Warning of epilepsy drowning risk

Emma Wilkinson Health reporter, BBC News People with epilepsy should take precautions when swimming People with epilepsy are up to 19 times more likely to drown than those in the general population, research suggests. A University College London review of 51 studies from around the world showed 88 deaths where five would be expected, adding many could have been prevented. Taking showers instead of baths and swimming with a friend could save lives in the event of a seizure, suggests the report in Neurology journal. Epilepsy affects around one in every 131 people in the UK. People with the condition are more at risk of accidental death and a higher chance of drowning had been reported, but the risk had never been quantified. Every year a number of patients die in the bath so convincing people to take showers would be life saving Professor Ley Sander, study leader A team at the Institute of Neurology at University College London looked at data from 51 studies from around the world. They compared the number of deaths from drowning with what would be expected in the general population of the country involved. Overall the risk was 19 times higher for people with epilepsy and in England and Wales specifically the increased risk was 15 times higher. Prevention Study leader Professor Ley Sander, who works part-time as an NHS consultant in epilepsy, said he had two patients die from drowning this year alone. The numbers are relatively small but the important thing is that these deaths are preventable. Every year a number of patients die in the bath so convincing people to take showers would be life-saving. He added, "We're not saying that people shouldn't swim but that they need to be aware of the risk and to go with someone who can help if they have problems." Professor Sander also advised telling a lifeguard if swimming at a swimming pool and to swim during quieter sessions so it was easier for the lifeguard to see them. He stressed that those most at risk were the people with "active" epilepsy and who had regular seizures. "We always need to do whatever we can to ensure seizure control," he said. A spokesperson for Epilepsy Action said: "People with epilepsy can enjoy the benefits of taking part in many water activities, but need to take sensible precautions to reduce risk of drowning. Because there is always a possibility that a seizure could happen, it is important not to underestimate the potential risks when in or near water." " My Drowning Experience " by Serene This BBC write up reminds me of my own drowning experience. Unaware that a seizure would happen so untimely when I was swimming in the water of Port Dickson, a beach resort, I almost drowned to death. If not for the swift action of my brother's friend I would be dead thirty years ago. Since that incident that almost took my life I grew to be very phobic of swimming all alone. In fact I hate to be in the sea water for the rest of my life as the water constantly reminds me of potential death at my doorstep. I also dislike swimming all the more because every time I swim in the pool my husband or son will have to be constantly by my side all the time. This gives me a great sense of restriction and insecurity in my life which I dread. I prefer not to swim at all and choose to sit by the side of the pool looking at my husband and son swim or read my favourite book, newspaper or magazine. Apart from swimming I have lots of other interesting and active sports to engage in. I swapped swimming for bowling. In the bowling alleys I get to enjoy bowling on my own very much. At least I won't have to have someone to keep their eyes on me like a hawk. And although I never had proper lessons in bowling I bowled freestyle in my own "Serene" ways. I enjoy a great sense of freedom in this game and always end up being happy with my bowling workout.. Epileptics can still enjoy a great sense of freedom if only they know how to. Explore, Experience and be Exhilarated with all the things we are able to do and achieve in life.

Five-year-old's 999 saviour call

Jakob Seviour stayed calm and made the 999 call

An ambulance service has praised a five-year-old boy after he reported his mother had collapsed and was unconscious in their home.

Jakob Seviour from Frome in Somerset may even have saved his mother's life, a spokesman said.

Sarah Welsh suffers from epilepsy and had told Jakob how to react.

Alan Jacob of the Ambulance Service said: "He was incredibly calm, incredibly grown up and he answered the questions so precisely."

After Jakob's call ambulance staff rushed to the house and successfully revived Ms Welsh.

Mr Jacob added: "If he didn't understand them, then he would say 'I don't understand', so for a lad of his age he was really incredibly grown up."

Ms Welsh told BBC News: "I remember feeling slightly ill because normally I get fair warnings but this time it just came over me so quickly.

"I am so proud of him - I have heard the tape and it broke my heart really."

Source : BBC News

MEANINGFUL AND FRUITFUL EPILEPSY BLOG


When my disabled activist friend told me to set up my own epilepsy blog I was very reluctant to do so. After much thoughts, consideration and also motivated by my husband (Cheong) and son (Edmund) I decided to set up my own blog. I had no knowledge on how to go about setting up a blog but with my son’s assistance the blog was started. There was no looking back. Today, my blog has been the most meaningful and fruitful form of electronic communication in my life. People from all walks of life and around the world are able to be in contact and communication with me. For an epileptic like me who was once a great recluse my blog has brightened and painted my life beautifully.

Friends write to tell me their epilepsy stories and caregivers tell me how they have accepted and coped with their epileptic son or daughter. Below is my Indonesian friend's story.

“My name is Yoedo Soetrisno. I am a Muslim father of 3 children. I live in a small city area in central Jawa of Indonesia. On one particular night I did not expect my second son who is 8 years old to have a seizure. The seizure lasted about 10 minutes. He did not show any symptoms or have a temperature prior to his seizure. He was a very normal child. We rushed him to the nearest hospital. He regained consciousness when we arrived there.

The result of an EEG test confirmed that my son has epilepsy. It was a test and challenge for our family to come to terms with. To know and understand more about epilepsy I started sourcing around for more information about epilepsy. I asked my friends, neurologists and also searched the internet websites. I came across this blog managed by Serene Low who proved that she could still live a normal and meaningful life although she had being an epileptic for thirty over years. I found a lot of useful information in her blog which explained the recent seizure that my son had.

It is clear that we can still lead a normal life by taking the appropriate medication. My son is taking two spoonfuls of anti epileptic syrup a day. My son is as normal and active as other children. On his school report card day he was the second best student in his class. He is also actively playing musical instruments especially the organ and takes part in sports.

I hope my son’s story is an encouragement to all caregivers who are experiencing the same problem as me. I continually seek forgiveness and healing from God.”

Drawn on April 2008 ( Summer Flowers)

SHAKE IT OFF AND STEP UP


A parable is told of a farmer who owned an old mule. The mule fell into the farmer's well. The farmer heard the mule 'braying' - or - whatever mules do when they fall into wells. After carefully assessing the situation, the farmer sympathized with the mule, but decided that neither the mule nor the well was worth the trouble of saving. He called his neighbors together and told them what had happened and enlisted them to help haul dirt to bury the old mule in the well and put him out of his misery.

Initially, the old mule was hysterical! But as the farmer and his neighbors continued shoveling and the dirt hit his back...a thought struck him. It suddenly dawned on him that every time a shovel load of dirt landed on his back...HE SHOULD SHAKE IT OFF AND STEP UP! This he did, blow after blow.

"Shake it off and step up...shake it off and step up...shake it off and step up!" he repeated to encourage himself. No matter how painful the blows, or distressing the situation seemed the old mule fought "panic" and just kept right on SHAKING IT OFF AND STEPPING UP!

You're right! It wasn't long before the old mule, battered and exhausted, STEPPED TRIUMPHANTLY OVER THE WALL OF THAT WELL! What seemed like it would bury him, actually blessed him...all because of the manner in which he handled his adversity.

THAT'S LIFE! If we face our epilepsy problems and respond to them positively, and refuse to give in to panic, bitterness, or self-pity...THE ADVERSITIES THAT COME ALONG TO BURY US USUALLY HAVE WITHIN THEM THE POTENTIAL TO BENEFIT AND BLESS US! Remember that FORGIVENESS--FAITH--PRAYER-- PRAISE and HOPE...all are excellent ways to "SHAKE IT OFF AND STEP UP" out of the wells in which we find ourselves!





- Author Unknown

SCANS OR TESTS DESIGNED TO DETECT ABNORMALITIES WITHIN THE BRAIN

Electroencephalogram (EEG)

An EEG records the electrical activity of your brain via electrodes affixed to your scalp. People with epilepsy often have changes in their normal pattern of brain waves, even when they're not having a seizure.

To prepare for an EEG, avoid elaborate hair styling, metallic hair spray or greasy hair dressing. Refrain from caffeine for six hours before the test. The procedure itself is painless and usually lasts about 30 minutes. However, it can take as long as an hour to place the electrodes on your scalp.

In some cases, your doctor may recommend video-EEG monitoring. This can be helpful because it allows your doctor to compare — second by second — the behaviors that occur during a seizure with your EEG pattern from exactly that same time. This helps your doctor pinpoint exactly where your seizures originate, which aids treatment decisions.

Video EEGs are expensive because you usually must stay at the testing facility for several days. The EEG electrodes stay attached for that entire time, and you are videotaped continuously.

Computerized tomography (CT)

Using special X-ray equipment, CT machines obtain images from many different angles and join them together to show cross-sectional images of your brain and skull. CT scans can reveal abnormalities in brain structure, including tumors, cysts, strokes or tangled blood vessels. This helps your doctor rule out other potential causes of your seizures.

To prepare for a CT scan of your head, you should remove such things as earrings, eyeglasses, dentures and hairpins. You may need to have an intravenous (IV) line inserted if your test requires the injection of a contrast material — which makes abnormalities easier to see. During the test, you will lie on a table that slides into the CT machine. Depending on the number of images needed, the scan can take between two and 20 minutes. The procedure is painless.

Magnetic resonance imaging (MRI)

An MRI machine uses radio waves and a strong magnetic field to produce detailed images of your brain. Like CT scans, MRIs can reveal brain abnormalities that could be causing your seizures. Dental fillings and braces may distort the images, so be sure to tell the technician about them before the test begins.

During the test, you will lie on a padded table that slides into the MRI machine. Your head will be immobilized in a brace, to improve precision. The test is painless, but some people experience an uncomfortable feeling similar to claustrophobia inside the MRI machine's close quarters. If you think you may have a problem like this, your doctor can prescribe anti-anxiety medications beforehand.

A special type of MRI — called functional MRI (fMRI) — can measure the small metabolic changes that occur when a part of your brain is working. An fMRI can record which areas of your brain are working when you perform certain tasks, such as rubbing a block of sandpaper or answering simple questions.

Doctors know the general areas of the brain responsible for such tasks as thought, speech, movement and sensation, but the precise locations vary by individual. An fMRI can identify the locations of these critical functions so that your doctor can determine if epilepsy surgery would be a safe option for you.

Positron emission tomography (PET)

PET scans use injected radioactive material to help visualize active areas of the brain. The radioactive material is tagged in a way that makes it attracted to glucose. Because the brain uses glucose for energy, the parts that are working harder will be brighter on a PET image.

After the radioactive material is injected, it will take between 30 and 90 minutes for the substance to accumulate in your brain tissue. During this waiting period, you will be asked to rest quietly and not talk or move around much. The actual scan takes 30 to 45 minutes. The amount of radioactive material used in the test is very small, and its glucose-binding activity in the brain lasts only a short period of time.

Single-photon emission computerized tomography (SPECT)

This type of test is used primarily in people being evaluated for epilepsy surgery when the area of seizure onset is unclear on MRIs or EEGs. SPECT imaging requires two scans — one during a seizure and one 24 hours later. Radioactive material is injected for both scans and then the two results are compared. The area of the brain with the greatest activity during the seizure can be superimposed onto the person's MRI, to show surgeons exactly what portion of the brain should be removed.

Source: mayoclinic.com

JEANS FOR GENES DAY & GEFS+

Jeans for Genes is a major fundraiser of the CMRI (Children's Medical Research Institute) in NSW, Australia. Jeans for Genes Day is held on the first Friday in August each year. It is a day where everyone can wear jeans and simply make a donation or buy a badge whilst supporting a great cause in helping today's scientist for tomorrow's children.

Chances are you probably know someone who has a genetic disease because one in twenty children are born with some form of genetic fault. This prompted me to wonder if I have some form of genetic fault that resulted in me being epileptic.

On a recent trip to my neurologist's clinic I was made known of GEFS+ which stands for Generalised Epilepsy with Febrile Seizure plus. GEFS+ is an unusual epilepsy syndrome in that it describes families who have several members from different generations with epileptic seizures.

In family members with epileptic seizures they almost start with febrile convulsions (seizures associated with high temperature). Normally febrile convulsions stop after the age of six. In GEFS+ families, children may go on to have febrile seizures well beyond this age group or develop other seizure types not associated with fever. Some people with GEFS+ are found to have a specific fault in their genes. This may provide some clues to the genetic basis of some forms of epilepsy.

My mum's family has three generations of people with epilepsy. My aunty (mum's sister) was epileptic. My brother had febrile seizure which he had outgrown. I had febrile seizure which stopped at the age of 7 but started having tonic clonic seizures at the age of 18. My cousins and my niece had febrile seizure which they all have outgrown.

Do you have epilepsy and also come from a family with generations of people having epilepsy? If yes, you might want to consult a neurologist or epitologist to enquire more about having a DNA test done.






Source: epilepsy.org.uk
jeansforgenes.org.au