Girl, 10, saves epileptic mum

Sarah Boyd and Family. Husband Darren, son Lewis, daughters Keely and Hannah. Keely helped save Sarah when she suffered an epileptic fit.

Published on Friday 2 November 2012 15:23
 

A QUICK-THINKING ten-year-old rushed to her pregnant mother’s rescue after she had an epileptic fit.

Schoolgirl Keely Cattigan jumped into action to move potential dangerous objects out of mum Sarah Boyd’s way while she fitted, before calling an ambulance.

She even handed maternity notes to paramedics and told them how far along her mum’s pregnancy was.
The incident happened two weeks ago at the family’s Lakes Estate home in Bletchley. Keely had been at home with her seven-year-old sister Hannah, and brother Lewis, three, when her mum had the fit.

Dad Darren Cattigan, who was at work at the time, said: “I am a very, very proud dad. I walked through the door just after the paramedics had arrived and Keely came to me with a massive beaming smile and said ‘I did it daddy, mummy had a fit and I called the ambulance.”

Sarah, who has had epilepsy for 17 years, added: “It would be scary enough for an adult to handle let alone a 10-year-old as even adults can panic, but we were told she was cool as a cucumber.”
South Central Ambulance Service Technician Michelle Coulson said: “Keely was awesome.”





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Meryl Streep supports epilepsy charity event

BLOOMINGDALE, Ill. (AP) — Meryl Streep has attended a charity gala in suburban Chicago to help raise awareness about pediatric epilepsy and a special diet that advocates say can treat the disease.
The actress has been helping support The Charlie Foundation to Cure Pediatric Epilepsy since working on a 1997 TV movie about the issue with director Jim Abrahams, whose son had the disease.
Streep says it's "unconscionable" more people aren't being told about the high-fat and low-carbohydrate ketogenic diet. Advocates say it can help reduce the frequency of epileptic seizures.
The (Arlington Heights) Daily Herald reports that (http://bit.ly/SdXrXZ ) Friday night's event in the western suburb of Bloomingdale was part of a four-day international symposium on dietary therapies for neurological disorders.




Information from: Daily Herald, http://www.dailyherald.com

 MY EPILEPSY DIARY IN AUSTRALIA


People with epilepsy in Australia can now use a new online epilepsy diary to help them manage their condition. My Epilepsy Diary enables them to track their seizures, their medicines, and their overall well-being on their computer or smartphone. The digital tool will also allow people to grant their health care providers access to their recorded information, significantly improving patient/care giver communications and enhancing patient compliance and treatment.

My Epilepsy Diary, which has already been used successfully by more than 15,000 people in the United States to better manage their epilepsy, is sponsored in Australia by Epilepsy Action Australia , the largest provider of specialist epilepsy services in the Australian community It was originally developed by Irody with guidance by the Epilepsy Therapy Project who operates epilepsy.com in the USA. The product is also in use for post-marketing clinical studies.

“As an unaffiliated non-profit organization, Epilepsy Action is delighted to be able to make My Epilepsy Diary available to people with epilepsy in Australia, so they can record their daily experiences of epilepsy easily and accurately. If they wish, they can share their information with their family, healthcare professionals and caregivers, so they can help them achieve best possible control of their epilepsy and optimize their treatment,” said Carol Ireland, CEO of Epilepsy Action Australia.

My Epilepsy Diary is uniquely designed to capture comprehensive patient information and to assist patients with their daily routine. In addition to recording seizures, side effects or progress, users can document their medical history, create reports, response plans, and view data in narrative or graphical form. Patients can also track and manage their therapies with reminders to be sent by email or local smart phone notification to enhance medication compliance. A Personal History module allows them to build much more detailed profiles that include non-epilepsy-specific details of the patient’s life and health, including familial patterns, which may impact treatment options and effectiveness.

“Because the product is available on all popular models of smartphones and data is stored securely online, patients know their records will be kept even if they switch phones or replace a lost phone, while their authorized treating doctors can access patient-reported outcomes immediately” said Dr. Eyal Bartfeld, President and CEO of Irody.

‘My Epilepsy Diary’ has been adapted for people living with epilepsy in Australia by Epilepsy Action Australia.  Patients can register for My Epilepsy Diary Australia at https://epilepsy.org.au/diary and make entries online, or by downloading a My Epilepsy Diary app to their iPhone, iPad, iPod Touch or Android family of phones, tablets and book readers.


For further information
Jodie Trowell 02 9856 7093
jtrowell(at)epilepsy(dot)org(dot)au
About the Epilepsy Action Australia
Epilepsy Action Australia (http://www.epilepsy.org.au) is a company limited by guarantee which provides professional service delivery Australia wide. It is the largest provider of specialist epilepsy services in the community for people with epilepsy and other seizure disorders, their carers, families and the broader community.


About Irody
Irody (http://www.irody.com) is a privately-held technology company devoted to helping patients with chronic conditions leverage mobile technology to better manage their health.




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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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