KUALA LUMPUR: The Health Ministry hopes to screen all newborn babies for Inborn Errors of Metabolism (IEM) or inherited metabolic diseases.
Deputy Health Minister Datuk Dr Abd Latiff Ahmad said with a small investment so many lives could be spared from agony, deaths and hefty treatments in the future.
He said the ministry would ask for more budget allocation from the Government to provide the screening after the on-going two-year pilot project on screening of babies for IEM is completed in 2008. “It only cost RM3 for a child to be screened for the inherited metabolic disease and the small investment could save a lot of lives from agony, deaths and hefty treatments in future,” Dr Latiff told reporters during the Metabolic Camp II yesterday.
The pilot project, that started in September, is currently being carried out at government hospitals in Kuala Lumpur, Putrajaya, Selayang, Alor Star, Penang, Kota Bahru, Kuching and Melaka, said geneticist Dr Choy Yew Sing, who is the chief investigator of the pilot project known as Newborn Screening for IEM. ,. Dr Latiff said it would cost the Government RM1.5mil to screen all 500,000 babies born each year in Malaysia.
“It is a small investment compared with the cost saved in future because with early detection, the right diet and treatment, many can lead normal lives,” he said.
IEM comprises a large class of genetic diseases involving disorders of metabolism such as mitochondrial disease, organic academia, urea cycle defects, glycogen storage disease, lysosomal storage disease and fatty acid oxidation defects.
It is due to defects in genes producing enzymes, which are essential in many biochemical reactions or metabolism in our body. If untreated, they may cause mental retardation, physical handicap and even death. If both parents carry the same defective gene responsible for one particular IEM, they run 25% risk of giving birth to a child with the particular inborn error of metabolic disease, said Dr Choy.
During a question and answer session, he said the lack of Q10 drug for mitochondria patients was due to difficulty in getting approval for the drug. “We lack report on the effectiveness of the drug. We are trying to obtain health technology assessment from other countries and also compile our own report,” he said.
He said the drug had been effective on one-third of his patients, however, for another one-third, there were still some problems while it was not effective at all for the rest. Mitochondria patients lack coenzyme Q that helps the cells produce energy and patients may experience symptoms such as vision or hair loss, heart attack, diabetes or cancer, he said.
The drug works as an anti-oxidant and helps the cells produce energy. Dr Choy said most of his IEM patients were Mitochondria patients. The disease was more common in the Asia region than other regions, he said.
By LOH FOON FONG
Source : STAR
[tags : seic epilepsy seizures children pediatric neurology]
Saturday, December 16, 2006
Wednesday, December 13, 2006
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]
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]
Tuesday, December 12, 2006
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.
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
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]
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.
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]
Tuesday, November 21, 2006
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)
Campaign strategy:
Working along two parallel tracks, the Campaign will:
Download : Campaign Info Here (252kb - PDF File)
Official Website : Click Here
[tags : seic epilepsy seizures children pediatric neurology]
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]
An Early Childhood Education and Care Centre in Penang
Kepala Batas included in Project
Kepala Batas in Penang will be the fifth location for the government’s pilot project on Early Childhood Education and Care (ECEC).
Deputy Prime Minister’s wife Datin Seri Rosmah Mansor said Kepala Batas had been identified to join the other locations - Subang Jaya and Putra Jaya in Selangor and Mempaga and Chini in Pahang where ECEC centres would be set up.
The conference was themed ‘Parents, Practitioners and Policy Makers in Positive Partnership.’
Rosmah said to facilitate implementation of the programme, ECEC committee would work closely with agencies such as FELDA, the Penang Regional Development Authority, the local municipal councils and Perbadanan Putra Jaya.
He had also said the Cabinet had approved ECEC that stimulates the creativity, imagination and interests of children up to six years old.
The three-day conference was jointly organised by a nationwide coalition of 22 non-governmental organisations (NGOs), ended yesterday.
Some 355 delegates, including 30 local speakers and nine from Australia, United Kingdom and Singapore, attended the conference.
A total of 45 papers were presented and a Memorandum on Early Childhood Intervention setting out objectives and future directions for early childhood services in Malaysia was presented to Rosmah.
News Source : STAR
[tags : seic epilepsy seizures children pediatric neurology]
Kepala Batas in Penang will be the fifth location for the government’s pilot project on Early Childhood Education and Care (ECEC).
Deputy Prime Minister’s wife Datin Seri Rosmah Mansor said Kepala Batas had been identified to join the other locations - Subang Jaya and Putra Jaya in Selangor and Mempaga and Chini in Pahang where ECEC centres would be set up.
“We are in the midst of planning ECEC's implementation and hopefully the centres
can operate by February next year,'' she said in her speech at the closing of
the First National Early Childhood Intervention Conference at Copthorne Hotel,
here.
The conference was themed ‘Parents, Practitioners and Policy Makers in Positive Partnership.’
Rosmah said to facilitate implementation of the programme, ECEC committee would work closely with agencies such as FELDA, the Penang Regional Development Authority, the local municipal councils and Perbadanan Putra Jaya.
She said ECEC programme would also consider including disabled children in the
future. On Oct 31, Deputy Prime Minister Datuk Seri Najib Tun Razak was
reported to have said that the pilot project to enhance young children’s skills
and mental development would be launched next year with a RM20mil government
allocation.
He had also said the Cabinet had approved ECEC that stimulates the creativity, imagination and interests of children up to six years old.
The three-day conference was jointly organised by a nationwide coalition of 22 non-governmental organisations (NGOs), ended yesterday.
Some 355 delegates, including 30 local speakers and nine from Australia, United Kingdom and Singapore, attended the conference.
A total of 45 papers were presented and a Memorandum on Early Childhood Intervention setting out objectives and future directions for early childhood services in Malaysia was presented to Rosmah.
News Source : STAR
[tags : seic epilepsy seizures children pediatric neurology]
Thursday, October 19, 2006
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]
Monday, October 16, 2006
Free Ketogenic Diet Meal Plan Calculation
We found a Ketogenic Diet Meal Plan calculation online. YAY!
Its done by the Standford University Medical Centre.
Its done by the Standford University Medical Centre.
We've not tested it out yet, but it looks pretty comprehensive.
Here's the link to download the excel file. Try it out for size, it may be helpful.
Stanford University page : http://www.stanford.edu/group/ketodiet/
Free Ketogenic Diet Meal Plan Calculator : http://www.stanford.edu/group/ketodiet/mealplnr.xls
Here's the link to download the excel file. Try it out for size, it may be helpful.
Stanford University page : http://www.stanford.edu/group/ketodiet/Free Ketogenic Diet Meal Plan Calculator : http://www.stanford.edu/group/ketodiet/mealplnr.xls
NutriGenie is selling a software which is based on Stanford University's Diet Meal Planner.
Database: 8,000 items plus user's own food database.
Analyses: RDA, calories, protein, carbohydrate, total fat, ketogenic ratio.
Features: ketogenic ratio indicator, caloric need and nutrient requirement calculator specific to ketogenic diet, search and sort capabilities. Excellent food database management utilities, personal food groups, hide and unhide foods. Personal nutrient intake goals.
Buy : http://nutrigenie.biz/ngkdmp48.html
Free Download Sample : http://nutrigenie.biz/software/ngkdmp48.exe
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
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]
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]
Sunday, October 15, 2006
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]
Sunday, October 08, 2006
News : Inborn Errors of Metabolism (IEM)
Excerpt from STAR ONLINE
Screening them at birth
By LOH FOON FONG
The mystery has haunted many grieving parents: why do their normal, healthy babies suddenly become handicapped or mentally retarded? But such are the insidious effects of infants with Inborn Errors of Metabolism (IEM), inherited metabolic diseases that comprise a large class of genetic diseases.
“A baby may be well until suddenly at three years old, he or she dies of a heart attack,” said Dr Choy Yew Sing, geneticist-cum-metabolic-specialist at the Kuala Lumpur Hospital (KLH).
Cases detected in Malaysia are just the tip of the iceberg. Many have gone unnoticed because the symptoms are common: heart attack, stroke, poor feeding, fits, comatose, behavioural problems, hearing or visual problems, bleeding in the head, vomiting blood or autism, he said.
Dr Choy Yew Sing: ‘Deficiency in enzymes due to defective genes can affect any organ in the body.“Deficiency in enzymes due to defective genes can affect any organ in the body,” explained Dr Choy, who diagnoses at least four new cases weekly. “If untreated, they may cause mental retardation, physical handicap and even death.
“Many of the diseases resulting from IEM are treatable, if only they are detected early,” he said.
Hence, newborn screening, early diagnosis and appropriate management would save the child and prevent mental retardation and physical handicaps, he said.
He said, generally, treatment would be futile when a child reached age seven.
An affected individual inherits the defective gene from both parents who are carriers but are themselves normal.
Examples of the more common IEM are: G6PD deficiency, maple syrup urine disease, urea cycle defects, methylmalonic academia, mucopolysaccharidosis and mitochondrial disease.
The symptoms range from mild to severe. The condition usually affects babies although some symptoms are manifested only in adulthood, said Dr Choy.
He said if the symptoms indicate usual health problems, proper standard treatment would rectify them.
But with IEM, the problem will recur and worsen, even after treatment.
He said the problem cuts across all ethnic groups; marriage between relatives increases the risk.
He said the lack of expertise and IEM testing facilities has resulted in the lack of detection. There are only three geneticists in Malaysia who are trained to detect IEM, and only the Institute for Medical Research and Kuala Lumpur Hospital have the facilities and expertise to conduct the tests, said Choy.
The screening process for IEM includes special blood (serum amino acid) and urine (uric organic acid) tests of newborns by using the technology called tandem mass spectrometry.
Currently, there are more than 1,000 patients on record. Since one in 1,500 children is born with the condition, there may be more than 300,000 cases a year from the 500,000 babies born in Malaysia every year, said Dr Choy.
The Health Ministry had initiated the project to look into the feasibility of screening all newborn babies for genetic metabolic disorder. The two-year project is currently being carried out at government hospitals in Kuala Lumpur, Putrajaya, Selayang, Alor Star, Penang, Kota Baru, Kuching and Malacca, said Dr Choy.
“We want to see how prevalent IEM is in our population and how feasible the treatment process is so that we can plan for the health needs of the population,” he said.
“Screening babies at birth allows for early treatment and preventing complications,” he said. “It also reduces the extent of brain damage and organ failure.”
Depending on the type of IEM, patients can be treated with special diet, vitamin supplements, medications, enzyme replacements, liver transplants or bone marrow transplant, said Dr Choy.
For further information, contact Norliya 012-315 5421, Ivy 017-330 2632 or Chan 012-338 1706.
The CT scan results for the four-month-old boy looked suspicious. They showed bleeding in the head, caused either by a fall or abuse. Doctors queried Winnie Chan, the baby’s mother, if either had taken place. She denied it, but was deeply troubled by the questions.
Screening them at birth
By LOH FOON FONG
The mystery has haunted many grieving parents: why do their normal, healthy babies suddenly become handicapped or mentally retarded? But such are the insidious effects of infants with Inborn Errors of Metabolism (IEM), inherited metabolic diseases that comprise a large class of genetic diseases.“A baby may be well until suddenly at three years old, he or she dies of a heart attack,” said Dr Choy Yew Sing, geneticist-cum-metabolic-specialist at the Kuala Lumpur Hospital (KLH).
Cases detected in Malaysia are just the tip of the iceberg. Many have gone unnoticed because the symptoms are common: heart attack, stroke, poor feeding, fits, comatose, behavioural problems, hearing or visual problems, bleeding in the head, vomiting blood or autism, he said.
Dr Choy Yew Sing: ‘Deficiency in enzymes due to defective genes can affect any organ in the body.“Deficiency in enzymes due to defective genes can affect any organ in the body,” explained Dr Choy, who diagnoses at least four new cases weekly. “If untreated, they may cause mental retardation, physical handicap and even death.
“Many of the diseases resulting from IEM are treatable, if only they are detected early,” he said.
Hence, newborn screening, early diagnosis and appropriate management would save the child and prevent mental retardation and physical handicaps, he said.
He said, generally, treatment would be futile when a child reached age seven.
An affected individual inherits the defective gene from both parents who are carriers but are themselves normal.
Examples of the more common IEM are: G6PD deficiency, maple syrup urine disease, urea cycle defects, methylmalonic academia, mucopolysaccharidosis and mitochondrial disease.
The symptoms range from mild to severe. The condition usually affects babies although some symptoms are manifested only in adulthood, said Dr Choy.
He said if the symptoms indicate usual health problems, proper standard treatment would rectify them.
But with IEM, the problem will recur and worsen, even after treatment.
He said the problem cuts across all ethnic groups; marriage between relatives increases the risk.
He said the lack of expertise and IEM testing facilities has resulted in the lack of detection. There are only three geneticists in Malaysia who are trained to detect IEM, and only the Institute for Medical Research and Kuala Lumpur Hospital have the facilities and expertise to conduct the tests, said Choy.
The screening process for IEM includes special blood (serum amino acid) and urine (uric organic acid) tests of newborns by using the technology called tandem mass spectrometry.
Currently, there are more than 1,000 patients on record. Since one in 1,500 children is born with the condition, there may be more than 300,000 cases a year from the 500,000 babies born in Malaysia every year, said Dr Choy.
The Health Ministry had initiated the project to look into the feasibility of screening all newborn babies for genetic metabolic disorder. The two-year project is currently being carried out at government hospitals in Kuala Lumpur, Putrajaya, Selayang, Alor Star, Penang, Kota Baru, Kuching and Malacca, said Dr Choy.
“We want to see how prevalent IEM is in our population and how feasible the treatment process is so that we can plan for the health needs of the population,” he said.
“Screening babies at birth allows for early treatment and preventing complications,” he said. “It also reduces the extent of brain damage and organ failure.”
Depending on the type of IEM, patients can be treated with special diet, vitamin supplements, medications, enzyme replacements, liver transplants or bone marrow transplant, said Dr Choy.
For further information, contact Norliya 012-315 5421, Ivy 017-330 2632 or Chan 012-338 1706.
Banking on hope
By LOH FOON FONG
By LOH FOON FONG
The CT scan results for the four-month-old boy looked suspicious. They showed bleeding in the head, caused either by a fall or abuse. Doctors queried Winnie Chan, the baby’s mother, if either had taken place. She denied it, but was deeply troubled by the questions.She had brought Chang How Nam to the hospital because he had difficulty swallowing, could not grip with his hands or initiate movements.
It was not until Chang was seven that his condition was diagnosed. The cause: glutaric aciduria type I, a rare genetic disorder in which the body is unable to process the amino acid lysine, hydroxylysine and tryptophan properly. He suffered brain damage that resulted in mental retardation.
Some people with glutaric aciduria develop bleeding in the head (subdural haemorrhage) and the bleeding can be mistaken for acts of child abuse, said Dr Choy Yew Sing, chief investigator of the Health Ministry’s pilot project, Newborn Screening for Inborn Errors of Metabolism (IEM), which started on Sept 1.
“Bleeding could be mistaken for acts of child abuse,’’ he explained.
How Nam was misdiagnosed due to the general lack of expertise in Malaysia. As he grew, he could not sit, crawl or call his parents. Now, at 12 , he cannot stand, walk, speak or swallow food because the right diagnosis came too late.
Tan Yee Ping using the computer to communicate with his only brother. Beside him is his father, C.L. Tan.“I was told that if his condition had been known earlier, he would be able to talk and walk,” said 47-year-old Chan.
Tan Yee Ping using the computer to communicate with his only brother. Beside him is his father, C.L. Tan.“I was told that if his condition had been known earlier, he would be able to talk and walk,” said 47-year-old Chan.
She had brought her son to many specialists and ended up in a neuro clinic. He was treated as a cerebral palsy case but his condition continued to worsen.
“I could not accept it. He was normal until he was four months old. I insisted that the doctor carry out an MRI scan for him because he was not getting better despite all the treatment,” she said.
The neurosurgeons then decided to refer her case to a geneticist. Special blood and urine tests were done. That was when his condition was finally diagnosed, in 2004.
“I was so relieved when we finally found out what was really wrong with him,” she said.
Tan Yee Ping, at 17, before he was diagnosed with Inborn Errors of Metabolism.How Nam now takes 10 different types of medication and vitamin supplements. His condition has affected his capacity to swallow, so an opening is created at the abdomen to feed him.
Tan Yee Ping, at 17, before he was diagnosed with Inborn Errors of Metabolism.How Nam now takes 10 different types of medication and vitamin supplements. His condition has affected his capacity to swallow, so an opening is created at the abdomen to feed him.
“I am glad that the Health Ministry is looking into the possibility of making IEM screening available to all newborns in future. Then cases such as mine could be prevented,” she said.
Tan Yee Ping was a normal, healthy baby until he started having fits at around four and a half months, recalled his 57-year-old retiree father C. L. Tan.
Tan Yee Ping was a normal, healthy baby until he started having fits at around four and a half months, recalled his 57-year-old retiree father C. L. Tan.
“He would have more than 20 fits a day and it was impossible for us to feed him. We saw a lot of doctors and they would give medication. But the medication did not stop the fits. It only reduced (the frequency),” said Tan.
“The doctors said he was epileptic and told me that when his immunity is stronger by the time he is 15, the fits might go away,” he said.
However, they did not. Yee Ping grew up thinner and smaller than most children his age. He could not sit or stand, and he salivated all the time. Every two or three hours, he would need to lie down because he would be tired.
“Yee Ping has run out of ‘battery,’ the teachers would say and let him rest,” recalled Tan.
His condition shifted between being as soft as jelly when he was not having a fit, and stiff when he had one, Tan said.
His condition shifted between being as soft as jelly when he was not having a fit, and stiff when he had one, Tan said.
Two years ago, when Yee Ping was 18, Tan brought him to see a paediatrician in Universiti Kebangsaan Malaysia Hospital.
Coincidentally, Yee Ping had a fit at that time and the doctor saw his seizure. He said that it was not epilepsy but some kind of neurotransmitter disorder due to the lack of certain enzymes, said Tan.
“He referred me to a specialist at KLH,’’ he added. The specialist had just returned from overseas and had set up a special clinic called the metabolic clinic. I didn’t know what metabolic disorder was,” he said.
The geneticist saw his son, asked him to walk and told Tan that it could be a neuro-transmitter disorder. He took blood and urine samples and wanted to admit Yee Ping the following week to take some spinal fluid.
“One of my relatives told me that his child became abnormal as a result of spinal fluid being removed from him while others told me that it would be a high risk procedure. I was troubled. I had to make a decision and I decided to admit Yee Ping,” he said.
After the spinal fluid was removed, Yee Ping felt dizzy, vomited and could not sit up, the side effects from the procedure. He stayed in the hospital for five days before he was discharged.
Test results showed he suffered from tetrahydrobiopterin deficiency, a rare disorder that increases the blood levels of a substance called phenylalanine.
The specialist changed all the medication except for the one that treated seizures. The treatment helped him produce the enzyme that he lacked.
He suffered side effects for more than a month due to the change in medication but within six months, Yee Ping, who had never walked since he was born, began walking.
“He is literally a walking miracle,” said Tan, tears welling up in his eyes.
“He became physically stronger and more alert, unlike before, often in a daze due to fits and medication. No more floppy eyes, sleepiness or frequent fits. Now he is undergoing speech therapy,” he added.
From 20 fits a day to about six when Yee Ping was under medication, it is now down to once or twice a year.
When asked what he hopes for the future, Yee Ping, with his slurred speech, said he wants to be a policeman.
Wednesday, October 04, 2006
1st National Early Childhood Intervention Conference (NECIC)
There will be the 1st National Early Childhood Intervention Conference (NECIC) that will be taking place in Penang from 18 - 20 November 2006 at Copthorne Orchid Hotel, Tanjung Bungah, Penang.
Objectives
- To provide a platform for sharing and discussion of early childhood intervention issues
- To determine future directions in the delivery of early childhood intervention services
- To adopt a memorandum on early childhood intervention
The Keynote Address
- UN Rights on the Responsibilities of Governments & Communities to Meet the Needs of Children with Disabilities (Mr Gaye Phillips from UNICEF)
- Parallel Processes - Common Features of Effective Parenting, Human Services, Management and Goverment (Dr Tim Moore from Royal Children's Hospital, Melbourne)
- Other Plenary Sessions & Presenters on Early Childhood Intervention, Models, Approaches, Early Detection and more can be found in the download section - Flyer below.
This event is organised by :
NECIC 2006 SECRETARIAT
CO-23- UP Kompleks Masyarakat Penyayang
Jalan Utama
10450 Penang
Malaysia
Tel: 604-6585396
Fax: 604-6597852
Email: necic2006@gmail.com
For those who are interested, please contact the NECICSecretariat or refer to the their website.
Main Website : http://www.asiacommunityservice.org/NECIC/necic_main.htm
Information Download
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
Tuesday, September 12, 2006
News : Retarded, because of bad diagnosis
Excerpt from STAR ONLINE
Retarded, because of bad diagnosis
KUALA LUMPUR: About one-third of babies with inherited metabolic diseases have been misdiagnosed, resulting in the infants becoming mentally retarded or physically handicapped, and some failing to survive, according to a geneticist.
From a recent study on 812 cases of Inborn Errors of Metabolism (IEM), one-third were severely handicapped and their condition was not properly diagnosed, or had been misdiagnosed, said Dr Choy Yew Sing, chief investigator of the pilot project, Newborn Screening for Inborn Errors of Metabolism, which started on Sept 1.
Many of these cases went undetected because the condition presented common symptoms, hence the misdiagnosis of poor feeding, fits, comatose, mental retardation, behavioural problem, hearing or visual problem or organ dysfunction, he said.
The lack of expertise and IEM testing facilities also added to the lack of detection.
“There are only three geneticists in Malaysia trained to detect IEM and only KL Hospital and the Institute for Medical Research have the diagnostic facilities,” said Dr Choy.
One in 1,500 children are born with the condition. With 500,000 babies born every year in Malaysia, there would be more than 300 cases a year, he said.
Dr Choy said the Government had initiated the pilot project to look into the feasibility of screening all newborn babies for genetic metabolic disorder.
[tags : seic epilepsy seizures children pediatric neurology]
Retarded, because of bad diagnosis
KUALA LUMPUR: About one-third of babies with inherited metabolic diseases have been misdiagnosed, resulting in the infants becoming mentally retarded or physically handicapped, and some failing to survive, according to a geneticist.
From a recent study on 812 cases of Inborn Errors of Metabolism (IEM), one-third were severely handicapped and their condition was not properly diagnosed, or had been misdiagnosed, said Dr Choy Yew Sing, chief investigator of the pilot project, Newborn Screening for Inborn Errors of Metabolism, which started on Sept 1.
Many of these cases went undetected because the condition presented common symptoms, hence the misdiagnosis of poor feeding, fits, comatose, mental retardation, behavioural problem, hearing or visual problem or organ dysfunction, he said.
The lack of expertise and IEM testing facilities also added to the lack of detection.
“There are only three geneticists in Malaysia trained to detect IEM and only KL Hospital and the Institute for Medical Research have the diagnostic facilities,” said Dr Choy.
One in 1,500 children are born with the condition. With 500,000 babies born every year in Malaysia, there would be more than 300 cases a year, he said.
Dr Choy said the Government had initiated the pilot project to look into the feasibility of screening all newborn babies for genetic metabolic disorder.
[tags : seic epilepsy seizures children pediatric neurology]
Friday, June 09, 2006
News : Snozelen at Society for the Severely Mentally Handicapped Selangor and Federal Territtory
Excerpt from STAR ONLINE Kids benefit from charity draw
By BAVANI M
By BAVANI M
FIFTEEN-YEAR-OLD Tan Ji Teck's angelic face lit up with a smile that would have melted the hardest of hearts as he touched the cushioned walls blinking with pretty little lights.
The darkened room, which had a cosy feel to it, had glowing fibre optic strands and was filled with soothing coloured lights, while music played and a fragrance pervaded the room.
It was his favourite time hanging out in the Snoezelen therapy room at the Society for the Severely Mentally Handicapped Selangor and Federal Territory in Petaling Jaya.
Costing RM50,000, the Snoezelen room helps stimulate the senses of the home's special children.
Tan (right) and Adam Firdaus, seven, hanging out in the snoezelen room of the Society for the Severely Mentally Handicapped Selangor and Federal Territtory.Tan suffers from Cornelia De Lange Syndrome, a growth defect. Although he is 15, he looks more like a five-year-old child.
The centre's head teacher, M. Mangamah, said the room gives the kids the ability to experience the five senses – sight, touch, smell, taste, and hearing.
The centre's head teacher, M. Mangamah, said the room gives the kids the ability to experience the five senses – sight, touch, smell, taste, and hearing.
“Children lacking certain senses, are encouraged to play with equipment that helps stimulate those senses,” she said.
The Snozelen room helps stimulate the senses of the children.“The room certainly has a calming effect on them each time they come here.”
The Snozelen room helps stimulate the senses of the children.“The room certainly has a calming effect on them each time they come here.”
About 13 special children suffering from various mental disorders such as Cornelia De Lange Syndrome, cerebral palsy, Down Syndrome and epilepsy come here on a daily basis to learn to be independent.
“They come here totally dependent on everyone and we try to teach them to become as independent as possible,” Mangamah said.
“Ji Teck, for instance, is able to communicate with us and tell us if he wants to go to the bathroom and he can easily recognise people,” she added.
A similar Snoezelen therapy room has been set up at Bethany Home in Taiping, Perak.
The Ronald McDonald Children’s Charities Fund of Malaysia (RMCC) set up both facilities; the one at Bethany Home cost about RM100,000.
“The facility has done wonders to benefit the severely handicapped members of the home,” RMCC president Fadillah Yakin said.
The funds for the second room, at Bethany Home, came from the Malaysian Charity Draw I held last year, Fadillah Yakin said, adding that without the funds it would not have been possible.
“We received RM250,000 from the last charity draw and, of that, RM100,000 went towards setting up the Snoezelen room in Bethany Home, while the balance was channelled to the Give a Gift of Smile campaign, which aids children born with cleft lip and palate undergo corrective surgery that helps them lead a normal life,” said Fadillah.
According to Fadillah, through this campaign, RMCC had helped restore the smiles of 60 children from all over Malaysia since 2003.
“Cleft lip and palate is the fourth most common birth defect, and is the most common facial defect in the world.
“In Malaysia, it is estimated that 600 babies of the total average of 570,000 born every year are born with this defect.
To date, there are almost 12,000 babies born with cleft lip and palate. These children need surgery as without it, the defects affect their appearance, speech and dental condition.
For details on the centre, call 03-7874 6703.
Thursday, June 08, 2006
News : Meningitis can cause cerebral palsy or epilepsy
Excerpt from STAR ONLINEA 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.
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
Saturday, May 13, 2006
News : Story of Wong Lee Foong born with cerebral palsy and epilepsy
Excerpt from STAR ONLINEShe 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]
Thursday, May 11, 2006
News : Malaysian Care Supporting families for child with disability or complex needs
Excerpt from STAR ONLINEShared 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).
Monday, January 02, 2006
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]
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]
Sunday, January 01, 2006
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]
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]
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