability, e.g. handwriting and coordination • maintaining consistency in learning • psychosocial problems, e.g. low self-esteem, frustration, anxiety and poor motivation • behaviour, e.g. hyperactivity, inattention and impulsivity

The impact epilepsy can have on learning and behaviour is often underappreciated. For children with epilepsy to thrive both academically and socially, it is vital these difficulties are identified and addressed, 35 early on, by health and education authorities responsible for their well-being.

35 A GUIDE youngepilepsy.org.uk FOR PARENTS

What causes learning How seizure-related Learning difficulties may be and behavioural factors impact learning directly related to the types of seizures that the child problems in children and behaviour experiences. with epilepsy? The seizures themselves Some specific examples The four main factors that The majority of seizures will disrupt include: contribute to learning and a child’s ability to learn because behaviour issues in children they either cause the person to ƒƒ Absence seizures – although with epilepsy are: become unconscious or alter their brief, these seizures can occur • seizure-related factors awareness. Even if a child retains frequently and cause the child e.g. tiredness complete awareness during a to miss out on parts of their seizure the physical, sensory or lessons. • side effects of cognitive symptoms experienced antiepileptic drugs ƒƒ Tonic-clonic seizures – a may still disrupt their ability to child is likely to miss out on • additional co-occurring concentrate, process information lessons after this type of conditions (comorbidities) or participate in learning activities. seizure for various reasons. • psychosocial issues These include feeling extremely tired, the risk of injury, • underlying cause of the epilepsy side effects of emergency medication and the possibility of admission to hospital. ƒƒ Temporal lobe seizures – some temporal lobe seizures can cause temporary problems with memory, including short- term, verbal and visual memory.

In addition, seizures can result in longer term issues with learning and behaviour as a result of interference with brain development. In some cases, the child may find it difficult to make learning gains, either in general or in specific areas. For others, a decline in learning or behaviour in specific areas may be observed. The extent to which this happens, if at all, is unique to each child and depends on the age of onset of their epilepsy and the 36 frequency, duration or severity of 37 their seizures.

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Build-up to a seizure Sleep disruption that learning and behaviour may The term ‘prodrome’ is used to It is not uncommon for children fluctuate as the child grows and describe changes observed in some with epilepsy to experience medication dosages are altered children during the hours, or even disturbances in brain electrical accordingly, so the support days, before a seizure happens activity during sleep, which may provided can also be adjusted. as the level of electrical activity or may not be accompanied gradually builds up. Behaviour by a seizure. In addition, some How additional comorbidities changes may be noticed such antiepileptic drugs can cause affect learning and behaviour as irritability, anxiety or becoming disturbances to sleep. A comorbidity is the presence of withdrawn. In addition, learning may one of more additional disorders be affected as the child’s ability to Disrupted sleep patterns in alongside a primary condition process information, as well as their children can interfere with or illness. Recent research from memory and concentration, may be memory formation and emotional Young Epilepsy has shown that affected. learning. This can result in the 60% of children with epilepsy child being tired and possibly meet the diagnostic criteria for Not every child will have a experiencing problems with at least one such comorbidity. noticeable prodrome, whereas for memory and emotional well- There are certain comorbidities some it may be very prominent. It being the following day. that children with epilepsy have a is important that anyone involved higher probability of developing. in the care of a child, who has How antiepileptic drugs can epilepsy, thinks about their affect learning and behaviour Common comorbidities with behaviour prior to a seizure and Some antiepileptic drugs can epilepsy include: whether there are any noticeable cause side effects that may affect • Autistic Spectrum changes. If the child has quite a a child’s learning and behaviour. Disorder (ASD) reliable prodrome, then it may be • Attention Deficit Hyperactivity possible to adapt activities prior These include: to their seizure to assist learning, Disorder (ADHD) • drowsiness and lethargy boost safety and ensure inclusion. • Developmental Coordination • slower information-processing Disorder (DCD) Recovery after a seizure • poor attention • emotional disorders, such as It is not uncommon for children depression and anxiety • memory difficulties to feel extremely tired, have a headache and experience muscle • problems with movement and Having a comorbidity can weakness following a seizure, as coordination complicate both the treatment their brain and body recovers. • mood changes and management of epilepsy, as In addition to these physical well as the co-occurring condition. Not all children will experience symptoms, the child may also feel It can also result in further learning side effects as a result of confused and experience problems and behavioural difficulties. antiepileptic medication. with memory, processing and It is important appropriate concentration. For some children, interventions are put in place to these problems last for a few hours, Side effects are more likely to manage these. or even days. The exact nature of occur when a new drug is first introduced, if a child takes more 37 the child’s recovery will be unique to each child and dependent on than one antiepileptic drug or many factors including the type of if the dosage is changed. It is seizure experienced, its duration important for those involved in and severity. the care of the child to be aware

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Epilepsy and Autism Characteristics associated with Autism The characteristics of autism Prefers to spend time alone Difficulty interacting with others vary widely, as do its effects. However, every child on the Poor motor co-ordination Absence of empathy autism spectrum will show some Hypo-sensitivity to certain Hyper-sensitivity to certain of the characteristics in the table. sensory stimuli sensory stimuli On average, approximately a quarter of children with autism Repetitive behaviour and Failure to use imaginative and develop epilepsy, compared to movements pretend play less than 1% of children without Favours routine and resists Rarely using gestures or facial the condition. changes expressions Obsessive interests and Failure to understand social rules If a child with autism has any of excessive attachment to objects and conventions the following risk factors, their chances of developing epilepsy Problems using language to Problems adapting to change are increased. communicate – may be delayed and unfamiliar situations as well or lost as planning for the future These include: ƒƒ Learning difficulties – the Medication and Sleep complications greater the degree of learning management issues Both autism and epilepsy can difficulties, the higher the risk Some antiepileptic drugs have interfere with sleep. As a result, of developing epilepsy. a negative effect on mood, poor quality sleep may worsen a ƒƒ Age – the risk of developing potentially worsening any child’s behaviour or ability to learn epilepsy increases at behavioural issues a child and could trigger more seizures. If adolescence. with autism may already have. your child is experiencing problems ƒƒ Presence of other Consequently, the decision with sleep, it is important to discuss neurological conditions around which behaviour it with your healthcare team to see management techniques to use if anything can be done to help. ƒƒ Presence of certain genetic may not be straightforward. conditions – such as Some of the more subtle Fragile X Syndrome and seizure symptoms, such as not tuberous sclerosis. responding to verbal or visual ‘Autism is a lifelong, There are many theories for the stimuli as well as repetitive developmental disability higher incidence of epilepsy behaviours, can mimic behaviours that affects how a person amongst children with autism, seen in autism. As a result, many parents of children with autism communicates with and many of which are related to relates to other people, genetic factors. find it hard to distinguish between the unusual behaviour their child and how they experience exhibits and seizure activity. the world around them.’ This could also delay the initial diagnosis of epilepsy. National Autistic Society 38 39

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Epilepsy and ADHD Explanations for the higher Emotional disorders incidence of ADHD amongst The diagnosis of Attention Emotional issues, such children with epilepsy include: Deficit Hyperactivity Disorder as depressive and anxiety (ADHD) is made when a child • the side effects of antiepileptic disorders, are some of the shows abnormally high levels of drugs (including inattention, most common comorbidities inattention and/or hyperactivity hyperactivity and mood within epilepsy. and impulsiveness. problems) Risk factors that may ADHD has three subtypes: • a common biological and/or genetic problem that causes increase the chances of a • predominantly inattentive type both ADHD and epilepsy child with epilepsy developing • predominantly hyperactive- an emotional disorder are: • the effect of seizures and/or impulsive type ongoing abnormal electrical • adolescence • combined inattentive and activity on the brain • taking more than one hyperactive-impulsive type • psychosocial issues stemming antiepileptic drug from having epilepsy • poor seizure control Some common characteristics of ADHD include: • temporal and frontal lobe Medication and epilepsy • hyperactivity diagnosis issues • family history of emotional • impulsive behaviour A question still remains as to whether treatment of ADHD with disorders • inattention stimulants is entirely safe for • other medical conditions, • difficulty learning new things children with epilepsy or whether especially those associated • performance may often depend they increase seizure frequency. with epilepsy In cases where seizure control on task • younger age of seizure onset is poor and there is a history of • disorganisation tonic-clonic seizures, seizure • female gender • difficulty modifying behaviour in frequency should be monitored • social problems different settings closely in the months following stimulant introduction. • side effects of antiepileptic • specific learning disabilities drugs • problems with executive Some of the side effects of • effect of seizures and/or functions antiepileptic drugs, such as ongoing abnormal electrical hyperactivity, inattention and activity on the brain Whilst ADHD affects between aggression, can mimic some of • psychological and social 3 and 5% of school age children, the symptoms seen in ADHD. issues stemming from having as many as 20−40% of children Furthermore, some seizure epilepsy with epilepsy also have ADHD. symptoms mimic behaviours seen The predominantly inattentive type in ADHD and vice versa. These is thought to be more common in factors may result in a delay to the children with epilepsy. diagnosis of either condition, or even misdiagnosis. For example, 39 absence seizures are frequently misdiagnosed as ADHD.

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Managing challenging Pros and cons of punishing unwanted behaviour How to show your child behaviour empathy when dealing with Whatever the cause of challenging Pros: Punishing unwanted difficult behaviour: behaviour, positive behaviour behaviour can result in the • make eye contact management strategies are often behaviour you want in the short effective. Children with epilepsy term because you are in charge • get down to their level and have authority. may experience problems with • give them your undivided brain function and development, attention which means they may need more Cons: Punishing unwanted support to learn self-control and behaviour does not address the • find, acknowledge and acceptable behaviour than you cause, so different unwanted validate the feeling behind might expect of other children behaviours are likely to result. the behaviour, e.g. ‘I can their age. They may also be more It also teaches the child that see you are angry and that sensitive to issues around them. punishment is acceptable, so can’t feel very nice’ they may use it against others. • try not to fix the problem Promoting good behaviour (proactive interventions) Working out the best strategies for each behavioural problem ƒƒ Address the child’s needs to is not easy and may not be Rewards vs Bribes avoid frustration. the same for every child or on Rewards motivate the child to ƒƒ Ensure appropriate, consistent every occasion. General positive behave the way we want, but also expectations. measures to reduce the number reinforce that they have done what of difficult behaviours is a was wanted. An agreement is ƒƒ Model good behaviour and good start before focussing on communication. made and rewards are given specific problems. consistently once the desired ƒƒ Reward desirable behaviours behaviour has occurred. – this does not always have to Reacting to challenging be a physical treat. It could be behaviour - reactive Bribes are inconsistent rewards stickers, praise, time with you, strategies for changes in the immediate privileges or responsibility. behaviour, often for bad behaviour ƒƒ Remove the trigger if possible. ƒƒ Boost self-esteem. to stop. They can work in the short ƒƒ De-escalate situations term but they do not teach long- by distracting your child. term good habits. Bribes are often TOP TIPS However, make sure you given before the good behaviour discuss the behaviour at a has even started, which teaches Explaining to your child’s friends later time when they are less children that bad behaviour gets about their epilepsy will mean emotionally charged. rewarded. they will feel more confident ƒƒ Try not to focus on the wrong about spending time together. behaviour, instead state the Children, like adults, are more desired behaviour. positive and keen to help if they ƒƒ Recognise the feelings behind understand what is happening. 40 your child’s behaviour and 41 show empathy. ƒƒ Give clear choices and explain the consequences for each.

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Using play to promote positive Dealing with psychosocial and emotional issues behaviour There are many issues that may arise for children and young people Play gives a child the opportunity with epilepsy. These will vary considerably with each individual to be in control. A child with according to the type and frequency of seizures, age, stage of epilepsy has so much in their development, level of confidence and the people that surround them. lives that is out of their control. Through the medium of play they can take back some ownership of Issues Outcomes their life, explore their own feelings • bullying • anxiety as well as reactions to their condition and experiences. • fear of seizures and injury • withdrawal

Play needs to be positive and • dependence on adults for care • lack of independence rewarding. It needs to help build • coping with medication side effects • lack of confidence confidence and self-esteem • low self-esteem whilst allowing a child to explore • poor relationships with parents, both themselves and the world siblings and peers • depression around them. Play gives children a chance to practise controlling • stigma and social isolation • behavioural difficulties their behaviour and learn about their emotions and reactions. • exclusion from activities • other psychiatric Play can assist learning and conditions self-development. • stopping medication

There are several stages or types of play that can be Encourage communication of concerns and anxieties identified as children develop: Here are some strategies to help support your child emotionally: • intensive interaction ƒƒ Create a regular time slot to discuss how the day or week has gone. • non-directive play Involve the whole family and try sharing some small problems your child could help you with. Even if they do not share their own concerns • directive play at this point, they will learn it is okay to talk about problems. • imaginative play ƒƒ Would they find it easier to share their concerns in a way other than • play therapy talking - perhaps writing it down? • games with rules ƒƒ Identify a few adults in their life with whom they could talk through • positive redirection any anxieties. Make sure they understand you are okay that they may not always feel comfortable talking to you about certain issues. For more information about these ƒƒ Try not to immediately fix their problems or anxieties. Sometimes types of play and how they may talking about their anxieties may help them find their own solutions. benefit your child – please read our Ask them what they think could be done to address problems and if fact sheet ‘Epilepsy and play’. they would like help with it. 41 Factsheet available on website

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Learn about epilepsy Encourage communication Provide specialist help with other young people ƒƒ Help your child to understand with epilepsy ƒƒ Children and young people their condition. who are significantly affected ƒƒ Being in touch with other by emotional issues may ƒƒ It is also a good idea for the young people with epilepsy can require professional help. whole family and close friends encourage the child to be more to understand the condition. ƒƒ Advice can be sought from open about their condition, Your child would then feel your child’s school, GP or reduce feelings of isolation surrounded by people who are epilepsy nurse specialist. and provide them with some aware and know what to do in positive social experiences. ƒƒ Your local Child and Adolescent the event of a seizure. Mental Health Services ƒƒ Some charities run events for ƒƒ Educating everyone involved in (CAMHS) team can provide this purpose or, alternatively, caring for your child, as well as counselling and specialist online forums may be useful. peers at school, is vital to raise psychological support. awareness, reduce stigma and Encourage participation in promote their inclusion. activities and a normal ƒƒ Young Epilepsy can provide social life training to school staff and pupils with a range of resources ƒƒ This is something parents available on our website for a understandably find extremely variety of audiences. difficult and children may need encouragement to overcome Encourage self-management their worries. ƒƒ Leading as normal a social life ƒƒ When your child is ready, as possible can help reduce encourage self-management the negative feelings of being of some aspects of their different, improve social condition. This will help them relationships, reduce the sense to accept their diagnosis and of isolation and encourage prepare them for transition to openness about epilepsy from adult services. TOP TIPS the first diagnosis. ƒƒ This may include things such Remember children may show ƒƒ Some people find seizures as: keeping a diary of their emotional distress in different are less likely to occur when seizures and any side effects ways – some may become they are engaged in satisfying from medications, asking withdrawn whilst others may mental or physical activity. questions at their appointments become irritable and have and setting reminders to take temper outbursts. If your child their medications. shows any signs of emotional distress, discuss it with their healthcare team as soon as possible so strategies and treatments can be put into place 42 to minimise its long-term impact. 43

42 A GUIDE youngepilepsy.org.uk FOR PARENTS

How should schools be supporting your child?

All children should have access to the full curriculum and be encouraged to partake in social activities.

Individual Healthcare Supporting learning assesment should be carried out Plans (IHPs) and behavioural needs by the Local Authority (you can request this). Every child with epilepsy should Prompt identification of learning have an Individual Healthcare and behaviour needs in children As the result of this assessment, an Plan that describes their medical with epilepsy is vital so appropriate Education, Health and Care Plan condition, how it is best managed support can be put into place. Young (EHCP) may be written specifically and the impact it has on their Epilepsy have developed a screening for your child. It describes your learning and behaviour. This plan tool to enable early identification child’s needs, what should should be developed jointly between and monitoring of areas of concern. happen to meet those needs the school and a healthcare The Assessment of Behaviour and and their educational provision. professional. However, the Learning in Epilepsy (ABLE) tool may All professionals who support responsibility for its implementation aid decisions for either SENCO level your child work together to form remains with the school. support or, if significant concerns this plan which is reviewed every are identified, an application for a year. The aim of this plan is to As childhood epilepsy can be an statutory Education, Health and ensure your child gets the support extremely fluctuating condition, Care assessment. If your child has they need to make progress and IHPs should be reviewed annually, a specific educational need, this achieve their full potential. or sooner if circumstances have changed. EHCPs for children with epilepsy should: Consider the factors contributing to learning and behaviour difficulties: Find out more on our website • seizures • treatment side effects • psychosocial issues TOP TIPS • comorbidities After a meeting with your Recognise that children with frequent seizures or who take several child’s school follow up with medications may: a letter or email, summarising • have difficulty in making learning gains the points discussed. This can • experience fluctuations in learning and behaviour clarify your child’s care plan for 43 you and the school. Making • experience declines in learning sure everyone knows the Appreciate that even after medication is discontinued and a important information can save child is completely seizure-free, underlying brain conditions you hours of worry at home. may persist and thereby continue to affect learning.

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In some cases, children with If your child’s doctor thinks Furthermore, schools must: additional learning needs may they are at risk of prolonged • make reasonable adjustments qualify for extra support during seizures, they may be prescribed to ensure these children exams. The exact nature of any emergency medication that are not put at a substantial support provided will depend can be given at home or at disadvantage compared with on the specifics of your child’s school. If this is the case, staff their peers needs, as well as the type of at your child’s school will require exam and the exam board appropriate training on how to • support their social and involved. In many cases, your administer this. emotional wellbeing, as well child would need to undergo as their education an assessment to determine Training school pupils whether or not they qualify. Good risk assessment will enable Much of the stigma and exclusion all children to have full access Training school staff associated with epilepsy comes to the curriculum and not feel from a lack of understanding The Children and Families Act excluded. Many activities can about the condition. Training 2014 brought in new statutory be managed by putting the all school children, in particular guidance on ‘Supporting pupils at appropriate levels of supervision the classmates of children with school with medical conditions’ in place and taking sensible epilepsy, is important for dispelling that must be implemented by all precautions. common myths, tackling stigma schools. Part of this guidance and promoting safety and inclusion. states that staff supporting your It is important to inform your child must have appropriate child’s school if they have been training to ensure they understand TOP TIPS unwell or if anything regarding your child’s condition and its their epilepsy changes, including Young Epilepsy can provide impact on their life. any medication adjustments. This epilepsy training for both is so they can adjust activities or school staff and pupils. Ideally, school staff should be levels of supervision if, and where, There is also a range of aware of the following: appropriate. resources on our website • seizure types and how to to enable schools to do this Record keeping identify them themselves. Emergency An accurate eyewitness account of • seizure management medication courses are what happened before, during and also available. information after a seizure will assist doctors in • what to record when witnessing contact epilepsytraining@ making a correct diagnosis, help in a seizure youngepilepsy.org.uk recognising patterns and changes • the impact of epilepsy on in a child’s condition early on, and learning and behaviour Inclusion may impact management and • what should be included in Epilepsy is a disability and is treatment. Where possible, it is an IHP covered by the Equality Act important that anyone involved in the care of your child records their • the importance of risk- 2010. This statutory guidance, alongside that in the document observations every time your child assessing activities and the has a seizure. types of safety precautions that ‘Supporting pupils at school with 44 can be put in place to ensure medical conditions 2014’, means 45 Use our app full access to the curriculum schools must ensure all children with epilepsy have full access to education, school trips and physical education and they are not discriminated against or victimised.

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How can you support your child’s memory and learning at home?

Help them break Use post-it notes to break Try using memorable tasks into smaller ideas into smaller chunks phrases or songs to help manageable pieces. and to provide a visual aid. them remember facts.

Encourage the Recap as much use of visual aids as possible. such as checklists, flashcards, RECAP diagrams, mind maps and colour coding.

Allow adequate Make sure revision thinking time time is broken into after you ask short sessions a question to (ideally 20−30 20-30 allow time for minutes at a time) mins processing. and is not when they are tired or hungry. 45

45 A GUIDE youngepilepsy.org.uk FOR PARENTS

Epilepsy, adolescence and beyond

At a time when many adolescents suffer from low self-esteem and a lack of confidence, those with epilepsy may also have feelings of anger, isolation and being different from their peers to add to their difficulties.

Becoming All these can result in increased • likelihood of a baby inheriting independent seizure frequency or loss of epilepsy seizure control. Alcohol can be • issues involving parenthood Parental overprotection during consumed in moderation, but with epilepsy (e.g. breastfeeding adolescence may make teenagers should be made aware and safety) relationships more strained. that skipping medication in order Your teenager will have a strong to increase alcohol intake will have Ensure your teenager is well- desire to ‘fit in’ with their peers. serious consequences. Encouraging them to lead as informed and understands about their epilepsy. Encourage them full a life as possible, with few For those of driving age, knowing to tell close friends about their restrictions, will lessen their a seizure can delay their chance condition and what to do if they feeling of isolation. The more of being able to drive − by another should have a seizure. This will independence they have, the year – can deter them from ease some of your anxieties. more ‘in control’ they will feel behaviours which may increase If they are involved in activities which will lessen the impact of seizure risk. epilepsy on their way of life. without their friends, consider a personalised medical bracelet. There are specific issues that This is also a period where may relate to contraception and There are some good teenage rebellion may become more of pregnancy. an issue. This may have serious websites and forums allowing your teenager to interact with implications for a teenager with These may include: epilepsy as it is not uncommon others in the same position. for young people to resist taking • worry about having seizures their medication, either in defiance during sexual activity A confidential helpline is also available at Young Epilepsy – or in denial of their condition. • how some antiepileptic In addition, they are also more drugs can affect hormonal 01342 831342 likely to be exposed to alcohol, contraception recreational drugs and erratic sms 07860 023789 • effect of antiepileptic drugs on sleep patterns. an unborn child e helpline@ 46 youngepilepsy.org.uk 47 Young people may also become • impact of pregnancy on more concerned about the side seizure control effects of antiepileptic drugs, such as weight gain or weight loss.

46 A GUIDE youngepilepsy.org.uk FOR PARENTS

Issues affecting AEDs, contraception planned well in advance and young women and pregnancy monitored from an early stage. It is important that all teenagers Hormonal changes occurring Some antiepileptic drugs are given information about the in adolescence may affect your can reduce the effectiveness effects of AEDs on contraception daughter’s epilepsy. Some of the contraceptive pill, and pregnancy before they seizures may stop at puberty ‘morning-after’ pill and become sexually active. and some may change in contraceptive implants. These frequency. For some women antiepileptic drugs, known as hormonal changes may cause ‘enzyme inducers’, include Sodium valproate seizures related to the menstrual carbamazepine, oxcarbazepine, Research has shown the AED cycle, which is known as phenobarbitone, phenytoin, sodium valproate can cause catamenial epilepsy. If you think primidone and topiramate. serious developmental problems your daughter’s seizures occur They cause the contraceptive in babies, when taken during at a common time within her hormones to be removed more pregnancy. The Medicines and menstrual cycle (it may not be quickly from the body. For this Healthcare products Regulatory during her period), ensure you reason, girls taking these drugs Agency (MHRA) has advised keep an accurate seizure record are usually given contraceptive that girls and women should and discuss this with her epilepsy pills with a higher level of only be treated with sodium nurse or consultant. Medication oestrogen and advised about valproate if nothing else works. doses may be adjusted to take other methods of contraception. As your daughter approaches this cyclical variation into account. This should be discussed with a adulthood, you may wish to family planning doctor. discuss with her the importance of seeking medical advice Some antiepileptic drugs can before planning a pregnancy. affect foetal development, Sodium valproate may be called 47 so changes may be made valproate or valproic acid. You to medication and doses may also know it as a brand prior to a pregnancy. For this name such as Epilim, Episenta reason pregnancies should be or Epival.

47 A GUIDE youngepilepsy.org.uk FOR PARENTS

Q&A: Commonly asked questions about epilepsy and adolescence

When will my child move be encouraged to become What are the current rules from paediatric to adult more involved in making about epilepsy and driving? services? decisions about the medical If your child has seizures when The transition from paediatric issues affecting them. they are awake as well as when to adult services usually they are asleep, they can apply occurs between 16 and 18 How can I help my child for a driving licence after being years of age. prepare for transition to seizure-free for 12 months. adult services? If your child has nocturnal Will my child just You could help your child seizures and it has been at suddenly start attending an prepare for transition by least 3 years since they have adult clinic? encouraging them to take had a seizure while awake, they In some regions there are increased responsibility can apply for a licence. Your adolescent transition clinics for their medical care and child may still be able to drive if to which your child may be appointments from an early they experience certain seizure referred, but this is not always age. They could start by: types which do not affect the case. These allow the consciousness, attention and • making their own clinic transition to be a more gradual their ability to control a vehicle. appointments process with staff from both the For more information check the children’s and adult services • having some time alone DVLA website. being involved. A complete with their doctor or review of the young person’s epilepsy specialist nurse What benefits can my child diagnosis and treatment should apply for once they are 16? • ordering repeat take place at around the time prescriptions A Personal Independence of transition. Payment (PIP) may be able to • keeping an up-to-date help with some of the extra How will adult health seizure diary costs caused by epilepsy, services differ from • recording any side effects once your child turns 16. The paediatrics? of medications payment your child receives will Paediatric health services depend on how their epilepsy often deal with a variety of • making a note of affects their life. Get help with issues your child has, not just questions they’d like filling out the application form their epilepsy. However, adult to ask their doctor or from local agencies, parent services will only deal with the epilepsy specialist nurse support groups and Citizens specified medical issue and will • managing their own Advice. If your child lives alone, refer you to other specialists for medication (with there may be additional disability 48 additional issues. Your child will supervision) payments they are eligible for. 49

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For more information, check the website GOV.UK/pip.

Can my child get help with the cost of public transport? Yes. A disabled person’s bus pass offers concessionary travel. Contact your local council for more information about bus passes in your area. A disabled persons railcard provides a third off tickets and can be used to travel anywhere at any time. To apply, visit www. disabledpersons-railcard. co.uk. Your child will need to provide proof of their condition when applying for either of these. A letter from your clinic or consultant usually works.

It’s best my child doesn’t drink any alcohol, right? People with epilepsy can drink alcohol but should only do so in moderation. In fact it is recommended they consume no more than 2 units of alcohol in 24 hours. There are many reasons for this, including excess alcohol can stop epilepsy medication from working, alcohol can trigger seizures in some people and epilepsy medications can increase the effect alcohol has on the body. 49

49 A GUIDE youngepilepsy.org.uk FOR PARENTS

Higher education

Going to university is a huge change for anyone. Often young people live away from home for the first time, make new friends and settle into a way of life different to what they are used to.

Lifestyle changes, such as these, can have an impact on epilepsy control so young people need to take them into consideration. Lack of sleep and exposure to stress, both of which are common in students, need to be carefully managed. Medication should continue to be taken regularly and students should be advised to avoid omitting doses. Alcohol is fine in moderation, but they should be aware of any effects on their seizure control and avoid binges; they may find their medication potentiates the effect of alcohol on their body. Recreational drugs are known to services can advise about Young Epilepsy is working increase seizure risk and should accessing practical support, such with colleges and universities be avoided. as dictaphones, or academic across the UK, to raise support, such as lecture awareness of epilepsy and to Ensure your child is aware of the handouts, or arranging extra time support young people as they small increased risk of SUDEP, for exams. They can also help with transition into higher education. particularly if their seizures are applications for funding. Disabled It aims to identify the higher uncontrolled. Also encourage them Students’ Allowance can help to education institutions going to tell friends about their epilepsy. cover some of the extra education the extra mile to improve their This will help them to feel more costs related to epilepsy. supported and make it easier for understanding of epilepsy, the impact it can have on their them to follow a lifestyle conducive All the changes can be difficult students and what they can do to better epilepsy control. for a young person with epilepsy. to best support them. You can They may find their confidence is learn more about the Epilepsy Epilepsy can affect a student’s low or start to feel quite anxious Friendly scheme by going to 50 memory and concentration, or depressed. They can call the 51 youngepilepsy.org.uk/EFM or so they may find they could university’s nightline service if calling our helpline on benefit from extra support. The they need emotional help or have 01342 831342. university’s student disability queries about practical issues.

50 A GUIDE youngepilepsy.org.uk FOR PARENTS

Getting a job

Epilepsy itself should not be a barrier to applying for and getting a job. When considering an application, a young adult should think about their qualifications, strengths, experience and how their epilepsy impacts them in everyday life.

Some jobs may not be suitable providing services online to In addition, employers have to for a young person with epilepsy help with recruitment skills and make ‘reasonable adjustments’ to if their seizures could put interview preparation. Find out avoid people with disabilities from themselves or others at risk of more at www.remploy.co.uk. being put at a disadvantage. This harm, for example jobs involving may include adjusting working working at a height, near water or Sometimes people find it difficult hours or providing specialist in the armed forces. Other jobs to tell an employer about their equipment. may be dependent on having a epilepsy. They worry about the driving licence so good seizure impact it will have, either on the Some people find it easier to control is an important factor. success of their application or the mention epilepsy on their initial way people treat them at work. application form, whereas others Local Jobcentre Plus offices can The Equality Act 2010 protects prefer to wait until they have a offer information about training people with disabilities, including job offer before disclosing their and employment. They also have epilepsy, from such discrimination. diagnosis. The advantage of Disability Employment Advisors Part of this Act states that people telling an employer about their who can help to find work or to no longer have to disclose their epilepsy is that it will allow the gain new skills for a job. Remploy disability on an application form employer to make necessary also have specialist advisors when applying for a job. adjustments to ensure their safety.

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Benefits and support

Having a child with a disability can put pressure on you financially. In the UK, benefit schemes and support networks are in place to help ease that pressure and to ensure your child has all of the things they need.

Disability Living VAT relief Information, Advice and Allowance (DLA) If your child is disabled, or has a Support Services Network DLA, for children, can help with long-term illness, you will not need (IASS Network) the extra costs of looking after to pay VAT on a range of goods Formerly known as the National a child who has difficulties with including seizure alarm systems, Parent Partnership Network mobility, or who requires more or equipment solely designed for (NPPN), IASS Network provides looking after than a child of the disabled people. information, advice and support same age who does not have to disabled children and their a disability. You can learn more about VAT parents. IASS is funded by the exemption for disabled people Department for Education and There are two components to by going to the GOV.UK website should be avialable within each DLA, a care component and or by calling HM Revenue and local authority. You can find out a mobility component and the Customs on 0300 123 1073. more about the closest service to amount you get for each will you by visiting their website: depend on your child’s physical NHS Low Income www.iassnetwork.org.uk ability and their day-to-day needs. Scheme (LIS) It may be that your child needs If you are on a low income or Blue Badge an assessment to check their benefits, you may be able to The Blue Badge scheme is eligibility; in the event of this, you claim back any travel expenses designed to help people with will receive a letter explaining you incur whilst attending mobility issues to park closer where you must go and what hospital appointments. For more to the places they need to go. paperwork you are required to information you can call the Low Your child may qualify for a Blue bring with you (e.g. birth certificate Income Scheme helpline on Badge if they receive the higher or passport as proof of identity). It 0300 330 1343. rate of the mobility component is worth noting your child will need of the Disability Living Allowance. to have an epilepsy diagnosis for Free prescriptions If your child has severe epilepsy at least 3 months before you can If you live in the UK, all children and is under the age of three they apply for DLA. are eligible for free prescriptions; may also be eligible. For more this includes antiepileptic information about the scheme and You can apply by completing medication. to find out if your child qualifies a form online at the GOV.UK for a Blue Badge, go to the website or by calling 52 GOV.UK website and search for 53 0345 712 3456 and ordering a ‘Blue Badge’. printed form by post.

52 A GUIDE youngepilepsy.org.uk FOR PARENTS

Useful resources

Young Epilepsy is continually developing a range of resources to help you record and share important information about your child. Below are some examples. All of these forms can be downloaded in full from youngepilepsy.org.uk

Young Epilepsy App Witnessing a Seizure Witnessing a Seizure (Use this table to help record your observations) Before the Seizure

Location

Preceipitating None Anxious Stressed Tired Other An innovative, free app that Witnessing a seizure can be Factors Preceding Irritable Impulsive Nauseous Strange Other Symptoms/ Sensations Feelings Position at Sitting Standing Lying Other can be tailored to the needs of Onset stressful and it is easy to forget During the Seizure Time at onset Time at end of Duration of seizure seizure Did the child Yes / No Forwards/ Description: each young person or child with some of the details. This form fall? Backwards Breathing Rapid Shallow Deep Laboured Other

Colour Note any changes in skin tone, particularly around the mouth and extremities.

Describe any Movements of: epilepsy. It includes an easy- can help you to record your Head Arms Legs Eyes Deviated to Deviated to Pupils dilated Other the left the right to-use seizure video function, observations before, during and Level of Fully aware Reduced Responsive to Responsive to No responses awareness/ awareness voice touch responsiveness Any Injury Tongue Limbs Head Other Incontinence Urinary: Yes / No Faecal: Yes No symptom log, diary and after a seizure so you can build Action Taken

medical prompts as well as a better picture of a © Young Epilepsy discreetly stored emergency child’s epilepsy. and contact details.

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Seizure description/record chart page 1 of 2 Individual healthcare plan Date of plan: ……………….. Individual Healthcare Seizure Record Chart Seizure record chart Name: ……………………………………………………………………… Date of birth: ………………… Total Address: ……………………………………………………………………………………………………….. Name Seizure type 1 Date of birth ………………………………………………………………………………… Postcode: ………………….. Seizure type 2 Month Seizure type 3 Name of parent/carer: ……………………………………………… Telephone: ...... Year Seizure type 4 Diagnosis (Including any other conditions): ..……………………………………………………………… This chart records the Plan (IHP) Date Time Seizure Awake/ Emergency Possible General ………………………………………………………………………………………………………………….. type asleep medication trigger comments 1 Epilepsy syndrome (if known): ……………………………………………………………………………… 2 Description of child's seizures 3 4 Please give brief a description of each seizure type including possible triggers and any warning frequencies and types of any 5 This document contains signs that a seizure may be about to occur. 6 Type A: ..……………………………………………………………………………………………………….. 7 8 ………………………………………………………………………………………………………………….. 9 ……………………………………………………………………………….. Typical Duration: …………… seizures. It can identify patterns 10 personalised information about This seizure has emergency protocol, see attached. 11 Type B: ..……………………………………………………………………………………………………….. 12 13 ………………………………………………………………………………………………………………….. 14

……………………………………………………………………………….. Typical Duration: …………… 15 This seizure has emergency protocol, see attached. in seizure activity which can help 16 your child’s epilepsy, the impact 17 Type C: ….…………………………………………………………………………………………………….. 18 ………………………………………………………………………………………………………………….. 19 20 ……………………………………………………………………………….. Typical Duration: …………… This seizure has emergency protocol, see attached. 21 to give doctors a better idea of 22 it has on their learning as well as Basic seizure management for convulsive seizures 23 24 1. Note the time that the seizure starts and ends 2. Move any hazards out of the way 25 3. Loosen tight clothing and protect the head 26 27 Let the seizure run its course. When the convulsions have stopped, place the person in the how best to treat your child. recovery position and stay with them until they are fully alert. If the seizure shows no signs of 28 protocol for emergency situations. stopping after 5 mins (or 2 mins longer than is usual for that person) or the person is injured, call 29 999. 30

Please call ………………………………………………………………….. to inform following a seizure. 31 © Young Epilepsy All children with epilepsy should * After a seizure, please record the details of the event, including time, date, length and any action taken. have an IHP at school.

ABLE Record of Emergency Record of the use of emergency medication Name Date of birth Age

I Date medication given

I Time seizure started The Assessment of Behaviour and Medication Type of seizure

I Number of seizures (if occurring in a cluster) Learning in Epilepsy (ABLE) tool I The emergency drug, dose and route given This document is designed so I Emergency drug given by whom Time emergency drug was given

I Time seizure stopped Length of seizure is for parents and teachers. This you can keep a record in the Comments

I Time ambulance called (if required) Ambulance called by straightforward questionnaire Assessment of Behaviour I Second dose emergency medication given at event of your child requiring any Second dose emergency medication given was (name, dose and route) and Learning in Epilepsy helps assess a young person’s (ABLE) emergency medication. Comments A teacher and parent screening tool for all school-aged pupils with epilepsy 53 I Time parents/guardians informed 53 Parents informed by whom needs to ensure they receive the I Person responsible for another supply of emergency medication I Comments right holistic support. © Young Epilepsy

53 A GUIDE youngepilepsy.org.uk FOR PARENTS

With thanks to

This guide has been made possible thanks to Professor Helen Cross OBE, The Prince of Wales’s generous donations from Alert-it and Medpage. Chair of Childhood Epilepsy and Kirsten McHale, Epilepsy Nurse Specialist for their valuable input into this guide.

Additional photography provided by Claire Ward- Dutton – Small Beans Photo School.

Special thanks to Dr Grace Dodridge for her work in the production of this publication.

To the great many parents who were willing to share their experiences and top tips with us – thank you!

More information and support

Young Epilepsy is the national charity working exclusively on behalf of children and young people with epilepsy. We are a leading provider of specialist health and education services and offer support, information and resources, as well as training for professionals. We also campaign to improve access to, and quality of, health and education services.

The Young Epilepsy website has a wealth of information to support you at every stage of your child’s development. We often add new information and update our resources so it’s worth checking regularly. You can also sign up to receive our email newsletter, which will keep you up-to-date and tell you about new resources for families. If you have a specific question, or just want to talk to someone – we are here for you.

01342 831342

sms 07860 023789 54 55 e [email protected] youngepilepsy.org.uk/parent-guide

54 A GUIDE youngepilepsy.org.uk FOR PARENTS

Better futures for young lives with epilepsy and associated conditions

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Young Epilepsy Helpline Call: 01342 831342 (Monday – Friday, 9am–1pm) Email: [email protected] Text: 07860 023789

Young Epilepsy St Piers Lane, Lingfield, Surrey, RH7 6PW Tel: 01342 832243 Fax: 01342 834639 Email: [email protected] youngepilepsy.org.uk

55 Young Epilepsy is the operating name of The National Centre for Young People with Epilepsy. © Young Epilepsy 2016 Registered Charity No: 311877 (England and Wales). Publication No: 382.1

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