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

.

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.

.

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/








.

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.









.

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.

Read more: http://www.theengineer.co.uk/advanced-acoustic-monitor-detects-breathing-difficulties/1004884.article#ixzz0zrJHTRg4







.

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.











.

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.

.