Schoolgirl helps children understand epilepsy

 

LAYLA Reid is just seven years old but she has already had her first book published.  The youngster decided to write a book about epilepsy for other children because of her own experiences with her mum Sarah.

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Mrs Reid has suffered from epilepsy since she was seven years old, suffers from seizures regularly, and wrote Epilepsy Book For Kids to help other youngsters understand the condition.  The 31-year-old said: 
"I remember when Layla was little she got very upset when she saw me having a seizure."

Layla, a pupil at Staple Hill Primary School, now knows what she has to do to deal with her mum's seizures.  Mrs Reid was looking for a book for Layla to help her understand epilepsy and found there were plenty of books aimed at those who have epilepsy – children or adults – or information about it for doctors.  However there was none for those who have relatives who suffer from it.

Mrs Reid said: "The book's message is 'You are not alone, there are other people like you'."  Layla, who lives with her mum, dad Mark, 36, and her sister, Lauren, in Soundwell, took it upon herself to make her own book.  "I feel proud of myself and happy that it's going to help a lot of children out there,"' she said.
Mrs Reid said: "Layla was sat at the kitchen table and always seemed to be writing. She was always going around with a little notebook and pen. She showed me what she was doing and I thought it was brilliant, a really good idea."

The book shows what someone should and should not do when someone is having an epileptic seizure through words and illustrations. The young author said: "I liked writing and drawing the pictures."  Mrs Reid said: "The main thing is to raise public awareness of epilepsy and if we can help anyone or save anyone's life, we'll be pleased."  Wanting to get it published, Mrs Reid eventually contacted publisher John Adler, of Pomegranate Books, who said: "I was very taken by it, I thought it was a brilliant idea."
Mr Adler consulted with Epilepsy Action and Young Epilepsy, charities that provide information and support for epilepsy sufferers.

The book is fulfilling its purpose already, as a woman had a seizure in front of Mrs Reid recently and afterwards wanted to buy Layla's book when she heard about it, as she also has a young daughter who may want to find out more information.

Layla plans to use her book to teach her sister, Lauren, how to handle their mum's seizures when she is older.  Mrs Reid added: "We're really excited for Layla that her book is published, and really excited that we can help other people."

The book is available through book shops and online at www.pomegranatebooks.co.uk.






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Epileptic Suffered Seizures During Marathon To Finish Race

Epileptic runner Simone Clarke: I had 20 fits

 but I still finished the marathon

Epileptic runner Simone Clarke amazed her family and friends by completing the London Marathon – despite suffering 20 fits on the route.

Helping hand: Epilepsy Society runner Simone Clarke, right, with her friend Tally Hall who caught her and brought her round every time she collapsed (Picture: SNPA)

 

Simone collapsed and remained unconscious for 30 seconds every time she suffered a seizure.  But she managed to get back up on each occasion and went on to complete the 26 miles (42km) in six and a half hours.

Ms Clarke, 39, has about four seizures every day but it didn’t  put her off entering Sunday’s marathon to raise money for the Epilepsy Society.  She was joined in training and the event itself by her friend Tally Hall, 27, who ran by her side to catch her every time she fell and bring her around. 

Ms Clarke said: ‘By the time we got to 15 miles I was in tears because I was so annoyed we had lost the pace.  ‘But by that stage I had already had lots of fits and I was still standing so I thought, stuff it, I’m just going to finish it.’

During practice 20-mile runs Ms Clarke suffered one or two seizures but nothing on the scale she had on the day. The first fit came at the eight-mile mark when Mrs Hall began suffering severe pains caused by a stomach problem.  Having left her medication at home, the pains became steadily worse and the stress triggered her companion’s first fit.

Mrs Hall  said: ‘I was expecting Simone to have a couple of seizures but I wasn’t expecting a constant battle of seizures and running. I have never known her to be that bad before.’

Ms Clarke, from Southampton, raised £800 for her charity and says she owes her success to her friend. ‘Without her I would never have been able to do it,’ she admitted.  Angie King, from the Epilepsy Society, said the charity had never heard of a runner suffering a seizure during the marathon before.
She added: ‘Simone is unique and, to us, an absolute star.’

Read more: http://www.metro.co.uk/news/897273-epileptic-runner-simone-clarke-i-had-20-fits-but-i-still-finished-the-marathon#ixzz1t6pyganr

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New hope for epilepsy sufferers

Scientists have developed a new type of drug which is capable of reducing the number of epileptic seizures in sufferers.

Perampanel, the result of trials carried out by researchers at Johns Hopkins University School of Medicine, is even effective in those patients where the condition is resistant to current medication.

Doctors explained that the drug works by inhibiting a glutamate receptor in the brain, which subsequently blocks an excitatory response to cut the seizure rate by more than 50 per cent.

Study leader Gregory Krauss said that these sites had been a target for epilepsy research for years and progress had been "very difficult", but this breakthrough was "good news" for sufferers – especially for the drug-resistant population.

The Brain Research Trust states there around 40 different types of epilepsy and the Johns Hopkins scientists added that Perampanel could reduce the frequency of all types of seizures including limb twitching and whole-body convulsions.

© Adfero Ltd

Source: http://www.privatehealth.co.uk/news/april-2012/new-hope-for-epilepsy-sufferers-36931/

Epilepsy hope offered by new diagnostic system

New hope: Sohban Mahmood undergoing telemetry monitoring at Sheffield Children s Hospital.

Published on Sunday 25 March 2012 08:54

A SCHOOLBOY from Sheffield who suffers from epilepsy so severe he needs round-the-clock supervision is pinning his hopes on a groundbreaking new diagnostic procedure. Sohban Mahmood, aged 12, from City Road, Norfolk Park, has lived with the brain condition since the age of five, suffering as many as 11 debilitating seizures a day. The Heritage Park Community School pupil cannot even walk down the street alone in case he has a fit - meaning he is totally reliant on the vigilance of his family.

Now Sohban has become one of the first patients to undergo a new procedure at Sheffield Children’s Hospital, to see whether brain surgery could change his life. The youngster underwent a four-day monitoring period, in which telemetry equipment - available in only a few hospitals in the country - recorded his every move.

Doctors simultaneously studied electrical activity in his brain and the video recording of his movement. They hope their findings will allow them to see which part of his brain contributes to the seizures, which means medics will be able to plan accurate brain surgery.

Around 80 per cent of epileptic children who have surgery end up being seizure-free.

Sohban’s mum Ruksana, a nursery nurse and mum to three other children, said: “Ever since birth, he’s had blackouts, shaking episodes and full fits.

“If the seizures were controlled it would give Sohban and our family more sense of relief.”

The treatment is now to be made available to more children, and the hospital has secured its second telemetry bed.

Clinical physiologist Sheila Seville said: “Because tests are so time-consuming, having the facilities to run two telemetry recordings at the same time will greatly improve the service we offer.”

Source : thestar.co.uk/news/epilepsy

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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)

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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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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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