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Epilepsy affects children at different ages, and in different ways. While epilepsy can begin at any time of life, the highest incidence occurs in children under 5 years. Although some people believe it is linked with physical disability or mental handicap, in fact most children with epilepsy have exactly the same range of intelligence and abilities as unaffected children. For most children, their seizures will respond well to medication and they will enjoy a normal and active childhood. While there may be the need for some sensible safety measures regarding swimming and some sports, this should not stop them from doing all the things their friends do. Access to the full range of childhood experiences will enable your child to grow into an independent self-reliant adult. Not all epilepsy diagnoses are lifelong. One of the most common types of epilepsy in children is Benign Rolandic Epilepsy that may or may not be treated with antiepileptic medications as it is known that seizures tend to disappear when the child reaches puberty. Nor are all seizures epileptic in origin. Febrile seizures or convulsions occur only when a child has a rapid rise in body temperature and are most common in children between the ages of 6 months and 5 years. A minor infection such as a sore throat or ear infection, but sometimes a more serious infection such as encephalitis or meningitis, can be the cause of the fever. It is advisable to seek medical attention in the event of a febrile convulsion so that the cause can be determined and your child receives appropriate care. For some children, however, epilepsy will be a lifelong challenge as some epilepsy syndromes can prove difficult to control. Your paediatric neurologist or paediatrician can identify an epilepsy syndrome by the type of seizures your child has, the age of onset and other identifying signs and symptoms. Children with difficult to control epilepsy may have other problems, such as delayed development and learning difficulties. For children whose seizures are not controlled by medication or they experience unacceptable side effects, several treatments including surgery, the ketogenic diet, and the vagus nerve stimulator [VNS] may be effective in treating their seizures. Surgery is being used successfully in some children who do not respond to medication or experience troubling side effects. The good news is that groundbreaking research is unlocking the mystery of what causes epilepsy. With this knowledge comes a range of treatment options that offer great promise for children with difficult to control epilepsy. There is often no obvious explanation as to why a child has epilepsy. It is known that epilepsy can follow a head injury or that it may result from health problems during pregnancy or be an after effect of a childhood disease such as measles or whooping cough. Brain tumours [very rarely] may be involved. When the epilepsy is the result of an illness or injury, it is called symptomatic epilepsy. But in most cases it is not possible to point to the cause of a seizure disorder. In this case, it is called idiopathic epilepsy. Did your child 'inherit' his epilepsy from you? If you have another child, what are the chances that the child will develop a seizure disorder? The answer to both questions is not likely. Only if both the parents come from families with histories of seizure disorders is heredity likely to be a factor. And while the child may develop epilepsy, the chances are much greater that they will be normal, healthy individuals. If you would like to know more about how your family history can influence the chances of a child developing a seizure disorder, you may wish to consult a neurologist or genetic counselling service. Diagnosing your child's epilepsy It is important to establish what type of epilepsy syndrome your child has because that will determine: • the type of medical management required, and • what effect epilepsy will have on your child's day to day life. Many children have their first seizures during their pre-school and school years. In diagnosing epilepsy the doctor will require detailed information about what happened before, during and after the seizure. Your observations and the teacher's observations in relation to seizures, the child's behaviour and progress at school are all most valuable. Ideally, the responsibility for the child's medical, emotional and educational management should be undertaken by a team approach with parents, doctors, teachers and other professionals working cooperatively. Such an approach can minimise any effect that epilepsy may have on your child's total development. In addition to taking a medical history, the doctor will perform a physical checkup. A neurologist, paediatric neurologist or paediatrician usually performs this examination. A neurological examination generally involves a number of tests, some of them using complex instruments. For example, the electroencephalograph [EEG] records electrical activity in the brain and often shows electrical disturbances in children with epilepsy. While the EEG test is painless, it can be frightening to a child unless they are properly prepared beforehand and understand what is happening and why the test is being done. Your child may also have a CT or MRI scan which is similar to having an X-ray of the brain. As it is imperative to lie still to get adequate pictures, it may be necessary to give a light general anaesthetic in the very young child. The scan is useful in identifying any abnormality in the structure of the brain. Most children with epilepsy do not have any other associated problems. However, some children with epilepsy may have difficulty with schoolwork. They may appear drowsy, lack application and concentration, or have memory problems. There may be specific learning difficulties associated with reading or mathematics. However, these problems are fairly common in many children and should not be immediately ascribed to epilepsy. If your child's teacher reports that the child appears to be having significant learning difficulties, or is performing consistently below their capacity, appropriate help should be sought at an early date. Learning difficulties may be attributable to the seizure disorder, medication side effect, or low self-esteem or a combination of these factors. It is important that parents and teachers do not 'pre-judge' all children with epilepsy as 'likely to have learning problems'. The level of expectation for each child has a significant influence on performance. A positive approach of encouragement, stimulation and reassurance from parents and teachers will help the child to develop confidence and skills. Some children with epilepsy may show behaviour disturbances with or without learning difficulties. Disturbed behaviour may be attributed to the same factors that affect learning. Low self-esteem can result from over-protection, lack of discipline or merely feeling different from other children. If behaviour disturbance reaches a level that causes concern, help can be sought through the school system or your state epilepsy association. Your child's teacher will know where to refer your child for help. Explaining epilepsy to your child We often overlook the fact that a child with epilepsy is likely to make up fantasies about the seizures unless they are properly explained to them. So it is important that children with epilepsy should be given a factual explanation about seizures, and one that they can understand. This will help to prevent undue anxiety and will lead to a better acceptance of the condition and of its treatment. Information is available your state epilepsy association to assist you in explaining epilepsy to your child. Your child's activities Most children with epilepsy can and should take part in sports and other activities that are consistent with their age and offer a reasonable degree of safety. It is important that parents and teachers encourage young people with epilepsy to grow into independent self-reliant adults. The problem is to determine what is an acceptable risk. Obviously some activities are inherently more hazardous that others and each child is different. Your feelings as parents Like most parents, your child's health is one of your most important concerns. Even so, people react in different ways when they are first told that their child has epilepsy. Some parents find this very difficult to accept. Anger can be a common reaction: why did this happen to my child? Depression and feelings of inadequacy may follow. It is worth taking the time to examine some of these emotions, because with time and increased understanding many of these feelings will be resolved. Also your feelings can influence your child's reaction to their condition. If you deal with your child's epilepsy in a relaxed and open manner, your child will naturally feel relaxed about it too. Seeking the facts about your child's unique situation will increase your confidence in dealing with it. It is important for parents to discuss their feelings openly with each other. Husbands and wives can be great sources of emotional strength to each other. It may also help to talk to staff from your local epilepsy association, as they will understand your fears and doubts and may be able to put you in touch with parents who are in a similar situation. Nurturing self-esteem in children who have epilepsy Self-esteem is one of the most precious qualities a child can develop. For with self-esteem the life-long challenges of forming healthy and responsible relationships and the skills and confidence to reach personal goals can be achieved. For children with epilepsy, high self-esteem is especially important yet it can sometimes be hard to attain. Epilepsy for some is an ongoing condition and children can meet with ignorance and misunderstanding about their condition from peers, teachers, the community and even family members. Coping with a condition that is characterised by unpredictable and irregular seizure activity can place the child in situations that can lead to feelings of embarrassment, rejection and guilt. As a consequence, difficulties can arise [at school, socially with their friends, and within the family] which make it hard for a child to have a positive attitude. Remember each person is unique – there is no one else in the world like your child. So it is especially important for parents/carers and family members to relate to the child who has epilepsy so they do feel unique, loved and capable. Good relationships are based on affection, inclusion and control. These psychological needs continue throughout life and enable us to become self-loving and confident people. We all love to be smiled at and hugged. Giving and receiving affection helps us all to feel loved and capable. Being included in activities whether at home, at school or at play, fosters a feeling of belonging with family and friends. These experiences help us to feel capable and confident in social situations. And we all need to have a sense of control within our lives. For the child this is helped by consistency in relationships with parents, teachers, and friends. Being able to participate in decision-making [taking into account the age of the child] and goal setting helps to achieve this sense of control. Incorporating these elements in your day to day interactions with the child will help establish a positive attitude towards their condition and themselves. Children understanding epilepsy Nothing ever seems so frightening if we have an understanding of it. Discuss epilepsy in an open, positive way. Honest explanations need to be matched to the child's level of understanding. Be open to their feelings and concerns about their seizures. Include the child in conversations, rather than talking about epilepsy in their presence. Building on their strengths Everyone has their own strengths: helping to develop them produces a positive self-image. Find out what the child likes to do and encourage them in this endeavour. Using their strengths in areas that they find more difficult, can often help them to achieve in that area too. Try to avoid making comparisons between brothers and sisters, or peers, remembering that we are all different whether we have epilepsy or not. Being positive about achievements encourages a child to reach further. Behavioural Issues The child with epilepsy who may also have behavioural problems may be painted as the "black sheep" in the family. This may affect the way the entire family relates to the child and promote the difficult behaviour. It is really important for the family to turn around their attitude in this setting and emphasise the positives in the child's behaviour, which can often dramatically modify the behavioural problems seen in the child. Inclusion in decision-making There may be a variety of issues in day to day life that may be affected by a child having epilepsy. Situations that might require particular management are swimming, hiking, climbing and, for the older child, late nights. These can create some difficulties. Helping to resolve these issues is a great learning experience for the child. Living positively with epilepsy and not being controlled by it is very important. Over-protecting the child can be detrimental to their personal development and lead to low self-esteem. To always hear "you can't" is very restrictive, but rather "how can" is a much better approach. To be listened to builds esteem in the child and to have their ideas accepted, even though along the way they may have to make compromises, makes the child feel that they have ownership of the decision. Encourage your child to develop a good relationship with their doctor Just as parents like to be able to talk openly with the doctor, encourage the child to ask questions and talk about their epilepsy. As the child grows up they can start to take responsibility for the day to day management of the condition, for example remembering to take their medication. It is interesting to note that in the Chinese language the symbol for crisis is the identical symbol for opportunity. Take the opportunity with your child to have as happy, healthy and independent a life as possible. It is important to have FUN and enjoy each other's company. We are what we believe we are! Talking to children about epilepsy If you are a parent, carer or teacher, you may need at some time to explain epilepsy to a child. The child may have epilepsy or know someone else with the condition. Epilepsy can be frightening and confusing for a child. Talking about epilepsy can help children begin to cope, ask questions and reduce some of the myths and fantasies surrounding the condition. An explanation that they can understand will help alleviate their fears and encourage them to understand exactly what epilepsy is, why it occurs and how to manage it. Understanding epilepsy yourself Gaining a thorough understanding of epilepsy yourself will enable you to explain the condition clearly to children. If you, or someone in your family, is diagnosed with epilepsy, obtain a detailed explanation from the doctor so that you can pass this on to your children and other family members. This will help the whole family to come to terms with the epilepsy and be prepared in the event of a seizure. There is a wide range of resources available to parents, carers and teachers including brochures, videos and staff at state epilepsy associations. The individual child Children will respond differently to epilepsy, so be prepared for a variety of reactions and be flexible in your approach to explaining. Establish the child's understanding of epilepsy and then take it from there. Remember to make the information you give suitable for their age and level of ability. Try to demonstrate to children that you are quite willing to discuss epilepsy and answer their questions. It is ideal to explain to the child as soon as possible in case they begin to imagine the worst, but keep in mind that some children will be satisfied with a brief explanation while others will want more detail. Some children may require several explanations before they totally understand epilepsy. Young children sometimes act out their fears with a change in behaviour such as bed-wetting and could need some coaxing to confide in you. Involving the child If a child has epilepsy, encourage them to take responsibility for their medication and to explore epilepsy for themselves by using libraries and services and resources available from your local epilepsy association. This can help them come to terms with their epilepsy from an early age. If the child is coping with someone else's epilepsy, it may be helpful to suggest jobs for them to carry out when the person has a seizure. For example tasks such as removing hazardous objects, getting help from an adult and reassuring the person with epilepsy may allow the child to feel useful. Points to consider When you are about to explain epilepsy to a child, take into account such factors as when and where you will be able to talk to them, how much you intend to explain and whether it is private or a family discussion. These factors can influence the way the child reacts to the information. Using diagrams and models showing the brain and seizure activity can help. Many resources are tailored to meet the needs of specific audiences including children. You can ask the doctor or a counsellor to explain epilepsy too, or to be present while you explain it. Remember that a child with epilepsy may never have seen a seizure; give him or her a realistic and matter of fact description of what they look like during a seizure. It is also important to reassure children that it is very rare for a person to die or experience pain during a seizure. Infantile Spasms [West’s Syndrome] and Lennox-Gastaut Syndrome Infantile Spasms [West’s Syndrome] Infantile spasms are a special form of epilepsy that may occur during infancy. The spasms usually begin when the baby is between three and eight months of age. In approximately 50 per cent of cases, the cause of infantile spasms is not known; in the other 50 per cent, there are many different conditions affecting the brain, such as brain malformation, birth injury or meningitis, which can cause this type of epilepsy. Diagnosis The diagnosis of infantile spasms is difficult and requires careful observation of the child. Characteristic signs include a combination of the spasms, developmental delay and a characteristic disorganised EEG pattern called hypsarrhythmia. This EEG pattern is seen in about 70 to 80 per cent of children with this condition. The spasms Symptoms can vary from child to child, however there is usually a sudden spasm or bending [flexion] of the body either at the waist or neck. A baby who is not yet sitting up may be lying quite comfortably and will suddenly draw its legs up at the hips, throw its arms out and lift its head. It is not uncommon for the baby to cry out after a spasm and be rather irritable. Children who can sit may bend at the waist and their head can fall forward. Spasms usually occur in clusters; each one is brief, lasting only a few seconds. Seizures may occur more often when the child is drowsy, either just going off to sleep or having just woken. Prognosis This form of epilepsy is caused by a variety of conditions, each with different outlooks. When a child's development has been normal prior to the onset of the spasms, there is a better chance of: · controlling the seizures with medication; and · development and learning being normal or only mildly delayed. However, when infantile spasms are associated with abnormalities of the brain, it is difficult to completely control the seizures and intellectual disability is very likely to be present. In most babies the spasms will cease between the ages of two to four. Approximately half the children will continue to have other kinds of seizures when the infantile spasms have stopped. Treatment Infantile spasms often respond to Prednisolone or A.C.T.H. [cortisone-like medications] or Vigabatrin. To avoid long term use of these drugs, Nitrazepam [Mogadon] and Clonazepam [Rivotril]are often used in conjunction with the A.C.T.H., Prednisolone and Epilim. For further information on this topic contact your Epilepsy Australia affiliate. Lennox-Gastaut Syndrome Lennox-Gastaut Syndrome [LGS] is one of the more severe forms of epilepsy. It usually develops during preschool years and is characterised by several seizure types and developmental delay. Seizures are generally difficult to control due to their resistance to antiepileptic drugs. Often no specific cause is identifiable: however, some of the known causes include: · developmental malformations of the brain · genetic brain diseases, such as tuberous sclerosis, and inherited metabolic brain diseases · brain injury due to problems associated with pregnancy and birth including prematurity, asphyxia [lack of oxygen] and/or low birth weight · severe brain infections including encephalitis, meningitis, toxoplasmosis and rubella. In many instances, LGS is a sequel to infantile spasms – sudden spasms or bending of the body, either at the trunk or neck. These usually commence at between three and eight months, and may develop into the mixed seizure pattern, which characterises LGS, at two to three years. There are also a number of rare childhood diseases that may lead to LGS.   It is estimated that LGS occurs in between three to eleven per cent of childhood epilepsies with slightly more males than females affected. The average age of onset is three years. LGS is diagnosed by some or all of the following: · the presence of a mixed seizure pattern · some degree of developmental delay or intellectual disability. · a typical electroencephalogram [EEG] pattern of slow spike wave discharges may be present. An EEG is a graphic chart that displays electrical activity generated from the brain, recorded at the skin surface of the head, commonly referred to as a brain wave recording. Seizures Seizures are always of several types and a child may experience some or all of these. The most common seizure types associated with LGS are tonic, atonic and atypical absence seizures. Periods of frequent seizures may be interspersed with periods of relative freedom from seizures. The most common seizure types associated with LGS are: Behavioural disturbances These include poor social skills and attention seeking behaviour, and have at least four possible causes: · the underlying condition causing the epilepsy · the effects of medication · the electrical disturbance in the brain in uncontrolled epilepsy · difficulty in interpreting information and understanding the world as others do. Medication Antiepileptic drugs [AEDs] are usually the best treatment for seizures although complete seizure control is rarely achieved. LGS often requires frequent changes in dose and type of medication, with some medications losing their initial effectiveness. Unlike other childhood epilepsies, the simultaneous use of more than one type of medication is often necessary. The AEDs most commonly prescribed for LGS are listed in the table below. There are also a number of new AEDs currently being trialed in Australia and overseas. Surgery Rarely, corpus callosotomy can be considered for very severe drop attacks. Status epilepticus Status epilepticus ['status'] occurs in about 50 per cent of people with LGS and is the term used to describe prolonged seizures of 30 minutes or more, or the occurrence of repeated seizures without regaining consciousness between attacks. Status can occur with any type of seizure and is categorised as either convulsive or non-convulsive Status can last from hours to days or, in the case of non-convulsive status, even weeks or months. Factors that may lead to status include sudden withdrawal from medication, illness, fever and infections. Status in children with LGS is most often non-convulsive It is characterised by severe confusion, apathy or a 'flat' mood, stupor or, at worst, apparent dementia. Inconspicuous muscle spasms and greatly impaired balance and coordination are usually evident. Convulsive status may ultimately lead to brain damage and death unless stopped quickly-usually with the administration of rectal diazepam. Some parents and carers learn to administer rectal diazepam at home. This option would need to be discussed with your doctor. To date, little research has been conducted into the prognosis of children with LGS. It is clear, however, that prognosis varies from child to child. Generally, this syndrome is permanent. A few years after diagnosis, the epilepsy, which was initially so difficult to control, may become less of an issue but impaired intellectual functioning and behavioural problems frequently persist. Complete recovery, with normal development and freedom from seizures, is very unusual for the child with LGS. Practical suggestions to help carers support the child with LGS Consider using respite care schemes provided by local councils and other organisations. These schemes offer the services of a professional carer to visit your home to look after the child; or placement with another family or residential centre. Respite care can be on a regular or occasional basis. · Keep a diary that details the child's seizures, seizure triggers and any side effects of current medications. This can be useful when consulting with doctors and in identifying seizure patterns and medication responses. · Use an intercom in the child's bedroom to monitor any changes in their condition. · On outings, consider using a child-stroller for school age children going through a phase of frequent seizures. · Question your doctor about all aspects of the child's treatment, including medications and their side effects, to ensure that you are sufficiently informed to confidently coordinate the day-to-day management of the condition. · If you have any unanswered questions about medications, contact your local pharmacist. However, do not alter your child's medication schedule without consulting your doctor. · Consider a hand-held harness to help prevent falls and a helmet to protect the face and head. · Lower the temperature on the household's hot water unit or install a thermostat to prevent scalds and burns. · Buy a dosette box and tablet cutter from your local pharmacy to assist in preparing and administering medication. Diet The ketogenic diet has been clinically effective in reducing seizures. It is very high in fat, often unpalatable and must be followed exactly. The ketogenic diet elevates blood cholesterol levels markedly and is expensive to implement. It is not a long-term proposition. Some children benefit from this diet. Vagus nerve stimulation The vagus nerve stimulator is a device, similar in size to a heart pacemaker, which is implanted in the chest with a lead that passes up to the neck and is placed around the vagus nerve. This device stimulates the vagus nerve for about 30 seconds every 5 minutes and has been shown to improve seizure control in people with uncontrolled seizures. The device may take up to a year to show maximum benefit. This device requires an operation for insertion as well as for removal. The batteries require replacement approximately every 5 years entailing further surgery. Attention to seizure triggers It is recognised that the frequency of seizures may be associated with the child's level of alertness. The child who is overexcited for example, or lacks sufficient stimulation, may experience more seizures. A stimulating but stable environment can therefore be important in reducing the number of daily seizures. This may include a strict routine of regular meals, sleep and medication. Illness may also trigger seizures. For example, seizure activity may increase just before the onset of high body temperature and fever. Vomiting and diarrhoea can also effect the body's ability to absorb medication. Family support programs Most state epilepsy associations run family support programs that often involve daytime and evening meetings, and usually include expert speakers. The Epilepsy Foundation of Victoria coordinates a group called the Uncontrolled Epilepsy Parents Support Group (UEPSG) for parents and carers of children with LGS and other forms of uncontrolled epilepsy. If you are unable to attend UEPSG meetings or you reside outside Victoria, you can be included on their mailing list which comprises many Australian families, and others worldwide. It is recognised that the frequency of seizures may be associated with the child's level of alertness. The child who is overexcited for example, or lacks sufficient stimulation, may experience more seizures. A stimulating but stable environment can therefore be important in reducing the number of daily seizures. This may include a strict routine of regular meals, sleep and medication. Illness may also trigger seizures. For example, seizure activity may increase just before the onset of high body temperature and fever. Vomiting and diarrhoea can also effect the body's ability to absorb medication. Family support programs Most state epilepsy associations run family support programs that often involve daytime and evening meetings, and usually include expert speakers. The Epilepsy Foundation of Victoria coordinates a group called the Uncontrolled Epilepsy Parents Support Group (UEPSG) for parents and carers of children with LGS and other forms of uncontrolled epilepsy. If you are unable to attend UEPSG meetings or you reside outside Victoria, you can be included on their mailing list which comprises many Australian families, and others worldwide.