A new children’s epilepsy specialist nurse (ESN) has been appointed by the NHS Dumfries and Galloway health board. For years’ this was reportedly the only mainland health board without a specialist paediatric ESN in Scotland.
Sarah Gemmel has taken the new role of epilepsy and complex needs lead at the health board. The charity Epilepsy Scotland and families of children with epilepsy have campaigned for this appointment.
Sarah Gemmel said I am excited to take on this new role that will provide the essential service for offering practical and emotional support to children and families in Dumfries and Galloway.
A wearable device has been developed that can predict a seizure an hour before onset with potentially 97% accuracy.
The device called Epiness has been developed by Israeli researchers at Ben-Gurion University of the Negev. The device uses machine learning algorithms and EEG based monitoring of the brain activity.
The product which is not available to buy yet is due to undergo clinical trials later this year.
In development and testing large EEG datasets were used, and the prediction performance reached 97% accuracy.
For people with epilepsy whose seizures are not controlled an effective prediction device could help reduce injuries and increase independence.
Source Epilepsy Action
A five year-old girl has been called a “hero” for getting help when her mum had a seizure.
Lisa Wainwright had a seizure out of the blue at her Derbyshire home when she was alone with her daughters Esme, five and Amelia, two.
When the seizure started Esme handed her mum the phone who then typed a message to her husband Ash, When Ash rang back Esme picked up the phone and told him what had happened. She unlocked the door when he came home.
He saw that she had covered her mum over with a blanket and had stopped her little sister from crying by setting up her tablet for entertainment.
The 34 year old mum of two called Esme a “hero” and a “superstar” and said she’s really proud of Esme.
A new study from the journal Epilepsy & Behaviour suggests that vagul nerve stimulation ( VNS) is effective and safe for children in the long term.
Study authors Dilek Yalnizoglu and colleagues investigated 58 children in Turkey with hard to treat epilepsy who had VNS put in between 1997 and 2018. The average follow up was around six years, although it ranged from three months to 20 years.
The researchers found that just under half of the children had their seizures reduced by at least half, with three children becoming seizure free. The effectiveness of the VNS wasn’t affected by the cause of the epilepsy, how long they had had epilepsy or what age they had the VNS put in. However, it worked better in the children who had focal seizures. more than half of the children also had a better quality of life.
The most common side-effects were voice change and a pins and needles sensation.
For some of us, epilepsy can be an isolating condition which can make us feel lonely and misunderstood. But there are actually many people in the UK and around the world with the condition. One of Epilepsy Action’s roles is bringing people together to share their knowledge and experiences and talk to other going through similar situations.
We know that many of you take comfort from meeting others affected by epilepsy through our branches and coffee and chat groups. As we aren’t currently able to offer that support, our virtual groups are a great way of connecting with others.
You can find more information on all our support services at epilepsy.org.uk/virtualgroups you can also get more details by calling us on 01132108800.
Source Epilepsy Action