Epilepsy And Impact On The Children Development

EPILEPSY AND THE IMPACT ON CHILDREN DEVELOPMENT

MIKE HUDSON ANAK SANGU An Academic Writing Submitted In Partial Fulfillment of the Requirement for Bachelor Degree of Social Sciences (Social Work Studies)

FACULTY OF SOCIAL SCIENCES UNIVERSITI MALAYSIA SARAWAK 2008/2009

ACKNOWLEDGEMENT First and foremost, I would like to thank to Madam Gill Raja because has guide me to finish this study. She also put so much effort in order to help me to do my writing and she had empowered me until I can finish my Academic Writing. Beside that, I also would like to thank to my all friends that always giving support and advices for the whole semester. This is my first time to me to do this writing. Thus, I have a lot of difficulties in finishing my research. However, these difficulties had helped me to learn a lot of thing especially for the epilepsy especially on the children. I also to want dedicate my thanks to both of my parent because always give support to me to finish this study. Finally, I want to thank my friend who suffer from epilepsy since three years ago because gives me a lot of information regarding this study.

Mike Hudson Sangu

ABSTRACT Epilepsy is one of the medical attentions which it is the condition that related to the brain. It can be defined as repeated, unprovoked seizures. A seizure is caused by the discharge of the collection of brain cells. Although epilepsy is the medical condition, it has many non-medical effects on the people with epilepsy, family and community. The purpose of this study is to explore the impact of epilepsy to the children development. The impacts are can be seen in the social and psychological aspect. The study was done based on the experience of the teenagers with epilepsy. From the interview that was done, the epileptic person experience many effect from the epilepsy. The effect is on the psychological which it causes the depression and tension. In social, epilepsy has limited the social activity as well as it gives an impact to the relationship.

LIST OF TABLE Pages Table 1

List of Drug for Each Types of Seizures

27

Table 2

Effect of Different Types of AED

28

TABLE OF CONTENT

ACKNOWLEGDMENT ABSTRACT LIST OF TABLE

Pages i ii iii

INTRODUCTION Epilepsy: A Call for help Objective

1 5

HISTORY OF EPILEPSY

6

MYTH AND FACT ABOUT EPILEPSY

8

WHAT IS EPILEPSY?

10

TYPES OF SEIZURES

13

CAUSES OF EPILEPSY

17

EFFECT OF EPILEPSY a. Effect on Psychological b. Effect of Social Stigma On People with Epilepsy c. Effect on Education d. Effect on Employment e. Effect on Social Relationship f. Effect on Family

20 21 23 24 24 25

TREATMENT OF EPILEPSY: ANTIEPILECTIC DRUG (AED)

26

MANAGING EPILEPSY AS COPING MECHANISM AND TREATMENT OF EPILEPSY

29

A STORY OF TEENAGER WITH EPILEPSY Interview Background of the Respondent Epilepsy: A Sudden Condition The Causes of Epilepsy The Change in Life

31 31 31 32 33

THEME AND ISSUE ARISING a. Effect of Psychological b. Social Stigma c. Social Activity d. Effect of Medicine

34 35 36 37

e. Relationship

38

CURRENT SITUATION

38

DISCUSSION a. Future of Children with Epilepsy b. Implication on Social Work Practice

40 41

RECOMMENDATION

43

CONCLUSIONS

45

REFERENCES

47

INTRODUCTION

Epilepsy: A Call for help “The phone rings, the time is 10.45 a.m. on 7th January 1985. The voice of the caller is tense “Your daughter had a fall and is unconscious”. On getting this message my mind went blank. Just 3 hours ago I had given her breakfast and sent her to school, hale and hearty as she always is. Immediately I drove from my office to her school in Taman Sri Keramat. My daughter Safinaz was then 9 years old and in Standard 3. There she lay unconscious on a wooden bench outside the Teacher’s room. Together with some help we got her into the car and drove her to Tawakal Hospital. She was immediately seen by the Consultant Neuro Physician, who after examining her and some investigations such as EEG and CT scan, put her on Tab XXX 0.25mg. We were shocked to know that she had epilepsy, as she was such a healthy baby before. After 5 days in the hospital, she was discharged. Her seizures were very unpredictable and frequent. She could get as many as 10-12 seizure attacks a day and this will occur almost every week. Whenever the phone at home rings while Safinaz is away my heart misses a beat, for fear it is about Safinaz having a seizure attack and injuring herself. This was the beginning of our nightmare. We were very upset and unsure of how to manage her. This was affecting my work in the office”1

Syafinaz case in Malaysia is one of the examples of epilepsy case that have been report every year. It can happened every where and can affect people of any age, sex, race, social class or nationality. “Epilepsy is a condition in which more than one nonfebrile seizure of any type has occurred at any time”. (Hopkins, 1987a:3). In other words, epilepsy are condition which one person experience repeat seizures that can last from a few second to several minutes which it take on different form. Further to this, different types of seizures come different area of the brain. There are two main groups of seizures, generalised seizures and partial seizures and each of this group has several

1

These stories are based on the personal account by a Malaysian mother of a child with epilepsy which taken from the http://www.epilepsy.org.my/?cat=articles&mod=read&article=55.

types. (Lowenstein, 2006). People with epilepsy tend to experience the same sort each time. Although there are many different types of epilepsy, people tend to make their own assumption or perception about the epilepsy. “Falling to the ground, the bubble at the mouth and the flailing of the limbs are the thing that comes to most people’s minds when the word epilepsy is mentioned”. (Walker & Shorvon, 1999:7). In our society, people tend to label people with epilepsy with the different term. The term that people often label people with epilepsy is the term of “sawan babi” in Malay word which this means “mad pig”. Further to this, words like “sawan babi” or “sakit gila babi” are carelessly bandied about, giving the disease negative connotations. Yet, different cultures have their own names for epilepsy such as “kaka elupa” in Tamil words which means “pulling crow” and “ding-yang” in Chinese culture which means “goat-insanity” or “mad goat”. (www.epilepsy.org.my). On the other hand, some people might think that people with epilepsy are mad or crazy because they believe that people with epilepsy are being possessed by the demon. Apart from that issue, there are many factors that can contribute to the epileptic seizures. These factors are more not to be a main aspect in this writing but yet it is important for people to know the factor that can contribute to the epilepsy. Further to this, epilepsy can be caused by injury to the brain, due to trauma such as a car accident or a head injury. In children, commonly epilepsy can be cause by high fever caused by an infection, can be caused by inherited disorders or due to problems during birth. (www.livebeyondepilpesy.com). However, in most cases, no cause is ever found.

Yet, epilepsy is universal and the most common serious neurological disorder. At least one to two and half million people will experience epilepsy at some time in their lives. (Walker & Shorvon, 1999). The numbers of people who suffer from epilepsy are not very accurate figure because some people with epilepsy might hide their epileptic seizures. Further to this, most author and researcher want to determine the number of epilepsy that occurs in the different age. According to Lowenstein (2006) 5% to 10% of the world population will have at least one epileptic seizure which the highest incidence occurring in early childhood and late adulthood. Lennox (1960) has estimated that 75% of cases of epilepsy have their onset before 20 years of age. In addition, Sunder (1997) stated that epilepsy affects 0.5% to 1% of children up to age 16 years old whereas children with developmental disabilities, the incidence of epilepsy increase by 30% to 50%. Hauser et al (1983) stated the incidence of epilepsy is greatest in the first year of life and remain high up to 4 years of age. Yet, the high incidence of seizures in early childhood means that most of those developing epilepsy occur before the age of 20 years. (Hopkins, 1987a) Based on the previous paragraph, it can be said that, epilepsy is mostly occurring during the childhood and late adolescent. However, we need not to take too much time trying to find out the different number and ages which epilepsy can occur but rather to put more attention on the effects of epilepsy itself. This is the main aspect that needs to be looked by the society. The effects of epilepsy on the development of the children are more on the social aspect compare to the medical aspect. In spite of the large numbers of people who have epilepsy, people with epilepsy are faced medical effect as well as social effect. Effect from the medical model that can

be seen is brain damage. Even though, epilepsy is more to the medical model, but the social effect of epilepsy itself are also rampant. What is means is people with epilepsy especially children have to cope with its psychological and social impact which is it can be look more on the social model. Yet, the effects of epilepsy itself on the children as well were rarely discussed. Further to this, many people as well as children hiding their epilepsy from friend, employers and sometimes even from members of their own family because their fear of possible stigmatisation or prejudice from this people. People who suffer from epilepsy especially children might be having a low self-esteem, low self-confidence and lack of knowledge about epileptic seizures that they experience. Yet, it can be said that these conditions indirectly affect the development of the children itself and it cause the difficulty in their daily life. Family also experience effect from the epilepsy as well. Epilepsy in childhood, just as in adults, is a family problem which will have an impact on and modify the lives of the entire family member. (Hoare, 1984). Family might be experience some aspect of social as well as economic effect. When the children develops epileptic seizure, family also need to give more attention on this, thus can increase worries and fears among them. Family also still faces prejudice from others which is often through lack of knowledge about what having epilepsy really means. Yet, epilepsy can affect the family dynamic as well. The family is affected by child‟s condition and responds to the challenges. (Weinstein, 2007)

Objective The main objective of this study is to explore the impact of the epilepsy on the child development. Here, the focus of the impact on the children development is in the psychological and the social aspect itself. There are many impact experiences by the children with epilepsy. This will be discussing in the other part of this essay. Beside that, the objectives of this study are to study the types of epilepsy and the causes of epilepsy. Yet, the types and cause of epilepsy itself are more in the medical model explanation. On the other hand, these studies also want to explore want to identify the way to help children with the epilepsy.

HISTORY OF EPILEPSY Epilepsy itself has its own history. Yet, people have known about epilepsy for thousands of years but have not understood it until recently. The ancient Babylonians wrote about the symptoms and causes of epilepsy 3000 years ago. They thought that seizures were caused by demons attacking the person. (Walker & Shorvon, 1999) Different spirits were thought to cause the different kinds of seizure. The Greeks believed that those with seizures must have offended the gods. In 400 B.C, the Greek physician Hippocrates was the first person to disprove the theory that epilepsy, then called the 'sacred disease', was caused by demons or gods. (Chadwick & Mann, 1950 in O‟Donohoe, 1994). He recommended physical treatments and stated that if

the

disease

became

worse

and

cannot

be

cure,

(http://www.epilepsy.org.my/?cat=about&mod=read&article=4).

it

can cause Further

to

death. this,

Hippocrates has introduced his own cure on epilepsy. His cure for epilepsy was medicine and diet based on his own unscientific theories of the balance between hot and cold. (http://library.thinkquest.org/J001619/history.html). But, his recommendations are not accepted by the people because in 1494 a wave of witch-hunting led to the death of more than 200,000 women which during this time seizures were believed to be one of the characteristics of a witch. Yet, for the next 2,000 years, people with epilepsy were viewed with fear, suspicion and misunderstanding and were facing social stigma from the society. People with epilepsy were treated as outcasts and punished. “To the ancient, the epileptic was an object of horror and disgust and throughout almost all of history those afflicted have

been viewed with anxiety and fear. (O‟Donohoe, 1994:2). Some, however, succeeded and became famous the world over. Among these people were Socrates, Napoleon, Julius Caesar, Czar Peter the Great of Russia, Pope Pius IX, the writer Fedor Dostoevski, the poet Lord Byron and even several Olympic athletes. (O‟Donohoe, 1994) The beginning to recognize epilepsy in the medical condition is started in the earlier eighteenth century and in the nineteenth century. During this time, people have improved knowledge and understanding about the epilepsy due to the advances neurology and technology. In addition, as neurology emerged as a new discipline, the concept of epilepsy as a brain disorder became more widely accepted especially in the United Stated and Europe. Prior to this, the believed that epilepsy was cause by demon also faded. People more look the epilepsy as a medical condition rather look that people with epilepsy has been posses by the demon. Further to this, the anti-epileptic drug also been introduced in 1857 and become the first medication for people with epilepsy. “It was not the until the end of the 19th century that the first effective drug, potassium bromide was introduced and from that time, drug treatment has allowed the majority of people with epilepsy to lead-normal and seizures-free lives” (Walker & Shorvon, 1999:8) But, there are some people who still think that seizures are the result of a charm or curse placed on them. However, most people who do not know about epilepsy tend to equate it the mental health problem. But, nevertheless, this is not true, as many people with epilepsy have normal life and can cope with their seizures. Epilepsy does not discriminate. It affects both men and women, of all ages, races and socioeconomic levels.

MYTH AND FACT ABOUT EPILEPSY When talking about epilepsy, there are many perceptions about the epilepsy itself. In addition, these perceptions come out whether in positive or negative thought. Yet, this might be influence by the history of epilepsy itself or by people who are experience the epilepsy. Thus far, in the modern society, there are some people might have a negative perception about the people with epilepsy. Even though, we are now going through into the globalization world which involves the new advances technology, people tend to make a wrong or negative perception about the epilepsy itself. Yet, in this discussion, I try to come out some of the myth and fact about the epilepsy. Below are the myth and fact that I have figure it out.

1. Myth : Epilepsy is a curse Fact

: Epilepsy has nothing to do with curses, possession, or other supernatural processes. Yet, like asthma, diabetes, and high blood pressure, epilepsy is a medical condition which involves the brain activity.

2. Myth : Epilepsy is contagious - you can catch it Fact

: Epilepsy is a disease in which there are recurrent seizures. However it is not contagious and you cannot acquire it by contact with people with epilepsy.

3. Myth : Epilepsy is inherited Fact

: Most cases of epilepsy are not inherited, although some types are genetically transmitted (passed on through the family).

4. Myth : People with epilepsy are mentally ill or retarded Fact

: Although epilepsy is related to the brain, it does not always indicate that a person is mentally ill or mentally retarded. However it can be associated with learning problems.

5. Myth : People with epilepsy are violent or crazy Fact

: Many features of seizures and their immediate after effects can be easily misunderstood as "crazy" or "violent" behavior. Depending on which part of the brain is involved, there will be different physical symptoms. For example, a seizure victim may experience sudden and dramatic body jerks, incomprehensible speech or become restless. These symptoms may be misconstrued as being "crazy" by people.

6. Myth : People with epilepsy are disabled and cannot work Fact

: People with epilepsy are found in all walks of life and at all levels of work. They have the same range of abilities as the rest of us. Some jobs may not be suitable for people with uncontrolled epilepsy. However, many people with epilepsy are successful in challenging careers.

7. Myth : People with epilepsy are physically limited in what they can do Fact

: In most cases, epilepsy is not a barrier to physical achievement. Some individuals who are more severely affected may be limited in what they can do. People with epilepsy are advised not to participate in activities such as swimming which may cause harm to themselves or other people which it is afraid that a seizure might occur while carrying out such activity. (Source: www.epilepsy.org.my)

Yet, the myth that discuss above can indirectly cause the negative impact to the people with epilepsy. Stigmatisation on the people with epilepsy is the main impact that can be seen because of the myth itself. Beside that it also can prevent people to help people with epilepsy because they scared that they will be hurt by epileptic person.

However, it is true that epilepsy change people life, but in most cases, it's a condition that people can live with. The key to living with epilepsy is knowledge, about what to do and what not to do.

WHAT IS EPILEPSY? So in the earlier discussion, I have discussed about the history of epilepsy. I also come out with the myth and fact about the epilepsy which can give indirectly impact to the people with epilepsy. Yet, in this discussion I will focus on the epilepsy itself. So, what is epilepsy? It is one of the chronic diseases? It is can be fatal? Even, I also don‟t know what epilepsy stands for when I first heard the word of “epilepsy”. When I first heard about this word, I thought that it is a disease which occur when somebody become like posses by the demon spirit. But, it is completely wrong. Yet, epilepsy is one of the medical conditions. According to Walker & Shorvon, (1999:18), “epilepsy is defined as condition in which the person is prone to recurrent epileptic seizures, so diagnosis is a measure of the probability of having epileptic seizures”. In other word, epilepsy is a tendency to have recurrent seizures that originate in the brain. The brain is made up of billions of cells which process information from our senses, thoughts, emotions, memories and actions. A seizure is the result of a temporary disturbance of the brain's electrical activity. Epilepsy is characterized by recurrent seizures which are sudden and brief, whose nature and intensity varies from person to person.

(www.pharmacy.gov.my/self_care_guide/Nerous%20System/Epilepsy.PDF).

Yet, according to Shinnar (2000), approximately one-third to one-half of the children and adult with seizures will initially seek the medical attention following the single seizures.

They might come to medical attention because they scared that they will have another seizure. In addition, epilepsy itself is more to the medical condition which involves the problem with person brain. It is a fact that brain is one of the most important parts of the human body because it guides us to function and to think. Yet, many author has define epilepsy as a medical definition. Further to this, Browne & Feldman (1983) has defined epilepsy as a common neurological disorder that consists of a wide variety of symptoms arising from abnormal, excessive or synchronous neuronal activity in the brain. It is include the activity of the brain which there is the disturbance of the electricity activity in the brain. Another author like Lowenstein (2006:187) has described epilepsy “as a condition in which a person has recurrent seizures due to the chronic, underlying process”. But, it is not necessarily diagnosed person have an epilepsy when he or she has single seizures or recurrent seizures. This is argued by Walker & Shorvon (1999:18) which they stated: “If you have one seizure brought on by excessive alcohol and then you become teetotal, the changes of having another seizure are very small and you would not be diagnosed as having epilepsy. If, on the other hand, you had a number of seizures because damaged part of your brain, the changes of having another seizures are very high and you would be diagnosed as having epilepsy” Further to this, it is unclear for the doctor to diagnosed one person has epilepsy or not. Diagnosis of epilepsy is usually made after two or more unprovoked seizures. (Lofgren, 2007). Most of the doctor solely make a diagnose person as having an epilepsy if they have two seizures within a year because the chances of having a third seizures are

probably over 80%. (Walker & Shorvon, 1999). They added that doctor has difficulty to diagnose a person have epilepsy when he or she only have one seizures. In this sense, doctor usually assesses what chances of having another seizure are, aided and abetted by various investigations and by knowledge of the type of seizures and the probable cause. (Walker & Shorvon, 1999). Yet, according to Appleton et al (1992:25), “the diagnose of epilepsy is clinical and must be based on a detailed description of events experienced by the patient before, during and after a seizures and more importantly on an adequate eye-witness account” Taking into this account, the definition of epilepsy itself are more into the medical model. The definition of epilepsy come out in different fact and it can be said that the epilepsy itself are more depend on how many seizures that the person have within a year. Yet, in short epilepsy is a condition which causes someone to have repeated spontaneous epileptic fits or seizures. Seizures result from a distraction of brain function which may alter behaviour, consciousness, movement, perception or sensation. Based on the above discussion, there is no one single evidence that can recognize the person has epilepsy or no. This is because most people with epilepsy eventually stop having seizures and thus they cannot been recognizing as having epilepsy.

Most

important here is epilepsy is a symptom and not a disease. It is more called as symptom because it experienced by people.

TYPES OF SEIZURES In the earlier discussion, epilepsy is caused by the abnormal chemical activity in the brain and it affecting how the brains work. The result of this abnormal activity in the brain is seizures or fit. A seizures may last from a few second to several minutes and takes different form. Yet, people with epilepsy tend to experiences different types of seizures for each time. Almost all seizures are sudden, short-lived and self-limiting. (Walker & Shorvon, 1999). The number of seizures can vary from less than one a year to several per day. Seizures can happen at any time Further to this, there are different types of seizures which commonly there are two main groups which is generalised and partial or focal seizures. (Lowenstein, 2006). In addition, these two types of seizures are depends on the part of brain involves. Our brains are responsible for most of our bodily functions, so what someone experiences during a seizure will depend on the part of the brain affected and how widely and rapidly it spreads. In addition, these two types of seizures are can described the condition of the person with epilepsy and it can be recognized by the fit or convulsion that experiences by particular one person for each time. According to the Lowenstein (2006), a generalised seizure involves diffuse regions of the brain simultaneously. In other word, a generalised seizure involves the both side of the brain at once. Person who are experience this will do not know when the seizures will come. Yet, in short, it will come without warning and the consciousness is lost immediately. Further to this, generalised seizures can be divided into several groups which are tonic-clonic seizures, tonic seizures, atonic seizures, myoclonic seizures and absence

seizures. (Appleton et al, 1992). These types of generalised seizures have it own explanation which can be described by the condition or situation during the seizures. A tonic-clonic seizure also been known as grand mal seizures which is the seizures make body stiffen and the person will fall down. “Tonic-clonic seizures are the main seizures types in 10% of all people with epilepsy” (Lowenstein, 2006:190). In addition, during this seizures, the person may bite his or her tongue or with himself. These seizures usually last for few minutes and after that the person is often confused and may not know where he or she is. They will also often sleep. (Walker & Shorvon, 1999). Meanwhile, the tonic seizures are the condition which the muscles stiffen and cause a sudden fall without jerking. It is usually sudden loss of consciousness and contraction of muscles leading either to slow forward flexion or hypertension. (Dreifuss, 1987). In addition to this, the people are not shaking at all and he or she just falls like a board. The atonic seizures cause a sudden loss of muscle strength and consciousness resulting in the person falling to the floor. They recover immediately, however the seriousness comes from the risk of injury from hitting their head or falling to the floor. “This can be extremely dangerous since there is substantial risk of direct head injury with the fall”. (Lowenstein, 2006:190). Another seizures which is a myoclonic seizures which cause a sudden jerk of the body or limbs (arms or legs), which may cause the person to drop the things they have in the hands. People with these seizures may occur mainly around the time of going to sleep or awakening from sleep. (Dreifuss, 1987). The last one of generalised seizures is absence seizures. These type of seizures also known as petit mal attack. (Walker & Shorvon, 1999). According to Dreifuss (1987:94), “the hallmark

of the absence attack is a sudden onset, interruption of ongoing activities, a blank stare and possibly a brief upward rotation of the eyes”. Yet, the above discussions are on the generalised seizures which it comes in different situation when it attacks somebody. As I mentioned before, the other types of seizures is partial or focal seizures. According to Lowenstein (2006), partial or focal seizures occur within discrete regions of the brain. In other words, the partial seizures are only affect one part or side of the brain and around 60% of all epileptics suffer from them. (http://www.essortment.com/all/causesofepilep_rloq.htm). In partial seizures, it can be divided into three groups which are simple partial seizures, complex partial seizures and secondary generalised seizures. (Dreifuss, 1987) A simple partial seizure is a condition which confined to one small part of the brain, during which there is no loss of consciousness. These seizures may make person feel frightened, odd, vivid memory flashbacks and feeling having an identical situation before. (Walker & Shorvon, 1999). In addition, some person also feels some unpleasant intense smell or tastes such as burning rubber or kerosene. They may also hear a sound which includes crude or high complex sound. (Lowenstein, 2006). Yet, there may be uncontrolled jerking of one arm or leg, unusual eye movement which it may turn to one side. Some person may also experience flashing light in one half of the vision. Some people may have a warning, called an “aura” (a simple partial seizure) just before losing consciousness or becoming less aware of their surroundings (complex partial seizure). An aura usually last just a few seconds but can be longer. Meanwhile, the complex partial seizures is the next stage up from the simple partial seizures because the word “complex”. In this, the seizures involve a larger part of

the brain. “Complex partial seizures are characterized by focal seizures activity accompanied by a transient impairment of the patient’s ability to maintain normal contact with the environment” (Lowenstein, 2006:188). In other words, person who experienced this type of seizures becomes unconscious about the surrounding or action. They might fumble with their own hand, chew, swallow, run, talk rapidly, even dance or go through a range of action. In addition, they might be confused due to the seizures and the transaction to full recovery of consciousness may range from second up to an hour. After the occasion, he or she is completely do not know what he or she has done. (Walker & Shorvon, 1999). The third type of partial seizure is secondary generalized seizures. These seizures are result from the spread of the seizures throughout both of the brain. According to Walker & Shorvon (1999), the spread can be slow as the person will have a warning that they will have seizures but the spread itself also can become faster and the person will loses his or her consciousness. Dreifuss (1987) added that this spread are depend on the factor such as age, previous seizures and the area of brain originating the seizures. Yet, the symptom of these secondary generalised seizures are quiet similar with the tonicclonic seizures which the person might bite his or her tongue, suddenly fall and his or her arm and leg jerking. Thus far, it is important for people with epilepsy as well society to know the type of the epilepsy. There are several types of epilepsy which it consist two main groups that is generalised seizures and partial seizures. It is important for them to know the types of epilepsy because it can be a guideline for them on how to handle and manage the seizures.

CAUSES OF EPILEPSY

There are many causes of epilepsy. It can be said that the main causes of epilepsy is because the abnormal activity in the brain which can cause the seizures. Yet, because epilepsy has so many causes and can be linked to a number of other conditions, it is sometimes very difficult to determine the cause of a particular case. In other word, in most cases, no cause is ever found. “For many suffers, (about 70%), no known cause is ever found” (Walker & Shorvon, 1999:30).

But, what are the factors that can contribute to the causes of the epilepsy itself? These factors can be divided into several conditions which are including the brain chemistry, hereditary causes, head injury, prenatal injury and environmental causes. All this condition associated with epilepsy.

It can be said that the causes of epilepsy is because the brain chemistry itself. In other word, epilepsy may develop because of an imbalance in those chemicals in the brain that help the nerve cells in the brain transmit

electrical impulses.

(http://www.ehealthmd.com/library/epilepsy/EPI_causes.html). According to Walker & Shorvon (1999), this electrical impulses are like a telephone line which when the signal reach the end of axon2. Then, it will cause the release of chemical and then these chemicals communicate with the neuron3. This will cause an “electrical storm” as seen as seizures.

2

Axon is one of the part in the brain is like an arm and branches which function to carrier electrical signal in the brain. (Walker & Shorvon, 1999) 3

Neuron is the part of brain which consist of million of cells. (Walker & Shorvon, 1999)

Another condition that can cause the epilepsy is the hereditary causes. But, it is a small number of cases that causes of epilepsy are from the hereditary causes. “Except in a few genetically inherited conditions that can cause epilepsy, the risk of passing the epilepsy on to your offspring are very small” (Walker & Shorvon, 1999:30).Yet, Bundey (1987) in her study has make a conclusion that a patient who convulse after stroke are more likely to have a family history of seizures than those who do not. In addition, many types of epilepsy tend to run in families, and some have been traced to an abnormality in a specific gene. Beside that, the head injury also can cause the epilepsy. Head injury that cause by an accident can cause the seizures. If the head injury is severe, the seizures may not begin until years later. If the injury is mild, the risk is slight. Yet, Schachter (2006) has stated that severe head injury is the most common known cause in young adults and in middle age, strokes, tumors, and injuries are more frequent. Walker & Shorvon (1999) added that the epilepsy can present many years after the damaged has occurred. For example, it is uncommon for people who have sustained head injury in childhood to present with epilepsy in their adulthood. In addition, the study that done by Skandsen et all (2008) on 135 patient who are have head injury in Norway has conclude that first episode of seizures was eight months and 83% of the individuals with posttraumatic epilepsy experienced their first seizure before 24 months post injury.

In the prenatal injuries, it more common happens during the birth of the infancy. In a fetus, the developing brain is susceptible to prenatal injuries that may occur if the pregnant mother has an infection, doesn't eat properly, smokes or abuses drugs or alcohol. (http://www.ehealthmd.com/library/epilepsy/EPI_causes.html). Yet, according to

Hopkins (1987b) this condition will cause cerebral palsy which he stated that epilepsy in association with birth injury may arise on a basis intra-cerebral or infraction. Kodrjavcev et all (1985) has indicated that epilepsy was present in 52% of patient with severe or very severe palsy but only 23% of those with mild or moderate palsy.

Another cause is by the environment itself. In this, the cause of epilepsy can be associated with the use of alcohol and drug, lack of sleep, stress, or hormonal changes and also withdrawal from certain antidepressant and anti-anxiety drugs. Seizures which associated with alcohol may occur during the period of withdrawal of alcohol. (Hopkins, 1987b). Yet, over workload, a family row, divorce and other personal factor can increase the emotional stress which this indirectly will cause epilepsy. The study about stress as a risk factor for seizures has done by Temkin & Davis (1984) which they indicates that high stress level and stressful event were associated with more frequent seizures.

EFFECT OF EPILEPSY

Even though, the epilepsy is the medical condition but the impact of epilepsy are more to the social effect. In other words, epilepsy has many non-medical effects on the people with epilepsy itself. The effect that always face by the people with epilepsy is on the educational, employment, social relationship as well as the impact on the psychosocial. In short, people with epilepsy need to cope with its social consequences and psychological.

a. Effect on psychological

Children with epilepsy often been associated with the seizures that attack them which it can affect their development. This is because epilepsy is associated with the brain function which it indirectly can give an impact to that person itself. In other word, the epilepsy affects the mental development of that particular person. Further to this, the they will question “Who am I?, which this can be traumatic for them.

Yet, according to Mitchell & Flourie (1999), children and adolescent with epilepsy may not function as well as their peer because of their condition that limited their own behaviour. In addition, epilepsy may affect the self-image of the child or adolescent which can result in anxiety, lack of confidence, low self-esteem, even grief and depression. They also may withdraw from the social activity and situation. Kenner & Shafer (2006) also added that people with seizures often have a cognitive problem such as difficulty paying attention and slow thinking. In addition, Hill (2007:10) has argue that “grief at the realisation of being disabled goes through stages of shock, anxiety, bargaining and denial, mourning and depression, internalised anger, acknowledgement and finally acceptance and adjustment”. Beside that, epilepsy also can lead to anxiety behaviour because they sometime does not no when the seizures come. This can lead them to feel lack of control and helplessness. Yet, anxiety combined with guilt will become depression.

Children with epilepsy know that they are different from others. They will grow many kind of feeling such as depression, tension, guilty and anxiety because of the epilepsy. This may affect the performance of their study and also affect the social situation.

b. Effect of Social Stigma on People with Epilepsy People cannot run from facing stigma from society when there is something negative happened. In addition, stigma carries all negative connotations about a person. It is a way of how people treat an individual, groups, or community based on discrimination, prejudice, and biased. According to the Mason, (2001: 18), “stigma is not isolated sociological concept but one that is more closely wrapped up with many other aspect of the human condition, leading to prejudice and marginalization”

Yet, the effect that most children with epilepsy face is on the social stigma. The stigma that faced by the children with epilepsy can make them low self-esteem and selfconfidence. “Regardless of whether or not a child’s seizures are well controlled or uncontrolled, or are accompanied by mental disabilities, the social stigmas, prejudice and misconceptions which surround epilepsy may sidetrack him or her socially and emotionally” (Mitchell & Flourie, 1999:71). Further to this, children with epilepsy facing social stigma because for certain people the seizures itself are frightening and often misunderstood.

These social stigmas that face by children with epilepsy also can make them become powerlessness and they also keep away or isolated themselves from the society. In addition, children with epilepsy also experience discrimination because of the social stigma. They might be discriminate from the educational and employment. “There are few occupation that are barred by statutory provision for people with epilepsy…air craft pilot, ambulance driver, taxi driver, train driver, merchant seaman and anyone working

in the armed services, fired brigade or police” (Walker & Shorvon, 1999:68). This form of banned might be called as “legitimate” discrimination. (Scambler, 1987)

Yet, in Malaysia the discrimination also face by the people with epilepsy. This can be based on the story of a mother with a two children who are with epilepsy since she stills a baby. Because of her epilepsy, Azlina Zainal Abidin, 30, been isolated by society and even worse she also face pressure from her neighbourhood. 4

c. Effect on Education Epilepsy also can give an impact in term of educational. Generally, education is one of the important aspects in people life. Educations itself are important for children with epilepsy because everybody has a right to have a better education. But, children with epilepsy experience difficulties in their education. According to Fastenau et al (2008), in their study has conclude that children with epilepsy are at the greater risk for academic difficulties compared to healthy children and those are with chronic illness. They also added that children with epilepsy are less successful than their peers thus this indirectly can cause the poor achievement among them. Yet, Hills (2007) has stated that a high prevalence is found in children with epilepsy in learning disabilities and memory problem. Further to this, after a seizure, some children are unable to remember anything that happened in previous day or

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These stories are taken from the Berita Harian news with the heading “Anggapan gila punca pesakit sawan disishkan”. This story also can be access at the http://www.bharian.com.my/Current_News/BH/Sunday/Dimensi/20080316124059/Article/

afterwards. These problems are causes by the epilepsy itself and antiepileptic drug which can impair a child‟s ability to learn. (Walker & Shorvon, 1999) In short, children with epilepsy may have difficulty with school work. They may appear drowsy, lack application and concentration, or have memory problems. There may be specific learning difficulties associated with reading or arithmetic in school work. Thus, there is needs more attention from the teacher, school social work and parent to address the problem that face by children with epilepsy in school. By working together, they can help the child achieve success in school life. In addition, it can help to empower people especially can perform well in their study and can increase their performance. d. Effect on Employment

Epilepsy also can affect the employment. According to Hills (2007:10), “unemployment is higher among people with epilepsy, by up to 50% in developed countries if seizures are not fully controlled and up to 100% in developing countries”. These also argue by Scambler (1987) which stated that unemployment rate for people with epilepsy are higher in both Europe and United States. This high unemployment rates might be result from the employer prejudice and stigma. They also lack of information about the epilepsy itself which they might think that people with epilepsy must be avoided to work with machinery or believed that people with epilepsy cannot drive. Beside that, inadequate work training or work experience among people with epilepsy might be the causes of high unemployment because they might unable to perform well during job training. Co-workers can also be part of the problem. They may not understand what epilepsy is and if they don't know

what to do if they see someone having a seizure, they'll be uncomfortable when people with epilepsy around.

e. Effect on Social Relationship

Yet, even though the effects on social relationship are not the focus of this study, but there are effect that experience by the children with epilepsy regarding their relationship with others. Children with epilepsy may isolate themselves from others due to their condition. They isolated themselves because they fear of embarrassment by their seizure which causing reluctant to engage in social interaction with others. (Hills, 2007)

Over-protection by parent also can cause the social isolation among the children with epilepsy. These is because children with epilepsy are restricted to do some activity such as swimming where as it need to supervision from other when to do such activities. This indirectly can result the poor social relationship between the people with epilepsy and society.

f. Effect on Family

Despite the epilepsy affect the people with epilepsy itself, the epilepsy also can give an impact to the family. This is because epilepsy itself enters the family system. The family indirectly affected by the child‟s condition and respond to the challenges. These challenges tend to stress family. (Weinstein, 2007) When child diagnose has epilepsy, parents need to put more attention to their child by providing more need to the children. Parent also worried about how seizures would affect their children ability to learn and how family members can adjust to their

children condition. These worried increase the tension among the parent as their need to dealing with their other roles such as a mother, wife or husband. In addition, it also can cause the poor relationship between the child with epilepsy and siblings because parents have to put much time to the children with epilepsy. (Hills, 2007) TREATMENT OF EPILEPSY: ANTIEPILEPSTIC DRUG (AED)

In the earlier discussion, it is argue that epilepsy is a medical condition which needs more attention from the medical treatment. Yet, medical treatment means that people with epilepsy need to take some drug therapy which Antiepileptic drug (AED) in order to control their seizures. Yet, taking AED is the main important treatment for people with epilepsy because by taking AED it can control their seizures. In addition, most of the people with epilepsy have a problem to control their seizures. (O‟Donohoe, 1994) The uses of AED are beginning with the discovery of the effectiveness of potassium bromide in 1857. (O‟Donohoe, 1994). This uses of potassium bromide was founded by Sir Charles Locock, an obstetrician, who are interest in epilepsy because of mistaken idea that some women with epilepsy came from their wombs. (Walker & Shorvon, 1999). Then, in 1912, the phenobarbitone was introduced as an AED followed by phenytoin in 1938. Yet, there are many types of AED which have different function on the different types of seizures. “The choice of antiepileptic drug (AED) is based on the seizure type, the epilepsy syndrome and individual factor such as age, gender, other medical conditions and which potential side effects are more acceptable by family” (Shinnar,

1999:64). Here, it is important to take account of this matter because AED have it own dosage for every type of seizures. Further to this, most AED work in different types of epilepsy. In other word, what may be effective drug in one person may not effective in another. This is because some epileptic drug only works in particular forms of epilepsy such as ethosuximide for absence epilepsy and in contrast some AED may make some epilepsy worse such as carbamazepine for myoclonic seizures. (Walker & Shorvon, 1999).

Table 1: List of Drug for Each Type of Seizures Seizures Type

First Drug

Second Drug

Partial Seizures 1. Simple Partial 2. Complex Partial 3. Secondary Generalised

Carbamazephine Phenytoin Valproate

Acetazolamide Clobazam Gabapentin Lamotrigine Phenobarbitone

Generalised Seizures 1. Absences

Ethosuximide Valproate

Acetazolamide Clonazepam Lamotrigine

2. Atonic / Tonic Valproate

3. Tonic-clonic / Clonic

Carbamazepine Phenytoin Valproate

Acetazolamide Lamotrigine Clonazepam Clobazam Gabapentin Acetazolamide Lamotrigine Topiramate

4. Myoclonic

Clonazepam Valproate

Acetazolamide Phenobarbitone Piracetam

Source: (Walker & Shorvon, 1999:40) Any type of medication, not just antiepileptic drugs (AED), can have side effects. These side effects can range from mild to severe. Yet, side effect of AED can be a short term effect and long term effect. In short time effect, people may experience some effect such as sleepiness and fatigue, dizzy, irritability and allergic reaction or skin rash. In long term effect, they may have poor memory and concentration, slow speech, weight gain or loss and hair lost or thinning.

Table 2: Effect of Different Types of AED AED Carbamazepine Clonazepam

Side Effect Drowsiness, dizziness, ataxia, diplopia and Rashes Drowsiness, hypotonia, salivary and Bronchial hypersecretion

Lamotrigine

Dizziness, somnolence and rash

Phenobarbitone

Behavioural disturbance, drowsiness, Ataxia and rash

Phenytoin

Ataxia, diplopia, dizziness, hirsutism, Gum hypertrophy, sedation

Sodium valproate

Nausea, epigastric pain, tremor, alopecia Weight gain, thrombocytopaenia

Topiramate

Weight loss, somnolence, mental slowing and word-finding difficulty

Source: (www.mpaeds.org.my/PaediatricProtocols/35.%20Epilepsy.pdf)

MANAGING EPILEPSY AS COPING MECHANISM AND TREATMENT OF EPILEPSY

Apart from taking antiepileptic-drug for control the seizures itself, it is also important for children with epilepsy have a knowledge on how to managing their seizures. Yet, in fact, AED is the main treatment for epileptic children but the way to managing the seizures is one the crucial aspect in order to control the seizures. Managing the epilepsy is not solely in how to control the seizures itself but it is also essential to children with epilepsy to live normal like others. Here, managing is including on how children with epilepsy prevent the seizures and the most important is what people should do when there is a seizures. Children with epilepsy itself are important people in managing their epilepsy because they know well about their own condition. Epilepsy does not mean that life has to drastically change. Maintaining a healthy and well-balanced lifestyle is important for people with epilepsy. Here, self-management are important are important to people with epilepsy to know their own situation. Self-management here means that people with epilepsy need know about their own epilepsy and how to prevent it. The main aspect of self-management here is remembered to take epileptic medication at the right time. It is important to take the medication in the proper time because it is one of the ways to reduce the occurrences of seizures. According to Walker & Shorvon (1999), one of most common cause of uncontrolled seizures is people‟s failing to take their medication correctly. Apart from that, they also need to get enough sleep and try to limit the workload and stress. A regular sleep pattern ensuring enough rest and by doing outside activity can reduce stress which indirectly can reduce the

seizures itself. Beside that, people with epilepsy also need to avoid the stimulant that can cause seizures to them such as alcohol or drug. Children with epilepsy also need to arrange a regular review with the doctor which this can help them to notices about the change in the type of frequency of their seizures. Apart from the children with epilepsy itself, the family and other close contact also need to know about the epilepsy. In addition, they need to know about what to do in the event of seizures. This aspect is important for them because the unpredictability of the seizures. “The family that is well informed about epilepsy is better able to deal with the daily task of raising a child who has seizures” (Hickey, 1999:71). In school, the roles of teacher also important to help the student with epilepsy. Teacher need to know and understand about the seizures and the proper first-aid in the school setting. Yet, the most important here is the knowledge about the epilepsy itself. Children with epilepsy itself or people who are close contact with them need to know the epilepsy. They need to get as much as information about the epilepsy so it can help them to understanding more about the epilepsy.

A STORY OF TEENAGER WITH EPILEPSY

Interview On 28 September 2008, I did my interview with Ahmad (not real name) who has suffered from epilepsy since three years ago. During my interview, Ahmad also bring along with his friend, Adam (not real name) who are closely with him and his roommate at the Polytechnic. Adam also his only friend who are witness how epilepsy attacks Ahmad. Thus, my interviews become easier because I can obtain more information from both of them. I also don‟t face any problem when doing my interview because Ahmad and I are well-known.

Background of respondent Ahmad (not real name) is a Malay man. He is 19 years old and currently study at one of Polytechnic in Sarawak, taking certificate of mechanical engineering. He is the eldest son from the five siblings. His father is a police officer and his mother work as school secretary.

Epilepsy: A Sudden Condition According to Ahmad, he suffers from epilepsy since he was 16 years old which is in December 2005. The story was beginning in his house at when he answers a phone call from his friend. While he answers the phone call, he suddenly collapsed and his body was cramped about 5 minutes. According to him, he was feeling unconscious during that time and he told me that he remembers that he yelling his mother, “mak” before he was collapsed and unconscious.

Then, his mother quickly brought him to the hospital. At hospital, doctors do some investigation by doing EEG (electroencephalography)5 scan to him. The scan is done but the result stated that there are not evidence to diagnose him have an epilepsy. But, doctor suspected him have an epilepsy and during at hospital, nurses and doctor treat him like him have an epilepsy. He stayed for a week at hospital for further investigation and treatment. Yet, till this interview was done, Ahmad only has seven seizures since three years ago. Ahmad also still on treatment which he taking AED which is Carbamazepine regularly.

The Causes of Epilepsy Yet, when talking about the causes of epilepsy, there are several causes that can cause the epilepsy. There are many possible causes of epilepsy such as brain injury due to an accident, an infection, or a stroke which causes brain damage. But, all the causes that I mentioned above are cannot explain the causes of Ahmad‟s epilepsy. When I ask him about the cause of his epilepsy, he don‟t know the main causes of his epilepsy yet the result of EEG scan stated that his brain doesn‟t have any problem. I also ask him is that whether any of his family members has epilepsy and he also told me that his family doesn‟t have a history of epilepsy. Yet, in the earlier discussion, it is a small percentage that the epilepsy is cause by the hereditary from the family.

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Electroencephalography is a tool with wired attached to different parts of head which connected to the amplifier and magnifies the small electrical signal from the brain. (Walker & Shorvon, 1999)

But, Ahmad told me that he suffer a head injury when he 3 years old. During that time, his head is bleeding and need a medical treatment for that injury. Yet, one of the causes of epilepsy is because of the head injury. This is might be the causes of epilepsy on Ahmad but there is not my duty to say this.

The Change in Life After the incidence, he need to more attention to take care of his health despite he want to do the activity that he like. He also mention that his life his change because of the epilepsy. He needs to discipline himself to take an AED regularly which he needs to follow a proper schedule. Yet, Ahmad also told that doctor ask him to stop taking AED for two weeks to look whether he can cope without it. But, the result is not as an expected because within two weeks without taking any AED, he can feel that seizures will attack him and he also feel uncomfortable with his body. Apart from that, he also cannot be direct expose to the direct flash such as camera flash because if his eye expose to such light, the seizures will come. Yet, he also cannot watch television for a long period of time because of his condition. Ahmad also cannot expose to the direct cool temperature and cannot sleep too late. If he sleep late a night, his body will react to it and then the seizure will come because he does not have an enough sleep. “During exam time, I want to do my revision until late midnight but doctor ask me to take enough sleep to control my seizures” (Ahmad)

Because of his situation, Ahmad needs to change his life which it directly related to the epilepsy. Ahmad feels that he is different before and after he has epilepsy.

Theme and Issue Arising Generally, people who suffer from epilepsy will feel that they are change. Yet, this here change means the impact of epilepsy. In Ahmad case, there are many possible impacts that faced by him such as impact on social, emotional, physical as well as economic. a. Effect on psychological Ahmad mentions that after he has epilepsy since three years ago, he often feels tired and restless. This condition was result from the effect of the medication that he takes. Yet, he also has a memory problem which he sometime forgot to take medicine. This indirectly will affect his study. Beside that, he also feel depress. He not feel depress about the epilepsy itself but he feel depress because he need to follow the schedule to take an AED in the right time. He needs to take one tablet per day and if he forgot to take the medicine, his body will become tired and he will know that seizures will come. He also experience anxiety and sometime headaches because of his health condition. b. Social Stigma Ahmad also feels his life change after he have epilepsy. There are many impacts that Ahmad faced yet in term of his social life. First, when he knows that he has an epileptic seizure, he shy to share with others especially with his friends and classmate

that he has epilepsy. He shies to share with others about his condition because he scared that his friend will keep away from him. He also scared that he will be lonely without any friends that can accompany him. In addition, he also try to keep it secret from other because he feel that if he told others about his condition, they will said that he is crazy people. Yet, some people don't understand epilepsy and think it's a mental illness or a kind of retardation. “I feel that people will look at me as a “gila” (mad person) because of my situation and because of this I don’t want to share with my classmate during the school time” (Ahmad) Sometime when his neighbourhoods saw he has seizures, they will come over to see him have a seizure. He feels that people like to see him when he has seizures rather to help him. “I feel very weird that people always come to me when I have seizures but I don’t know what the purpose that they see me because during the seizures I’m in unconscious…here I feel that they only want to see me rather to help me” (Ahmad) These stigmas indirectly make Ahmad low self esteem and self-confidence. Stigma that face by Ahmad also face by other people who have epilepsy. c. Social Activity Beside that, Ahmad also needs to change his social life. In other word, he needs to reduce the activity that he often did before he have epilepsy. For example, when his friend goes for swimming, he cannot go because doctor asks him not to go swimming yet it is dangerous for him. This make Ahmad feel jealous because many things that his

friend can do but he cannot do. He just can saw his friend swimming and enjoy between them. He mentioned that his feel very lonely and useless because of his condition, he need to stay away from the thing that he like to do such as swimming. “I’m jealous that my friend can do many things like swimming, because I like swimming, and saw my friend sleep late at night, but I only can saw what they do because I know what limit I have” (Ahmad) In addition, Ahmad also been selected for National Service (NS) training, but yet because of his condition he cannot go for that training. “After I finish my SPM (Sijil Pelajaran Malaysia), I was selected to go for National Service training. I was happy that time even my friend said the training itself give many benefit….but I so sad during that time because doctor ask me not to go” (Ahmad) All above discussion on social activity show that Ahmad need to reduce the social activity. d. Effect of medicine There is a fact that people with epilepsy will experience the effect of medicine that they take to control their seizures. There are several possible effects that Ahmad faces because of the AED that he takes. He cannot pay more attention to his teacher when in school. This is not because of his epilepsy but this is because of the effect from the medicine that he takes. The AED that he takes make him feel restless and often feel drowsiness.

“Now I feel so sleepier even though I get enough sleep last night. This is the side-effect from the medicine that I take” (Ahmad) Ahmad also experience short term memory loss because of the AED that he takes. In addition, he sometime forgot to take the medicine and this make him feel like seizures will come. Yet, this condition has reflected my earlier discussion on the side-effect of AED which one of the side-effect is connected to the memory problem.

e. Relationship Based on Ahmad story, relationship with his father are not good. He not was feeling very happy with his father which not concern with his condition. He also feels that his fathers are not concern with his need as teenager with epilepsy. He also mentioned that he always in fighting with his father because his fathers are not happy with what he does. But, in contrast, he feels that his mothers are more concern with him. In other words, he are more attach to his mother. Here, the roles of attachment are important as Ahmad need to cope with his condition. He always refers to his mother when he has a problem or conflict. In addition, he feels that his mother concern with his need and condition as an epileptic person. “My mum is very concern to me. Yet, when I have problem, I will discuss with her and when I need to go for medical treatment, my mum will send me to hospital…my mum also worry when I need to go far away from her” (Ahmad)

Current Situation In the interview, I also ask about the current situation of Ahmad. During the interview, he feels very sleepier. But, regarding his condition as epileptic person, he feels happy and accepts for what he is. He thinks positive about his condition and believes that what has happen to him as a gift from the god. Yet, in his first year after the incidence of seizures, he cannot manage his seizures and but after a year, he could know when the seizures will come. This means that he learn from the past experience and this past experience has guided him on how to manage his epilepsy. The transitions from the first year of having epilepsy to the next year have given him knowledge to manage his epilepsy. “I know when the seizures will come...when my small eye goes to the right side and my body feel different. I quickly fight this situation by prevent my small eyes goes to the right side and make my body sweating” (Ahmad) He also not feels embarrassed to share about his condition despite he know that some people do not understand the condition that he face. He feels that it is good for him to share about his condition to others because he knows that if the seizures attack him, his friend will help him. “When first Ahmad told me that he has epilepsy, I do not know what epilepsy is even I don’t care about it… but until one day seizures attack Ahmad, I cannot do anything. Thus, start from that day I know what is epilepsy and I try to help Ahmad with his situation” (Adam)

Now, Ahmad feels that his life is better than the first year he has epilepsy. Even though epilepsy have change his social life and also give an impact to his psychological, he was happy because he believed that there are some people outside there have worse condition than him. Ahmad also feels very happy and surprise because there are some people concern about his condition and situation. Thus, these help him to increase the self-esteem and self-confidence.

DISCUSSIONS a. Future of children with Epilepsy In this discussion, I try to emphasis the future of children with epilepsy. Based on the experience that Ahmad faces with his epilepsy, the issue of the future children with epilepsy are rarely discussed. Yet, children with epilepsy often face stigma from the society and experience the effect of the epilepsy itself. These are the current situation that children with epilepsy face in their life. But, how about their future? Is there any one can accept he or she as a life partner or In fact, children with epilepsy are not solely concern with the current situation but yet they also concern about their future life. Taking into consideration with Ahmad case, he also expresses his concern about his future life. What concern him about his future is about his future children. He afraid that his futures children will be like him despite he don‟t want his future children has epilepsy because he knows about the effect of it. The concern of the family life also can be the issue of the future life of children with epilepsy. This is because children with epilepsy does not know when their will free from the seizures. Yet, their might be live with epilepsy for entire of their life.

Another issue that become concern of people especially children with the epilepsy is the issue of employment. Yet, during the childhood time, they might be concern about on how to manage their seizures in school. But, after their come into adolescent phase, they might be thinking about the future employment that suitable for them. They also question that is there any employee can accept their as a worker and if their accepted, can the environment of the workplace provide them a free environment from stigmatisation and discrimination. Thus far, all the above discussions are related each other. The future of people with epilepsy are not only on the people with epilepsy itself, but all society need to be more concern the situation of children with epilepsy by giving them a space to show their own potential. b. Implication on Social Work Practice Until now, it is rarely discussion about the implication of social work practice with the children with epilepsy itself. In fact, the roles of social worker in order to help children with epilepsy are important aspect in the social work practice. Yet, as a background of social work student, I think that social worker can contribute to help children with epilepsy because it is a role of social worker as “change agent”. In addition, the social work goal when dealing with different kind of people such as children with epilepsy is to enhance problem-solving, coping and development capacities of people. (Gibleman, 1995) Further to this, there are many role that social worker can do. Blake (1979 in Kistner & DeWeaver, 1997) has identified four roles of school social work in order to help children with epilepsy which is (1) casework, (2) education, (3) coordination and

liaison services with medical institution and (4) advocacy. Yet, all these roles are related to the social work practice in every day life. In dealing with children with epilepsy, social worker can provide a counselling to the children with epilepsy itself and to the family. This can help the children with epilepsy to adjust with his or her condition and help the family to improve on how to deal with seizures. “Consultations with social worker can help, especially with how the teen has adjusted to living with epilepsy, social problem, family issues or other factor that may contribute to mood or behaviour problem” (Kistner & DeWeaver, 1997:54) Yet, as a social worker, we need to ensure the value and principle in social work practice are been practice when dealing with people with epilepsy. Value and principle such as acceptance, empowerment and self-determination are the principle that can be practice. Yet, this value and principle are interrelated each other. As a social worker, we need to accept the children with epilepsy for what they are which it can help us to empower the children with epilepsy to cope with his condition. This indirectly can enhance the self-determination among the children with epilepsy in making the decision. Thus, it is not solely the task of doctor to help children with epilepsy but the role of social worker are essential to help children with epilepsy to cope with his or her condition. Social worker can empower children with epilepsy by giving them an education about the epilepsy itself beside create the awareness to the society about the important to help children with epilepsy.

RECOMMENDATIONS Recommendation can be taken up based on the Ahmad experience. The recommendation itself are based on the personal experience and the information that I have read and collected through the book, journal and internet which it can help people like Ahmad to cope with their condition. Yet, children with epilepsy have a problem with their memory. Ahmad also experiences this problem which cause him forgot to take medicine regularly. It can affect their epilepsy condition. This is because children with epilepsy like Ahmad need to take AED regularly and take it at the right time. So, because of this problem, the purpose of the antiepileptic drug to control the seizures cannot be achieved. Thus, it is important for people like Ahmad to take a note on the medicine that they take. In other words, they can make a diary about their epilepsy. They can make a note about the appointment with the doctor and they also can take a note after they take medicine in a day inside the diary. This indirectly can help them to remember that whether they already take the medicine or not. Apart from that, giving a proper knowledge to the children with epilepsy is important. This is because by giving the knowledge to them, it can help them to understand more about the condition of epilepsy. It also helps them to manage their epilepsy and can reduce the seizures. Apart from giving education to the person with epilepsy itself, society also can be including in this. By giving knowledge to the society, it can increase the understanding of society about epilepsy. Societies need to know and understand the condition of epilepsy and this will help them to know what to do in the

event of seizures. Yet, this also can reduce the stigma of the society towards the people with epilepsy.

Beside that, in education system, epilepsy education and awareness should be part of the school curriculum whenever one or more students at school have epilepsy. Because seizures are unpredictable, anyone at school may need to respond to a seizure. If first student are not well prepared, the result may not only be medical complications, but also greater embarrassment or fear for the student with epilepsy. Yet, by doing these, it also will free the school environment from the stigmatisation and discrimination toward student with epilepsy because these could increase stress, which may affect school performance or even make seizures more frequent. Thus, the education system needs to be aware of this situation on order to help children with epilepsy.

Role of the government need to be consider. In this sense, Malaysia government should support funding for epilepsy research in psychosocial, behavioural, cost of care, children health and educational health. They also need to promote the effective implementation and enforcement in the area of epilepsy itself to reduce the stigma and discrimination on the epileptic person.

CONCLUSIONS Epilepsy is one of the medical conditions but the effects of epilepsy are more on the social aspect rather than medical aspect. Children with epilepsy experience different types of epilepsy which it comes into the two major types of seizures, partial and generalised seizures. Yet, brain injury, hereditary causes and environmental itself can contribute to the causes of epilepsy. But, most of the causes of epilepsy itself are unknown and sometime cannot be unidentified by the medical technologies. The effects of the epilepsy itself in the social aspect are really seen in the people with epilepsy especially to the children. The effect that they may face is come into different aspects which have affected them especially in their development as a child. Even though the epilepsy is more to the medical condition which involve the neurological aspect, but the children with epilepsy need to cope with its social and psychological consequences. Further to this, psychological which associated with the emotional and mental are more seen on the children. As children, they need more psychological need and esteem need in order to help them to develop. Yet, as they develop, they need to cope with all the effect of epilepsy as well the side effect of medicine.

By looking into the Ahmad case and my background as a social work student, it is important for the children with epilepsy to know about the epilepsy yet in term of how to manage the seizure. I‟m agree that the main treatment of epilepsy is by taking a medicine but without the self-management from the children itself, the seizures cannot be control and it can worse the condition of the children.

The children need to know better about their own health condition which they can prevent and control their seizures. But, it is not only the children responsible to this, yet the role of the family especially parent are important to help the children to cope with the epilepsy. The role of school and teacher also can be essential as they also have a direct contact with the children in the school. At a macro level, the societies itself have to aware that the children who have an epilepsy is not a “mad person” or been “possesses” by the demon spirit, but it is the medical condition which it related to the function of the brain. Society need to ensure that the environments of children with epilepsy are free from the stigmatisation and discrimination whereas this can help the children to go through with their condition and situation.

To conclude this, I believed that children with epilepsy are not born to be like such condition. Children with epilepsy also a human which they also need a space to develop as children and to cope with their own condition. As a social work student which holds the value and principle of social work, it is important for me to help children with epilepsy to go through with the impact of epilepsy and the most essential is empower the children to increase the self-determination among the children.

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