EpilepsyInfo

National Epilepsy Week 2009 � taking action

Sunday 13 to Saturday 19 June 2010

The official dates for National Epilepsy Week 2010 have changed. National Epilepsy Week 2010 will officially take place from Sunday 13 to Saturday 19 June. Please note that this change is for one year only! The dates will revert to the third week in May from 2011 onwards.

The theme for this Epilepsy Week 2010 is 'young people', more details to be announced later!

OHTAHARA SYNDROME

David Cameron is the leader of the Tory Party in the U.K. and tragically his eldest son, Ivan, died yesterday, 25th February, aged six, 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. This website sends its condolences to Ivan's parents and all of his family.

MEDICAL NOTES;

What exactly is it?
Ohtahara syndrome is either inherited or develops as a result of brain damage before or during the birth. It is characterised by seizures which start in the first few days of life.
Some babies have as many as 100 of these seizures every day.

The Diet That Can Treat Epilepsy

Giving drugs to children with epilepsy is often ineffective and can have terrible side-effects. But there is an alternative - a high-fat food plan that dramatically reduces seizures.

Full article from the Guardian (UK) http://lifeandhealth.guardian.co.uk/wellbeing/story/0,,2273652,00.html?gusrc=rss&feed=networkfront

How is TV made safe for people with epilepsy?

Launch footage for the London 2012 logo sparked seizures, but how is
television checked for footage that could harm people with epilepsy?

http://news.bbc.co.uk/go/em/fr/-/1/hi/magazine/6728071.stm

Hard Choices: Whether and How to Address SUDEP With Epileptic Patients

Neurologists have always faced tough decisions when it comes to sudden unexpected death in epilepsy (SUDEP). Not the least of these is how to explain to bereaved family members what happened to their loved one and how it could have been prevented, because no one really knows.

However, recent research is shedding light on the factors that may put epileptic patients at increased risk for SUDEP. This knowledge is helping clinicians make better decisions about how much to tell patients and their families about this phenomenon.

Read the full article at: http://appneurology.com/article/showArticle.jhtml?articleId=188500759

ARE MMR (MEASLES,MUMPS,RUBELLA) JABS SAFE?

Robert Fletcher was a normal baby until he had his MMR (measles, mumps, rubella) triple vaccine at the age of 13 months - this was in 1992 after a Health Visitor had explained to Robert's mother about the new triple vaccine which prevented the diseases that could be fatal and assured her that it had been used in the US for 20 years without problems.

A month after his first birthday Robert had a devestating epileptic seizure. His parents then heard about other children who had also apparently reacted to the MMR jab, developing bowel disease, autism, epilepsy, arthritis and other conditions within 2 weeks of having the vaccination.

DRUG BOOST FOR YOUNG PEOPLE WITH EPILEPSY

(UK Daily Mail, October 5, 2007)

Thousands of children with epilepsy could benefit from the first drug ever designed for them, which can almost halve the number of seizures.

Unlike other treatments given to youngsters with epilepsy, Inovelon was not originally developed for adults.

Usually children with the condition are put on medication only tested on adults which is adjusted for their age and weight, but experts say the long-term safety of some drugs has not been properly assessed for youngsters.

Inovelon has been designed for children with a type of epilepsy called Lennox-Gastaut syndrome which causes 'Drop' attacks where sufferers fall to the floor during seizures.

Clinical trials showed the drug led to a 42.5 per cent reduction in the frequency of 'drop' attacks. It reduced the occurrence of all types of seizure by 32.7 per cent.

Launched in the UK today, the drug will be used to treat around 1,000 children with Lennox-Gastaut syndrome. It may also potentially help an additional 20,000 children with more common forms of epilespy. Inovelon is a one a day pill that costs £5 a day.

Mahjong game 'can cause epilepsy'

From the BBC:

A study by doctors in Hong Kong has concluded that epilepsy can be induced by the Chinese tile game of mahjong.

The findings, published in the Hong Kong Medical Journal, are based on 23 cases of people who suffered mahjong-induced seizures.

The report's four authors, from Hong Kong's Queen Mary Hospital, said the best prevention - and cure - was to avoid playing mahjong.

Full Story: http://news.bbc.co.uk/1/hi/health/6931119.stm

SMOKING AND EPILEPSY

A ban on smoking in pubs, restaurants, shops, workplaces etc. took effect on July 1st in England - on July 1st, Australia, which has been at the forefront of a near-global push for smoking bans for over a decade, saw a smoking ban take effect at pubs and clubs in two of Australia's most populous states. Ireland and other European countries have banned smoking indoors - while some parts of Canada and a number of US States have strict controls.

How does this effect people with Epilepsy?

There are, as with most things, differing opinions on the subject of smoking and epilepsy - the Epilepsy Organisation of Australia says:

"Nicotine is both a stimulant and a depressant to the central nervous system, there is no evidence to suggest that smoking cigarettes or cigars can trigger seizures in people with epilepsy"

Wyoming Epilepsy Organisation says - "Smoking cigarettes can also trigger seizures. The nicotine in cigarettes acts on receptors for the excitatory neurotransmitter acetylcholine in the brain, which increases neuronal firing".

There is however a warning from the Epilepsy Organisation of Australia who say;

"SOME NICOTINE PREPARATIONS USED TO HELP PEOPLE STOP SMOKING SHOULD BE USED WITH CAUTION AS THEY CAN HAVE A SIDE EFFECT OF CONVULSIONS. IF SOMEONE WITH EPILEPSY WANTS TO STOP SMOKING, BEFORE BUYING ANY NICOTINE PREPARATIONS, THEY SHOULD DISCUSS THIS FURTHER WITH THEIR DOCTOR."

LOW- ENERGY LIGHT BULBS 'CAN TRIGGER EPILEPSY'

Energy saving light bulbs can trigger epilepsy-like symptoms in sufferers of the condition, it revealed yesterday.

The bulbs - soon to be compulsory in homes - have caused dizziness, lightheadedness and other symptoms experienced in the early stages of a seizure. Judging by the number of complaints to charities and MPs, thousands may have already been affected.

In March the Government joined other EU leaders in agreeing to phase out incandescent bulbs from 2009. The low-energy versions last longer and cut carbon dioxide emissions. However, Health Minister Ivan Lewis said there has been 'no assessment' of the impact on epilepsy sufferers.

In answer to a parliamentary question, he admitted that the bulbs may also affect the 16000 Britons with lupus, an autoimmune disease.

It is unclear how the low-energy bulbs are triggering the symptoms as, though they do flicker, the rate is different to that usually associated with seizures. The answer may lie in the way the light is generated with light produced by low-energy bulbs having a different wave-length pattern.

In recent months Geoffrey Cox, Tory MP for Torridge and West Devon, has received around 20 complaints. He said 'If I have had 15-20 letters, there must be hundreds around the country affected - even thousands.'

A spokesman for the charity Epilepsy Action said it was investigating after receiving several complaints.