SERENE'S EPILEPSY LEGACY

2011-12-16T09:20:00.003+08:00

Treating Epilepsy While Pregnant

Epilepsy drugs have acceptable safety profile with pregnancy

It has been well established that there is a risk of birth defects in the baby for pregnant women taking the anti-seizure medication phenytoin. Newer anti-epileptic drugs are safer, and a new study aimed to confirm the data.

A study has now indicated that the newer anti-epileptic drugs - Lamictal (lamotrigine), Keppra (levetiracetam), and Topamax or Topiragen (topirmate) - pose no additional risk for birth defects as compared with traditional medications used to treat epilepsy.

Ask your specialists about medications and their effects on pregnancy.

The study was conducted at the University of Melbourne and led by Professor Frank Vajda. Prior to this research, data on the health and success of pregnancies among women using newer anti-epileptic drugs was limited.

The study analyzed data on pregnancy outcomes for 1317 women with epilepsy who used the newer drugs in the first trimester. These pregnancies were compared with those of women who used traditional anti-epileptic drugs - Di-Phen/Dilantin/Phenytek (phenytoin), Depacon (valproate), and Tegretol (carbamazepine).

The study also analyzed data on the pregnancy outcomes of a control group of untreated women.

The results showed no higher incidence of birth defects among women taking the newer drugs than among women taking traditional medications or among the control group. Rates of birth defects for each of the three newer medications were equal to or lower than the rate for the untreated control group (5.2%).

The most statistically significant correlation was the high rate of birth defects (16.3%) among women taking valproate.

This study should provide reasonable assurance to pregnant women that taking Lamictal, Keppra, or Topamax will, in all likelihood, not interfere with pregnancy.

The study was published on November 18, 2011 in the Journal of Clinical Neuroscience.

Source : dailyRx (Relevant Health News)

2011-12-06T18:29:00.007+08:00

Gelastic Epilepsy

Last updated 14 Jul 2009, review date due 10 Mar 2012

Gelastic epilepsy refers to a type of epilepsy, in which the seizures are 'gelastic', gelastikos being the Greek word for laughter. Gelastic epilepsy is very rare and occurs slightly more commonly in boys than in girls. Of every 1000 children with epilepsy, only one or at the very most, two children will have gelastic epilepsy.

Symptoms

Seizures may begin at any age but usually before three or four years of age. The seizures usually start with laughter and the laughter is often described as being 'hollow' or 'empty' and not very pleasant. The laughter occurs suddenly, comes on for no obvious reason and is usually completely out of place.

Sometimes older children may complain of a warning beforehand, although they are not always able to describe exactly what this warning is like.

To read more : http://www.epilepsy.org.uk/info/syndromes/gelastic-epilepsy

Epilepsy Awareness by Epilepsy Action UK

( I am not aware of such a form of epilepsy. Although it is a 1 or 2 in 1000 cases, it is still interesting and knowledgeable to read and know more about this type of epilepsy. Knowledge gained is always an asset, never a waste and may come in handy. We never know. - Serene )

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2011-11-18T12:29:00.006+08:00

Woman rescued after suffering epileptic fit in disused mine

A woman who suffered an epileptic fit while caving in a disused mine was carried to safety after a marathon six-and-a-half hour rescue mission. The woman was hundreds of feet underground with friends in Shropshire when the incident happened at around 9.30pm yesterday. West Midlands Ambulance Service said an ambulance, an incident support officer and the Trust's Hazardous Area Response Team (HART) attended the scene, at a disused mine in Snailbeach, near Minsterley.

A spokeswoman said: "The woman, believed to be 24 years old, had been enjoying her hobby of caving with a group of friends in the mine when she suffered an epileptic fit.

"Fortunately, the woman had medication with her for her epilepsy which the group quickly administered. Whilst some of the group stayed with the woman, others made their way out of the mine to dial 999 and await the arrival of ambulance crews at the entrance to the mine shaft."

The spokeswoman said it took the rescue team almost an hour of walking and climbing to reach the woman. She added: "Once with the patient, the HART paramedic assessed and stabilised her condition. As well as suffering several fits, the woman was complaining of pain in her back and side after reportedly slipping during the fit.

"The paramedic and mine rescue team immobilised the woman in a rescue stretcher and carried her to the bottom of The Chapel Shaft, which is about 300ft vertically up to the surface.

"A tripod rope system was set up at the surface and the woman was winched up with the doctor, a task which in itself took around 30 minutes.

"Once at the surface, the woman was taken to Royal Shrewsbury Hospital by land ambulance for further assessment and treatment.

"The whole rescue operation took six and a half hours."

Read more: http://www.mirror.co.uk/news/top-stories/2011/11/17/woman-rescued-after-suffering-epileptic-fit-in-disused-mine-115875-23568214/#ixzz1e1ohRFti

PS : Having read this news I am deterred from giving rock climbing a try. Though I can be a risk taker in many instances, to imagine myself suffering from an epileptic fit while dangling or plunging to death during an indoor rock climbing activity really scares me out of my skin.

Flashes of a past seizure that happened just at the edge of a descending escalator were enough to send shrivels down my spine. I cannot imagine what could have happened to me if I had taken a step or two down the escalator. Would I have survived that epileptic fall? Would I be critically injured? Whatever the outcome, only God knows and I like to acknowledge God spared me that possible near death or sudden death encounter ( Serene Low )

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2011-10-13T11:51:00.005+08:00

EPILEPSY SUPER HERO

Is it a bird? Is it a plane? Is it an alien object? Its " Epilepsy Super Hero Toteman" to the rescue !!!

Someone has a seizure in the busy street of downtown and Epilepsy Super Hero Toteman is there to help and rescue. People were helpless and fearful of the sight of an unexpected man fallen onto the street, stiff and foaming in his mouth. Many kept their distances away and many just watched in horror. Worse still, some were videoing the incident with their mobile phones as if it is a bizzare occurrence. Toteman takes control of the situation and did everything sensibly and correctly for the man in a state of seizure. The curious crowd praise Toteman for his heroic and life saving act.

It all sounds so cartoonish doesn't it? Well, the cartoon world has become a reality with a real Super Hero Toteman around to help out, educate and promote epilepsy awareness. I received an email from Toteman on the 28th of September asking me to assist him in his epilepsy awareness work by passing out words about it.

(Below is Toteman's email )

Serene,

I am hoping maybe you could help get the word out for my Epilepsy Awareness Comic Book. Please see my website for my Epilepsy Awareness Comic Book. There are free downloads of the comic. Lets help spread Epilepsy Awareness to children. Please pass this along and possibly make an entry of this. As Epilepsy Awareness month is approaching this would be a great entry for a blog.

I have worked with the Epilepsy Foundation of America and other Epilepsy Foundations in the United States.

www.toteman.net - Please visit Toteman at this link

For everyone who has read this posting, please take some time and make some efforts to help Toteman in his epilepsy promotion mission. You can spread this message by word of mouth or add a post of this same nature into your websites or blogs. Thank you very much.

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2011-09-15T15:33:00.008+08:00

Invite Your Local Epilepsy Organization to the Epilepsy Directory

Dear all,

I am assisting Jessica, my dear epilepsy activist friend, in spreading the message and awareness about epilepsy and the fantastic blog she has founded. Jessica has worked very hard to establish her blog " Living Well With Epilepsy " for the goodness of everyone. Her blog trumpets out loud about her goals to promote epilepsy awareness to great heights. For her great efforts, we should not just applaud her but also join forces with her to further strengten her existing strong and united network of epilepsy webs, blogs and organisations.

Below is Jessica's appeal to everyone.

November is Epilepsy Awareness Month and it will be here before we know it. Since you have added your site to the Living Well With Epilepsy Directory I'm reaching out for your help. I would be thrilled if you would reach out to your local epilepsy awareness organization to encourage them to add their link to the directory. Below I have included sample email text that you can use to reach out to your local affiliate.

" Dear Epilepsy Organization:

November is Epilepsy Awareness Month and it will be here before we know it. I know we are all trying to get the word out about epilepsy and maximize resources. So, I wish to let you know about an online directory that has been effective in driving traffic to my own epilepsy awareness site.

Jessica Keenan Smith, the founder of Living Well With Epilepsy, hosts a directory of epilepsy websites, blogs and organizations. I encourage you to add the URL to your website, blog, vlog, or even a podcast. Just use the simple linky tool provided on the site and add. Your organization will be instantly added to the directory. You will find an increase in traffic to your site and also gain additional outreach.

I have provided the URL for your convenience : http://jessicaksmith.blogspot.com/p/epilepsy-directory.html

If you also know of a site that should be listed but do not own the site, feel free to forward the directory address. The organization can add their URL when they have a moment.

Thanks for your help in spreading the word about epilepsy. "

Thanks for YOUR help in spreading the word. The more organizations we can add to the directory the better! One last thing, if you have a moment please vote for Living Well With Epilepsy as a Parents Magazine's Best Blogs.

To Vote:

http://blog-awards.parents.com/blog-awards/mom_blogs/831-living-well-with-epilepsy

Thanks all! Best to you and yours.

Jessica

______________________________

Jessica Keenan Smith

Email: jessicaksmith72@gmail.com

Blog: www.livingwellwithepilepsy.com

Twitter: @jessicaksmith

Facebook: Living Well With Epilepsy

SheWrites: Jessica Keenan Smith

Linkedin: Jessica Keenan Smith

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2011-08-15T14:21:00.006+08:00

NATIONAL HEALTHY BONES WEEK ( 1^st to 7^th August 2011 )

Established in 1994, National Healthy Bones Week (NHBW) is a national campaign coordinated by Dairy Australia that acts to highlight the important role dairy foods and the nutrients they contain, can play in the development and maintenance of healthy bones and prevention of osteoporosis.

In 2011 National Healthy Bones Week will focus on the importance of a calcium-rich breakfast for bone health. This follows a new Australian study which showed children who skipped breakfast were less likely to meet the dietary recommendations for dairy foods such as milk, cheese and yogurt, which are the major contributors of calcium to the diet.

Why is calcium important?

Calcium is essential for building and maintaining strong bones. It combines with other minerals (like phosphorus) to form hard crystals that give bones their strength. Because our bodies can’t make calcium, it must come from our diet. If we don’t eat enough calcium-rich food, calcium will be taken from the bones to be used for other body functions, and over time bones will become weak and brittle leading to a disease called osteoporosis. This is why it is so crucial to have a daily supply of calcium-rich foods throughout life.

P M 24 ( L’ART DE LA ROTISSERIE )

P M 24, Philippe Mouchel at 24 Russell Street is a one of a kind modern French Bistro and Rotisserie. With its fresh, contemporary take on French cuisine, and modern warehouse setting with lofty ceilings, the venue is both inviting and energized.

On the 3^rd of August 2011, my son and I woke up at 7 am to the cool morning crisp air of Melbourne to start our morning walk to P M 24. After a twenty minutes walk from where we live, we were warmly invited into P M 24 by two friendly staff. In conjunction with National Healthy Bones Week, P M 24 was offering complimentary calcium-rich breakfast for anyone who turned up at its venue from 7.30 am till 9.30 am.

The smell of hot chocolate, cappuccino and latte was so enticing that we helped ourselves to a latte each. My son also got us a bottle of yogurt each with two bars of chocolate coated muesli. As I was enjoying every sip of my latte, I noticed three chefs behind the coffee bar busying preparing something that looked like sandwiches. I was right. We had a sandwich each made out of two pieces of white bread, two layers of cheese and a yummy healthy piece of ham baked in an oven. Ooooo!!!…wowwww!!!…deliciousssssss…..set of calcium-rich breakfast indeed for anyone to start off their day and naturally to keep their bones packed with needed calcium.

We now know why calcium is important to our bones. Apart from having the right diet rich in calcium, exercise and vitamin D are also equally important to maintain healthy bones. Vitamin D can be derived from supplements or from exposure to sunshine. Exercise can be in any form.

Generally, all people with epilepsy will suffer calcium loss in bone faster than people without epilepsy. The reason for this is because all anti epilepsy drugs have side effects especially calcium depletion. So, children and elderly people with epilepsy need higher intake of calcium for growing bones and prevention of breakage of brittle bones. In my case, I have not failed to pop my daily dose of 2 tablets of liquid calcium + vitamin D to maintain my bone condition which was diagnosed as osteopinia.

Thank you very much for the excellent calcium packed yummy breakfast compliments from P M 24. This healthy bone awareness week is a fabulous way of promotion of intake of calcium. I hope everyone and other countries will also follow this concept of promotion.

2011-06-28T11:39:00.003+08:00

Foetal epilepsy drug danger shown

The risk posed to unborn children by powerful epilepsy drugs could be easier to avoid, following an 11-year study. While the four most common drugs are all linked with a higher chance of birth defects, researchers believe they have pinpointed the safest.

The 3,900 patient study, published in Lancet Neurology, could help doctors work out whether to switch drugs or cut doses. The Epilepsy Society said avoiding seizures in pregnancy was a priority.

The link between epilepsy drugs and birth defects was first noticed in the 1960s, but choosing the right drug for women of childbearing age without exposing them to the risk of seizures can be a balancing act for doctors. Simply taking a patient off medication entirely is not usually an option, as uncontrolled seizures could harm both baby and mother.

Earlier studies have highlighted valproic acid as the drug most linked to birth defects, but there has been little information as to the safety of alternatives. The latest research, from the Karolinska Institute in Sweden and the University of Pavia in Italy, also looked in detail at other drugs such as carbamazepine, lamotrigine and phenobarbital. Researchers studied 3,909 women and 4,540 pregnancies. Of those, there were 230 pregnancies involving major birth defects, including heart defects and neural tube defects such as spina bifida.

None of the major drugs was given the all clear, and as the dose of each increased, so did the risk. However, the lowest risk was linked to smaller doses of lamotrigine and carbamazepine.

The researchers stressed that, regardless of which drug was used, the vast majority of women still gave birth to perfectly healthy children. They added: "Our results show that dose selection is as crucial as the choice of drug."

In an editorial in the same journal Professor W Allen Hauser, from Colombia University in New York, said that the findings were "important" because they offered alternatives to the drugs linked most strongly to problems. He said: "The data provide another reason for use of the lowest dose of a drug associated with optimum seizure control.

"Incidence of major congenital malformations associated with a low dose of a higher risk drug might be lower than that associated with a high dose of a lower-risk drug."

Professor John Duncan, Medical Director at The Epilepsy Society, said that the results would be useful to GPs with a specialist interest in epilepsy and hospital neurologists, both of whom would be well placed to offer advice to women. But he warned that controlling seizures should remain a priority, even during pregnancy: "It should be remembered that a lot of women have epilepsy, and it is not an uncommon cause of death during pregnancy.

"This research helps to clarify the extent of the risks involved with these drugs - and all drugs carry some degree of risk."

2011-05-16T15:16:00.003+08:00

Ketogenic Diet Gains Popularity in Treating Epilepsy

Related articles: Health > Western Medicine

HIPPOCRATES: He cured epilepsy with diet and fasting. (Engraving by Peter Paul Rubens, 1638, courtesy of the National Library of Medicine.)

The ketogenic diet, a high-fat, adequate-protein, low-carbohydrate diet, is regaining popularity to treat difficult-to-control epilepsy, particularly in children.

The classic ketogenic diet contains a 4:1 ratio by weight of fat to combined amounts of protein and carbohydrate. The diet has proven to be effective in half of the patients who try it and very effective in one-third of the patients. It has given new hope to parents whose epileptic children status couldn’t be improved by anticonvulsant medication.

After stroke, epilepsy is one of the most common neurological disorders. It is estimated that if affects 50 million people worldwide. Most people with epilepsy can successfully control their seizures with medication. However, 20 to 30 percent fail to do so despite trying different drugs. Particularly for them, the diet is proving valuable in epilepsy management.

Knowledge about this diet isn’t new. Ancient Greek physicians treated diseases, including epilepsy, by altering their patients’ diets. In the book “Epidemics,” Hippocrates describes the case of a man whose epilepsy was cured with drastic diet and fasting.

Erasistratus, a Greek anatomist and royal physician under Seleucus I Nicator of Syria, stated, “One inclining to epilepsy should be made to fast without mercy and be put on short rations.”

In modern times, the first study of fasting as a treatment for epilepsy was conducted in France in 1911. A few years later, an osteopathic physician named Hugh Conklin from Battle Creek, Michigan, treated his epilepsy patients with fasting and obtained very good results.

Because he believed that epilepsy was caused by a toxin produced in the intestines, he recommended a fast lasting 18 to 25 days and a “water diet” to allow the toxin to be eliminated from the body.

In 1921, Dr. Rusell Wilder, at the Mayo clinic, coined the name ketogenic diet, based on previous research, to describe a diet that produced a high level of compounds called ketones in the blood through a diet consisting largely of fat and lacking in carbohydrate.

During the 1920s and 1930s, when there were only a few effective anticonvulsant drugs, this diet was widely used and studied to treat epilepsy. In 1938, with the discovery of phenytoin, an anticonvulsant drug, the focus changed to the development of new compounds of this kind.

The ketogenic diet has had a revival in recent times after it was found that children with difficult-to-treat epilepsy were more likely to find relief with the ketogenic diet than to benefit from trying a different anticonvulsant drug.

There is now evidence that adolescents and some adults can also benefit form this diet. However, children with a focal brain lesion are more likely to become seizure-free with surgery than with the ketogenic diet.

Although it can be very effective, the ketogenic diet may have complications. About 1 in 20 children on the ketogenic diet will develop kidney stones, which can be prevented to a certain extent by providing some specific supplements. In adults, common side effects include weight loss and constipation.

In addition, the diet can present some difficulties to caregivers and to the patients due to the time commitment involved in planning meals and measuring the ingredients, particularly because a strict adherence to the dietary plan is required.

However, since the diet can provide a cure to children without the use of dangerous drugs, it is an approach worth taking when dealing with this serious disease.

Dr. César Chelala is an international public health consultant.

2011-04-25T23:27:00.005+08:00

Hundreds Take Epilepsy Test In Gulu

Tuesday, 19th April, 2011 (By Chris Ocowun)

HUNDREDS of people, including children and elderly patients with signs of epilepsy, have flooded Gulu regional mental health unit for neurological examination.

The tests will be done by five neurological doctors from Germany and Austria.
The doctors hope to examine over 1,000 epileptic patients in Gulu, Moyo, Adjumani and Kitgum districts.

Neurocysticercosis is a leading cause of seizures and epilepsy in the developing world.

The head of the neurological doctors, Andrea Winkler, yesterday told journalists at the health unit that they would spend two weeks conducting tests in northern Uganda.

“We are here to examine patients and decide on the treatment. About 300 of those found with epilepsy fits will be taken to Mulago Hospital for Computerised Tomography (CT) scan,” she said.

Winkler said the prevalence of neurocysticercosis was high in sub-Saharan African countries like Uganda, Tanzania and Zambia.

“We want to know the prevalence of those who suffer from neurocysticercosis, which is caused by the pork tapeworm in the brain of a person. You can get cysticercosis from infected pigs, poor hygiene and undercooked pork,” Winkler explained.

“The symptoms of this illness are caused by the development of characteristic cysts, which most often affect the central nervous system (neurocysticercosis), skeletal muscle, eyes, and skin. Many individuals with cysticercosis never experience any symptoms,” Winkler added.

According to Winkler, cysticercosis is caused by the dissemination of the larval form of the pork tapeworm, taenia sodium.

She said when the eggs of taenia sodium are ingested by humans, they hatch and the embryos penetrate the intestinal wall and reach the bloodstream.
The formation of cysts in different body tissues leads to the development of symptoms, which vary depending on the location and number of cysts.

Winkler disclosed that humans are the host for taenia sodium, saying they may carry the tapeworm in their intestine, often without symptoms.

She said neurocysticercosis is treatable using anthelmintic drugs. Winkler added that they are working in collaboration with Gulu University faculty of medicine to carry out neurological examination of patients with epilepsy.

She said cysticerrcosis can be prevented through public education, avoidance of raw or undercooked pork and good personal hygiene among other ways.

Paul Aluma, a psychiatric at Gulu regional mental health unit blamed the high rate of epilepsy attacks in the region to the LRA war.

2011-03-27T20:54:00.001+08:00

Epilepsy killed celebrity polar bear Knut

Knut (above), the celebrity orphan polar bear who drew thousands of visitors to Berlin zoo, died after an epileptic fit, according to neurologists quoted by Focus magazine. -- PHOTO: AFP

FRANKFURT - KNUT, the celebrity orphan polar bear who drew thousands of visitors to Berlin zoo, died after an epileptic fit, according to neurologists quoted by Focus magazine.

A CAT scan had revealed abormalities in the brain of the bear, who may have inherited epilepsy from his father Lars, also a sufferer.

Four year-old Knut, who won global fame as he grew from a cute cub but grew into a 200kg predator, died in front of horrified visitors at the zoo last weekend.

Neurologists said the fit was triggered by a brain disorder yet to be identified. The magazine said Knut's brain is now being studied at the Leibniz Institute for Zoo and Wild Animal Research (IZW). Knut shot to fame when he was rejected by his mother and was hand-reared instead by his keeper Thomas Doerflein.

Visitors came to watch keeper and cub playing together. The German post office produced a stamp in Knut's honour and the bear appeared on the cover of numerous publications, including the German edition of Vanity Fair. -- REUTERS

2011-02-01T15:38:00.002+08:00

A COLORFUL LIFE WITH EPILEPSY

"I shuddered at thoughts of having to take anti epilepsy drug (AED) to control seizures for a lifetime. The side effects of all these chemically produced drugs with some toxic levels would destroy my health into crumbles beyond repair or even kill me first before seizures could. That being the case, I'd prefer a seizure filled life without AED." These were my thoughts and fears when I was told to take AED for life at an age of 18. Today, 33 years down the road, I am still alive and reasonably healthy after taking AED.

By now, needless to say, any possible side effects of AED could have taken toll on my health. Some friends have been advising me to watch out for my colon, kidneys, heart and liver. With so much toxicity in my body, they said I ought to go for some detoxifying course, engaging in chi exercises, taking more supplements like calcium and multi-vits, etc, etc.

In my opinion, I think it is not only me, a person with epilepsy at my age who has to guard my health in all ways. Taking good care of our health is something everyone should do regardless of age and state of health. And also, whether one has epilepsy or any other illnesses, one must always seek proper treatment and follow doctors' advices.

My advice to newly diagnosed people with epilepsy is never fail to keep up with neuro's appointments and always remember to take AED as prescribed. Adopt positive attitudes and outlooks of life. Live life as normal as you can and challenge yourself to always live life to it's fullest.

My life with epilepsy has been purposeful, meaningful, artful and beautiful. What about yours? Care to share it here with me?

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2010-11-10T21:54:00.002+08:00

Epilepsy man's 'thank you' for help during fit

By Stephanie Jones-Berry
November 10, 2010

A PENSIONER who had an epileptic seizure in Guildford town centre while waiting for a bus now wants to thank the people who came to his aid.

Graham Block, 71, had been visiting the RHS Wisley gardens to see the autumnal colours when a delay meant he arrived at the Friary bus station at 4.15pm last Wednesday (November 3), with an hour to wait for his next connection.

By 5.30pm, Mr Block’s usual bus had not arrived and the seizure hit as he was asking a member of staff what was happening. Mr Block said: “The lights were very bright, so I had a blackout. Bright lights, stress and camera flashes can bring on my blackouts. When this one came on I couldn’t get outside in time. I felt it coming on and got out my special card that I carry in different languages explaining my condition. A young lady and a bus inspector who were there were very concerned. The bus inspector arranged a bus to take me home to Wood Street. I just want to thank them both.”

The former insurance clerk has suffered with epilepsy since the age of 24 but said that in recent years the condition had become more manageable. He said: “I have had epilepsy for the past 47 years and in the last few years it has faded away. I used to have big fits, preceded by blinding flashes but I have learned to read the signs and now can usually get out in time to stop it happening. I still can’t go out in the evening – even a church hall has lights that are too bright.”

Louise Whalley, from charity Epilepsy Action, said: “We’re delighted to hear that people in the local community assisted someone who was having an epileptic seizure in public. It’s clear that the epilepsy awareness information this man was carrying was vital in getting him the help and support he needed. Carrying medical ID lets people know what to do in case of a seizure and informs medical professionals that a person has epilepsy. We would recommend that all people with epilepsy carry a medical awareness card with them. They may also want to consider wearing identity jewellery.”

Mr Block believes his condition may have been triggered by playing lacrosse as a young man. His wife, Janet, helps him to manage his medical condition as she is able to read the signals as well. Mr Block said: “She makes me go outside. Every Saturday we go to the supermarket and I often have to stand outside.”

Epilepsy Action provides a range of epilepsy awareness cards free of charge from www.epilepsy.org.uk/shop .

source :www.getsurrey.co.uk/news

2010-11-04T08:13:00.003+08:00

CHILDREN WITH EPILEPSY

Parents often feel frightened when they hear that their child had epilepsy. However, anticonvulsant drugs can prevent the occurrence of seizures in 75 percent of epileptic children. In the past, those diagnosed with epilepsy were thought to need lifelong drug treatment to prevent their seizures. The treatments used often had adverse side effects that precluded them from participating in normal social activities. However, new treatments and therapy protocols are available today. Ask your child's physician about any new options available for treatment.

Not Necessarily a Life Sentence

Today, pediatric physicians encourage children taking anticonvulsant medications, who have not experienced seizures for two years or beyond, to gradually reduce the dosage of medication to zero. Seventy-five percent of these experience indefinite freedom from seizures. Of these, a few have a chance of never having another seizure, while others have a 50 percent chance of having a future epileptic event. Only your child's physician can determine whether it's safe to taper off anti-epileptic medication, but if your child has been seizure free for over two years, ask your physician about this option.

Effective Treatment for the Most Common Type of Epilepsy

While childhood epilepsy occurs in many forms, the most common is absence epilepsy. With absence epilepsy, the child exhibits frequent episodes in which he will stop his current activity and stare blankly for 30 seconds or less. He then resumes the activity with no confusion and no recollection of the event. Until recently, physicians were uncertain as to which anti-epilepsy drug worked best to control this type of the disorder. The results of a clinical trial, managed by NIH Childhood Epilepsy Study Group, were released in March 2010. The study revealed that the drugs Zarontin and Depakote, ethosuximide and valproic acid respectively, are significantly more successful in controlling the seizures associated with absence epilepsy than others.

When Anticonvulsant Therapies Fail

Although anticonvulsant therapy can successfully control the seizures of 75 percent of epileptic children, this leaves a significant number of children for whom medication is not effective. These children continue to have several seizures on a daily basis despite medications, or suffer from debilitating side effects from the anticonvulsant drugs. While not new, treatment approaches do exist for these patients. One option involves surgery, which inactivates or removes the area of the brain that causes the seizures. The other requires that the child adhere to a high-fat diet that highly restricts carbohydrates for two years. After two years, the child can begin to gradually add carbohydrates back into his or her diet without the occurrence of seizures. While neither of these approaches is new, they represent valid options when others fail. Your child's doctor can determine whether he or she is a good candidate for these therapies.

Prognosis for Children With Epilepsy

Children with idiopathic epilepsy, epilepsy of an unknown cause, have a better chance of controlling their seizures with medication and going into remission as they approach adulthood. Approximately 40 percent of those with absence and benign epilepsy types outgrow the disorder. Even those with more severe classifications of epilepsy, which they are unlikely to outgrow, can often live active, normal lives with consistent and appropriate treatments.

Researchers and scientists regularly conduct clinical trials investigating new therapies and treatments for both children and adults with epilepsy. These include pharmacological treatments as well as investigations into possible environmental and genetic causes of the various classifications of epilepsy.

A Parent's Role in Seizure Management

Parents play a significant role in helping their epileptic child attain success in controlling seizures. Certainly this involves making certain medications are taken on schedule and in prescribed amounts. But parents must also provide moral and emotional support for their epileptic child. They can achieve this by educating the child about the disorder and helping him participate in appropriate social and physical activities to promote a feeling of normalcy and belonging.

2010-10-11T21:50:00.004+08:00

8TH ASIAN & OCEANIAN EPILEPSY CONGRESS
Melbourne, 21st till 24th October 2010

The 8th Asian & Oceanian Epilepsy Congress (AOEC) which will take place in the exciting city of Melbourne, Australia from October 21st - 24th, 2010. This Congress has been organised by the regional organisations of the International League Against Epilepsy and the International Bureau for Epilepsy.

Read more at http://www.epilepsymelbourne2010.org/

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2010-09-26T17:37:00.004+08:00

QUICK TO COMMENT ABOUT EPILEPSY

An acrylic painting done by me titled "Hidden"
(Look for the hidden epileptic face)

Ever so often whenever I mention to someone I have epilepsy, almost all the time, I get this similar reply, " Oh! Epilepsy! I know what's that and what is the big problem/issue? You fall down for a while, bite your tongue while saliva foam from your mouth and within minutes you are up on your own, back to your normal self ". Having said that, these people tend to give me wondering and puzzled stares as if to tell me indirectly I shouldn't be worried or upset over having epilepsy. It's a minor and no fuss thing. These people think there is only one type of seizure which is tonic clonic (grand mal) that always have someone falling down in a state of seizure. They are definitely wrong because there are so many different types of seizures that can be categorized and sub categorized under grand mal and petite mal.

The whole thing boils down to these people not being in my medical shoes. And then they most probably never have thought of what if one day they themselves should develop epilepsy out of the blue. By not having epilepsy themselves, it is so easy for them to turn a blind eye and care less about the sentiments of people with epilepsy (PWE) and their carers. Must these people wait to be stricken with epilepsy in order to start finding out what it is all about? And having to live with epilepsy themselves to have a better knowledge and understanding of their fellow PWE?

These people should not be reckless to simply comment about something they have shallow or wrong knowledge about. I am always irked and put off by these peoples' insensitivity towards the feelings of PWE. If they know nothing about epilepsy, have a lot of uncertainties about epilepsy or have little to comment about epilepsy, it is best they learn to ask a PWE what epilepsy is all about. And if they can, bear the word "Epilepsy" in mind and do some finding and reading about it before they go round telling and describing wrong things about epilepsy.

Epilepsy awareness is so lacking in almost all places of the world. When PWE together with their carers, doctors, health experts and epilepsy advocates are trying their hardest to promote and increase awareness of epilepsy, NO THANKS to these misleading and heartless people who are wreaking much havoc to the success rate of epilepsy awareness.

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2010-09-18T14:09:00.003+08:00

Advanced acoustic monitor detects breathing difficulties

Epilepsy sufferers who risk suffocation during a seizure could be saved with a new small acoustic detector worn on the neck.

The device, which has been developed through the work of Dr Esther Rodriquez Villegas of Imperial College and Prof John Duncan of University College London, is being launched through a new Imperial Innovations venture.

According to Ervitech, the company behind the device, the instrument addresses the limitations of earlier acoustic breathing monitors by removing interference from background noise, speech and internal sounds such as heartbeats. These advances allow Ervitech’s device to achieve similar accuracy to other techniques that use expensive and bulky monitoring equipment.

Prof Duncan explained the 2cm by 1cm device, which is currently in prototype stage, incorporates a small microphone that detects airflow up and down the trachea of a patient. A microchip processes the acoustic signal and determines whether or not there has been a breath. A small radio transmitter beams the information to a base station that could be on a bedside table.

‘The signal could also be used to alert any number of mobile phones,’ he said.

Prof Duncan, who is a researcher of neuroscience, added that the prime motivation for the device was finding an appropriate health monitoring solution for patients with epilepsy. ‘We wanted to have a device that could reliably detect apnoea and to be able to do that in and out of a hospital environment,’ he said. ‘For some conditions, particularly epilepsy, somebody may have a sudden interruption of breathing that may kill them unless somebody’s on hand to resuscitate them.’

According to Prof Duncan, the device would be particularly helpful at night because it could alert a sufferer’s caregiver or partner, who might otherwise be asleep, if there is a problem.

The Ervitech team is currently conducting clinical trials of the device with patients who suffer from breathing disorders such as sleep apnoea. Prof Duncan said: ‘We’re just making sure it can detect different types of apnoea and also that it doesn’t have false positives.’ Assuming the results are comparable to ‘gold standard’ hospital breathing monitors, Prof Duncan said the Ervitech device could be widely available within two years.

2010-08-19T16:39:00.004+08:00

IT IS IMPORTANT TO BE PART OF AN EPILEPSY SUPPORT GROUP

I recall the good and happy days when I was an epilepsy support group co ordinator in our local epilepsy society. My friends and I looked forward to meeting up, telling and updating each other about our epilepsy condition. We were a small group which made sharing very easy and quick. We uplift and inspire each other to live life bravely and normally, doing everything as any normal being would want to despite our odds.

We talked constantly about the challenges that epilepsy threw on us and how each one of us intended to outdo and defeat it successfully. We also had our once a month small "eat-out" gathering at our regular gazebo located in a park. Each of us brought our contribution of food, snacks and drinks. At the shady green scenic spot, we were a merry lot. Sweet, splendid, happy and meaningful moments were exchanged, shared and treasured in our minds and hearts.

I have not been around in the epilepsy support group for coming close to 3 years because of family commitments but the moment situation permits I will be running back to it again.

Are you part of any epilepsy society near you? Do you join any as a member and involve yourself actively in it's programs and activities? If there isn't any epilepsy society near you, do you bother to sign up and register yourself as a member of one or more epilepsy societies on the internet? If you have not done any of these, do it now. Why wait? It is all for your own benefits that you become part of one. After all, epilepsy is about breaking free from shadows, fears, barriers and darknesses.

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2010-08-05T09:07:00.007+08:00

Solving the mystery of bone loss from drug for epilepsy and bipolar disorder

Scientists are reporting a possible explanation for the bone loss that may occur following long-term use of a medicine widely used to treat epilepsy, bipolar disorder, and other conditions. The drug, valproate, appears to reduce the formation of two key proteins important for bone strength, they said. Their study, which offers a solution to a long-standing mystery, appears in ACS' monthly Journal of Proteome Research.

Glenn Morris and colleagues point out that use of valproate, first introduced more than 40 years ago for the prevention of seizures in patients with epilepsy, has expanded. Valproate now is prescribed for mood disorders, migraine headache, and spinal muscular atrophy (SMA), a rare genetic disease that causes loss of muscle control and movement. Many SMA patients develop weak bones as a result of the disease itself, making further bone loss from valproate especially undesirable. Doctors have known about the bone-loss side effect, but until now, there has been no molecular explanation.

In an effort to determine why bone loss occurs, the scientists profiled valproate's effects on more than 1,000 proteins in the cells of patients with SMA. They found that valproate reduced production of collagen, the key protein that gives bone its strength, by almost 60 percent. The drug also reduced levels of osteonectin, which binds calcium and helps maintain bone mass, by 28 percent. "The results suggest a possible molecular mechanism for bone loss following long-term exposure to valproate," the article notes.

2010-07-24T08:59:00.003+08:00

6-year-old with Epilepsy wants to help others like her

By Kristin Bien (kbien@wsbt.com)

Lyla Pratt serves up another glass of her lemonade to a garage sale customer. All benefits go to the Epilepsy Foundation. (WSBT photo)

NEW CARLISLE — Thousands of shoppers are heading to New Carlisle this weekend for Hometown Days, and there's a sale that's hard to pass up. It's a six-year-old entrepreneur with an old fashion lemonade stand. Lyla Pratt came up with the idea all on her own, and every penny she earns this weekend is going to a special cause — the Epilepsy Foundation.

"She has Idiopathic epilepsy which means they cannot find a cause for it, says Katie Brasseur. Katie Brasseur, Lyla's mom, says she was a normal baby until she was three. That was when she had her first seizure. You would never know by looking at her, but Lyla has some major health issues. So she is more susceptible to getting sicknesses, illnesses, bacteria in her system, she is frequently sick more. Which leads to her febrile seizures which causes problems with her development," says Brasseur.

That is why all the money earned at the garage sale this weekend will go toward treatment which in many cases is not covered by insurance. Lyla is doing her part too. She has set up a lemonade and cookie stand in the front yard. All the money she makes this weekend, will go toward the Epilepsy Foundation.

"She knows she has seizures and she asks will her brain get better sometimes. That is why she is doing the lemonade and cookie stand. She wants to donate to the Epilepsy Foundation she said, she says she wants to donate for kids with brains like hers," says Brasseur. Lyla has overcome a lot in her six years. But she has a long way to go.

"Epilepsy is dangerous and it can be deadly. In 2008 she was in postictal mode for about 24 hours. That is when she had a relearn how to potty train everything," says Brasseur. But her mom is not giving up. And neither will Lyla.

The garage sale and snack stand will continue through Sunday 8 a.m. until 6 p.m. Central Time

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2010-07-14T10:36:00.003+08:00

EPILEPSY AND PREGNANCY

A Litany of Depakote Birth Defects that Are Not Fetal Alcohol Syndrome

July 13, 2010. By Jane Mundy

Seattle, WA: When Cindy was a teenager, she was diagnosed with epilepsy. Her neurologist prescribed Depakote. "I became pregnant and wasn't told to stop taking the medication," she says. "My first child was born with a heart malformation and my second child was recently diagnosed with fetal alcohol syndrome, but I didn't drink when I was pregnant."

Cindy (not her real name) says her daughter was diagnosed with fetal alcohol syndrome because "she has six of the 10 facial characteristics" that define the syndrome. Sonja, another mother who took Depakote while pregnant, was also told that her son had fetal alcohol syndrome—but Sonja doesn't drink at all. Could other doctors mistakenly diagnose Depakote birth defect cases for fetal alcohol syndrome?

There is a litany of adverse events possibly connected with Depakote.

Susan (not her real name) has an eight-month-old son with an underdeveloped right ear. "He has no ear canal and is deaf in that ear and one side of his face is larger than the other," she says. Her son has craniofacial microsomia, a congenital disorder that typically affects the development of the lower half of the face, including the ears. It can lead to breathing difficulties and is the second most common facial birth defect after clefts.

Two other mothers reported that their children were born with cleft palates. "I took Depakote for seizure disorder before and during pregnancy," says Denise. "My baby was born with a soft cleft palate. He needed soft cleft palate repair surgery in 2008 and currently has a delay in speech development."

Kimberly says: "I was being prescribed Depakote for epilepsy and when I became pregnant I was taking 1500mg a day. When I phoned my doctor's office to tell him I was pregnant, he instructed me to continue the drug. A few weeks later I had a miscarriage."

Since Depakote was approved in 1983, the FDA has received six cases of developmental delays, including two siblings reported to have autism. The agency reviewers said it "raises concerns" (6/26/09), but then added, "Further study is needed to further elucidate causality and degree of risk of fetal exposure to (Depakote) and subsequent developmental delay in children."

The drug carries a black box warning alerting users to potential birth defects. Yet a recent study found that "Sodium valproate exposure during pregnancy more than doubles the risk for a major congenital malformation (MCM) in the fetus compared with carbamazepine or lamotrigine," which are also anticonvulsants frequently prescribed for seizures (July 2010: the UK Epilepsy and Pregnancy Register and preliminary results from the European and International Registry of Antiepileptic Drugs in Pregnancy).

The FDA recently sent a letter to neurological and obstetric health workers warning that valproate sodium (marketed as Depacon), valproic acid (marketed as Depakene and Stavzor), divalproex sodium (marketed as Depakote, Depakote CP and Depakote ER) and related products have been shown to increase the risk of cardiovascular malformations, craniofacial defects, neural tube defects and other major birth defects when taken by pregnant women.

Because neural tube defects often develop before a woman even knows she is pregnant, the FDA issued a further warning in December 2009 to "women of childbearing potential." But what about all the women like Cindy who took Depakote before knowing they were pregnant? Those women who were never warned about Depakote and never given the option of taking carbamazepine or lamotrigine?

I was one of these pregnant women who was prescribed a high dose of valproate sodium by my neurologist when I was pregnant. I wonder if it was known or unknown to my neurologist of the potential variable birth defects that could possibly be caused by depakote when he was increasing my depakote intake. He reasoned that it was apt to increase dosage strength to curb chances of seizures happening during pregnancy and since depakote had controlled my seizures well, a need to change my anticonvulsant drug was not deliberated. Thankfully my child was born normal.

Whilst it is important for neurologists to help epileptics lead well controlled seizure free lives by prescribing appropriate AED drugs, it is also pertinent that neurologists make known side effects of drugs to patients. On patients' part, patients must ask neurologists about pros and cons of drugs prescribed, read instructions and labels on packing of drugs and search/read up more information about drugs which can be obtained from medical websites, yahoo and google searches.

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2010-07-07T10:08:00.007+08:00

Young And Dynamic Epilepsy Advocate

Amanda is 17 years old. She has epilepsy for the past 5 years and she handles her condition with great courage and determination. She is a fine example of a teenager with epilepsy who does not allow seizures to affect her life in any way. She has a very inspiring blog about her condition and would love everyone to visit her and share their views and comments with her.

( Below is the introduction of her blog )

Dear Readers,

This blog is about my personal struggle and experiences with Epilepsy over the last 5 years. I will be writing to you about what I am feeling each day, and showing how Epilepsy affects my life. I have currently been implanted with a VNS (Vagus Nerve Stimulator). Many people are skeptical and curious about this form of treatment, so I will be blogging with all the facts and side effects that I experience along my way to hopefully being seizure free. I see my Epilepsy as a gift from God, even when it's unbearable. I thank God everyday for blessing me with this disease. God gave me Epilepsy so that I may share it with the world. People need to be informed on what Epilepsy is and how it works. Epilepsy isn't just "a seizure disorder"... it becomes a lifestyle for those affected by it. I hope that you can learn at least one thing from my blog and be able to share it with others. Getting the facts is just one small thing you can to to help Epileptics around the world break the chains of Epilepsy.

(www.mandykrzywonski.blogspot.com)

(Having come to know Amanda and her academic achievements, I had her supportive co operation to write a short article to encourage epileptic students to move on with their studies despite the difficulties they face daily with having epilepsy. Below is her motivating and encouraging write up. Read, be inspired and uplifted - Serene)

"The unfortunate things about epilepsy is that many people let it stop their lives, and often times give up doing the things they love or things that they need to do. Many young students tend to feel as if they are too sick to keep up their studies, especially if epilepsy prevents them from being in school full time. I was and still am one of those students. Your education is the foundation that you will build the rest of your life on it and it is vital to have a strong foundation. Making it through those 4 years of high school or even college can seem impossible when you suffer from seizures.

I personally know a person who actually dropped out of school altogether because they felt their seizures were too much to deal with on top of school. If you look around your community you will find that many schools have programs for hospital bound and ill children living at home. You can have shorter school days or be taught at home with more time to finish your work at your own pace. Some schools are even willing to reduce the amount of work that a student must finish in order to graduate.

I took part in the Northside Independent School District Home Bound Program in San Antonio, Texas and it has benefited me so much. I am also starting to do some classes online at a local college to help myself move forward. Just because it's summer time does not mean that there aren't any ways to move forward in school. It is important to push yourself as far as you can each day because no matter how far away your goals may seem, they are never too far.

I am currently in my last year of high school and I never thought I would make it this far. Thanks to my home bound program I got plenty of rest and I was able to complete my classes in much better health. I encourage all students to use all resources made available for them in their communities because our future depends on what we do now as young students. " Don't Let Epilepsy Rule Your Life! " - Amanda.

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2010-06-21T20:36:00.003+08:00

Epilepsy? There's an app for that

A leading UK medical charity has turned to the iPhone to make young people more epilepsy aware.

The National Society for Epilepsy (NSE) has launched the app, which promises to offer essential first aid information, including a step by step guide to the recovery position, along with information about epilepsy.

"Epilepsy is the UK's most common serious neurological condition and it is likely that someone, at some time, might need to help a person having a seizure," said NSE communications manager Amanda Cleaver. "Epilepsy is a very complex condition which is surrounded by myths and misconceptions. Shockingly some people still believe you should hold a person down during a convulsive seizure and put a spoon in their mouth. There are around 40 different types of seizure. Not all seizures involve losing consciousness or convulsions. Knowing how to help someone can help reduce misconceptions."

"This app, the first of its kind for epilepsy, has been developed after consultation with students and we hope it will have particular appeal to young people. The app, Epilepsy Guide for iPhone, iPad and iPod touch is released in time for National Epilepsy Week, which runs between 13-19 June. As the theme of the awareness week this year is epilepsy and young people we thought it was an appropriate time to launch the app," adds Amanda Cleaver. NSE is now looking at ways of further developing the app as a tool for seizure and medication management.

Available from the Apple iTunes App Store, Epilepsy Guide is free and requires the iPhone 3.0 Software Update or later.

NSE offers the following Epilepsy first aid check list:

Keep calm
Check your watch to note the time
Cushion the person's head
Put them into the recovery position after the convulsions (shaking) stop
Stay with them until they have recovered and their breathing has gone back to normal
If the seizure doesn't stop after 5 minutes, call for an ambulance
Don't hold them down
Don't put anything in their mouth
Don't move them unless they are in direct danger

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2010-06-13T19:49:00.007+08:00

How family of epilepsy sufferer cope with five fits a day

Mia Loudon with mum Paula and big sister Amy

FIVE seizures a day are just one of the symptoms a Cinnamon Brow mum has to manage for her disabled daughter, who has an extremely rare brain disorder and epilepsy.

Six-year-old Mia Loudon was diagnosed with epilepsy aged two weeks and used to suffer from 15 to 20 fits each day. She had to have her stomach sewn aged two because each seizure led to her vomiting and choking, meaning she is now fed through a peg in her abdomen. She was fitted with a nerve stimulator, at the age of three Mum Paula, of Perth Close, said: “Mia has good and bad days and all of them are very different. She needs 24-hour care because epilepsy is so unpredictable.

“Having Mia’s stomach sewn was a big decision as we knew we’d never be able to feed her again. It was so sad because she used to really like eating.” To add to an already complex condition Mia, who goes to Fox Wood School, in Birchwood, also has CDKL5, which is associated with Rett syndrome, a disorder affecting mainly girls and women.

Although present at birth Rett usually goes undetected until regression occurs at about 12 months and children lose acquired skills. Those with Rett have profound physical and learning disabilities and are totally reliant on others for support throughout their lives.

Paula, who is married to 41-year-old Rob, added: “Not much was known about CDKL5 when Mia was diagnosed in 2005.

“She was only the second child in this country to have it and the 17th in the world. Having this makes the epilepsy very hard to control.”

Paula, who had to give up her job as a PA to take care of Mia, has another daughter Amy, aged nine, who has proved invaluable in helping take care of her little sister. Paula said: “Amy idolises Mia and can deal with a seizure. She has seen thousands of them but it’s awful to see her cry when Mia has a particularly disturbing one.”

The 35-year-old has built up a support network for dealing with CDLK5 which can be found by typing the condition into Yahoo.

source : www.thisischeshire.co.uk

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2010-06-11T10:21:00.005+08:00

DOMINO EFFECT OF PASSING IT AROUND

Every time I attend an epilepsy congress I never fail to grab extra copies of epilepsy pamphlets, newsletters, books or dvds if they are available. I have a limited array of epilepsy materials and I only give these to people who wants and appreciates it.

My friend, Lynn, emailed me last month to request for a copy of an epilepsy awareness dvd. She wanted to watch the dvd with her yoga and meditation class members. Apparently, their master had taught them to insert an object into an epileptic's mouth during a seizure. I was more than happy to offer her a copy. From my past experiences of promoting epilepsy awareness I find family members and extended family members, relatives and extended relatives, friends and friends of theirs to be a great source of network of people to be connected and work with.

Lynn, had in the past organised two epilepsy talks for me to share about epilepsy. Jack had organised for me to give two epilepsy talks in colleges. My aunties and sisters had passed words around to their friends about my epilepsy advocacy. Mary got her newspaper columnist friend to interview me in person and later publish some of my epilepsy write ups in the local paper.

So, if you have in hand some good epilepsy materials, circulate it around. Do not just keep it. Make epilepsy awareness a domino effect among the people you know.

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2010-05-23T13:02:00.002+08:00

EPILEPSY FOUNDATION OF VICTORIA, AUSTRALIA

Four of the five members of the Walker family have epilepsy, and the youngest son Ronan also has severe developmental delay. When the Walkers went to their first epilepsy family camp, their mother Christine says it was ‘just extraordinary’. They didn’t have to apologise that Ronan was wearing a helmet to protect his head in a tonic clonic seizure, or worry in case any of the family had a seizure. They felt immediate acceptance and came away feeling part of a network of families who know what it is like to live with epilepsy.

Your donation makes our services possible, so I urge you to donate to our June Appeal. Your contribution – as much as you can afford – provides the resources that makes these services possible: camps for families, individual and family counselling services, education and training, resources and publications, research, support groups and community education.

Please make your donation and really make a difference to the lives of families like the Walker’s who ask nothing more than opportunity for their children, and understanding from the community.

Dear Ms Yin: My sincere thanks for your past support of the work of the Epilepsy Foundation of Victoria. Your generosity has made it possible for us to assist many hundreds of Victorian families and individuals whose lives are complicated by epilepsy and seizures. As we launch our major June Appeal, I am taking the liberty of asking you to commit even more generosity to our work. To make your giving easier, you can DONATE HERE securely and confidently, and help make the lives of families like the Walker's a little easier. Four of the five members of the Walker family have epilepsy, and the youngest son Ronan also has severe developmental delay. When the Walkers went on their first epilepsy family camp, their mother Christine says it was 'just extraordinary.' They didn't have to apologise that Ronan was wearing a helmet to protect his head in a tonic clonic seizure or worry in case any of the family had a seizure. They felt immediate acceptance and came away feeling part of a network of families who know what it is like to live with epilepsy. Your donation makes our services possible, so I urge you to donate to our June Appeal now. Your contribution — provides the resources that makes these services possible: camps for families, individuals and family counseling services, education and training, resources and publications, research, support groups and community education. Please make your donation today and really make a difference to the lives of families like the Walkers who ask nothing more than opportunity for their children, and understanding from the community. Thank you — we really appreciate your support. Yours sincerely


	Jeremy Maxwell For the Epilepsy Foundation of Victoria
	PS To read the full story of the Walker family, go to our website www.epinet.org.au. Please click here to make your secure donation,or telephone 03 9805 9111, and you will be assured that your donation will be tax deductible in this financial year.

2010-05-16T20:42:00.007+08:00

TRAVEL SMART

WHEEL POWER
By ANTHONY THANASAYAN

SO you like to travel ... and you have epilepsy. That is no excuse for anyone to stay at home and avoid going to new places and meeting new people.

Serene Low, 49, from Bangsar, Kuala Lumpur, ought to know about these things. She has had nearly 100 episodes of epileptic attacks since she was a child. But that didn’t stop Serene and her family from visiting China last December.

A little slip-up made the trip an unforgettable nightmare for them.

“We were all excited about our holiday which we had been planning for months,” said Serene. “I went through our checklist twice to ensure that we had everything: passports, luggage labels, travelling itinerary, etc. “However, after breakfast on the plane, I realised to my horror that I had forgotten to bring my anti-epilepsy medication.”

All she could find was a bottle of new drug which she had never taken before. The drug was given to Serene by her neurologist who cautioned her to use it judiciously as a sudden change of medication could result in adverse side effects.

“I have not had any fits for over four years due to my daily medication. I was terrified that I might get one or several seizure attacks in China,” said Serene, an advocate for people with epilepsy. “I had no choice but to take the new drug to avoid having an attack,” said Serene.

Then it happened on the second last day of Serene’s holiday. Serene fell onto the ground at a tourist spot. Fortunately, her husband and her son were with her when it happened. They protected her head with her winter jacket and waited until the seizure had run its course. When Serene came to, she was taken to a nearby coffeeshop to rest whilst a small crowd of curious onlookers watched the whole drama. Serene later returned to her hotel room where she managed to get a good night’s rest.

Serene is thankful that she has a supportive family who are there for her all the time. Now all the wiser, Serene would like to offer the following tips to anyone who has epilepsy and likes to travel:

> Start first with your anti-epileptic medication before packing any item. And make sure you pack the right medication.

> Make an effort to recheck if someone has packed your medication for you.

> Never pack your medication into one bag to avoid not having them if your luggage gets misplaced at the airport. Have some available in your handbag and backpack as well for quick access. Carry extras in case you need them.

> Check the expiry dates of all medication.

> Always carry an identification card indicating you are a person with epilepsy, details of the type of medication you take, including dosage, who your doctor is, and important names and phone numbers to call in an emergency.

> Inform the travel guide that you are person with epilepsy so that he will be prepared to help you during an emergency.

> Mingle and get to know the people you are travelling with as a group. Share some simple information about epilepsy with them, particularly on how to help someone during a seizure.

> Stay close to your friends and family who are travelling with you.

> Keep a safe distance away from lakes, streams, fountains or waterfalls to avoid drowning during a seizure.

> Encourage your family or friends to take a video or photograph you during an attack as this provides useful material for your neurologist in treating you.

2010-05-12T12:24:00.004+08:00

MAKING A DIFFERENCE

My blogger friend in UK told me not too long ago that he will highlight epilepsy awareness in his blog. Not only did he highlight epilepsy awareness, he also fundraised for epilepsy research by raising funds through his blog. His blog speaks volumes of himself and his philosophy in life.

My friend is Paul and he blogs as "magicdarts". Paul has raised a total of 75 pounds this month out of which 20 pounds have been allocated for www.epilepsyresearch.org.uk.

(What Paul has to say about himself)

"I'm a 39 year old family man from the East of England. Like my profile picture, the way I like to live my life is with a big smile on my face wherever possible. As of March 2010 I've decided to rename this blog Make a Difference and am going to focus all my efforts on sharing inspiring stories, and raising awareness and funds for charities that are closest to my heart - I hope you will come along for the journey!"

Please visit Paul at www.magicdartsblog.blogspot.com to read more about this fabulous, kind, warm, caring and charitable gentleman who is a fine example for anyone who wants to follow in his footsteps.

Ps. Please note that Paul also raises funds for other worthy causes. If you have any worthy personal cause/s close to your heart that you require assistance from Paul, please do not hesitate to inform Paul about it. He will be happiest to hear from you.

2010-04-26T12:15:00.003+08:00

'Uncontrolled brain activity' linked to epilepsy

Epileptic seizures are caused by chaotic electrical activity in the brain

Researchers have shed new light on the mechanism behind epilepsy attacks in the brain, revealing a potential new target for drug treatment.

Around half a million people in the UK have some form of epilepsy. Until recently the focus of research has been on cells called neurons, but a US study points to a completely different cell. Nature Neuroscience journal reports its behaviour may be key to uncontrolled brain activity behind the condition.

Epilepsy attacks, which can manifest as fits in some people, or "absences" in others, are caused by too much electrical signalling from the brain's neurons. However, in many cases, the reason for this over-activity is poorly understood. Scientists now believe that, in some cases, although the problem happens at the neuron the underlying reason may be the failure of surrounding cells to help control this activity.

The latest study, from the Tuft University School of Medicine and the Children's Hospital of Philadelphia, provides the strongest evidence yet that a cell called an astrocyte is the culprit. The astrocyte is known to have a wide range of functions, including supplying nutrients to other brain cells, and even helping the brain cope with damaged nerve cells. In some brain diseases, the astrocytes swell up and behave differently, and it is this condition which the researchers believe is linked to epilepsy.

No inhibition

They induced this swelling in brain samples from mice, then tested whether this made a difference to the ability of the brain cells to "turn down", or inhibit, the brain signals from specific neurons. They found that the enlarged astrocytes led to reduced levels of a brain chemical known to inhibit electrical signalling from the neurons.

Dr Douglas Coulter, one of the researchers, said: "We already know that inhibition is a powerful force in the brain. "In epilepsy, inhibition is not working properly, and uncontrolled signalling leads to epileptic seizures. By better understanding the detailed events that occur in epilepsy, we are gaining knowledge that could ultimately lead to better treatments for epilepsy, and possibly for other neurological diseases."

Professor Vincenzo Crunelli, a neuroscientist from the University of Cardiff, said other research, including his own, now pointed towards a role for astrocytes in various different types of epilepsy. He said the finding might be particularly relevant in a form of epilepsy called temporal lobe epilepsy, which can be resistant to treatment.

He said, "This certainly suggests that the astrocytes may be involved in maintaining this over-excitation of the neurons. If this is the case, it offers the chance of a new therapeutic target."

source : www.news.bbc.co.uk

2010-04-22T13:02:00.004+08:00

SCARED OF KNOWING MEDICAL TRUTHS

My friend, Jane Lee and I had tea recently. We had our cuppas of tea and a quick exchange of updates revealed that Jane had never had a full body medical examination with blood test done before. I asked Jane how come and she simply answered it is best not to know any results pertaining to her health condition. She wanted to live her life happily in bliss till medical issues crop up. Ignorance is bliss. Although she agreed prevention is always better than cure, she would not lift a finger to do so. She hates coming face to face with the crippling and nightmarish fears of knowing frightening truths related to many types of illnesses.

Many people are like Jane. I admit there were times when I was taken aback by many awful truths of some medical illnesses but then that would be momentarily only. I believe all of us should attempt to know some basic information of health issues affecting us everyday. That way, when illnesses strike us we will be more ready to accept it and not be swept off our feet unguarded and unprepared. In many instances, many illnesses are not frightening by nature and do not portray grave images and also can be treated quickly and easily.

None of us are spared of illness. We are all responsible for our own health. Take action now and start reading, discussing and finding out as much medical information as possible. As an epilepsy advocate I encourage you to read some basic knowledge about epilepsy. Epilepsy is a brain disorder that is still commonly unknown and largely misunderstood by the public. One in every 50 people will develop epilepsy at some time in their live. One in every 20 people will have an epileptic seizure. Find out now what epilepsy is all about before it strikes you.

You can visit the EPILEPSY LINKS I have listed down on the right hand side bar of my blog to read and retrieve epilepsy information.

2010-04-15T11:37:00.003+08:00

DANGERS OF WATCHING TOO MUCH T V

Don't watch so much TV!

For once that warning isn't coming from a nagging parent. Instead, it's Samsung that's issuing the warning. Samsung issued an alert on its Australian website warning children and teenagers with a family history of epilepsy or strokes that watching 3D television could heighten their risk of seizures or strokes.

"Children and teenagers may be more susceptible to health issues associated with viewing in 3D and should be closely supervised when viewing these images," Samsung said on its website. "Even those without a personal or family history of epilepsy or stroke may have an undiagnosed condition that can cause photosensitive epileptic seizures."

Samsung's warning is also intended for pregnant women, elderly people, people who suffer from serious medical conditions and sleep-deprived people.

Samsung instructed consumers to immediately stop watching the 3D TV if they experience any of the following symptoms:

altered vision
lightheadedness
dizziness
involuntary movements such as eye or muscle twitching
confusion
nausea
convulsions
cramps; and/ or
disorientation

2010-04-04T19:58:00.003+08:00

HAPPY EASTER

REJOICE, REJOICE. OUR CRUCIFIED CHRIST HAS RISEN FROM THE DEAD. HE DIED ON THE CROSS TO CLEANSE US OF OUR SINS AND GRANT US NEW LIVES SO THAT WE MAY LIVE OUR LIVES FEARLESS OF SUFFERINGS, PAIN AND DEATH. TO GOD BE THE GLORY.

Wishing everyone a Very Blessed and Happy Easter

2010-03-24T16:37:00.004+08:00

26 March is Purple Day For Epilepsy Awareness

Founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada, with the help of the Epilepsy Association of Nova Scotia, Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26, people from around the globe are asked to wear purple and spread the word about epilepsy.

Why? Epilepsy affects over 50 million people worldwide. That's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. Why purple? Lavender is the international colour for epilepsy. Getting involved is easy. Wear purple and encourage others to do the same. Host a Purple Day party or fundraising event at your home, school or business. And most importantly, get real facts about epilepsy by browsing this site at www.purpleday.org

2010-03-19T10:55:00.004+08:00

Epilepsy Myth led to killing of boy.

Man ate boy's brain to cure epilepsy.

By MSN NZ

Friday, March 19, 2010

A Chinese man has been arrested after he allegedly killed a boy and ate part of his brain in a failed attempt to cure his epilepsy. Wang Choaxu, 29, allegedly believed a myth that eating a child's brain can cure people of fits, the Sun reported.

Li Xuetang, 11, disappeared from his village late at night before being found several hours later in a grain field 5km away. According to reports the top of the boy's head had been peeled back with a part of his brain missing. Choaxu allegedly told police he believed he could cure his epilepsy if he ate the brain with earthworms and ants. He is also accused of killing a three-year-old girl who was found dead on the same day in a public toilet with a knife cut to her head.

This is by and far the most harrowing epilepsy myth I have come to know about. Chills numb my spine and anguish goes to the loved ones of the killed innocent children. As I type away, my fingers are trembling because of imaginative gruesome photographic shots of the killed children flashing in and out of my mind.

How can a man be so monstrous to commit such a heinous and repulsive act just for the sake of curing himself of epilepsy? Good grief. Where is the killer's conscience at the time of killing? I have heard of an old belief that drinking a herbal concoction consisting of earthworm, rat testis and herbs can permanently treat epilepsy. Eating goat's brain is believed to permanently cure people of epilepsy since many believed epilepsy is developed because of consumption of goat meat.

Myths have existed for as long as human beings have lived for centuries. It is impossible to wipe out myths from society. If people can begin to learn and accept what are myths and what are truths and realities then our society will be friendlier and safer to live in. This also means advocacy, empowerment and awareness of good causes can be done and achieved with less obstacles.

BEFORE YOU BELIEVE IN ANYTHING FIND OUT IF IT IS A MYTH OR NOT

2010-03-15T13:07:00.001+08:00

ETHOSUXIMIDE - Trusted Drug For Childhood Epilepsy, Research Confirms

An enlighten finding published in New England Journal of Medicine revealed that one of the oldest and most trusted anti-seizure drug titled ethosuximide can prove to be the most beneficial medication for the treatment of “childhood epilepsy”.

Childhood epilepsy is a medical disorder involving episodes of irregular electrical discharge in the brain and characterized by the periodic sudden loss or impairment of consciousness, often accompanied by convulsions. This study was conducted in order to find the best drug to treat the disorder as no significant contribution has been done in the past towards the concern.

Colin Roberts, M. D., OHSU Doernbecher's principal investigator said, "Much of our scientific understanding of childhood epilepsy care today comes from historical experience or studies involving adult patients with related, but not identical, conditions.”

The research was carried out on 453 children who were reported of having contracted childhood epilepsy from the period extending from July 2004 to October 2007. The study was based on a comparison of three drugs generally used for the disorder namelyethosuximide, valproic acid or lamotrigine. The study went on for 16 weeks and the results were in favor of ethosuximide.

2010-03-03T20:57:00.007+08:00

STORY OF CHERYL NALL

Purple Ribbon Earings

Necklace (Debbie)

Stretch Awareness Bracelets

Hi everyone. This month I would like all of you to meet another of my very special friend who I have high regards for. She is a person with epilepsy, an active epilepsy advocate, an artist and a talented crafts person with a passion for designing and creating unique jewellery pieces to help promote not just epilepsy awareness but also other health causes.

Read and know more about Cheryl and her unique creations.

I have been crafting and making jewellery for about 5 years. I love designing and creating jewellery. While I do make other types of jewellery, my passion is the Awareness jewellery. I started making the Awareness Ribbon pieces because of my epilepsy. I attribute my need to create as a symptom or effect of my epilepsy.

I believe I have had epilepsy for most of my life but the type I have is often difficult to diagnose. I was diagnosed with right temporal lobe epilepsy in November 2005. I don't have stereotypical seizures. I have never lost consciousness during a seizure nor do I have the normal physical signs of a seizure. Because of that I have really tried to promote epilepsy awareness.

I used to speak professionally to groups about my experiences and encourage people to open up about their own experiences with epilepsy. When you hide something, you give it a power over you, but when you confront it, it becomes less powerful.

I want to tell everyone that epilepsy is a neurological condition and that people with epilepsy are like people with any other condition.

I have a shop on the internet where I sell my creations. The site is called Etsy and my shop is Cheryls Purple Cow. Etsy has a promotional tool called the Treasury. A Treasury is basically a poster that shows 12 items from different Etsy Artists. The treasuries I create are filled with Awareness items for sale in different shops on Etsy. They only last 48 to 72 hours and are only available when certain conditions are met. I have kept an Awareness Treasury active almost full time since mid-December. That is quite a feat but I am a determined person in helping to promote epilepsy awareness. I want the topic of awareness to gain recognition on Etsy and the Treasuries.

CHERYL NALL

To know more about Cheryl and her creations, please visit her at the following places. Thank you very much.

Cheryls Purple Cow http://cherylspurplecow.etsy.com/
Unique Crafts and Jewellery for Those with Unique Taste

Facebook Fan Page: http://www.facebook.com/Cheryls.Purple.Cow

Blog http://cherylspurplecow.blogspot.com/

Twitter: http://twitter.com/cherylpurplecow

2010-02-14T10:29:00.005+08:00

DUAL CELEBRATION AND HAPPINESS

A week before celebrating the above, Happy Valentine's Day and Happy Chinese New Year which fall on today, I strolled along the streets of the city and saw big crowds of shoppers busy bargaining and shopping for Valentine's gifts and Chinese New Year (CNY) gifts. Guys and girls spend long hours of their time paying special attention in buying presents for each other. Housewives shop for CNY delicacies to cook special CNY dishes for reunion dinners. Shopping complexes do roaring sales in all consumer items.

So much money, efforts and time were spent and put to great length to ensure everyone gets to have two joyful, beautiful, meaningful and happy occasions to celebrate. I had always been in awe on how quickly people are spontaneous to such celebrations. On the contrary, very often people are slow, non receptive and lack the initiative to respond to "Purple Day for Epilepsy, Walk for Epilepsy, Jeans Day for Epilepsy and other health causes". Donating generously towards such causes would make people think twice.

I wonder how people will react and respond to " Happy Epilepsy Day " if there is one that is celebrated universally every year. Will people shop for all things in purple? Donate generously to Epilepsy Societies? It will definitely be awesome if people would.

My family & I on a public street that was temporarily closed to cater for CNY stalls

In front of Chinatown arch

A CNY lion dance that was followed by burning of firecrackers

Wishing everyone Happy Valentine's Day and Happy Chinese New Year of The Tiger 2010

2010-02-10T06:19:00.004+08:00

Exactly 2 years

My blog is 2 years old today. I would like to thank everyone who visits my blog for their constant support and uplifting comments. It has been two great years of blogging where I had opportunities to discuss and share with readers, people with epilepsy and caregivers from around the world through epilepsy chatrooms, facebook, epilepsy blogs and twitter.

Undeniably, blogs are one of the best tools available for anyone to reach out to the public. It is my sincere hope that my blog will continue to touch, inspire and uplift many souls as I continue to write and share from my own experiences and knowledge gained from others concerning epilepsy.

May all of you who read my blog reap bountiful returns in terms of knowledge of epilepsy and as a result offer your full understanding and acceptance of people with epilepsy who struggle to lead normal lives in a world shrouded with myths, misconceptions and mysteries surrounding epilepsy.

.

2010-01-28T08:38:00.004+08:00

An epileptic dog rescues its carer after he collapsed

The rescue centre will pay all vet fees relating to his epilepsy if he's rehomed

A dog that suffers from epilepsy has helped rescue his carer, after he collapsed in the snow.

Bentley the dog raced back to the rescue centre in Evesham where he is cared for to get help.

Chris Slight, from Dogs Trust Evesham said: "The weather was atrocious that day and I dread to think what could have happened to Pete if Bentley hadn't raised the alarm."

The canine hero Bentley is still looking for a home.

Bentley led staff to where Pete was, and they helped him back to the centre, where he was wrapped in dog blankets, to warm him up until the ambulance arrived.

Two-year-old Bentley is still looking for a new home

After hospital tests Pete recovered and was welcomed back to work by Bentley.

Gentle giant

Pete describes the American bulldog as a "gentle giant" who gets on well with other dogs, and would be best suited to a family with older children.

The rescue centre will pay all vet fees relating to his epilepsy if he is rehomed.

Anyone interested in giving Bentley a home should ring the Dogs Trust Evesham on 01386 830613.

source : news.bbc.co.uk

.

2010-01-16T11:13:00.003+08:00

Text reminder to take epilepsy tablets

By Jane Elliott
Health reporter, BBC News

Forgetting pills can trigger Ben's epilepsy

Ben Davey needs to take 20 tablets of four different types each day - so it is no surprise that sometimes he forgets them. But forgetting can have serious consequences for the 34-year-old Londoner. Ben has epilepsy and forgetting to take his pills can cause him to have a seizure. "For many years I have had about three fits a year," said Ben, who has had epilepsy since puberty.

Fit increase

But when doctors changed his drug regime this year he started getting confused and his seizures increased.

"My fits increased to about 30 this year. I don't want to give the wrong impression that the sole cause of me having a fit was my forgetting, but if I was to forget, the likelihood is I would probably have a fit. If I was taking the same tablets every day it would be easier not to forget, but as they were introducing one medication they were fading out another."

"I was thinking 'I have to got to take one less of this coloured one, one more of this coloured one'. I would say, 'I am going to have a shower and then take my tablet' and then I would be on the bus and wouldn't remember whether I had taken them and there was no knowing."

New service

Now the National Hospital for Neurology and Neurosurgery (NHNN), where Ben is treated, has launched a new service to help patients manage their condition. The service will use text messaging to remind patients to take their medication and has a facility to alert carers if they do not respond to a text saying they have taken the tablets. There will also be a web-based patient diary where patients can record their responses to medication, seizures and any injuries sustained during them.

Anthony Linklater, epilepsy specialist nurse, said that what seemed such a simple idea had taken years to plan. "In the past hospitals used to just give medication and send people on their way," he said. "This is just going one step further and as we are introducing the system we are thinking of different ideas. Poor adherence is the main cause of unsuccessful drug treatment."

Pill routine

Professor John Duncan, Professor of Neurology, agreed, "Most individuals with epilepsy have to take medication regularly in order to achieve the best possible control of their seizures, but remembering to take medication can be problematic for some. Taking medication accurately can become quite complicated when it is adjusted as this is usually done in gradual steps over a period of time. We hope that the additional support provided by this service will help some people to manage their medication more effectively which could help to improve the control of their epilepsy."

The NHNN is the first to introduce the system and already has its first few patients signed up for its year-long pilot.

Simon Wigglesworth, deputy chief executive at Epilepsy Action, said he was excited by the potential offered. "Alerts reminding people to take their anti-epileptic drugs could be effective in ensuring they take their medication accurately and on time. An online patient diary could be useful in helping people monitor their epilepsy, and would be particularly valuable for doctors assessing patients with the condition."

Ben, who plans to sign up early this year, says it will make a big difference to his life. The new service would be amazing," he said. You know the feeling when you are just gong to work or the shops and you think, 'Hang on, did I turn the oven off?'

"For me taking a tablet is such an important thing. If I could know that I had definitely done that it would be great."

source : news.bbc.co.uk/2/hi/health

2010-01-06T03:27:00.006+08:00

First Aid For People With Epilepsy (PWE) on Wheel Chair

If someone starts to have a seizure while confined in a wheelchair, seated on a bus, train or tram or strapped in a pram or stroller:

DO

Protect the person by preventing them from falling if there is no seat belt.

Make sure the wheelchair or the stroller is secure.

Protect the person by supporting their head. Something soft under the head will help if there is no moulded headrest.

Check whether you need to move any hard objects that might hurt arms and legs in particular.

Consciousness usually returns within a few minutes.

Reassure the person and tell them what has happened.

NOTE: When the seizure has finished you need to ensure their airway is clear. This may involve removing food or vomit from their mouth and supporting their head to maintain a clear airway. It may or may not be appropriate to remove the person from the chair at the end of the seizure. This will depend on your assessment of the safety issues involved both for you and them.

DO NOT

Try to stop the seizure.

Put anything in the persons mouth.

Try to remove them from their position in most cases the seat provides some support.

Call an ambulance if:

The seizure activity lasts 5 or more minutes or a second seizure quickly follows.

The person is not conscious within 5 minutes of the seizure stopping.

The person is injured.

The person is pregnant or has diabetes.

You know, or believe it to be, the person's first seizure.

You are in doubt.

source : www.epilepsyaustralia.net

2010-01-01T19:45:00.005+08:00

MAJESTIC SUNSET

I love watching sunset at any place in the world and against all different kinds of backdrops. The sun is the solar supply to mother earth. All living things depend on the sun to stay healthy and alive. By gazing, captivating and absorbing the beauty of the sun I am constantly inspired to live my life majestically like the sun.

Location: Mobilised and stored in Serene's mind

Medium of paint used : Poster colors

" Shine your light strong, vibrant and far unto all ends of the world. Liven up someone's life " - by Serene Low

2009-12-24T10:59:00.004+08:00

May we have our own 'nativity' experiences and find joy in our hearts...

Merry Christmas!

2009-12-13T18:08:00.003+08:00

Extraordinary

The smiling crippled girl

Qian HongYan lost her legs in an accident

Her family in China are poor and couldn't afford prosthetic legs, so she uses a basketball to help her move.
-
Qian uses two wooden props to drag herself, and never complains, even though she has worn through six basketballs.

She attends her class

She always smiles

She Is Always cheerful

She is always positive

-

With help from kind souls she is now able to afford a pair of prosthetic legs.

Smile always
Be grateful with what you have.

2009-12-08T11:51:00.005+08:00

PHENOBARBITAL

Phenobarbital, a barbiturate, is used to control epilepsy (seizures) and as a sedative to relieve anxiety. It is also used for short-term treatment of insomnia to help you fall asleep.

This medication is sometimes prescribed for other uses; ask your doctor or pharmacist for more information.

How should this medicine be used?

Phenobarbital comes as a tablet, capsule, and elixir (liquid) to take by mouth. You may obtain a specially marked measuring spoon from your pharmacist to be sure of an accurate dose of the liquid. It usually is taken one to three times a day and may be taken with or without food. If you take phenobarbital once a day, take it at bedtime. Follow the directions on your prescription label carefully, and ask your doctor or pharmacist to explain any part you do not understand. Take phenobarbital exactly as directed. If you are taking phenobarbital to control convulsions or seizures, follow the exact schedule prescribed by your doctor.

Phenobarbital can be habit-forming. Do not use phenobarbital for more than 2 weeks if it is being used to help you sleep. Do not take a larger dose, take it more often, or for a longer time than your doctor tells you to. Tolerance may develop with long-term or excessive use, making the drug less effective. This medication must be taken regularly to be effective. Do not skip doses even if you feel that you do not need them. Call your doctor if you have convulsions or seizures while taking phenobarbital. Do not stop taking this drug without talking to your doctor, especially if you have been taking it for a long time. Stopping the drug suddenly can cause withdrawal symptoms (anxiousness, sleeplessness, and irritability). Your doctor probably will decrease your dose gradually.

What special precautions should I follow?

Before taking phenobarbital,

tell your doctor and pharmacist if you are allergic to phenobarbital or any other drugs.
tell your doctor and pharmacist what prescription and nonprescription medications you are taking. Some medications may add to the drowsiness caused by phenobarbital.
tell your doctor if you have or have ever had anemia or seizures, or lung, heart, or liver disease.
use a method of birth control other than oral contraceptives while taking this medication. Phenobarbital can decrease the effectiveness of oral contraceptives.
tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding. If you become pregnant while taking phenobarbital, call your doctor immediately.
if you are having surgery, including dental surgery, tell the doctor or dentist that you are taking phenobarbital.
you should know that this drug may make you drowsy. Do not drive a car or operate machinery until you know how this drug affects you.
remember that alcohol can add to the drowsiness caused by this drug.

What should I do if I forget a dose?

If you take several doses per day, take the missed dose as soon as you remember it and take any remaining doses for that day at evenly spaced intervals. However, if it is almost time for the next dose, skip the missed dose and continue your regular dosing schedule. Do not take a double dose to make up for a missed one.

What side effects can this medication cause?

Side effects from phenobarbital may occur and include:

drowsiness
headache
dizziness
depression
excitement (especially in children)
upset stomach
vomiting

Tell your doctor if any of these symptoms are severe or do not go away:

nightmares
increased dreaming
constipation
joint or muscle pain

If you experience any of the following symptoms, call your doctor immediately:

seizures
mouth sores
sore throat
easy bruising
bloody nose
unusual bleeding
fever
difficulty breathing or swallowing
severe skin rash

If you experience a serious side effect, you or your doctor may send a report to the Food and Drug Administration’s (FDA) MedWatch Adverse Event Reporting program online [at http://www.fda.gov/MedWatch/index.html] or by phone [1-800-332-1088].

source : http://all4freehere.com/2009/09/phenobarbital/

I visited my neurologist yesterday for my bi-annual follow up. We had a good discussion about my phenobarbital intake. I was made aware of the facts above. My neurologist concluded our discussion with a strict and stern commandment - THOU SHALL START TAKING THY CALCIUM SUPPLEMENT. "Yes sirree Madam, I will obey", I answered.

One prominent side effect of phenobarbital is it depletes a person's calcium level rather quickly which is why it is important that people who are on this drug MUST take Vitamin D and calcium regularly in order to maintain healthy bones.

2009-12-02T10:06:00.003+08:00

EPILEPSY AWARENESS BOOTH

I have had the privileges and blessings to meet many people at my epilepsy awareness booth which was closed down two years ago due to family commitment. Mitchell is a special lady I met at my booth. Since we first met, we have become and stayed as good friends till now. Mitchell wrote and shared with me about her first meeting with me.

""Serene, did you know that when we first met, I was actually feeling very nervous. I had had my first seizure at age 41 and it was really difficult for me to accept but I knew I had to learn more about this condition called epilepsy. And then I saw a write up in the paper about a lady who has a booth at the Mall. It says that this lady is an epilepsy activisit and she has this booth to help answer questions about epilepsy. And so thats how I came to your booth.

When I approached you, I was very nervous. I didn't want to reveal too much and yet I wanted to find out as much as I can. I am glad that I went to see you because it was nice to talk to someone who had been there, who understood and who cared enough to share. You gave me brochures and shared freely with me about your own situation and that was the best help of all. Just knowing that I am not alone. I don't know how to thank you so I wrote you a poem instead. I hope you like it.""

You look as Serene as your name

and you greeted me with no shame
You told me that epilepsy is not something to be afraid of
You just have to educate yourself and those you love

Your look is so calming
And you were really caring
You helped me to learn more
I learned that life can go on as before

You made me feel calm and assured
Despite hearing about what you had endured
Having epilepsy is not the end
It need not be something beyond comprehend

Your look gave me confidence to confide
knowing there is nothing to hide
One should learn as much as they can
About medicines and procedures like the scan

You have a face that says its ok everything will be alright
The future can be still bright
As long as you understand
Life is not as fragile as the sand

So love, laugh, live,
You can still have the same drive
Understand, learn and take your meds
There is no need to let life hang on a thin thread

Thank you Serene for being there
For me and others who felt despair
I hope you can continue to help many others
Who needs to help themselves, their brothers or mothers

Thanks again Serene!

2009-11-20T08:31:00.001+08:00

Epileptic actress attempts to induce fit on stage

An actress, Rita Marcalo, who has suffered epileptic seizures in private for 20 years is attempting to induce one for a public performance.

By Paul Stokes
Published: 6:19PM GMT 19 Nov 2009

Ms Marcalo suffers around two seizures a year even with medication Photo: ROSS PARRY

Ms Marcalo has stopped taking medication ahead of next month’s production entitled Involuntary Dances which she claims is to raise awareness of the condition. But she is facing criticism for putting herself at risk and the voyeuristic nature of the 24-hour event which is being funded by a 13,889 Arts Council grant. People will be invited to film her at Bradford Playhouse, West Yorkshire, where she will use strobe lighting, fasting and raising her body temperature to try and bring about a seizure.

She said: “One of the reasons I am doing this is because epilepsy is an invisible disability. As an artist I am very interested in this idea of doing something in my art that is the opposite of what I do in my life. In my own life it is private but in art I make it public. If you Google or YouTube `epileptic seizures’ you come up with all kinds of mobile phone footage which has been filmed without the patients' consent. Part of me doing this is to address the voyeurism. I am saying, I am choosing to let you do this.”

The charity Epilepsy Action has expressed concern at the potential danger of a patient stopping medication and a spokesman said: “What kind of example is this to other people?”

Details of the stunt emerged at a time when Auvryn Scarlett, an epileptic, was jailed in the US for killing a British couple with his dustbin lorry after failing to take his medication because it interfered with his enjoyment of alcohol.

Ms Marcalo, who directs the Leeds-based dance theatre company Instant Dissidence, suffers around two seizures a year even with medication. The audience, restricted to over-18s, will be provided with sleeping bags and breakfast - but will be woken by a siren the moment she suffers a seizure and can record it on their mobile phones.

Eleanor Barrett, director of Bradford Playhouse, said: “I think it will shock people. I think it's her right to express herself and if people find it distasteful they do not have to see it.”

Philip Lee, chief executive of Epilepsy Action believed many of the charity’s members would consider the performance “inappropriate”.

“I am concerned about the potential danger of a patient stopping their medication to induce a seizure," he said. “Seizures can bring with them the risk of injury from jerking or falling or in the worst cases, death. It is also concerning that the performance could influence others to do something similar. At the very least, the performance should carry a health warning advising people that they should not attempt this themselves.”

Dr Sallie Baxendale, a neuropsychologist at the National Society for Epilepsy, said because seizures were unpredictable, it was unlikely someone would be able to induce on at will even when off medication. She added: “If a seizure happens in front of an audience it is likely to make them feel very uncomfortable. Will this help reduce the stigma which still surrounds the condition? I doubt it."

Source :www.telegraph.co.uk/culture/theatre/theatre-news

""It is so important to keep seizures under control with medication or through surgery. Ms Marcalo is truly dicing with her life by skipping her medication and attempting to induce a seizure in her play. It is my opinion that her intended daredevil and frightful act is extremely distasteful, degrading, disrespectful and embarrassing to people with epilepsy. If she so much wants to be seen in a state of seizure publicly, she can fairly well have some family members record her and post it in YouTube for the purpose of awareness.

I hate to think that her act will be a strong precedent to others. Copycats are everywhere. Epilepsy activists, advocates and epilepsy societies everywhere are preaching tirelessly about the importance of regular medication intake and no thanks to Ms Marcalo who is about to make a public appearance staging herself in a highly revolting act.""

2009-11-17T18:07:00.003+08:00

MEDIKIDZ FOUNDATION

Medikidz puts complicated medical concepts into simple language, so that all patients (no matter what their age) can understand what is happening inside their own bodies.

How do you go about explaining medical conditions to young children? Do you hide, brush off or put aside efforts in attempts to explain complicated medical conditions to young children under your care? Young children, like adults, also desperately want to know and understand what is happening to them and why they are feeling unwell. We as caregivers must bear the responsibility of enlightening our sick children about their medical condition lest they suffer in ignorance and in silence.

It is unfair and unjust to allow young children to go through sicknesses in the dark. They deserve all the rights to know and understand their illnesses. Medikidz Foundation has designed and created superhero characters in medical comic books to be distributed to kids who are ill worldwide. These medical comic books will appeal to young children and it's contents are pictorial with easy to digest medical information about various types of illnesses.

Please visit Medikidz Foundation at http://www.facebook.com/pages/Medikidz-Foundation/27690241212 to find out more about the Foundation and the range of medical comic books catered for young children. I am looking forward to receiving my copy of epilepsy comic book catered for young children between the ages of 10 - 15 years old.

Medikidz Foundation will be giving away 100,000 HIV books as part of World AIDS Day on 1st December 2009.

2009-11-09T09:17:00.004+08:00

HANDLING OUR LIMITATIONS
(November is Epilepsy Awareness Month)

"Jump, survive or die thoughts" flooded my mind at this moment. Too late to look back.

No regrets. Weeeeeeee.........I am gliding and flying like a bird. Greatest feeling in my life.

For this epilepsy awareness month, I wish to share my personal views as a person living with epilepsy for close to 40 years. Living with epilepsy comes with limitations to some extent. No driving. No swimming alone. No climbing heights. No late night parties that deprive sleep. No alcohol consumption. No over stressing myself over everything in life. No parachute jumping. No, no, no.....the list goes on.

Nobody will like to lead a life filled with too many "No" but don't all of us have some kinds of "No" in our lives? Some people have to say no to certain types of food because of allergies. Some will say no to outings because of lack of accessibilities for wheelchairs. Many will say no to luxurious shopping and eating because of tight financial budgets. Saying no is part and parcel of life. Same goes with saying yes.

How successful we are in living our lives to the fullest depend on how we juggle and cope with the "No" and "Yes" in our lives. Are you the type that allows "No" to downgrade your life or do you take "No" as challenges to improve yourself and your life?

I view life as very fragile and unpredictable. Anything can happen in life. Tragedy does not pick and choose it's victims. Two young boys ran and hid themselves under a tree but was struck dead by lightning. A young toddler laughed to her death. A 17 year old student was permanently blinded by acid. A couple looking forward to marriage was killed in a tragic car accident. A pregnant mum had her handbag snatched from her while she was riding a bike. She fell and injured herself seriously on the road. She was sent to hospital but died in a coma.

With so many uncertainties looming in our lives, it no longer bothers or troubles me that I am epileptic. I have learned to accept and cope with whatever life has to throw onto me. Is it worthwhile to worry excessively over the situations and conditions you are in or does it make more sense to take full charge and control of your life. Manage your life as best as you can and be content with whatever life has to offer. Your life is whatever you make it out to be.

EPILEPSY IS MANAGEABLE AND CONTROLLABLE. IT IS NOT AS TERRIFYING AS IT SEEMS.

2009-11-01T08:08:00.005+08:00

LIVING WITH FITS

Wheel Power
By ANTHONY THANASAYAN

Celebrating my son's 21st Birthday

EPILEPSY is a condition of the brain which causes a person to become unconscious. This happens for short periods of time where he or she will move about in an uncontrolled, and sometimes violent, way. Such movements are called “seizures”. They are caused when there is a sudden and involuntary surge of electrical activity in the brain. No one knows why this happens and so there is currently no cure for epilepsy. The person experiencing a seizure goes through a motion that alters the way he or she thinks, acts or feels.

Now, anyone reading these few paragraphs may be terrified of the disease, especially if it were to affect them or their loved ones. Not Serene Low, however, who lives in Bangsar, Kuala Lumpur. The 49-year-old wife and mum of a 21-year-old son is convinced that having epilepsy is neither a death nor life sentence.

“Life is still beautiful with epilepsy,” she told Wheel Power last week. Low is in the best position to know this as she has epilepsy herself, a condition she has lived with for nearly 40 years. In that time, Low has experienced more than 100 attacks.

“The good news is, today, there are many types of anti-epileptic drugs available,” she said.

“With proper diagnosis and the right medication, seizures can be fairly well, if not, very well controlled,” added the prominent epileptic awareness activist whose blog www.epilepsylegacy.blogspot.com won a top health blogger award in February this year. Low pointed out that when taken regularly and as prescribed, anti-epileptic drugs can prevent seizures in a majority of people.

It has been estimated that at least 50% of all patients with epilepsy gain complete control of their seizures for substantial periods of time. Another 20% enjoy a significant reduction in the number of epileptic attacks.

“I have lived with epilepsy for most of my life and I’m fortunate to say my seizures are very well controlled. I would also like to point out that without epilepsy, I would not be the epilepsy activist that I am today. My experience with the disease has helped me stay connected and in touch with other leading epilepsy activists, caregivers and people with epilepsy (PwE) not only in the country but around the world as well.”

Low stressed that being an epileptic does not make her feel different from anyone else. In fact, her epilepsy blog has been a huge plus factor for her. "It has opened a whole new dimension in my life,” she explained. “I have loyal followers and readers, many of whom are PwE who leave inspiring and motivating comments for me. In fact, if not for epilepsy, I would still be the shy and quiet person that I used to be.”

Low had her first seizure as a child after a high fever. Then she stopped having them for about 10 years until they recurred when she was 18. Her last seizure occurred in March.

“Epileptic seizures can be extremely dangerous for PwE, especially when they happen in dangerous places,” explained Low. “Once it happened when I was swimming in Port Dickson where I almost drowned. Another time, I was at a traffic light waiting to cross a busy street and the seizure caused me to fall down on the five-foot way where I broke the whole upper front row of my teeth and needed extensive dental surgery.”

Despite those difficult times, Low said that life has to go on for everybody and especially for PwE. “In my case, I have learned to look beyond epilepsy. The way I see it, the horizon beyond epilepsy is colourful, beautiful and captivating like the artworks of Vincent Van Gogh and his divine paintings. His paintings have inspired me in my art which is one of my greatest interests.”

Low said that although her art may never find a place in art galleries, painting has become a therapeutic pastime for her. Three weeks ago, she submitted 13 paintings to Jim Chambliss, who calls himself “a reformed attorney” after successfully rebounding from traumatic brain injury in 1998. He is currently doing research on the influence of human conditions such as epilepsy and migraine in art at the University of Melbourne and St Vincent’s Hospital in Australia.

Low was delighted that her works were picked as part of a study by Chambliss, entitled Epilepsy and Creativity. Chambliss, incidentally, is also a PwE.

Source: thestar.com.my

2009-10-29T16:04:00.003+08:00

SEVERE MYOCLONIC EPILEPSY IN INFANCY (SMEI) OR DRAVET SYNDROME

This is a very rare form of childhood epilepsy. Out of 500 children with epilepsy, only one, or at most two, children are likely to have this form of epilepsy. It is also called Dravet Syndrome. The epilepsy starts with seizures which may not initially differ from those associated with feverish illnesses (febrile convulsions).

Generally, this syndrome tends to develop during the second year of life. It may not be possible to make this diagnosis until the child is two, three or even four years old. The seizures begin in the first year of life. They are most often associated with high temperatures and often just involve one side of the body, although both sides of the body may be involved.

The seizures are characterised by jerking rather than stiffness and jerking. They often recur quite frequently in the first year of life. However, at this time it is not easy to differentiate these children from others with febrile convulsions who get better and who do not go on to develop other types of seizure.

During the second year of life of children with SMEI, seizures become more frequent and persistent, are often more obviously partial (involving one part of the body) and no longer occur when a child has a high temperature but at any time of day and night.

In addition to the partial seizures, myoclonic jerks (‘myo’ meaning muscle, and ‘clonus’ meaning jerk) become prominent. Often the children are photosensitive (have seizures brought on by flashing lights). Seizures may also sometimes be brought on by hot environments or hot showers or baths.

The early development of affected children is usually normal but once the myoclonic seizures and partial seizures start in their second year of life, children may lose skills or their developmental progress may slow down. The child’s speech and language maybe particularly affected.

For more information on Dravet Syndrome please visit www.epilepsy.org.uk

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2009-10-25T11:20:00.002+08:00

EPILEPSY MUNCHIES

A Particular Blend Of Love For People With Epilepsy (PWE)

4 cups flour
1/2 cup full of Love
25gm Kindness and Forgiveness
25gm Bliss seeds
2 tbsp Gentle powder
100gm Togetherness
Lovey-dovey oil
Joy butter, sugar and salt

Sift flour. Add water. Mix it together. Add tenderness and set aside for a lifetime. Mix Love with Kindness and Forgiveness. For stronger ties and connections, add Bliss seeds, Gentle powder and a dollop of Togetherness. Add kisses to mixture and knead into firm dough. Allow dough to sit for years and years.

Sprinkle crushed Joy butter, sugar and salt for added Togetherness. Grease baking pan. Mold dough into shapes of your heart. Bake epilepsy munchies in oven till crunchy and aromatic.

Serve epilepsy munchies throughout generations. Whoever eats it will forever remember what epilepsy is all about.

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2009-10-12T23:38:00.005+08:00

BLOOD DONATED BY EPILEPTICS NOT ACCEPTABLE

About three over years ago, my late dad was in a critical condition in a private hospital. Doctors informed us that our dad had vomited excessive blood due to a nasty ulcer in his stomach. We were told to return seven (1.5litre) packets of blood to replenish the hospital's blood bank. The doctors had intended to transfuse seven packets of blood into my dad's body to sustain his life.

My siblings and I had blood tests done immediately to determine if all of us can donate blood. Most unfortunately, I was unable to donate blood. The lab medical officer told me that epileptics' blood are not acceptable by hospitals because of fears that epileptics' blood might contain traces and elements of anti convulsant drugs' effects like phenobarbital, epilim, tegretol, keppra, etc. There are worries that recipients of blood donated by epileptics might react to the side effects of anti convulsant drugs.

In this article I do not intend to elaborate in great length on medical issues surrounding blood donated by epileptics. I only wanted to highlight the emotions or rantings of an epileptic, that is, myself.

I was devastated to find out I was not allowed to donate blood for my dad's survival chances. In such a life and death situation involving my loved one, it was most nerve wreaking, upsetting and frustrating for me to be deprived from donating blood. If only I had not revealed on the blood test form that I am epileptic. Maybe in future, I will not attempt to reveal my epileptic condition when I wish to join in my church's annual blood donation day. Or maybe I will not.....Ohhhhhh!!! Epilepsy makes my blood worthless cos it is tainted and contaminated beyond any good use for other people.

To those who are able to donate blood, be grateful and donate whenever possible to save lives. I will never ever have the chance to donate blood as much as I would like to. I feel so lousy.

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Heather Siebens - Epilepsy Activist (Chandler, USA)

2009-10-05T07:53:00.015+08:00

I have met SOOOO many amazing people on twitter...naming just a few on here to start...we all need to connect more--talk more out. And get others who aren't--connected!! Amazing blog humbled me big today--Jesus works wonders in all circumstances.

Hi All,

Meet my famous and untiring epilepsy activist friend, Heather Siebens (Hetty) from USA. I got to know Hetty from Twitter. Meeting and communicating with Hetty was one of the happiest things that unfolded to me recently.

Hetty is a lively, bubbly, positive minded person with epilepsy. If you care to view more of Hetty's YouTube videos you will find out from her the various illnesses she is going through in her life. She does not complain about her illnesses but instead advices people to face and accept their illnesses courageously. Adversities are part of everyone's lives.

Hetty not only copes with her own epilepsy condition but she also serves as a great and loving caregiver to her daughter who also has epilepsy. There are chain reactions in life. I am most uplifted by Hetty's constant active participation and contribution towards promoting epilepsy awareness. Likewise, I hope I have been a good source of inspiration to others. And for the people who have been inspired by Hetty and me, I hope you all will on your part be equally uplifting to some more other people.

In a highly stigmatized society that we live in, let us work as an unbreakable united force to eradicate or reduce wrong myths and misconceptions about epilepsy.

HAND IN HAND WE WILL MAKE THIS WORLD AN EPILEPSY FRIENDLIER WORLD

(Hetty can be connected in Twitter @EpilepsyCures or @AliveinMe or you can visit her at www.epilepsycures.ning.com)

Acknowledgement : Thank you very much Hetty for mentioning me in this YouTube video of yours.

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2009-09-20T11:33:00.009+08:00

"Applaudable Efforts in Educating Young Children about their medical condition"

The superheroes fighting disease

By Jane Elliott
Health reporter, BBC News

Skinderella - can morph into a skeleton and knows all about skin and bone

When a 12-year-old patient asked for help understanding his newly diagnosed leukaemia, Dr Kate Hersov knew she had a problem.

"He said 'I can hardly pronounce it, let alone understand it," she said.

Growing increasingly frustrated by what she perceived as a worrying lack of child-focused information, she and fellow medic Dr Kim Chilman-Blair teamed up to produce a series of superhero comics, designed to educate.

"Often when we made a diagnosis of a young child we felt helpless that we had nothing to give the child themselves to understand what we had just told them," she said.

Comic book heroes

"Kim had one particular patient, an eight-year-old girl called Wendy, who had epilepsy and had just been diagnosed. After she was diagnosed she just looked at Kim forlornly and said: 'Is there nothing I can read'?

"There was nothing out there we could give her - nothing for the young patients themselves. So it was out of our frustration as clinicians that we created Medikidz. We knew children needed a place to go to understand the medicine, whether that be the diagnosis, medicines or treatment procedures."

The 'Medikidz' are a gang of five larger-than-life superheroes, designed to educate children through a wide range of media.

One element is an interactive website featuring a virtual world of the human body which the child can explore and the opportunity to create their own avatar (virtual identity) to talk to other children about their condition.

Dr Chilman-Blair said: "Parents sometimes feel that children are too young to understand medical concepts, or that they are better off not knowing.

"The Medikidz programme wants to change this view. We don't sugar-coat serious problems, we provide clear and factual information in a way that is easy to understand and engaging to read. We want the children who use Medikidz to be in control of their illness."

Covering disease

Both doctors want eventually to cover 300 paediatric conditions, but have launched this week with the first ten - including Type 1 diabetes, epilepsy, leukaemia and asthma. In the asthma comic book the newly diagnosed Max Bond is taken on a tour of his lungs, while the superheroes Chi, Skinderella, Gastronomic, Pump and Axon explain how and why his lungs malfunction and the drugs that can be used to help.

Kim Gillberg, health promotion manager at Asthma UK, said the project had the potential to provide a valuable tool to help children. "It's important that children and young people are given options in the way they access health information and we fully support the use of engaging and interactive materials," she said. The essential thing is that the information provided is accurate, positive and empowers children and young people to be able to manage long-term medical conditions, such as asthma, effectively. All the comic books are peer reviewed and have input from play specialists, nurses and often charities.

Pump - has superhuman strength and speed

Dr Chilman-Blair said the first editions would be aimed at the 10-15 age group, but that they also plan a story board format for younger children.

"We chose the graphic novel or comic because it is appealing to children of a wide age group from childhood up to adulthood," she said.

Books cost £5.99 each and are available through the website, but the doctors hope that they will eventually be widely distributed.

"I would like to see a Medikidzs comic book given to every kid when they are diagnosed", said Dr Hersov.

Grenville Fox, clinical director at the Evelina Children's Hospital, where the comics were launched said they could be invaluable. "For a lot of children, spending time in hospital and dealing with their illness can be a daunting experience." he said. This can be made easier for them by providing them with information in a way they can understand and relate to.

"The Medikidz characters and leaflets are a great way for our patients to learn about their bodies and illnesses in a fun and accessible way."

source : news.bbc.co.uk

2009-09-18T15:38:00.005+08:00

HUMOUR OF THE DAY

A Lab Report & Cat Scan

A woman brought a very limp duck into a veterinary surgeon. As she laid her pet on the table, the vet pulled out his stethoscope and listened to the bird's chest. After a moment or two, the vet shook his head sadly and said, "I'm sorry, your duck, Cuddles, has passed away."The distressed woman wailed, "Are you sure?" "Yes, I am sure. The duck is dead," replied the vet."How can you be so sure?" she protested. "I mean you haven't done any testing on him or anything. He might just be in a coma or something." The vet rolled his eyes, turned around and left the room.He returned a few minutes later with a black Labrador Retriever. As the duck's owner looked on in amazement, the dog stood on his hind legs, put his front paws on the examination table and sniffed the duck from top to bottom. He then looked up at the vet with sad eyes and shook his head. The vet patted the dog on the head and took it out of the room.

A few minutes later he returned with a cat. The cat jumped on the table and also delicately sniffed the bird from head to foot. The cat sat back on its haunches, shook its head, meowed softly and strolled out of the room.The vet looked at the woman and said, "I'm sorry, but as I said, this is most definitely, 100% certifiably, a dead duck."The vet turned to his computer terminal, hit a few keys and produced a bill, which he handed to the woman. The duck's owner, still in shock, took the bill. "$150!" she cried, "$150 just to tell me my duck is dead!!!

The vet shrugged, "I'm sorry. If you had just taken my word for it, the bill would have been $20, but with the Lab Report and the Cat Scan, it's now $150."

Humour and laughter are the best medication all of us can afford to have because it comes without costs. Besides just taking our anti epileptic drugs daily, always make sure you top it up with an ample and generous dose of humour and laughter. Humour and laughter have the abilities to zap away your negativities, bleach your darkest moments till it turns glaringly white, flush away fear and embarrassment and spruce your mind, health and soul till it becomes cleany clean clean.

I always enjoy good humour and great hearty laughs. My hubby and I were engaged in a game of snooker recently. Both of us had no experience at all with this game. We were so clumsy in handling the long sticks. The only rule of the game was the winner will be decided based on the number of balls entered. My hubby and I posed in all sorts of wierd and funny positions when playing this game. At one point of time, my hubby showed off to me by doing a bend stroke. He bent his body so low onto the snooker table as if he was lying face front on the table. Then with limited vision, he pushed the stick forward. Instead of hitting the ball in front of him, the stick tilted and pointed upward to the ceiling. At that funny sight, I fell instantly onto the floor as if I was having a seizure. I grabbed my chest and tummy and was laughing uncontrollably. I laughed and laughed till all my body muscles ached. I was completely out of strength to stand up on my own. My hubby had to stretch out his hand to me to pull me up from the floor. Both of us continued laughing our hearts out.

So, laugh whenever you can. Laughter has miraculous healing power. Laugh and others will laugh with you. Share a humour and make your laughter contagious. Laughter will lift up your burdens. Laughter will make you forget about almost everything.

2009-09-11T09:48:00.005+08:00

Temporal Lobe Epilepsy (TLE) and the Paranormal

By Stuart Ross McCallum (author) Beyond my Control

Many unrelated conditions that can affect human beings often go under the microscope of ‘possible’ paranormal experiences. However, none has paranormal researchers ‘buzzing’ more than temporal lobe epilepsy (TLE). Many sufferers of (TLE) have spoken about their utterly bizarre and compelling paranormal experiences, which has been well documented in medical journals.

Being a sufferer of (TLE) for twenty years, I experienced many paranormal episodes which increased as my condition escalated. At the beginning I had feelings of déjà vu which manifested itself as an aura (simple partial seizure). During an aura I would often return to a village in England set sometime in the 16^th Century; the villagers were all joyfully smiling, and some dancing. While experiencing these strange thoughts and illusions, physically, I felt ill with a sick feeling rising up to my chest.

On other occasions I would find myself walking around a crowd of people who I believed I recognized, however, their faces were strangely distorted, and I could hear sinister cackling. As time passed, I encountered a variety of incredibly weird, ultimately bizarre episodes.

As my condition deteriorated, the auras were followed with a (complex partial seizure). At times, the aftermath (postictal state) of these seizures were both deeply disturbing, and frightening experiences. I would enter (postictal psychosis) and lose touch with reality immediately after the seizure passed.

A brief excerpt of one of these events is taken from my book:

One of the early episodes with my menacing postictal state occurred in my stained glass studio. The moment I shouted, "I'm having an aura," our seizure plan was immediately activated, and I was locked inside my studio.

The seizure passed, and I entered my postictal state. In a trance-like condition, I began to aimlessly walk around the showroom, glaring at the display of fragile glass and lighting. After a few minutes I clenched my hand into a fist and randomly lashed out, striking the glass panels. With my fist bleeding, I focused on the doors, kicking them over. As my postictal state was beginning to end, I calmly walked into the manufacturing area and lay down laughing and smiling.

Once I finished laughing, I sat down staring and wondering why my hand was bleeding. I heard Rhonda unlocking the back door. She went straight to the first aid box and attended to my hand. Fortunately my hand wasn't too bad and Rhonda kindly cleaned the cut, and dressed my wound. Feeling ashamed and hesitant, I asked, "What have I done this time?" Rhonda explained the ludicrous rampage, walking around my showroom, breaking glass.....I felt extremely gutted. As always, I had no recollection of the episode once the seizure had passed.

Today, (TLE) is still commonly misdiagnosed, and one of the most misunderstood conditions affecting human beings. Hopefully, by speaking out about (TLE) people will become more knowledgeable about this highly complex condition, and in time sufferers will be quickly and correctly diagnosed.

source : www.beyondmycontrol.net

Please visit www.beyondmycontrol.net. Ross will be most happy to welcome you. It was a great privilege for me to be able to meet Ross in person. Talking and sharing with Ross and reading his book "Beyond My Control" I experienced a great sense of control and triumph over epilepsy by Ross.

Ross tells in his book that although having epilepsy may be crippling and make many things beyond one's control, it is his and our choice to straighten things and put it into right perspectives. With a positive mindset and willingness to pursue full understanding of our epileptic condition, everything will eventually be within our control.

Make sure your epileptic condition is being thoroughly and properly diagnosed even if it means you have to visit more than 3 or 4 neurologists. Cooperate with your neurologist to ensure that you are being prescribed the right type of medication best suited to control your seizures. If different types of medication cannot help in controlling your seizures, you may want to discuss with your neurologist about surgery option.

Beyond My Control is a very inspiring book for caregivers and people with epilepsy to read. It is also a very moving and captivating book for casual readers who will find it hard to resist reading the entire book.

HAPPY READING

2009-09-08T13:32:00.005+08:00

Masked gang attack epileptic man

A County Tyrone woman whose son was beaten by masked men armed with iron bars has said she does not know why he was targeted.

The woman, who does not want to be identified, said he was too afraid to return to his house in the Carlton Drive area of Strabane.

The 25-year-old victim suffers from two types of epilepsy.

"They could've killed him. I don't know how anybody can inflict this kind of pain on someone else," she said.

The incident took place at about 2100 BST on Friday. The man was taken to hospital for treatment to injuries to his arms and legs. Police have appealed for witnesses to contact them.

source : news.bbc.co.uk

This world is becoming more and more unsafe to live in. I know crimes are inevitable and happen everywhere. Two months ago, I witnessed a massive group of protesters holding banners and shouting slogans right in the middle of a busy cross road section in Melbourne, Australia. Onlookers had a fright of their lives. I was frightened beyond words. I stood at a far distance to witness the crowd. Traffic from four sides of the roads came to a halt and standstill. Motorists abandoned their vehicles and passengers in trams scrammed for their safety. Police cars and personnels were seen everywhere trying to control the fuming crowd of protesters.

A group of four Sri Lankan men were standing beside me. I asked them if they know what the protest was about. Apparently, the issue was about the rapid rise in the rate of Asians being attacked by locals. The crowd had demanded to see and talk to the Mayor face to face. They wanted the Mayor to accept their memorandum consisting of steps and actions to be taken by the police to restore safety of Asians living there.

A week after the protest, The Star, a leading paper in Malaysia reported the protest held in Melbourne. Two weeks ago, my hubby emailed me from Guangzhou telling me he had read in the local newspaper of more similar protests held in Melbourne and Sydney. My hubby was very concerned about our safety in Melbourne.

One Sri Lankan man told me that his friend had been beaten and clobbered to death because he did not have spare change to give to a group of locals when confronted. Another Sri Lankan man told me that an Indian university student was being beaten mercilessly for not having a cigarette lighter to help light the cigarettes of some locals. The Indian student was sent to a nearest hospital in a comatized condition. The troubled and concerned Sri Lankan men advised me not to be out on the streets too late at night or to be in a midnight tram because of safety reasons.

How safe can I be? Does anyone know? I certainly do not know but the thought of being robbed, attacked and/or raped during a seizure sends chills down my spine. I once read in The Star paper that a grandpa of 76 years old was caught raping his teenage granddaughter who had multiple slerocis and cerebral palsy. Upon further questioning, the convicted grandpa confessed he had been raping his teenage granddaughter for close to ten years. His teenage granddaughter also had two abortions as a result of his raping.

Awareness about the sentiments and predicaments of people with disabilities (wheelchair bound, downs syndrome, parkinsons, alzheimer, cerebral palsy, learning disabled, mental retardation, autistic, etc) and people with epilepsy is so important in our society. It is with knowledge that acceptance will follow. Invoking understanding, loving and caring attitudes in people is a crucial role not only cut out for an epilepsy activist like me but rather it is everyone's duty to do it for the sake of their loved ones, friends and relatives.

Please join me in my activist role and help make this world a better and safer place for everyone to live in.

2009-08-31T11:39:00.005+08:00

HAPPY INDEPENDENCE DAY (HAPPY MERDEKA)

Today marks the 52nd year of Malaysia's independence from British rule. I am wondering how would it be like if Malaysia is still under British rule. Would there be a parade including the Queen's Royal Horse Carriage? Would Merdeka Square be named as British Square? Would Malaysians be loyal and patriotic to wave the British flag and shout LONG LIVE THE QUEEN? It is impossible to visualise and imagine but one thing I know and long for is to be able to live my life independently.

Like a nation and everyone else I would love to lead an independent life free from troubling others and asking for favours to be done. Don't all of us love to live a life where almost everything is within our reach and means?

People who drive tend to complain and grumble about congested traffic conditions when someone like me would have to think thrice on whether to risk my life or not in driving cos a seizure behind the wheels could spell death or critical injuries to others and/or myself. People who had to climb stairs as a result of a breakdown of lifts heave and pant and curse at the inefficiency of the building management people in their failure to quickly repair and restore the lifts back to working condition soonest possible. For people with epilepsy, climbing stairs also equates to risks and accidents. Two days ago, I read of a death case of a teenager epileptic girl who had a seizure while climbing stairs and as a result fell and rolled down the stairs to her death.

What I am trying to say here is I am unable to live an independant life on my own completely without any help or assistance from loved oncs. Naturally, I am very blessed to be loved, supported and cared for by my loved ones but then I cannot help feeling a great sense of helplessness during many moments in my life. The feeling of uselessness and constant dependancy drive me to frustrations, anger and resentments.

Ultimately, I need eyes watching out for me whenever possible. Like it or not, this is a fact of life and I have learned to be a better person in coping with my frustrations. Instead of harbouring on negativities I have emerged to be a more positive and stronger person in spirit, soul and faith. I endeavour to reach out to others to inspire them to overlook the "lost independance" and readily accept what life has to offer. Do not ever allow any form of disability to cripple your life. There are purposes in our lives.

Here I am wishing everyone "Happy Independence" and "Live Life To The Fullest" for those who need loved ones' assistance constantly. GOD BLESS.

2009-08-13T21:28:00.005+08:00

First seizure may fuel thinking trouble in kids

NEW YORK (Reuters Health) - Children who are intellectually normal may have problems with language, memory, learning and other thinking or "cognitive" skills at or around the time they experience a first epileptic seizure, according to new research out in the medical journal Neurology.

"Our study highlights the importance of testing children with epilepsy for possible cognitive problems soon after they are diagnosed with epilepsy in order to avoid these issues affecting them later in life, especially if they have additional risk factors," study author Dr. Philip Fastenau noted in a statement from the journal's publisher, the American Academy of Neurology.

Fastenau, from Case Western Reserve University School of Medicine, Cleveland, and colleagues studied brain function and academic achievement in 282 school-aged children with a first seizure and 147 healthy seizure-free siblings.

In this intellectually normal group of kids, 27% of children with just one seizure showed cognitive difficulties at or near the time of the seizure, and up to 40% of those who had additional risk factors showed signs of cognitive problems, the study team found.

A child with four risk factors was three times more likely than seizure-free healthy siblings to have cognitive problems at the first doctor's visit.

The study also found that children who took anti-seizure drugs had difficulties in processing speed, language, verbal memory, and learning, compared to children who did not take any seizure medication.

Children prescribed antiepileptic drugs "should be closely monitored for cognitive problems resulting from the epilepsy drug," Fastenau said.

"Surprisingly," he added, academic achievement in these children appeared to be unaffected around the time of the first seizure. This suggests that "there is a window early in epilepsy for intervention to avoid hurting a child's performance at school," the researchers say.

In a related editorial, Dr. David Loring, of Emory University in Atlanta, makes the point that, "Because this study found cognitive problems at the time of the first seizure or soon after, it provides strong evidence that these cognitive problems can be attributed to underlying brain abnormalities that lead to the epilepsy, rather than from extended exposure to epilepsy drugs or the effect of numerous seizures."

SOURCE: Neurology, online August 12, 2009 (www.reuters.com)

2009-08-09T14:17:00.009+08:00

TORN BETWEEN TO BE WITH SON OR NOT

Source : Camden News

Social services held emergency talks on moving an art historian to
secure accommodation amid fears for his safety just months before he
was killed by his son, the New Journal has learned. Professor Lee
Johnson, 81, was beaten up and left to die in a house fire started by
his son Michael in July 2006. Both men were rescued from the blaze but
Professor Johnson died from shock in hospital. The tragedy that
unfolded was described as "avoidable".

The council people did what they could to protect Professor Johnson,
including calling the police in for advice. But Professor Johnson
wanted to continue to see his son alone. Neither the council nor the
police could stop that.

Judge Beaumont said it was "necessary for the protection of the public
from serious harm at Michael's hands" that Johnson be held under the
Mental Health Act. At the time of the offence he was suffering from a
mental illness of a nature that makes it appropriate for him to be
detained in a hospital, said judge. The drugs and his epilepsy brought
him to this act. This tragedy has arisen as a result of the delusion
within Michael Johnson's mind after what was a solid relationship, and
under no normal circumstances would he dream of harming his father.

Dr Peter Fenwick, one of the country's leading epilepsy experts, said
Keppra, the drug Johnson was being prescribed, was controversial. It
is well known for three major effects, he said. It is extremely good
for seizure cessation. Secondly, it makes people very irritable and
thirdly it can induce encephalopathy (brain disease) and from that can
arise psychosis. A number of my patients do develop psychosis.

(Definition of psychosis)
In the general sense, a mental illness that markedly interferes with a
person's capacity to meet life's everyday demands. In a specific
sense, it refers to a thought disorder in which reality testing is
grossly impaired.

This piece of tragic news reminded me of my Penang friend. In an
epilepsy support group meeting, she related of a nightmarish event
that unfolded in her home. Her teenager son who was epileptic had a
seizure one afternoon. Knowing her son's unexplainable violence during
a seizure, she hid herself in her bedroom. Little would she expect her
son to dash into her bedroom with a chopper knife. She had known very
well from her son's past seizures that windows in her house would be
smashed and furniture would be broken. But to attack her with a
chopping knife was beyond her imagination.

She screamed for her life and yelled hysterically for help. In her
attempt to escape from her "unintentional" killing son, she suffered
slashes and cuts. She dashed into a storeroom and locked herself in.
She waited till silence was restored and heard her son groaning in
pain. She knew by then his seizure had stopped. She walked out of the
storeroom and found her son lying half conscious on the floor of the
kitchen.

She called the police in immediately before her son regain full
consciousness. She also called an ambulance for herself. Her son was
being detained in the police lockup. She survived the fatal killing
act coming from her epileptic son and was so traumatised that she
never wanted to see her son again. She told us in tears drenching her
blouse that it was extremely heartbreaking for her to see her son end
up in a hospital and eventually, in an asylum, permanently.

I empathised my friend's situation and as a mum of a son I was also
very heartbroken to hear such a tragic piece of news. Epilepsy robbed
her of her only child. Because of all the harrowing experiences my
friend had gone through with her son, my friend was determined to
share the moral of her story with all caregivers - ALWAYS CARE AND
LOVE YOUR CHILDREN FOR WHO AND WHAT THEY ARE. THEY ARE PRICELESS.
UNLESS THEY HAVE COMMITTED ACTS OF KILLING, DO NOT WALK AWAY FROM
THEM. VALUE AND TREASURE THEM ALWAYS BECAUSE YOU NEVER KNOW WHETHER
YOU WILL LOSE THEM OR NOT OUT OF EXPLAINABLE AND ACCEPTABLE HEALTH
PROBLEMS.

2009-08-02T10:01:00.004+08:00

IMPORTANCE OF SIGNAGES

What do you do when you are in an unfamiliar airport, train station, hospital, Immigration office or a new place you have never been to? You look out for signages. Our natural instincts are to look out for signages that can direct and guide us to spots , areas or streets that we are looking for. Lack of accurate and prominent signages spell calamity and give us a frightening and worrying sense of being quite lost and helpless. In such a case, we resort to asking people for directions.

Earlier this year, my son and I made a trip to a video arcade. We played and moved from one game to another until I stumbled upon the above signage. The signage had several warnings and one of it is has to do with people with epilepsy. It stated that if you have been diagnosed with epilepsy or experience seizures or dizziness with video product, you must consult a physician before playing. After taking a snapshot of this signage we ended our arcade trip as we are aware of the potential risks involved for both of us.

Imagine if there wasn't any warning signages for people with health risks especially people with epilepsy? A lot of young kids have their first seizures in video arcades. Parents are caught off guard and later regretted having brought their children to such places. I wish it is a mandatory Act in all countries for operators of video arcades to display prominent health warning signs for everyone to take note.

2009-07-18T15:39:00.007+08:00

ART FREES THE MIND AND UPLIFTS THE SOUL

Vincent Van Gogh is associated to art and epilepsy. I adore Van Gogh's paintings. I can spend countless hours looking, admiring and studying Van Gogh's paintings. Every time I look at Van Gogh's paintings I get a different feel. His paintings are full of life and colours. His painting techniques and strokes depict and describe who he is and how he is in character and attitude. Reading materials written by art historians about Van Gogh only deepens my understanding of this world reknown artist and reinforces my liking for art.

Art is therapeutic. Art heals my wounds, hurts and also helps me forget negativities. Art nourishes my soul because every time I finish a painting I am in a gratifying and thankful state of mind. I am deeply thankful to God for granting me the gift of art.

As a young girl I had a great liking for art. I left school hoping to pursue a degree in Fine Arts. Financial situation did not permit me to ensue my hope of studying my dream degree. I worked and studied part time with the hope to obtain a different degree for career advancement. In the weekends and spare time, I will visit my favorite Art Shop (Venus Art Shop) to source for art materials.

I browsed through lots of art books in bookshops to read and understand more about different modes of painting. I also enjoy spending my time in art galleries. Whenever I am in art galleries I lose track of time and meal hours.

I am a self taught person who loves art. Friends and family members have encouraged me to enrol for art courses now which I no longer wish to do so. I only want to paint with the talent that God has given and I believe it is by this way I am able to maintain my own style, creativeness and originality in my paintings. I aspire only to paint in my own "SERENE" way.

It is my aspiration and dream to have my own solo Charity Art Exhibition one day. I hope I will be able to sell my paintings to raise funds in aid of poor and needy PWE (people with epilepsy).

A series of desert scene painted in August 2008

I encourage everyone to pick up a brush and paint. Start painting and feel and experience the magical wonder, greatness and positiveness that are derived from painting. By painting, you are in control of your state of mind. Your emotions and heartfeelings will flow and move with your brush. One need not be an artist in order to paint. Every painting no matter whatever the outcome is your personal creation and a state of the art piece. A painting speaks of a thousand words.

2009-07-09T10:19:00.011+08:00

Inquiry into epileptic fit arrest

The arrest of an man with epilepsy in Ballymoney is being investigated by the police ombudsman.

It is alleged that Melvyn Graham, 46, was handcuffed while he was having a seizure on the Frosses Road last month.

His sister, Mandy, said the police may have mistaken Melvyn for a drunk or a drug abuser and he had suffered nerve damage in his wrists.

The PSNI said officers, using minimum force, restrained a person suffering from a known medical condition. "It is understood the ambulance staff later conveyed the man to his home when his condition improved and restraint was no longer required," said the PSNI.

The family said Melvyn had suffered epileptic seizures all his life and has had to be resuscitated on numerous occasions. Mandy Graham said on the day in question her brother remembered someone asking him what he had been taking.

"After that he cannot remember. He minds seeing the handcuffs," she said. But he cannot remember them being actually on him. We only have the physical marks and the damage done to the wrists that they'd definitely been there.

Solicitor Derwin Harvey said Mr Graham, who he described as a "vulnerable individual", was considering seeking compensation from police. He said most people in Ballymoney would be aware of his client's seizures and how to treat him. "They were very shocked and very angry that the police appear to have handcuffed him when he suffered a seizure on 25th June," he said.

As a result of handcuffing Melvyn, he has sustained quite serious injuries to his wrist as the handcuffs were applied when he was suffering from a seizure. Mr Harvey said police officers should be able to differentiate between a person having a seizure from someone who is on drugs. "The police have a duty of care to members of the public, especially vulnerable members of the public," he said.

"So the family are very angry if it is the case that they have applied handcuffs to him when he is in the middle of a seizure. It should have been apparent to the police that to take that course of action they were putting Melvyn at the risk of causing himself serious injury."

A spokesperson for the police ombudsman, Al Hutchinson, said: "We can confirm that we have received a complaint in relation to an allegation of assault."

" I am outraged by the senseless act of the police officers. I cannot imagine my hands being handcuffed during a seizure. Likelihood is I would have broken wrist bones because of my osteopinia condition. So often, I hear and read of news about police personels acting in uncivic and inappropriate ways when handling members of the public. The basic role of a police is to protect and safeguard people and not to unknowingly and carelessly harm people instead. "

source : news.bbc.co.uk

2009-07-05T13:19:00.009+08:00

EPILEPSY ID

We live in a world where having our own ID (Identity Card) is compulsory. The purpose of an ID is to allow people to identify us where ever we are. In my 30 over years of having epilepsy, my ID had being a crucial identification mode for medical people to obtain information pertaining to my spouse. There were numerous times when my husband had received calls from hospitals informing him of my admittance because of epilepsy.

Apart from carrying an ID, it is essentially important for PWE to carry an epilepsy ID as well. We all know it is very time consuming for medical people to retrieve official information about us from our National ID Registration Office and hospitals where our medical records are being kept. In order that medical people can attend immediately and appropriately to us, time is of the essence. An epilepsy ID instantly provides information such as phone numbers of our next of kin, the types of medication we are taking, the dosage of our medication and the names and telephone numbers of our neuro doctors.

My membership card with Epilepsy Foundation of Victoria,
my epilepsy ID card and my name card

CARRY AN EPILEPSY ID NOW. IT SAVES LIVES.

If you have difficulty in applying for an epilepsy ID, make yourself your own epilepsy ID. Be creative and artistic about your epilepsy ID. Cut a blank card the size of a credit card. On one side, design, draw, sketch and paint your own unique designs on it. Leave a blank space in the center of your design. Write the word EPILEPSY IN BOLD. On the reverse side of your card, draw lines for you to fill in your required particulars. Keep this card in your purse or wallet always. To keep the card in good condition, laminate the card. Constantly update your card if there are any changes over time.

2009-07-02T16:17:00.014+08:00

Footprints in 'The Epilepsy Legacy'... ...come join me

Please click on the image to read details

GREAT IS THY ACT CLARA

From my experiences as an epilepsy activist, I had come across too many people who are not the least bothered or interested to know anything about epilepsy. Mentioning the word "epilepsy" turns people away. Many pleasant, polite but uninterested people obliged by listening to me talk about epilepsy. Their faces looked blank. Amidst these people, there are also the small groups of interested people who expressed keenness in knowing more about epilepsy. They are either people with epilepsy themselves, caregivers of PWE or non epileptic people who have a golden heart in ensuing medical knowledge on a general basis.

One person I know who is non epileptic and has a sincere interest in engraving her footprints permanently alongside mine in my epilepsy journey is Clara. Last April, Clara had told me of her kind intention to participate in a run to help raise funds in aid of people with epilepsy. I was very much taken by Clara's charitable deed. Clara is a loyal follower of my blog. With the understanding she had acquired about epilepsy from my blog, Clara is determined to help me spread words about epilepsy as well as extending her help to PWE in her own unique ways.

On the 28th of June, last Sunday morning, I met up with Clara at the Federation Square, Melbourne, Australia, to see her run off with hundreds of participants who had joined in the Annual Melbourne Run. In her bid to finish the run, Clara had successfully gathered a handsome sum of Aud450 in aid of Epilepsy Foundation of Victoria. Thank you very much Clara for your noble deed.

I will continue to work harder to promote epilepsy awareness because great is my inspirational reward that comes from loyal followers like Ted from Red Bank, New Jersey, USA, Clara from Melbourne, Dodit from Indonesia, Ross from Melbourne, Evelyne from Malaysia, Ben from Taiwan, Jackie from Malaysia, Keimi from Hong Kong, Pauline from Melbourne, Rose from Phillipines, Dr Marshal Mo from Taiwan and many more other motivating supporters from around the world.

To everyone, especially people with epilepsy, SPREAD YOUR WINGS AND FLY HIGH - REACH OUT TO THE WORLD, TOUCH AND BE TOUCHED.

On the left, my son Edmund and Clara in the center

Clara walking with participants to the starting point of the Melbourne Run

Clara with her medal

2009-06-21T21:10:00.001+08:00

2009-06-19T10:39:00.001+08:00

High-Tech Imaging May Lead to Development of New Therapies

(HealthNewsDigest.com) - Researchers have discovered brief moments of oxygen deprivation prior to an epileptic seizure in the areas of the brain where the episodes occur. Detecting dropping oxygen in the tissue -- called hypoxia -- may eventually lead to the development of therapies that recognize these events and prevent the seizures from occurring. Experts have published results in three different peer-reviewed journals describing their observations in brains of rats and humans.

Using special high-resolution video cameras, Dr. Theodore H. Schwartz, a neurosurgeon at NewYork-Presbyterian Hospital/Weill Cornell Medical Center and his team, including Drs. Hongtao Ma and Mingrui Zhao, are able to capture visible changes in blood flow inside the brain. Hemoglobin, the molecule in the blood that delivers oxygen to tissues in the body, changes color from dark to bright red when oxygenated, allowing scientists to see visible changes in oxygen delivery to the brain in real-time. Dr. Schwartz believes that oxygen deprivation to the same areas over time may explain the brain damage and increasing severity of seizures in epileptic patients.

Dr. Schwartz, who is also a professor of neurological surgery at Weill Cornell Medical College, says in the future a device that can detect hypoxia in the brain, and then deliver a drug to prevent epilepsy, may be able to counteract and prevent a seizure before it happens. The idea is similar to a pacemaker that prevents irregular pumping of the heart.

The three studies have recently been published in the Journal of Neuroscience, the Journal of Neurophysiology, and the Journal of Cerebral Blood Flow & Metabolism.

source : www.healthnewsdigest.com

2009-06-17T10:37:00.009+08:00

Epileptic driver who had seizure at wheel jailed

THE Epilepsy Foundation has slammed an epileptic driver who ignored medical advice and killed an unborn child.

Steven Harris's decision to drive when he regularly suffered seizures and was banned from the roads cost the life of Max James, who was stillborn in December 2007. Harris, 40, crashed into Kate James's car in a Broadmeadows car park, the impact killing her unborn baby 27 weeks into the pregnancy. He was today jailed for at least two years for negligently causing serious injury to Ms James and driving while suspended.

Epilepsy Foundation of Victoria CEO Graeme Shears said Harris's behaviour did little to help ease the stigma of an already misunderstood condition.

"People with epilepsy already suffer a lot of stigma and prejudice because people don't understand epilepsy well," he said.

"We don't condone the behaviour of Steven Harris and we strongly advise people not to drive if they are suffering seizures." Mr Shears said loss of mobility was a major issue for many people with epilepsy and there should be more support for them.

""Whilst a lot of PWE are able to cope very well with mobility problems in their lives, a lot of PWE do not cope well. One of my epileptic friends, John, used to frequently quarrel with his wife. He is epileptic and does not drive. His wife has to walk for an hour every morning to get to the bus stand to catch the public bus to go to work. His frustrated wife used to grumble and complain a lot about tired of walking everyday. It came to the time when his two young school going boys had to start schooling.

John said, "I will have to walk with my sons to school which is impossible because the nearest school is located at least a 45 minutes' drive from his home". John also commented that his life is totally wrecked without his own mode of transportation.

I highlighted John's plight to some of my friends. We agreed to get John a motorbike. With a bike, John's family life improved tremendously. The only thing is I had to keep reminding John not to go on the bike whenever he has an aura. John told me there were several times when he had auras while on the bike. For his own and other peoples' safety, he quickly park his bike by the roadside and lie down on the roadside until the auras are over.

People tend to ask me how I cope with my mobility problems since I do not drive also. My reply is always my hubby, my siblings and my good friends. My hubby switched from a routine office job to work from home so that he can send our son to school as well as send me to the supermart and other places that I need to go. My siblings and good friends will have to turn up at my house to pick me up for appointments with them.

Of course, there were often times when my hubby is unable to offer me lifts. During such times, I will just have to postpone appointments or cancel appointments. The worst case is to dial for a cab which is not the best option at all in the country where I live. There have been too many frightening stories being told of our cabbies. If it is possible, I will walk to my destination.

On a positive and humorous note, I often tell friends I have two car keys to my own cars. So, mobility is never a problem. They always look stunned beyond belief. After that, I will explain to them that my two car keys actually mean my two "KAKI". In my national language, kaki means leg. In other words, I have my pair of legs to walk to any where I want.

If you are epileptic and know you are unfit to drive, please do not go against the rules and insist on driving. If you do, then you are doing so for selfish reasons, not bearing in mind your own and other peoples' safety"".

2009-06-09T09:07:00.008+08:00

REVIEW OF “BEYOND MY CONTROL”

RATED

Stuart Ross McCallum shares a true account of his battle with epilepsy - beginning with the peculiar sensations he experienced as a teenager that led to his diagnosis and concluding with his eventual recovery from a temporal lobectomy.

McCallum vividly describes his twenty-year journey of living with epilepsy and how this unpredictable disease has not only impacted his life but the lives of everyone around him.

Beyond my Control is an inspirational book for the millions of people who suffer from this insidious condition, and family and friends who are directly affected.

Beyond my Control provides an honest, emotional look into a highly complex and often misunderstood condition and how one man's perseverance helped him break through the darkness to find hope on the other side.

A powerful (true story) of hope and courage, for anyone struggling.

Photo taken with Ross in front of Melbourne Art Centre

Hi Ross,

The minute I got your book "Beyond My Control" it was truly beyond my own control to put the book down. I was glued to your book. Your book tells of confusion, bitterness, humour, life risking decisions, family's care and love for you, especially your wife, Lisa, and made a poignant point to readers that life is still beautiful with epilepsy. Life does not end with epilepsy. Having epilepsy is not a life sentence. There is always hope, and we should never give up on our hopes, even if we have braved through countless stormy and turbulent years in our lives. With an unceasing zest to conquer and defeat the invisible enemy inside us, we will excel in our lives beautifully and meaningfully.

"Beyond My Control" is definitely a "Must Have" and a"Must Read" book. Ross, thank you so much for sharing your meaningful and inspiring story with the world. You have successfully triumphed over epilepsy. You are a great living testimony of how a remarkably troubled epileptic life has been transformed into a sweet, serene, and beautiful life.

Warmest Regards,
Serene Low
A person with epilepsy and an epilepsy activist

"" I was very pleased to have the opportunity to meet up with Ross on 19th of May 2009 in Melbourne. Ross has a warm, bubbly, charming, pleasant, courteous and humorous personality. Talking to Ross for the first time was like talking to my good old pal. We had a great time of sharing and exchanging of our epilepsy stories. If you are struggling with epilepsy or you are someone who likes to have a good read in an hour’s time, I encourage you to visit www.beyondmycontrol.net for more information regarding Beyond My Control””.

2009-06-02T09:41:00.004+08:00

DISCRIMINATION

Photo taken with my Chinese friends in Xiamen International Convention Centre

We all know that discrimination exists everywhere. Whether we are in developed countries, underdeveloped countries or developing countries, discrimination affects us in one way or another. A society without discrimination is a dream society.

It is bad enough to be discriminated by society but then to be discriminated by one's own family members is intolerable and inhumane. People with epilepsy (PWE) by and large face a lot of discrimination from family members as well as relatives and friends.

I was at an epilepsy congress in Xiamen last year and I had the opportunity to get to know new epileptic friends. For the three days I was in the congress I had noticed that China delegates, a big group of them, had kept to themselves and no delegates of other nationalities had approached or mingled with them. Sensing some elements of discrimination, I opened up myself to the China delegates.

Talking to the China delegates was the best thing I had done in the congress. They were such warm, pleasant, kind and friendly people. As soon as I apologised for my poorly spoken Chinese language, all barriers were broken free. Communication was free flowing from my Chinese friends. During and after our final night's dinner at the convention hall, my Chinese friends were crossing tables to my side to talk to me and my favourite part of the talking was listening to their epileptic stories.

Liu Xiao Ying from Shanghai had this to share with me.

""Dear Serene,

Thanks a great lot for sending me our photos. These days, I have constantly been thinking about your questions. Yes, our Chinese PWE were too shy to talk to other delegates and merge into other groups. The English speaking delegates avoided us. My epileptic friends are confronted with more discrimination from the society, the people and even their own families. Social education regarding epilepsy is a tough job for our Chinese epilepsy self help group. We are all green hands and your experience can be helpful for us.

Best regards,

Xiao Ying
Shanghai ""

Is it fair to discriminate PWE for having a condition that they did not ask to have? Whenever, you look down or discriminate a person based on some shallow knowledge or the physical outlook of a person, it really means that you have to first see the speck of wood fray in your eyes before you begin to judge and discrimate others.

Respect and honour one another for God made all of us to be on par. No one is far more inferior than another. No one deserves and no one should.

2009-05-19T08:51:00.004+08:00

Brain scan could stop epilepsy pre-surgery

WASHINGTON, May 18 (UPI) -- U.S. experts said a technology being developed for use in diagnosing brain issues could eliminate costly and invasive pre-surgery for epilepsy patients.

Susumu Sato, a physician and researcher with the National Institute of Neurological Disorders and Stroke within the National Institutes of Health, said epilepsy patients often must undergo a pre-surgery procedure that involves removing a portion of the patient's skull and temporarily placing electrodes on the surface of the brain to detect areas involved in producing seizures. Doctors then determine whether those parts of the brain can be removed.

However, he and other experts told the Milwaukee Journal Sentinel that a scanning technology known as magnetoencephalography, or MEG, could eliminate those procedures by detecting the problem areas of the brain without surgeons cutting into the patient. Sato said MEG costs thousands less than the currently used preliminary surgeries, but is not currently covered by most insurance companies.

"It is very exciting technology," Sato said.

Experts said the technology, which is currently being used in several studies, could also be used to benefit patients with Alzheimer's, Tourette syndrome and other neurological issues.

source : www.upi.com/Science_News

2009-05-10T09:24:00.003+08:00

Being a full-time mother is one of the highest salaried jobs in my field, since the payment is pure love. ~Mildred B. Vermont

HAPPY MOTHER'S DAY TO EVERYONE WHO IS A MUM

2009-05-06T15:01:00.007+08:00

TRYING TO BUY CHEAPER ALTERNATIVE DRUGS?

If you are trying to source and buy cheaper alternative or generic medication, please do not attempt to do so.

Owing to bad economic times, a lot of people could be trying to buy cost saving alternative or generic medication. I was at the hospital two months ago for my annual follow up. Waiting in a crowded room, I overheard some conversations between patients and caregivers.

"Oh my goodness! The cost of your medication has increased again. I won't ever buy from the hospital's pharmacy again. I will ask my friends to recommend me some good pharmacies where I can buy cheaper generic drugs for you. Don't worry. The generic drugs are just the same as the pricey branded drugs you are on now and better still, the cost is definitely cheaper than what I am paying now".

"Oh dear me! I can't afford to buy from the pharmacy in the hospital anymore. Do you know of any pharmacies outside the hospital where I can buy the same medication at a much lower price?"

There are a lot of generic drugs being sold in pharmacies. You will be tempted to buy cheaper generic medication. BEWARE. Consuming generic drugs may have grave consequences. The composition in the generic drugs may not be 100 per cent the same as in the drugs prescribed by your doctor. Generic drugs, instead of treating, controlling or improving your condition might do more harm to your condition and health, making it more difficult for your doctor to treat you. And because you know you had switched to less expensive generic drugs, you hide that fact from your doctor fearing that he might not take up your case anymore.

Even though, you may be able to buy cost saving original branded drugs from pharmacies outside the hospital, make sure that you check the orginality of the drug from the packing of the drug like name of manufacturer, where it is made in, the dosage of the drug and expiry date.

Inform your doctor on your next visit of the source of your drug purchase. If possible, bring along your drug to show it to him/her. Precaution is always the best action.

I am aware of the availability of cheaper generic drugs. I will save and thrift on other things but not when it comes to buying my medication. My epileptic condition and health should never be compromised.