Ohtahara Syndrome

David Cameron's son Ivan has died of a condition which some doctors refer to as Ohtahara syndrome, a very rare form of epilepsy which also exhibits symptoms akin to those of cerebral palsy.

Cameron's son died at the age of six

What exactly is it?

Ohtahara syndrome is either inherited or develops as a result of trauma at birth. It is characterised by seizures which start in the first days of life. Some babies have as many as 100 of these spasms every day.

In the case of Ivan Cameron, his parents noted soon after his birth in 2002 that something was wrong: he had occasional spasms and seemed sleepy.

After extensive tests, they were told he had the syndrome and would be unlikely to ever walk or talk. As well as being excessively sleepy, children with Ohtahara syndrome are often very floppy. They usually go on to develop stiffness in their limbs - similar to children with cerebral palsy - which gives them severe impairments. Behavioural abnormalities and severe learning difficulties are also expected.

There is still some debate as to whether it should be classified as a distinct condition, as Dr S Ohtahara did in 1976, or whether it should be seen as severe early onset epilepsy with a range of differing symptoms.

How rare is it?

It is thought that Ohtahara syndrome affects about 0.2% of children with epilepsy, which in turn affects about 0.5% of the population. Boys are thought to be slightly more affected than girls.

Is it always fatal?

The mortality rate is very high, according to Professor Brian Neville at UCL's Institute of Child Health. As many as half will die in infancy or childhood.

What is known as Sudden Unexplained Death in Epilepsy - or Sudep - affects a significant minority of all people with epilepsy, and this is a common cause of death for those with the syndrome. The risk of Sudep may be reduced with medication to control seizures, but Ohtahara syndrome is often resistant to many of the anti-epileptic drugs available. Older medications such as phenobarbitone as still the preferred choice.

Some babies with a clear abnormality in the brain may be able to have surgery to remove the affected area, but this is unusual. Breathing difficulties are often associated with the condition, and those affected are more susceptible to illness. Pneumonia is not uncommon, and children often die within the first two years of life as a result of such chest infections.

What are the risks of having another child with the condition?

Lack of research means it is very hard for doctors to give parents an accurate assessment of what this risk would be. Some put it at 5% - but this may be based on all forms of epilepsy as a whole. Very few cases are known of families with more than one child with the condition. Speaking to the BBC in 2006, David Cameron spoke about his fears when he and his wife had their subsequent children, Nancy and Arthur.

"When they were born we were watching them like hawks to see if everything was all right," he said on Desert Island Discs. Instead of that great elation you should have at the birth of a child, the first week, two weeks were very tense indeed."

source : www.news.bbc.co.uk

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A precious life is lost due to epilepsy. More lives will be lost due to epilepsy which makes promoting epilepsy awareness work all the more important and urgent. My deepest sympathy and heartfelt condolence to David and family. David is a politician (Conservative Leader) in UK.

HUBBY WAS FIRED FOR NOT DISCLOSING EPILEPSY

14th February 2009

My hubby worked for a chemical plant here in Florida. To make a long story short, he walked through a gas cloud, got into his truck, had a seizure, ultimately doing about $60,000 worth of damage to a building, the truck, etc.

He is presently on worker's compensation for injuries sustained from the accident. We just received a letter from the employer stating that he has been fired because of non disclosure of his epileptic condition.

My husband's seizures were well controlled by medication. He had worked for 2 years in the chemical plant without having any episodes of seizures. It is very unfair for the employer to fire my hubby from his job. Fearing discrimination in his job, my hubby did not disclose he was epileptic.

Was my hubby wrong for not disclosing his condition?

source : www.epilepsy.com

OPEN FOR DISCUSSION

Please weight the pros and cons of the above case.

Do you think the onus was on the hubby to disclose his epileptic condition to the employer when he was offered his job? And if he had disclosed his condition at the time of employment, would he be subjected to a dismissal of his job in the event of a seizure on the job?

Was the hubby extremely irresponsible and inconsiderate to hide his condition which eventually led to the company's great losses as a result of his seizure that occurred behind the wheel? By not disclosing his condition, would that mean the hubby had breached the terms and conditions of employment, giving the employer the legal right to sack him from his job?

Kindly write in your comments. Would also appreciate very much if you can vote in the poll posted on the right side bar of this blog.

Thank you very much for visiting and participating in this discussion.

(A poll of two weeks that ended today, 2nd March 2009, was conducted about whether epileptics ought to be given equal rights of employment versus epileptics' seizures can be a great distraction and disturbance to working colleagues and workflow. Nine readers voted the former.

My personal opinion of the above incident is the hubby should officially file a complain with the Ministry of Human Resource to determine who was at fault and whether he was sacked on fair and valid grounds).

HAPPY VALENTINE'S DAY

HAPPY VALENTINE'S DAY

HAPPY VALENTINE'S DAY

HAPPY VALENTINE'S DAY

HAPPY VALENTINE'S DAY

HAPPY VALENTINE'S DAY

Valentine's Day—Not Just for Lovers!

As stores fill to bursting with bright red Mylar balloons, heart-shaped boxes of chocolates and mountains of envelope-encased sentiments in honor of the patron saint of lovers, St. Valentine, remember that he is also the patron saint of epilepsy.

Medicine and religion have long been intertwined, however medical practitioners were sometimes regarded skeptically in medieval times causing people to seek spiritual intervention for their illnesses. In addition, brain disorders in the 14^th and 15^th centuries were widely regarded as supernatural phenomena incited by evil spirits or the devil.

Because many people believed their symptoms were the work of dark spiritual forces, it made sense for them to combat their perceived tormenters with an antidote to evil in the form of saints—in particular patron saints, who were believed to have restorative abilities for specific ailments.

Information on the origins of St. Valentine's connection to epilepsy differs. Some accounts suggest he is connected to epilepsy because the name Valentine is similar to the German word for "fallen." Epilepsy was once known as the "falling sickness" because some seizures caused a person to lose consciousness and fall. Still other legends propose that a 3^rd century bishop named Valentine von Terni freed the son of a Roman orator from an epileptic seizure.

The good news is, medical research and an increasing variety of scientifically proven therapies have improved the lives of the over 3 million people living with epilepsy in the United States, significantly diminishing the need to turn to supernatural forces for respite!

So this Valentine's Day, amid all the sugar-coated, floral-scented hype, remember that Valentine's Day is not just for lovers, it's for people with epilepsy too.

source : www.epilepsyfoundation.org

AN EPILEPTIC'S PLEA FOR HUMANITY

Destroy all kinds of weapons of mass destruction

Enough is enough

This should never happen to anyone

Paintings and persian carpets put up for auction to raise funds

Crowd of customers buying clothes for sale in aid of Gaza victims

People donating generously in aid of Gaza victims

With Albert Ng, MC of the Charity Bazaar Fundraising Event

We have to fight, conquer and be victorious over our epileptic conditions to do justice to ourselves and others. But, for God's sake, do not fight for power and authority and in the process, destroy mankind

This posting has no relevance to epilepsy awareness but has everything in relation to an epileptic's emotions and heartaches for innocent victims of war in GAZA.

STOP THE BLOODSHED. STOP THE KILLINGS. STOP THE WAR.

In the middle of two auspicious lions

Superstition and Taboo

An hour to 12am on the 25th of January 2009, the entire sky had turned red and smoky. Thick smoke billowed everywhere. Explosions were heard non stop. Loud blasts were deafening. Lights flickered non stop into our room.

War had started. My husband and I sought refuge in a hotel room. We looked out of our room window in awe and disbelief. The sights and sounds were dizzying and drowning. We were caught in the start of a fireworks and firecrackers frenzy. Never in our lives had we ever witnessed such a frenzied display of fireworks and firecrackers in this magnitude.

Every household and business buildings in Gui Lin, China were burning fire crackers that looked like strings of dried red peppers measuring between 5 to 12 meters long. Magnificent displays of fireworks in the sky surpassed the ones we saw during last year's Olympic games in Beijing.

Chinese people had the tradition of burning fire crackers to herald in the New Spring Year which fell on the 26th of January this year. Superstition had it that a demonic monster named Nian, the same Chinese character as for "year", was once skulking toward an ancient village to gobble its occupants when it was frightened away by the crackling sound it made by stepping on stacks of dried reeds. People have set off firecrackers to scare him off every year since they discovered loud noises were the bane of this beast.

Another thing I noticed about New Spring Year is almost everyone would want to wear red. Although I do see people wear green, yellow and blue, red was the prominent colour. It is a taboo to be wearing black since black is associated to bad luck and also it's always during funeral services that people wear black. Red is supposedly the most auspicious colour for any happy events and celebrations.

While I am writing this article, I am day dreaming about how nice it would be if it only requires firecrackers and wearing red to chase the epilepsy beast out of me. Knowing very well that controlling seizures requires regular intake of anti epilepsy drugs (AED), I still splurge a small sum of Yuan to buy a red winter coat for my husband and myself. Like the saying goes, since we were in Gui Lin, we better do what the Gui Lin people do. I bought 9 one foot long firecrackers that cost me 9 yuan to burn at the park behind the hotel we stayed. Bang, bang, bang,bang,bang,bang,bang,bang,bang.......9 bangs which makes it three nines 999. The numbers three nines, according to Chinese belief, mean long life.

YAY.... Long LIFE to my husband, son and me. Long LIFE to my relatives and siblings. Long LIFE to my dear friends and supportive blog readers

Watching TV gives first aid clues

Scenes from TV make people think they can try first aid skills

Watching TV shows like Casualty and ER makes people confident enough to try and resuscitate people in real life, a survey has suggested.

The poll of just under 2,000 people found one in five would try.

A St John Ambulance spokeswoman said people should not be frightened of trying, even if they have only seen it done before on TV.

"If someone's not breathing, they're not breathing. If you don't do anything, they're still not breathing, but if you do something you will be giving them a chance."

Source: www.news.bbc.co.uk

Watching first aid programs in TV or videos does help to empower and increase one's confidence to help others in real life. Try watching some first aid guide videos for epileptics from YouTube. You will be of valuable help to people in a state of seizure.