THE LIGHT SIDE OF EPILEPSY

I live in a country that has a great diversity of people of all sorts of races. It is a very interesting country to live in. Has anyone watched an old British comedy serial called "Mind Your Language"? In the comedy, Mr Brown (an English Class teacher) had loads of problems trying to correct foreign students' wrong pronounciations of English words.

In my years of epilepsy awareness work I have heard the word Epilepsy misread/wrongly pronounced in funny accents and strange ways.

Here are some very common ones - Ee pee leep sy, Yap pee lep sy, E plip sy, Yab by lep sy, Yip pee lep sy, Hip py lep sy, Ee lip sy and Happy lepsy.

Add on to the list if any of you have heard of wierd/wrong pronounciations of the word Epilepsy.

Please note my sharing has no negative/offensive intentions towards people with epilepsy (PWE) or caregivers of PWE.

To everyone in the world who are mothers, mothers to be, grandmothers, mothers in law, god mothers, mothers who adopted babies, step mothers and all those who no longer have their mothers with them and miss their mothers very much.

The Claim: During a Seizure, You Can Swallow Your Tongue

By ANAHAD O’CONNOR

Published: April 22, 2008

THE FACTS

One problem with old wives’ tales and medical myths is that they can sometimes lead well-meaning people to do ill-advised things. Armed with the adage that people having seizures can swallow their tongue, Good Samaritans will sometimes try to force an object into the victim’s mouth to keep that from happening.

A persistent belief, experts say, but a wrong and potentially injurious one.

Swallowing the tongue is virtually impossible. In the human mouth, a small piece of tissue called the frenulum linguae, which sits behind the teeth and under the tongue, keeps the tongue in place, even during a seizure.

Ryan Brett, the director of education for the Epilepsy Institute in New York, said people who witness a seizure often reach for a wallet, a spoon, or a dirty object to stick in the person’s mouth, much to the chagrin of epilepsy patients. He said he frequently conducted first-aid workshops in which he had to disabuse people of the myth.

“The only thing that happens when something is put in the mouth is you end up cutting someone’s gums or injuring the teeth,” he said. “We get complaints all the time.”

The best way to help, instead, is to roll the person on one side to drain fluids from the mouth, cushion the head to prevent cranial injuries, and seek medical help if necessary.

THE BOTTOM LINE Never Place An Object In A Person’s Mouth During A Seizure.

ANAHAD O’CONNOR

scitimes@nytimes.com

Source: nytimes.com

High-Fat, Low-Carb Diet Cuts Seizure Frequency in Epileptic Kids

By Anna Boyd 10:40, May 3rd 2008

According to a study carried out at Great Ormond Street Hospital in London, a special high-fat, low-carbohydrate diet (also known as ketogenic diet) appears to cut seizure frequency in children with severe, drug-resistant epilepsy.

The ketogenic diet mimics the biochemical response to starvation, when compounds called ketone bodies (rather than sugar) provide the main source of energy for the brain. Ketone bodies are byproducts produced when fatty acids are broken down for energy in the liver and kidneys. They are used as energy sources in the heart and brain. Ketone bodies are a crucial source of energy when a person fasts.

For the study, Dr. J. Helen Cross of Great Ormond Street Hospital and her colleagues enrolled 145 children, ages 2 to 16, who were having at least seven seizures per week and who were not responding to anti-epileptic drugs. They were randomly assigned to receive the ketogenic diet or a normal diet for three months, after which those on the normal diet were switched to the treatment diet.

After several kids quit the study for various reasons, there remained 54 children in the diet group and 49 in the control group. At the end of the follow-up period, 28 of the 54 children in the diet group had a greater than 50 percent reduction in seizures, compared to 4 of 49 children in the control group. Also, 5 children in the diet group had more than 90 percent fewer seizures. None of the children in the control group experienced that kind of improvement.

Although the ketogenic diet had side-effects such as constipation, vomiting, lack of energy and hunger, the researchers suggested that it should be considered as a treatment, but they also cautioned that it should not be undertaken without “medical and dietetic supervision.”

"We have shown that the diet has efficacy and should be included in the management of children who have drug-resistant epilepsy. However, the diet is not without possible side effects, which should be considered alongside the risk-benefit of other treatments when planning the management of such children," the study authors concluded.

About one in 200 children is affected by epilepsy, which can often be controlled with regular drugs. The findings were more than welcomed by Epilepsy Action, a group dealing with this terrible illness.

“The results of this trial add valuable information to what is already known about the diet, presenting evidence that it works for some children with drug-resistant epilepsy. In addition to this, however, we also recognize that the ketogenic diet is not without its side-effects, and that the risks and benefits should be considered before prescribing, as with drug treatment,” a representative of the group said, according to BBC News.

Source : eFluxMedia

Dog Trained To Get Help For Epileptics

April 17, 2008

BY MONIFA THOMAS Health Reporter/mjthomas@suntimes.com

Eight-year-old Spencer Wyatt says having epilepsy doesn't interfere much with his day-to-day activities. But for his mother, Amy Wyatt, it's a constant source of stress, not knowing when Spencer's next seizure will come.
Says Wyatt: "I feel like I constantly need to be near him, because he can't call out for help."

» Click to enlarge image

Spencer Wyatt, an 8-year-old boy living with epilepsy, meets his new seizure response dog awarded by Canine Assistants.
(Al Podgorski/Sun-Times)

Spencer's new "seizure-response dog" should give his parents a little more peace of mind. Seizure-response dogs are trained to get help when their owners have a seizure. Some can even warn when a seizure is coming, possibly by sniffing out a smell epileptics give off before an episode.

Spencer's dog was a gift from Canine Assistants, a non-profit group that trains dogs to assist people with disabilities. There's been little research to prove that dogs can sense seizures in advance. But even the ones who don't have this skill can give their owners a sense of independence, Canine Assistants founder Jennifer Arnold said.

"I don't have to have other people staying with me all the time anymore, keeping an eye on me," said Mitch Peterson, of Downstate Monmouth. who has a seizure response dog named London. Peterson, who once fell down a flight of stairs during a seizure, said London is "right on top of it" when it comes to warning him about an episode.

The dogs take 18 months to train and would cost about $18,500. But Canine Assistants provides them for free. Spencer will go to a two-week training camp, where he will meet and then learn how to care for his "new best friend."

Source: http://www.suntimes.com/lifestyles/health/899443,CST-NWS-dog17.article

Drawn on 8 April 08 using Oil Pastel

LIFE IS BEAUTIFUL LIKE FRANGIPANI

The fact that I can plant a seed and it becomes a flower, share knowledge and it becomes another’s, help someone and receive help in return, are to me continual spiritual exercises. PWE (People With Epilepsy) are an interesting lot of people. Try interacting with them and you will be amazed at how normal or maybe even extraordinary they are. Explore their world for it is a world very much unknown, untapped and investigated.

There is a tendency that people in public shun PWE. On the other hand PWE mostly would not reveal their medical condition. So how can there possibly be any interaction between both the above. It is common sense that IT TAKES TWO. There ought to be probing and disclosure by both.

I discovered that a lecturer in New Zealand has epilepsy. In spite of his condition he travels to Asian countries to give talks about epilepsy. A PWE in US flew five different types of private planes last month. Another PWE in Canada had his own art exhibition for a month. His drawings sold into hundreds of thousands. A PWE had wanted to climb Mt Everest for epilepsy awareness.

Its amazing. Serene's Believe It Or Not.

IF YOU EVER MEET A PWE IT’S YOUR OPPORTUNITY TO DISCOVERY

PAIN TRIGGERS SEIZURES

Renee, my good and supportive friend whom I have come to know from an epilepsy forum has had seizures from the age of one. She has lived with seizures for 30 years. Renee’s seizures happen only when she suffers pain. It is rare to hear of pain triggering seizures. She is perfectly normal and doesn’t have seizures when not in pain. She puts in lots of efforts and time to visit her neurologist about her condition. Her medical tests results turned out normal and her doctor’s conclusion is she suffers from epilepsy. She is on AEDs ( Anti Epileptic Drug ) and the medications have helped her condition in a small way. The best way for her to be seizure free is to avoid pain by being extra careful in her life about everything and anything that could cause her pain.

Ever heard of such a trigger before? Renee will be very keen to hear from you if you happen to have the same type of trigger as hers. There could be more rare triggers out there that are unknown to us. Care to share your opinions?