Seizure Disorder No Longer Bedevilling

Epilepsy patients no longer need to fear being regarded as vessels of evil spirits. Cures are easily available, writes RANJEETHA PAKIAM.

WHEN Saiful Helmi Ismail, 31, was diagnosed with epilepsy, his parents were relieved.

Ever since his first epileptic seizure in his teens, family members and friends were convinced that he was possessed by spirits and urged his parents to refer him to a bomoh.

But Ismail Junid, 54, and his wife, Rusna Ibrahim, 54, knew that there had to be some medical explanation for their son’s condition.

With proper medication and epilepsy surgery, Saiful now leads a normal life and has a steady job.

His life now is a far cry from the days when he had to depend on his parents for everything and he had to endure the look of fear on his friends’ faces when he suffered a seizure.

Although the conditions of epilepsy patients are more widely understood and accepted by the public today, a social stigma concerning the illness still exists.

Hospital Universiti Kebangsaan Malaysia professor and senior consultant neurologist Prof Dr Raymond Azman Ali said epilepsy patients were still viewed in a negative light, especially in rural areas.

"There is still a lot of stigma and prejudice against patients as people believe they have been cursed or are possessed. If a patient is having a seizure on the roadside, nobody wants to even go near to help him.

"Even employers at work are prejudiced against epilepsy patients. Of course, they can’t have jobs which require them to work with firearms or in high places, but they can do so many other things," he said.

Dr Raymond said epilepsy patients who were on the latest drugs could perform normally as the medication had reduced side-effects but maintained efficacy.

"Previously, epilepsy patients on medication to control their seizures had to deal with a host of unwanted side-effects such as obesity, drowsiness, unsteadiness and tremors.

"One of the drugs caused women to look manly — they developed moustaches, their faces became coarser and their gums became thicker and more prominent," he said.

In the 1990s, research for neurological diseases was at its pinnacle with a lot of funding pumped into epilepsy. As a result, new and improved drugs were developed. The drugs available locally are Levetiracetan, Topiramate and Oxcarbazapine.

Topiramate is a favourite among women, claims Dr Raymond, as the patient loses between five and 10 per cent of total body weight after taking it.

Patients who have suffered from uncontrolled seizures for more than two years and have not responded to at least two appropriate anti-epileptic drugs have the option of undergoing epilepsy surgery.

In Malaysia, HUKM is where the majority of patients are referred to for epilepsy surgery, which entails removing the part of the brain where the epilepsy focus is.

The first person was operated on in 1996 and since then, HUKM has handled about 70 surgeries.

According to Dr Raymond, 80 per cent of the patients who underwent epilepsy surgery reported they were "cured of epilepsy".

"Only one suffered from a minor stroke, but so far, no one has died from the surgery.

"When they ask if there is a chance of dying, we say yes, but the mortality rate is less than one per cent in the world, while the morbidity rate is two to three per cent — patients may suffer from loss of a quarter of their visual fields in each eye.

"Memory in most patients is improved after surgery."

However, Dr Raymond said the criteria for undergoing epilepsy surgery are stringent in Malaysia.

"The pre-surgical tests will take months as we want to make sure the surgery is safe and effective.

"We assess the patients to establish the type of epileptic syndrome they are suffering from and to ensure they are compliant, meaning they take their medications regularly."

Patients have to undergo physical evaluations, IQ (intelligence quotient) tests, brain scans and EEGs (Electroencephalography).

Dr Raymond said patients with an IQ of lower than 70 are not operated on as experience showed that those with low IQs do not fare well after surgery.

Those with severe psychiatric illness were also not considered for surgery as doctors have found that while the seizures ceased, the psychosis often worsened after surgery, he said.

If patients have passed all the evaluations, they will finally be asked to list down their goals in life after surgery.

"Those who really want their lives to be seizure-free will list such things as a desire to get married, to be able to drive and to have a job.

"Usually, we operate on those with specific goals in life," said Dr Raymond.

---

Saiful glad to be leading normal life

SAIFUL Helmi Ismail almost lost his life because of an epileptic seizure.

While returning home from work in the LRT one day, Saiful began having fits. He was shaking and foaming at the mouth.

At the next station, he was herded out by the disembarking crowds. Still unaware of his surroundings, Saiful fell down just outside the sliding doors of the LRT.

As the train moved, Saiful was hit, but was lucky as only his right leg was in harm’s way.

He broke a shin bone, but Saiful never felt it at the time. He was still suffering from the after-effects of the epileptic seizure and it was only when he regained consciousness at the hospital with his leg in a cast did he realise what had happened.

The accident occurred in 1996. Saiful, now 31, said he began having epileptic seizures after he sustained a head injury during a friendly football match.

"I fainted after receiving a strong kick to my head. But it was only after two years that I began to feel the effects of the kick.

"I began having seizures. My body would start to feel cold and I used to experience a feeling of weightlessness. Then my body would go stiff and if I was holding a pen or pencil or anything else in my hand, I would grip it so hard, it would break.

"I would also start shaking and foaming at the mouth."

Saiful suffered for years, his seizures occurring at least three or four times a week, each seizure lasting for about six minutes.

He used to receive medication for the seizures and went for monthly check-ups at the hospital but was told that nothing else could be done to help him.

The turning point in his life came when he was referred to Hospital Kuala Lumpur. The specialist there told him there was hope for him to lead a normal life though epilepsy surgery.

After various tests, Saiful underwent his first operation in February, 1998 in Hospital Universiti Kebangsaan Malaysia, the centre for epilepsy surgery.

Due to severe bleeding, the operation was discontinued after only part of the lesion was removed.

His seizures were reduced after that to only twice a week but the doctors recommended another operation as they said he had a 75 to 80 per cent success rate.

Seven months later, Saiful’s second operation went off without a hitch and he has not had a single seizure since.

It has been eight years since the epilepsy surgery and Saiful now leads a normal life. He secured a job as a finance executive in a bank and has been happily married for a year now.

---

Patients find emotional support to be crucial

MEDICATION alone is not enough to ensure a better quality of life among epilepsy patients.

As with all other debilitating diseases, epilepsy patients cope much better when provided with strong emotional support.

A study conducted in 2004 by a team of researchers from Universiti Malaysia Sabah showed a positive correlation between the overall quality of life of the patient and emotional support.

The study, which sampled 113 patients from 10 hospitals in Sabah, centred on the relationship between the quality of life of epilepsy patients and the types of coping mechanisms used by them to deal with the illness.

Pharmacist Dr Lua Pei Lin, who led the team, said people with epilepsy suffered from psycho-social difficulties, such as forging inter-personal relationships, gaining employment, and facing discriminations.

"Because of these psycho-social disorders, their quality of life is reduced, which means the way they lead their life is affected in a negative way.

"Epilepsy patients don’t feel comfortable in a group of people they’ve just met. They are hesitant when it comes to travelling long distances or even to just go shopping because they are afraid they might have seizures," she said.

Lua, who now lectures at Universiti Teknologi Mara, said patients coped with the disease most frequently through religion, with over 60 per cent saying that religion contributed to their well-being.

She said patients also looked for instrumental support by asking others for advice with regards to treatment and medication. Emotional support from family members and friends who understood the difficulties in dealing with the disease was crucial in coping.

"Patients also turn to ’active coping’, which means they try to do something positive about their illness.

"For example, some patients read up more about epilepsy while others try to find the best medication," she said.

The study showed that less frequent ways of coping with epilepsy were through alcohol or drug abuse, behavioural disengagement (being in denial about having epilepsy) and self-blame.

The study also showed that marital and employment status influenced the quality of life.

The study showed that 60 per cent of the patients were married while 48 per cent were jobless.

Those who were married claimed to have a better quality of life, but it was the opposite for those who had jobs, who fared worse than the unemployed patients.

This was unexpected, as she said global studies had found epilepsy patients to be happier when employed.

But there is an explanation for this.

Lua said it was possible that patients who had jobs were constantly worried that their colleagues would find out about their illness and feared being discriminated against.

This, she said, rang true in a few Asian countries where epilepsy was still viewed in a negative light.

"A social stigma still exists when it comes to epilepsy. People are fearful when they see patient suffering from seizures.

"People have a misconceptions about epilepsy, wrongly equating the disease to psychosis. They think an epileptic seizure is a form of a psychotic episode."

Educating the public on the disease would put a stop to discrimination against epilepsy patients, and Lua said she hoped the study would serve that purpose.

The study concluded that future epilepsy care management should include health-related quality of life assessment as well as advice on useful strategies to deal with the illness.

---

Frequently asked questions

Q: What is epilepsy?

A: Epilepsy is a neurological condition that affects the nervous system. Epilepsy is also known as a seizure disorder. It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition like alcohol withdrawal or extremely low blood sugar level.

The seizures in epilepsy may be related to a brain injury or a family tendency, but most of the time the cause is unknown. "Epilepsy" does not indicate anything about the cause of the person’s seizures, what type they are, or how severe they are.

Q: Who gets it?

A: Epilepsy can develop in any person at any age. About 0.5 per cent to two per cent of people will develop epilepsy during their lifetime. People with certain conditions may be at greater risk. More men than women have epilepsy.

Q: How does it begin?

A: The reasons why epilepsy begins are different for people of different ages. But what’s true for every age is that the cause is unknown for about half of everyone with epilepsy. Children may be born with a defect in the structure of their brain, or they may suffer a head injury or infection that causes their epilepsy. Severe head injury is the most common known cause among young adults.

In middle age, strokes, tumours, and injuries are more frequent. In people over 65, stroke is the most common known cause, followed by degenerative conditions such as Alzheimer’s disease.

Q: What are some of the symptoms of an epilepsy seizure?

A: In movies, epilepsy patients are almost always depicted as having major seizures with eyes rolling backward, foaming at the mouth and sometimes ending in unconsciousness. However, an epileptic seizure can also be as mild as slight twitches. The severity of a seizure is very individualised.

The most commonly seen in movies is the grand mal seizure, now known as ‘tonic-clonic’ seizures. Grand mal seizures cause a lot of problems to the patient as they collapse, their eyes roll up, they bite their tongue, urinate, they jerk for hours and then they sleep.

Simple-partial seizures mean they don’t lose consciousness with some patients displaying minor twitches. There is usually no need for medication in these cases.

Temporal lobe seizures are the most common for operations. Patients who experience this type of seizure usually start with a blank stare followed by a chewing movement and lip smacking.

The commonest type of seizure in children is the absence seizures which is defined by blank stares. When this happens in the classroom, teachers think the student is daydreaming.

Sources: www.epilepsy.com and neurologist Prof Dr Raymond Azman Ali.

Source : NST
[tags : seic epilepsy seizures children pediatric neurology]

Article : My Life with Epilepsy

My Life with Epilepsy

By Mdm. Chang Choon Foong

I suddenly collapsed while working in a laboratory at the age of thirty seven. When I gained my consciousness in a clinic and heard my colleagues related what had happened to me, fear came to me immediately that I thought I won’t be normal anymore. I was then married with two children, had a good job and a happy family, then this weird thing, I thought to myself, had spoilt my life. I had to give up driving and outdoor activities like swimming, I felt dishearten, unfriendly and constantly worried when would be the next attack.

A helpful colleague brought me to meet Dr. Selva at the General Hospital Neurology Department and had a CT scan of my brain. He asked if anything had happened to me before the attack, I told him I ate mutton at a restaurant for the first time. Chinese refer epilepsy as goat’s sickness and the Malays called it ‘gilababi’. I felt inferior with that name. Dr. Selva laugh heartily and later used to tease me whenever I met him in the hospital. I wish to thank Dr. Selva for later giving me a MRI scan and explained to me about epilepsy and gave courage to face my sickness. Since then I was a regular visitor to the General Hospital, I had seizures in between but I was blessed to have a caring family and helpful colleagues to console and reassure me.

Years passed by but cause of my convulsion was still unknown, I decided to do my own analysis. I collected information from my mother regarding the history of our family and the physical conditions of myself during younger days. I studied and noted down all aspects of my daily life just before the attacks. I even did experiments by reducing medication after cease of attack for two years. I was saddened when the attack came back. The doctor on appointment was unhappy and sent me to see a psychiatrist! From that day onwards I kept myself very strict on my medication and continued my analysis.

As I grew older, my dismay gradually diminished especially when I saw other patients whose conditions were worse than mine but they showed fearless. At times I did thought that it was a divine punishment but then again I analyzed that it was only in hospital that I saw suffering of sickness and that gave me a desire and decision to get involve in welfare activities.

I am now a fifty five years old grandmother, with prompt medication and regular medical check up and most importantly keeping a good temperament, for that I have no seizure for the last three years, I am jovial, confident, enjoy outdoor activities and pray that one day I no longer need the medication and I can share my joy and experience and simply say epilepsy is like a common flu.



Source : Malaysian Society of Epilepsy

[tags : seic epilepsy seizures children pediatric neurology]

Feedback on Asian Epilepsy Congress (AOEC)

6TH ASIAN & OCEANIAN EPILEPSY CONGRESS (AOEC) (AOEA - PATIENT PROGRAMME) 15TH NOVEMBER - 17TH NOVEMBER 2006

Written by: Serene Low

First and foremost, I would like to say "Thank You" or "Terima Kasih to Persatuan Epilepsi Malaysia and UCB Pharma Asia Pacific Sdn Bhd for giving me an opportunity of a lifetime to attend epilepsy patient programmes organised in conjunction with the above congress.
I was one of seven privileged Malaysian participants to have attended AOEA. Of the seven participants, six of us met on 4th November, a Saturday afternoon, to brief and discuss what AOEA is about.

Day 1
On 15th November, seven of us turned up at KLCC Convention Centre to register for AOEA. Upon registration we were given our name tags and bags containing materials relevant to our programmes. Most of us quickly browsed through the materials and then we adjourned to a food court which is located on the 4th floor of KLCC Convention Centre. We had some light refreshment while waiting for the first event of AOEA to start.

At 6.30pm, we congregated at the main entrance of KLCC Convention Centre (on the Jalan Pinang side) together with participants from Singapore, India, Indonesia, Taiwan, Mongolia, Hong Kong, Japan, Philippines and Thailand. There was a huge crowd of participants and within minutes, we were quickly ushered into coaches waiting to take us to Lake Titiwangsa.

At Lake Titiwangsa, all participants were being directed to Nelayan Restaurant. At 8.00pm, Persatuan Epilepsi Malaysia's president, Dr Hussain Imam Mohammad Ismail gave a short welcome speech and wish all of us "Happy Dinner". I sat at a table together with Taiwanese and Singaporeans. While enjoying our dinner, we quickly introduced ourselves and exchanged name cards. The main language used by the participants at our table was Chinese. Although I am an English educated person, I was able to mix well and spoke Chinese with my foreign friends. We were a happy group of friends and we also enjoyed our food a lot. We left Lake Titiwangsa at about 9.45pm and returned to KLCC Convention Centre at 10.15pm.

Day 2
This was our most tiring day of AOEA. Talks started at 9.00am and ended at 5.30pm. In between talks we had two coffee breaks and a delicious buffet lunch.

Patients and caregivers participated actively with questions that were tactfully answered by panels of invited doctors. I especially liked the programme concerning "Outstanding Persons With Epilepsy" from six countries. These people gave testimonies on their encounter with epilepsy and conquering it. I was very motivated and touched by their stories. An epilepsy patient myself, I can feel and understand these peoples' emotions and problems better than non sufferers.

Another programme I appreciated a lot was the two DVD presentations. The first DVD show was presented by the Taiwan Epilepsy Association entitled "The Moment I Lost Myself" followed by the second show presented by Hong Kong Epilepsy Society entitled "Demystifying Epilepsy - Educational Kit on Epilepsy".

At 6.00pm we witnessed the opening ceremony of the 6th AOEC. The first speaker was IBE President, Susanne Lund followed by four more speakers who gave their short welcome speeches. After the speeches there was a local dance performance organised by the Malaysia Tourism Board. My Taiwanese and Singaporean friends were impressed with the dances and the dancers' colourful and beautiful costumes.

At 7.00pm all delegates and participants were given a welcome reception. We all had a sumptuous dinner and went home feeling tired but happy with all the useful knowledge we had acquired throughout the day.

Day 3
After a long and tiring day yesterday, we all looked forward to this day of social outing. Coaches picked us up at 10.00am at the KLCC Convention Centre's main entrance and left for Putrajaya (the new Malaysian capital).
Ms Jennifer Chen, president of the Taiwan Epilepsy Association sat beside me. We exchanged information concerning epilepsy on an NGO level as well as personal level. By this day, both of us had become good friends. I am very glad to have found another new friend as a resulf of attending AOEA.

We arrived at Putrajaya slightly past eleven and walked a short distance to board air-conditioned tour boats for a cruise around Putrajaya Lake. It was my first time to cruise round Putrajaya Lake and the sights and views of Putrajaya buildings (mosque, bridge, government offices and hospital) were beautiful and artistic. We also had a guide in our boat who explained to us briefly about the sights surrounding us.

After the cruise, we were treated to a buffet lunch in a restaurant by the Lake. It was a nice experience to be able to enjoy our lunch comfortably and at the same time surrounded by beautiful scenery. At around 2.00pm we boarded the coach for a short tour around Putrajaya taking in more wonderful sights. We returned to KLCC Convention Centre at approximately 4.45pm.

At KLCC, the Taiwanese participants invited me to join them for some last minute shopping at the mall. We had a great time together.

Having attended AOEA for the first time, I hope to be able to attend future conventions/conferences related to epilepsy. AOEA has enriched my life and taught me how to continue in my pursuit to achieve better ways of assisting my epilepsy friends in Persatuan Epilepsi Malaysia.


Source : Malaysia Society of Epilepsy

Related Link
6th Asian & Oceanian Epilepsy Congress

[tags : seic epilepsy seizures children pediatric neurology]

Global Campaign against Epilepsy: Out of the Shadows

Global Campaign against Epilepsy: Out of the Shadows

Mission statement:
To improve acceptability, treatment, services and prevention of epilepsy worldwide

Established in 1997 as a joint project of the:
World Health Organization (WHO)
International League Against Epilepsy (ILAE)
International Bureau for Epilepsy (IBE)

Objectives:

• increase public and professional awareness of epilepsy as a universal, treatable brain disorders;
• raise epilepsy to a new plane of acceptability in the public domain;
• promote public and professional education about epilepsy;
• identify the needs of people with epilepsy on a national and regional basis;
• encourage governments and departments of health to address the needs of people with epilepsy
• including awareness, education, diagnosis, treatment, care, services, and prevention.
  

Campaign strategy:
Working along two parallel tracks, the Campaign will:

• raise general awareness and understanding of epilepsy;
• support Departments of Health in identifying needs and promoting education, training,
• treatment, services, research and prevention in their countries.

Download : Campaign Info Here (252kb - PDF File)
Official Website : Click Here

[tags : seic epilepsy seizures children pediatric neurology]

Excellent Book on Epilepsy - Seizures and Epilepsy in Childhood : A Guide

Seizures and Epilepsy in Childhood: A Guide

This is such a great book to have if your child is experiencing epilepsy for the first time. This was one of the first book / resource that we bought through a friend in US (can't seem to find it here).

The authors are John M. Freeman, Eileen P. G. Vining, Diana J. Pillas from the John Hopkins University.

John Freeman is such an experienced person in this subject. They cover the whole topic of epilepsy so thoroughly, its absolutely a must for both caregivers and doctors.

It has helped us understand Epilepsy a whole lot more and help us to understand the variation of the seizures and its absolutely parent friendly. Its not made up of tough medical or scientific terms, but the lay man's language.

Check out more of what the book has to offer and Amazon also allows you to peek inside.

Click here.

[tags : seic epilepsy seizures children pediatric neurology]

Benefits for OKU (Orang Kurang Upaya)

The OKU (Orang Kurang Upaya) Welfare card is very helpful, as there are quite a lot of benefits for the individual that is classfied as OKU.

The Welfare Department highlights the details on their website, however its all in Malay.

OKU Website : http://www.jkm.gov.my/Perkhidmatan_upaya.asp?


There are 6 Categories of OKU

1) Kurang Upaya Penglihatan
Kurang Upaya Pendengaran Termasuk pekak dan bisu:
a)Minima (Mild) - (20 - < 30 db)
b)Sederhana (Moderate) - (30 - < 60 db)
c) Teruk (Severe) - (60 - < 90 db)
d)Profound - (> 90 db)


2) Kurang Upaya Penglihatan
Buta (blind) - Penglihatan kurang daripada 3/60 pada mata yang lebih baik walaupun dengan menggunakan alat bantu penglihatan (cermin mata)
Penglihatan terhad (Low Vision/Partially Sighted) - Penglihatan lebih teruk dari 6/18 tapi sama dengan atau lebih baik daripada 3/60 dalam mata yang lebih baik penglihatannya walaupun dengan menggunakan alat bantu penglihatan (cermin mata).


3) Kurang Upaya Fizikal
Kecacatan anggota badan misalnya - Penyakit Polio, Kudung, Muscular Dystrophy, Myopathy, Neuropathy, Osteogenesis Imperfecta dll


4) Cerebral Palsy
a) Hemiplegia - Cerebral Palsy yang melibatkan sebelah bahagian badan
b) Diplegia - Cerebral Palsy yang melibatkan kedua-dua belah kaki
c) Quadriplegia - Cerebral Palsy yang melibatkan kedua-dua belah tangan dan kaki


5) Masalah Pembelajaran
Dignosa perubatan di bawah kategori ini merangkumi:
- Lewat Perkembangan (Global Development Delay) (bagi kanak-kanak berumur < 3 tahun)
- Down' SyndromeAutisma
- Attention Deficit Hyperactive Disorder
- Terencat Akal (Mental Retardation) (bagi kanak-kanak berumur > 3 tahun)
- Masalah pembelajaran spesifik seperti dyslexia, dysgraphia, dyscalculia dll


6) Lain-Lain
Diagnosa perubatan di bawah kategori ini merangkumi semua masalah kurang upaya yang tidak dinyatakan dalam format.


Benefits for OKU

• rawatan perubatan
• khidmat pemulihan, rawatan lanjutan dan latihan vokasional
• pendidikan akademik di sekolah khas dan institusi tertentu
• bantuan kewangan, alat-alat tiruan dan alat-alat kemudahan
• pertimbangan Elaun Pekerja Kurang Upaya
• pertimbangan jagaan dan perlindungan, didikan dan latihan di institusi JKM/NGOs mengikut Program Pemulihan Dalam Komuniti (PDK)
• peluang pekerjaan di sektor awam atau sektor swasta

Additional Benefits include (for more details click on their website)

• Kemudahan Pendidikan
• Kemudahan Di Dalam Aktiviti Harian
• Kemudahan Dan Galakan Pelepasan Cukai
• Kemudahan Pengangkutan Awam
• Kemudahan Perumahan
• Pengecualian Bayaran Rawatan Perubatan
• Pengecualian Bayaran Dokumen Perjalanan
• Kemudahan Peluang Pekerjaan
• Pengecualian 50% Duti Eksais Ke Atas Kereta/Motosikal Nasional Bagi Golongan Orang Cacat Anggota

Additional Info
Bahagian Orang Kurang Upaya, Tkt. 22, Menara Tun Ismail Mohamed Ali,Jalan Raja Laut,50562 Kuala Lumpur.

[tags : seic epilepsy seizures children pediatric neurology]

Ketogenic Diet Book by John Freeman

Book Description

Sometimes called the “miracle diet,” the ketogenic diet has helped doctors treat difficult-to-control epileptic seizures in thousands of children.

Coauthored by two respected Johns Hopkins neurologists, The Ketogenic Diet continues to be the definitive guide for parents, physicians, and dieticians wanting to implement this strict diet.

This fourth edition is extensively updated to reflect current advances in understanding how the diet works, how it should be used, and the future role of the diet as a treatment.

The best-seller also includes sample meal plans, a food database, a section on how the Atkins and modified ketogenic diet can be used as alternative diets to control epilepsy, and much more.

Book Info
Johns Hopkins University, Baltimore, MD. Second edition of a patient education reference on the use of the ketogenic diet to control epilepsy in children. Previous edition 1994. For the practitioner or dietician treating epileptic children, and for parents.

Click here to view more information on the book.

[tags : seic epilepsy seizures children pediatric neurology]

Charlie Foundation - Ketogenic Diet

The Charlie Foundation based in California USA is an establishment set up by parents of a kid who went through the Ketogenic Diet, and successfully overcame his Seizures in Epilepsy.





For those of you who are thinking of venturing into the Ketogenic Diet, I would suggest that you contact the Charlie Foundation, and just with a USD10 payment, they will send you a DVD on the Introduction to Ketogenic Diet.





The DVD is hosted by Meryll Streep and is about 45 mins long. They also interviewed the key doctor - Dr John Freeman and dietian - Millicent Kelly of John Hopkins Hospital. Lots of interviews with parents and also kids who have underwent the Ketogenic Diet and those who are still going through it.

They have a step by step session on the food preparation as well. Overall its a good DVD for parents who want to embark into the Ketogenic Diet. It would help you understand and also help answer some of your frequently asked questions.

For more info : Visit them at http://www.charliefoundation.org/noframes/index.php

[tags : seic epilepsy seizures children pediatric neurology]

6th Asian & Oceanian Epilepsy Congress

There will be an Epilepsy Congress happening this year in Malaysia. It will be held at the Kuala Lumpur Convention Centre from 16 - 19 November 2006.

Sessions & Topics covered in the Epilepsy Congress (excerpt from the 2nd Newsletter)

• Drug Issues in Asia (Shichuo Li & Dede Gunawan)
• Epilepsy Care in Asia (Kazuichi Yagi & Achidiat Agoes)
• Natural History & Prognosis (Pongsakdi Visudhiphan & Endang Kustiowati)
• Risks with Long Term Use of AEDs [Anti Epileptic Drugs] (Satish Jain & Yustiani Dikot)
• The Global Campaign in Asia (Philip Lee & Giuliano Avanzini)
• Paediatric Epilepsy Surgery (Simon Harvey & Zainal Muttaquin)
• Neuroimaging (David Reutens & Purwa Samatra)
• Marriage and Family Issues (Leonor I Cabral-Lim & Lyna Soertidewi)
• Catastrophic Epilepsies of Infancy (Simon Harvey & Reggy Panggabean)
• Research Priorities in Asia Pacific (Patrick Kwan & Bambang Hartono)
• The Cost of Epilepsy in Asia - Are We Different to the West? (Shih Hui Lim & Dede Gunawan)
• Predisposition and Epileptogenesis in Human and Anumal Models of Epilepsy (Yoshiya Murashima & Sangkot Marsuki)

Main Website for the Epilepsy Congress : http://www.epilepsykualalumpur2006.org/index.html

Information Download

1st Newsletter : http://www.epilepsykualalumpur2006.org/uploads/newsletterjuly.pdf

2nd Newsletter : http://www.epilepsykualalumpur2006.org/uploads/FinalAnn.pdf

[tags : seic epilepsy seizures children pediatric neurology]

News : Meningitis can cause cerebral palsy or epilepsy

Excerpt from STAR ONLINE

A shot for protection

DON’T say children don’t know how to share. Why, they share all sorts of things! Sometimes it’s their toys, their food, but most often, they share the microscopic organisms that live on and inside them.

Lice, for instance. You know how it is – one child has kutu and all the other kids in the class go home scratching.

Or the common cold virus, which is why your child sometimes develops a sniffle after coming home from kindergarten.

Daycare centres, kindergartens and schools are hotbeds for infectious diseases like cold, sore throat, chickenpox and hand-foot-and-mouth (HFM) disease because children are in such close contact all day long.

There is now a conjugate vaccine that can prevent pneumococcal bacterial infection in infants and children up to nine years old.And unlike adults, a child’s immune system is more vulnerable to being invaded by disease-causing bacteria and viruses.

Most of the time, the illnesses that spread are harmless. Plus, you can rest assured that if your child has been vaccinated following the National Immunisation Schedule, he is already protected against many common infectious childhood diseases like rubella, mumps, measles and whooping cough.

Unfortunately, emergencies can happen when you least expect it, as in the case of seven-year-old Thomas Lee. What started out as a normal fever one day turned into a full-blown emergency case of pneumococcal pneumonia.

It was two weeks of agony for little Thomas and his parents who had to watch helplessly as their son succumbed to a frightening disease that did not respond to antibiotics.
Seen under a microscope, the pneumococcus or Streptococcus pneumoniae bacterium looks deceptively pretty, like a strand of pearls, or a string of beads. But don’t be fooled, it’s nastier than it looks.

Pneumococcus causes a group of illnesses called pneumococcal disease, with the scariest ones being the invasive infections. These include bacteremia (infection of the blood), meningitis (infection of the membranes covering the brain or spinal cord), sepsis (an infection in the blood associated with shock and organ failure) and pneumonia (infection of the lungs).
Pneumococcus is the most common cause of meningitis in Malaysia, replacing Haemophilus influenzae type b (Hib), for which children are now vaccinated against.

Meningitis is dangerous because the lining of the brain becomes inflamed, and this can cause death or, for those who survive, multiple neurological problems like mental retardation, cerebral palsy, blindness, deafness or epilepsy.

Pneumonia can be near fatal as well. In our country, it is one of the common illnesses that causes childhood hospitalisation and death.

Pneumococcus also causes non-invasive diseases, including otitis media (middle-ear infection) and sinusitis.

These diseases are dangerous, too; a child with middle-ear infection may develop complications like hearing loss, learning disabilities and delays in speech development.
The impact of the pneumococcus bacterium is devastating: each year, more than one million children throughout the world die as a result of pneumococcal disease.
If antibiotics are the marvel that scientific discovery produced to fight bacteria, why didn’t it cure Thomas’ pneumonia?

Many years ago, it might have. But Thomas was probably infected by a strain of pneumococcus that has recently become resistant to penicillin and other antibiotics. This is happening in many countries around the world, including Malaysia, due to the overuse and misuse of antibiotics
Children infected with antibiotic-resistant strains of the bacteria may have prolonged illness because they do not respond to formerly effective drugs. Their disease may spread more rapidly, unless treated with expensive alternative antibiotics.
Clearly, antibiotics are not the answer.

So how do you protect your child from something that spreads through a simple cough, a sneeze, or by the touch of a hand?

Through vaccination, that’s how. And fortunately for parents in Malaysia, there is now a conjugate vaccine that can prevent pneumococcal bacterial infection in infants and children up to nine years old.

The vaccine provides protection against 60%-80% of pneumococcal infections. It is safe, but may sometimes cause some mild reactions like local irritation and fever. Some children may experience other temporary side effects like irritability, drowsiness, restless sleep, decreased appetite, vomiting and diarrhoea.

Although Thomas did not receive the vaccination, he recovered from the infection with no ill effects.

His mother, having gone through the trying ordeal, now advises parents to have their children, especially the very young ones, vaccinated against pneumococcal infection.

“A child cannot live in isolation, and you never know when the infection will strike, and whether you will be as lucky as Thomas to survive unscathed,” she says.

– Article courtesy of the Malaysian Paediatric Association

[tags : seic epilepsy seizures children pediatric neurology]

News : Story of Wong Lee Foong born with cerebral palsy and epilepsy

Excerpt from STAR ONLINE

She loves her like her own

By LOONG MENG YEE
newesdesk@thestar.com.my



KLANG: When Wong Lee Foong was about a year old, her grandmother wished her dead.
“It's better for you to die before I do. If not, who will care for you?” she once asked.
But the grandmother was not being cruel.

Lim: ‘Who can resist her smile and her twinkling eyes?’The family was just too poor and hard-pressed to care for the youngest child, born with cerebral palsy and epilepsy and could neither walk nor talk.



To eke out a living, the grandmother would troop the four grandchildren under her care to the fields to plant lady's fingers in Kundang, Rawang.
While the rest of her siblings played, Lee Foong was left under a tree, attracting flies as she urinated and defecated.



Grandma fed the child with condensed milk, the only kind of baby food she could afford.
And then along came Roxanna Lim, a social worker who took the child as her own.
She was a single working woman then, but she promised to be the best mother to the disabled child.



For the next 20 years, Lim tried to live up to the promise. She quit her job to become a full-time mother and has been living on donations since.
When Lee Foong 's contorted body needed a special medical bed, Lim begged a private rehabilitation school to give her one.



When the special child's eyes were diagnosed with retina detachment, Lim took her to Singapore for a corrective surgery. A couple sponsored the trip and the surgery was a success.
“I want my Lee Foong to continue seeing the beautiful rainbow, her favourite Barney show and her pretty Christmas dress,” said Lim, 53.



The journey through life for the awesome twosome has been peppered with laughter, sorrow, despair and encouragement and, above all, faith, hope and love.
Asked if she regretted taking in Lee Foong, Lim said: “It has not been easy, but I have God on my side.



“Who can resist her smile and her twinkling eyes? My baby may not be like the rest, but she is definitely not a child of a lesser God,” said Lim.





[tags : seic epilepsy seizures children pediatric neurology]

News : Malaysian Care Supporting families for child with disability or complex needs

Excerpt from STAR ONLINE

Shared care

Opening your home to a person with a disability for a few hours a week or an overnight stay can be a mutually enriching experience and can change lives in profound ways, writes VICTORIA L. PARKER.

CARING for a child is not an easy job, especially when the child has a disability or complex needs. As the child grows, so does the parent's ever-increasing job specifications. Parents become professional jugglers of time: they learn to balance giving their child with a disability the support he needs, working, running a household and being there for their other kids. Unfortunately, somewhere along the line, something has to give.

Shared Care Schemes have been a life-line support system for many families all over the world. Informal groups of families are already implementing the concept here in Malaysia. Supporting families for a few hours a week by taking their disabled children swimming, to the park and having them over for dinner or for an overnight stay is all it takes.

While I was working in England as a specialist community nurse, I introduced Jane, a single mother, to the concept of Shared Care. Jane had two children, a daughter Kelly, 14, and son, John, 10. When John was four, he was diagnosed with autism and epilepsy. He had very limited self-help, socialisation and communication skills and was not his happiest when there were changes in his daily routine.

When Jane first considered the idea of Shared Care, she was sceptical until she met Carol and Jack, and their two sons aged eight and 11, and their dog Jasper. They had just become Short-break carers in the local Shared Care scheme. Carol had some experience with epilepsy but knew very little about disabilities.

Welcoming a disabled child into your home can bring countless benefits.Initially Jane, John and I would drop in at Carol’s house for tea on a regular basis and Jane would explain to Carol different aspects of John’s needs. She then started to leave him alone at Carol’s house for a half-day visit once a week. Slowly John and Carol built up a relationship and soon John was staying overnight every couple of weeks. In the beginning they had their rough patches; it was a learning curve for both families, and especially for John.

Interacting with new people in a new environment was extremely stressful for John. There were many frantic phone calls from Carol, as John would scream and bite himself for hours on end. One of Carol’s neighbours even called the police once as they thought she was abusing her children! We got all the neighbours together and explained the situation and eventually they became very supportive of Carol.

John occasionally had severe epileptic seizures. Carol’s husband, Jack, found them very distressing until he understood how to manage them. Slowly John settled in and Carol learnt to read what John needed, to make him feel safe. After six months it was as if John had a second home.

Carol and her husband grew very fond of John, and when John came home after his visits, he smiled continuously until he went to bed.
Jack thought it was a great experience for his family, having John stay with them. His sons learnt more about disabilities and if any one stared at John or called him names, the boys would put them in their place.

The nights that John stayed over at Carol’s place, Jane would go to the cinema or go shopping with her daughter Kelly and focus all her attention on her. Unfortunately, one of the areas of family life that has got to give is time spent solely with other children in the family.
They had been having problems. Kelly was rude to her mother and stayed out late. After John was placed in a Shared Care scheme and stress levels in the family had eased, Kelly admitted that she resented her brother getting all the attention. The time they had alone was a great opportunity for Kelly to relax and open up. The relationship between the siblings improved too.
The most positive outcome of the Shared Care Scheme was the progress John had made. He had become more independent, could dress himself and eat with improved table manners.
His socially inappropriate behaviour had diminished considerably and he began vocalising a lot more. John had rarely spoken in the past and failed to show he recognised his family members or anything in his environment. As Jane said, her jaw dropped when she was in the garden with him one day and in the distance a dog barked and instantly John ran to the garden fence and shouted: “Mummy dog Jasper!” It had been a struggle for both families in the beginning but with that one sentence, all the hard work had been worth it.

In many countries, shared care within a family or facility provision is a statutory requirement. Over the years there has been endless research carried out in Britain, the United States and Australia on Family Linked Short Break Care, or the favoured term at the moment – Shared Care.

Shared Care or Family Link Care is immeasurable in the benefits to the families and child involved. It’s a form of family support that can change the lives of families with disabled children in profound ways. It breaks down barriers and inadvertently brings about positive awareness of disabilities.

Shared Care opens up endless opportunities for disabled children and adults to have new experiences. At the same time, it gives families a break to do the necessary things.
Every family does things differently, even if the cultural and religious aspects of their lives are similar to others in the community. Their day-to-day routines, interests and relationships are different.

When a child with a disability spends time with another family, he is exposed to all these new things and in the long run, the more exposure he gets, the better it is for him. Our daily life experiences increase our cultural understanding: we learn society's rules, problem-solving, and social and communication skills.

The opportunities for a person with a disability are endless. John grew immeasurably from being part of Shared Care, as did Jane and Carol and their families. Supporting people is not just a “charity” activity. It’s about opening your home to another human being and promoting mutual understanding.

Dignity & Services has initiated forums on why and how Shared Care could be implemented in Malaysia. Any family with or without a disabled family member, who would like to know more or be involved in a local Family Linked Shared Care Scheme, can contact Dignity & Services.

One Voice is a monthly column which serves as a platform for professionals, parents and careproviders of children with learning difficulties. Feedback on the column can be sent to dignity@tm.net.my.

For enquiries, call Malaysian Care ( 03 90582102) or Dignity & Services ( 03-7725-5569).

[tags : seic epilepsy seizures children pediatric neurology]

Seizures & Epilepsy In Children

The creation of this Blog came to me one day when we realized that in the entire process of searching for information in Malaysia on Seizures and Epilepsy, was generally pretty limited.

We would like to put together as much information as possible that can be gathered from friends and family whose children are impacted with either epilepsy and seizures and have a common ground where we can share this information freely.

We are not sure how the blog will grow, but hopefully the information that you find on this blog would be useful for you.

Here's the blog on our son, Nathanael Lee - http://darentiff.blogspot.com


[tags : seic epilepsy seizures children pediatric neurology]

Feedback & Information for Seizures & Epilepsy In Children

Dear Friends

Would appreciate any feedback and information that you can provide.

We're looking for Information, Resources, Help, Therapy Sessions, Hospital Sessions, Seminars, Talks .. anything that can be useful to our community for Seizures & Epilepsy In Children.

Please feel free to leave a comment here.

Thanks
Daren&Tiff


[tags : seic epilepsy seizures children pediatric neurology]

News : Vital protection for children

Excerpt from STAR ONLINE

Vital protection for children

With the introduction of the Haemophilus influenzae type b (Hib) vaccine in 2002, S. pneumoniae has replaced Hib as the most common cause of meningitis in children in Malaysia. And now, there’s a vaccine for it, too.

ON 7 OCTOBER 1996, parents around the world went about their daily routine, oblivious to the fact that two scientists they did not know, and would never meet, had discovered something that would impact their lives directly.

It was the day that Peter Doherty and Rolf Zinkernagel were awarded the 1996 Nobel Prize in Physiology or Medicine for their discoveries concerning “the specificity of the cell mediated immune defence”.

Their discovery of how the immune system recognises virus-infected cells “laid a foundation for an understanding of general mechanisms used by the cellular immune system to recognise both foreign microorganisms and self molecules.”

Dr Musa Mohd Nordin and Dr Theodore Tsai agree that the way ahead to prevent invasive pneumococcal diseases in infants and young children is with vaccination.In other words, their work has paved a better platform for the construction of new vaccines, among them the pneumococcal saccharide conjugate vaccine.

This is the first licensed vaccine to protect children under the age of two from invasive pneumococcal disease caused by several of the most common types of the pneumococcal bacteria.

Nasty pathogen
Pneumococcus, formally known as Streptococcus pneumoniae, is a gram-positive bacteria discovered way back in 1881 by French microbiologist Louis Pasteur.
“Pneumococcus contains a sugar capsule (polysaccharide) that encapsulates the bacteria. It is this capsule that makes this germ very infectious,” says Dr Musa Mohd Nordin, consultant paediatrician and neonatologist.

This germ is very easily transmitted via inhalation of aerosols or direct physical contact, for example through a cough or a sneeze.
Once it has landed in your nose, the germ parks itself in there, ready to cause troublesome infections like sinusitis and otitis media (infection of the middle ear).
However, it doesn’t stop there.

S treptococcus pneumoniaeis a nasty pathogen that is the number one cause of sinusitis, otitis media, bacteraemia, pneumonia and meningitis.“(Pneumococcus) breaches the barrier lining of the nose and the pharynx, and enters the blood. When it has invaded the bloodstream, it causes bacteraemia, or blood poisoning,” Dr Musa explains.
The Health Ministry has estimated that the incidence of pneumococcal bacteraemia is about 30 per 100,000 in Malaysian children under five years old, with at least 750 cases and 20 deaths per year.

“And if it goes across the blood-brain barrier into the cerebrospinal fluid, it causes meningitis,” he adds.

Meningitis, where the meninges or the lining of the brain becomes inflamed, is every parent’s worst nightmare. Without prompt diagnosis and treatment, a child with meningitis may die. Even those who survive may have multiple neurological deficits, such as mental retardation, cerebral palsy, blindness, deafness or epilepsy.

“It’s a very tragic survival,” Dr Musa stresses.
Previously, pneumococcus has been overshadowed by the Haemophilus influenzae type b (Hib) bacteria, which was the number one cause for meningitis. However, after the Health Ministry introduced the Hib vaccine in 2002, the rates of Hib meningitis have declined tremendously.
“Now, S. pneumoniae has replaced Hib as the most common cause of meningitis in Malaysia,” Dr Musa points out.

Pneumococcus can also infect segments of the lungs, causing pneumonia. The relentless little germ is actually the number one cause of acute respiratory infections in Malaysia, which is, in turn, the leading cause of childhood illnesses, according to the National Health and Morbidity Survey 1996.

“There are at least 90 different types of pneumococci. But only about eight to 10 of the different pneumococci are responsible for the majority of invasive pneumococcal disease,” says Dr Musa.
His favourite phrase, “pneumococcus is number one” is justified. WHO reports that one million children in the world below the age of five die every year from invasive pneumococcal disease.

Antibiotics not the answer
Gone are the days when antibiotics could be deployed to battle attacks by any bacteria.
Today, bacteria and other microorganisms that cause infections have developed ways to survive drugs meant to kill or weaken them, leading to an emerging public health problem known as “antibiotic resistance”.

“In the 1940s, when penicillin was discovered, it was thought that this was the magic bullet that would eradicate all forms of bacteria. This would be the end of the pneumococcus,” relates Dr Musa.

Instead, the bacteria has managed to clone itself to be resistant to common antibiotics like penicillin and macrolides.

In a study carried out by the Asian Network for the Surveillance of Resistant Pathogens (ANSORP) between 1999 and 2001 in 12 Asian countries, the group concluded that there is a worrying increase in the prevalence of penicillin- and macrolide-resistant pneumococcus.
Antibiotic resistance is believed to arise from the abuse, overuse and misuse of antibiotics. As a result, pneumococcal infections, and many other diseases like tuberculosis, malaria and cholera, are not responding to formerly effective drugs and are spreading rapidly.
In the same study, the ANSORP group recommended that there should be continuous surveillance of pneumococci, while doctors should be more circumspect about the use of antibiotics.

ANSORP also concluded that pneumococcal vaccination is urgently required in Asia, a point that Dr Musa fervently agrees with.

“Antibiotics are not the solution to the pneumococcal problem. The way ahead is to prevent these invasive diseases with vaccination,” he says.

[tags : seic epilepsy seizures children pediatric neurology]

News : Bethany Home Training Centre for Children with Disabilities

Excerpt from STAR ONLINE

Children can now take the bus

TELUK INTAN: It was a dream come true for children of Bethany Home when it received a donation of RM230,000 for a special bus.

“We are grateful for the contribution,” said the home’s director, R. Jayasingh.
The donation is part of the RM730,000 net proceeds collected from ticket sales for the Wild Zebra shows organised by The Star and presented by Artistry by Amway in Kuala Lumpur recently.

Jayasingh said the special bus was needed to pick up students who could not walk independently from their homes here and in Bagan Datoh and other parts of Hilir Perak.

WELCOME AID: Dr Victor and Ngiam holding up the mock cheque in a group picture with (standing from left) Aeria, Tan and Jayasingh (right) and the home’s children after the ceremony on Saturday.“The bus will have a hydraulic wheelchair lift and safety features such as safety belts in each of the seats,” he said.

The bus would also be used to transport the children for outings, picnics and outstation trips, he said after home chairman Dr A. Victor received the donation from Star Publications (M) Bhd deputy group general manager Datin Linda Ngiam on Saturday.

Located at Simpang Empat near here, the home is a training and educational centre for 176 children and adults with a variety of disabilities, including epilepsy, intellectual disabilities, cerebral palsy and autism.

Star Publications group managing director Datuk Steven Tan and his wife Datin Jenny Tan, who also attended the brief ceremony, were given a tour of the home.
Accompanying them were deputy group chief editor (I) Michael Aeria, senior marketing services manager Iris Tan and security manager B.T. Tan.
Dr Victor said when the idea of raising funds first came up, the home was thinking of a smaller bus.

”Now that we have the funds for it, we will get a 44-seater bus, which will cost about RM330,000, so that it can accommodate more children,” he added.

Proceeds from the Wild Zebra shows, held from July 29 to Aug 3 at Istana Budaya in Kuala Lumpur, will also go to the Salvation Army, Tasputra Perkim Kuala Lumpur, Asrama Darul Falah of Perkim in Kuala Lumpur, Shelter in Petaling Jaya and the Paediatric Institute of Hospital Kuala Lumpur.

[tags : seic epilepsy seizures children pediatric neurology]

Article : A Study of Newly Diagnosed Epilepsy in Malaysia [1999]

The Singapore Medical Journal published a paper on Malaysian Epilepsy back in 1999.

Here's a copy of the Report.

Source from Singapore Medical Journal

---

Singapore Med J 1999; Vol 40(01):
A Study of Newly Diagnosed Epilepsy in MalaysiaV Manonmani, C T Tan

ABSTRACT
Background/Aim of Study: To determine the characteristics of newly diagnosed epilepsy in the multiracial population of Malaysia.

Methods: This is a prospective study of 165 consecutive newly diagnosed cases of epilepsy presenting to the neurology laboratory of the University Hospital, Kuala Lumpur.

The inclusion criteria were: two or more seizures with interval of L 24 hours, age L 1 month, residents of Klang Valley. All the patients underwent an awake and sleep EEG.

Results: One hundred and sixty-five cases were collected over 1992 - 1994. Their ethnic origin was: Chinese (36%), Indian (35%), Malay (29%). The mean age of onset of epilepsy was 18.7 years. Localisation related epilepsies accounted for 57.6% of cases while the remaining 42.4% were generalised epilepsies. Of the generalised epilepsies, subclassification was as follows: idiopathic generalised epilepsy 28.5%, juvenile myoclonic epilepsy 5.5%, childhood absence epilepsy 3.6%, West syndrome 3%, Lennox Gastaut syndrome 1.2% and photosensitive epilepsy 0.6%. Twenty-two percent of the cases were symptomatic and 78% were cryptogenic/idiopathic. The patients had a mean of 3.9 other siblings. Only 0.76% of the close relatives (parents and siblings) had a history of epilepsy.

Conclusion: The characteristics of epilepsy in Malaysia is largely similar to those reported elsewhere. Genetic factors may be playing a relatively minor role in causing epilepsy in this community.

Keywords: epilepsy, localisation related epilepsy, generalised epilepsy, symptomatic, cryptogenic


INTRODUCTION
As in other countries, epilepsy is one of the most important clinical problems in the practice of neurology. The aim of this prospective study is to determine the relative incidence and characteristics of epilepsy in Malaysia, and is based on 165 consecutive cases of newly diagnosed epilepsy.


The study was done at the University of Malaya Medical Centre (UMMC) in Kuala Lumpur. It serves a dual function as one of the two national referral centres for tertiary medical care, as well as one of the three public general hospitals serving the 3.5 million residents in the Klang Valley states of Kuala Lumpur and Selangor. Consecutive cases of newly diagnosed epilepsy who presented to the neurology laboratory, UMMC for an EEG were studied. All the patients were personally reviewed by the authors or one of the other neurologists from the medical centre. There must be two or more seizures 24 hours apart. The patients were residents of Kuala Lumpur or Selangor.


The classification of epilepsies and epileptic syndromes largely adheres to the ILAE classification but has been modified to simplify the study. Symptomatic/cryptogenic cases are not categorised separately.


The 165 consecutive cases were collected over the period 1992 - 1994. The ethnic origins were: Malay (29%), Chinese (36%) and Indian (35%). The sex ratio was M:F = 13:12. The age of onset of epilepsy ranged form 3 months to 77 years with a mean age of 18.7 years. The duration of illness was less than 3 months in 57 cases, 3 to 12 months in 31 cases and more than 12 months in 77 cases. The frequency of seizure was more than once daily in 38 cases, once daily to once weekly in 36 cases, once weekly to once monthly in 34 cases and less than once monthly in 57 cases.


Among the 77 cases who had epilepsy for more than a year before diagnosis, 18 had more than one seizure a week. The delay in diagnosis despite frequent attacks was due to failure to recognise the significance of the unusual seizure pattern such as absence, complex partial seizure and myoclonic seizures (11), seeking care from traditional healers (3) and no specific reason was given in 4 other patients.


The patients had a mean of 3.9 other siblings. Only 7 of the total 918 (0.76%) close relatives (parents and siblings) of the probands had a history of epilepsy and another 7 (0.76%) had a history of childhood febrile convulsions. By comparison, 11 cases among the proband had childhood febrile convulsions.


The clinical characteristics of the seizures were: generalised tonic clonic seizure (130); atonic seizure (12); generalised tonic seizure (4); generalised clonic seizure (2); focal motor seizure (25); absence attacks (19); myoclonic seizure (11); sensory seizure (6); infantile spasm (5).
EEG’s were done in sleep and wakefulness in all the patients. One hundred and thirty-seven cases had an abnormal EEG. The abnormalities were: focal or multifocal spike/sharp wave +/- slow wave (72), atypical generalised spike and wave (34), 3/sec spike and wave (7), focal slow wave (12), generalised slow wave (5), hypsarrhythmia (4), slow spike-wave l 2.5/sec (2).
Five of the patients had a photoconvulsive response.


The epilepsy/epileptic syndrome based on clinical features and investigation may be classified as generalised (42.4%) and localisation related (57.6%). Of the generalised epilepsies, sub-classification was as follows: idiopathic generalised (28.5%) juvenile myoclonic epilepsy (5.5%), West Syndrome (3%), childhood absence epilepsy (3.6%), Lennox Gastaut syndrome (1.2%), and photosensitive epilepsy (0.6%). In the localisation related category, the seizure type was as follows: secondary generalised (32.7%), complex partial seizures (CPS) with secondary generalisation (6.7%), CPS without secondary generalisation (3%), simple partial with secondary generalisation (9.1%), and simple partial without secondary generalisation (6.1%). Benign rolandic epilepsy accounted for 3% of the localisation related epilepsies.


Sixty-nine cases had age of onset at below 15 years. The classification for these childhood onset patients were generalised (53.6%) and localisation related (46.4%). Of the generalised epilepsies, sub-classification was as follows: idiopathic generalised (30.4%), childhood absence epilepsy (8.7%), West syndrome (7.2%), JME (2.9%), LGS (2.9%), and photosensitive epilepsy (1.5%). In the localisation related epilepsy category, seizure type was as follows: secondary generalised (27.6%), CPS with secondary generalisation (5.8%), CPS without secondary generalisation (1.5%), simple partial with secondary generalisation (10.1%) and simple partial without secondary generalisation 1.5%. Benign rolandic epilepsy accounted for 7.2% of the localisation related epilepsies. The patients had an average of 2.4 other siblings. None of the close relatives (parents and siblings) had a history of epilepsy.


Among the 46 cases with non-syndromic idiopathic generalised epilepsy, the racial composition was Chinese (16), Malay (16), Indian (14). The age of onset ranged from 6 months to 38 years with a mean of 17.2 years. The sex ratio was M:F = 15:8. The patients had a mean of 4.2 other siblings. Only 3 out of 286 (1%) close relatives (parents and siblings) had a history of epilepsy. The EEG was abnormal in 21 patients, with 19 cases showing atypical generalised spike and wave pattern. The sex ratio for this better defined group of 19 patients was M:F = 2:1. The racial composition was: Chinese (4), Malay (8), Indian (7). Between them, they have a total of 71 other siblings with one having a history of epilepsy.


As for the 15 cases with complex partial seizure, the ethnic composition was Chinese (7), Malay (5) and Indian (3). The sex ratio was M:F = 2:1. The mean age of onset was 18.2 years. The clinical manifestations consisted of: altered consciousness (15), automatism (9), oro-mandibular movement (4), laughing (1), and smiling (1). The precipitation factors were: meals (2), fever (2), fatigue (2), sleep (2), and sleep deprivation (1). Only 2 patients had past history of childhood febrile convulsions of which one was prolonged. Another 2 patients had past history of meningoencephalitis. No obvious cause could be found in the other 11 cases. The EEG was abnormal in 12 cases and normal in 3 cases. The epileptic focus based on surface EEG was bitemporal (5), one temporal (3), one frontal-temporal (2), one occipital (1), and multifocal (1).
Thirty-six cases (22%) were symptomatic and 129 cases (78%) were cryptogenic/idiopathic. The medical conditions associated with the symptomatic cases were: cerebral palsy/mental retardation (13), SLE (6), meningitis/encephalitis (4), stroke (4), glioma (1), meningioma (1), AIDS (1), moyamoya disease (1), hypoglycaemia (1), head injury (3) and alcohol related (1).


A hospital based study has the problem of patient selection with a bias towards more severe and complicated cases. However, these patients were thoroughly investigated and seen by a more select group of doctors. The UMMC serves as one of the community hospitals for the residents in the Klang Valley area, as well as a national referral centre. We have attempted to minimise the bias by including only the newly diagnosed cases from the Klang Valley area. The relatively low proportion of symptomatic cases (22%), compared to 36% from the population based national general practice study in UK(1) suggests that our study sample is fairly representative of the community in general.


The racial composition of the epilepsy cases of Malay (29%), Chinese (36%) and Indian (35%) was similar to the racial composition of the non-obstetric cases seen in the outpatient clinic in the UMMC in 1991, which was: Malay (33%), Chinese (39%), Indian (26%), Others (2%). There is thus no evidence of any ethnic predisposition to epilepsy among the three main racial groups. The mean age of onset in this series at 18.7 years is young. This is probably due to a larger proportion of young population in this country.


The overall classification of epilepsy/epileptic syndrome, shows localisation related epilepsies accounting for 57.6 of cases while the remaining 42.4% were generalised. A number of the clinical generalised tonic clonic seizures had localising features on investigation and were classified as secondary generalised. Reclassification of the initial seizure in the light of additional information was not attempted. The high proportion of clinical generalised seizures which in fact were secondary generalised based on investigation, points to the importance of a thorough history which is emphasised by Sanders(1).


5.5% of epilepsy in this study is due to juvenile myoclonic epilepsy (JME). This corresponds to the 5.4% obtained by Tsuboi from Heidelberg(2), Germany and 4.1% obtained by Mai et al from Milan, Italy(3). On the other hand, the prevalence of benign rolandic epilepsy (3%) appears to be low. When children with onset of epilepsy at below 15 years were considered, benign rolandic epilepsy and childhood absence epilepsy constituted 7.2% and 8.7% of the cases. Based on the EEG record over a three-year period, we have earlier estimated that 4.8% of our epileptic children suffered from benign rolandic epilepsy(4). Blom et al reported a prospective study of epileptic children below 16 years from a Swedish county. The proportion with benign rolandic epilepsy and absence epilepsy were 25.6% and 9.3% respectively(5). Our study is hospital based and may miss mild cases of BRE. The prevalence of infantile spasms, accounting for 7.2% of children below 15 years with epilepsy is rather high. Blom et al ascribed 2.3% of their cases to infantile spasms(5). The apparent high prevalence of infantile spasms may be contributed by the biased sample of the medical centre in attracting the more severely ill patients. The photoconvulsive response rate of 3% in our country which has sunshine throughout the year is similar to the 2.8% reported in the United Kingdom by Jeavons based on patients referred for EEG examination(6).


As for the group with non-syndromic idiopathic generalised epilepsy, there is an unusually low prevalence (1%) of family history of epilepsy. Males accounted for 65% in this group. Oller-Daurella & Oller F-V from Spain reported a male predominance of 62%, and family history of epilepsy among the next of kin at around 23%(7). The low prevalence of epilepsy among the close family suggests that epilepsy is non-genetic, or low penetrance of genes for idiopathic generalised epilepsy among the local population and a further detailed study is planned.
The high proportion of SLE (3.6%) among the causes of symptomatic epilepsy reflects the high prevalence of SLE in the community. The relatively low occurrence of tumour (1.2%) is probably partly contributed by the younger age group of our patients. Sander et al from UK reported that 6% of their patients overall had brain tumour. However, it was only 1% for those under 30 years of age, but 19% for the 50 - 59 years age group and 11% for the L 60 years age group(1).


The overall prevalence of epilepsy among the siblings and parents at 0.76% was low. The risk of epilepsy among the family members is dependent on the age of onset and the type of epilepsy. Anderson & Hauser reported an 11.6% risk of any seizure and 3.6% risk of epilepsy among the siblings of probands with initial diagnosis of idiopathic epilepsy before 15 years of age(8). None of the siblings and parents of the 69 patients with onset of epilepsy below 15 years had history of any form of epilepsy. In our earlier studies, 19% of benign rolandic epilepsy and 18% of JME had siblings with history of fits(4,9). This corresponds to reports from elsewhere(10,11). The overall low prevalence of epilepsy among close relatives among our hospital based patients may thus be a combination of low prevalence of benign rolandic epilepsy where there is a strong family history, and possible non-genetic nature or low penetrance of genes of patients with idiopathic generalised epilepsy.


The low prevalence of 0.76% childhood febrile convulsions among the close relatives (parents and siblings) of the probands is most likely due to the method of case ascertainment. The prevalence of childhood febrile convulsion varies from 0.1% to 15%, depending on the case ascertainment method. Thus, the mean prevalence rate was 2.7% by questionnaire survey, 4.3% by reports of general practitioners or medical record reviews, and 8.1% by examination(12). The estimated prevalence in this study was based on questionnaire and it was ascertained on close relatives of patients with epilepsy. The low prevalence of childhood febrile convulsion in the local population needs to be confirmed or refuted by further studies. In a Singapore study the cumulative incidence of febrile seizures by age 6 years was 4.47%(13).


A study of 165 newly diagnosed "unselected" cases of epilepsy from Kuala Lumpur/Selangor states revealed many patients continued to have long delay before diagnosis, particularly those in whom the seizure characteristics were unusual. There is no evidence to suggest a predisposition to epilepsy in the three main ethnic groups, Chinese, Malay and Indian. The overall classification of epilepsy was generalised (42.4%) and localisation related (57.6%). Benign rolandic epilepsy accounted for 7.2% of childhood onset epilepsy, which is lower than reported elsewhere. Twenty-two percent of the cases were symptomatic. The associated medical conditions were: cerebral palsy/mental retardation (36%), SLE (17%), meningo-encephalitis (11%), brain tumour (6%), and stroke (11%). This reflects the young population and high prevalence of SLE in the community. The prevalence of epilepsy among the close relatives was low at 0.76%. This is probably a combination of expected low incidence of benign rolandic epilepsy in a hospital based study and possible non-genetic etiology or low penetrance of genes of patients with idiopathic generalised epilepsy, which is scheduled for further study.


We wish to thank Ms Pritpal Kaur, Cik Nor Zuhaila Mohamad Nor and Puan Rosmawati Abd Karim for their assistance in typing the manuscript.

Department of Paediatrics

University Hospital

59100 Kuala Lumpur

Malaysia

V Manonmani,

MRCPLecturer
Department of LaboratoryMedicine

University Hospital

C T Tan, FRCP

Professor and ConsultantNeurologist

Correspondence to: Dr V Manonmani




[tags : seic epilepsy seizures children pediatric neurology]