March 26th is Purple Day - The international day for epilepsy awareness
Dr Deirdre Peake - Consultant Paediatric Neurologist at Kingsbridge Private Hospital talks to us about epilepsy in children
Listen to the Kids with Epilepsy on Purple day!
March 26th is “Purple Day”. It is a world day for epilepsy awareness. It was founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada. It was Cassidy’s goal for people with epilepsy everywhere to know they are not alone. She chose the colour purple because in some cultures the lavender flower is often associated with solitude, which is representative of the feelings of isolation many people affected by epilepsy and seizure disorders often feel.
Epilepsy affects over 65 million people worldwide (more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's combined). Despite this, it is a widely misunderstood condition and when it affects children it may have a profound impact on their lives. We don’t have accurate figures on the number of children who have epilepsy in Northern Ireland, but the incidence is estimated as being between 0.5 and 1% of the population.
What is an Epileptic Seizure?
An epileptic seizure results from a sudden electrical discharge in the brain that results in an alteration in sensation, behaviour or consciousness. Seizures can take many forms because the brain is responsible for such a wide range of functions. There are many (over 40) different types of seizures. They can last from a few seconds to a few minutes and stop without any treatment. Epilepsy is the recurrence of these seizures
What causes Epilepsy in Children?
The majority of epilepsies (around 60%) have no known cause. Those epilepsies with a known cause are usually caused by brain injury or disease and those that have a hereditary factor.
How is Epilepsy Diagnosed?
Epilepsy is suspected if your child has more than one unprovoked seizure. It is a clinical diagnosis (i.e. based on the story/ history that your child has had a repetitive event that fits in with the types of seizures we recognise. An Electroencephalogram( EEG) and brain scan be helpful in confirming the clinical diagnosis but are these are often normal.
An Electroencephalogram( EEG) is a test that records the brain activity by picking up electrical signals given off by the communicating nerve cells. A can be helpful many children with epilepsy will have a normal trace.
Not all children need to have a brain scan but in some they can be helpful in identifying a structural cause
The Good news
The majority of children who have epilepsy are fully controlled on one anticonvulsant drug (70%). If your child remains seizure free for two years then the majority of children are successfully weaned of all drugs! If the first drug does not work there are numerous other drugs that be tried. If medication is not working there are other options available such as the ketogenic Diet, Epilepsy Surgery and Vagus Nerve Stimulation (VNS)
Hear from some of our children who have been successfully treated with these treatment options:
Catherine is now 16 years of age. She had her first seizure when she was just two and a half. These mainly occurred at night time and she had these every night, often up to 15 times per night Medication worked for short periods at a time only. In 2013 Catherine had epilepsy surgery performed in 2013 and she has been completely seizure free since. The life changing effect of this cannot be underestimated.
"Hi my name is Catherine Monaghan, I have had epilepsy since I was two and a half years old. Apart from the seizures, I suffered daily with constant headaches, poor concentration and tiredness. As I reached teenage years my symptoms worsened, my school attendance and performance suffered greatly, daily life became a chore. Thanks to a life changing operation (epilepsy surgery) in GOSH in 2013 I feel as though my life has just started, happiness feels so good, my life has changed dramatically, I recently passed my first GCSE, I no longer have headaches or any other symptoms. Thank you to Dr D Peake, Dr N Corrigan and GOSH for changing my life” Catherine.
"The change in Catherine since her operation is amazing. Before her operation Catherine was very unwell which had a very negative impact on our family life. Since the operation, Catherine is sleeping throughout the night and has been seizure free with no symptoms whatsoever. Thank you so much to all involved with Catherine's care since she was a wee girl we will be forever grateful “ Brian & Bernie Monaghan
Only 4-5 % of children with epilepsy are considered as suitable candidates for surgery but it certainly is desirable that children who are not responding to drugs should be referred to a paediatric to be investigated to see if this is an option.
Archie developed Epilepsy at two weeks of age when he developed a bleed on the brain. Over the first year of life different medications were tried with intermittent success. He was worked up for epilepsy surgery and at one and half years he was started on the ketogenic dirt. He has not looked back since.
"The first year of Archie's life was incredibly difficult. None of the anti-convulsant drugs had any great effect in controlling Archie's epilepsy. He was having up to 8 seizures a day and spent a substantial part of that year in Paul Ward RVHC. He was a very unwell wee boy. At nine months Dr Peake recommended Archie for the ketogenic diet and almost immediately we noticed a change. His seizures reduced and after three months stopped completely. Archie has now been fully weaned off the ketogenic diet, is enjoying normal spoon feeds and hasn't had a seizure in over two years. He is learning to walk, and loves school and playing with his sisters. We had never heard of the ketogenic diet before and are so thankful to Dr Peake and the dietetics department at RVHC for recommending Archie for this treatment and for all their help and support." Gareth and Lara MacLean
The ketogenic diet is a high-fat, low-carbohydrate and controlled-protein diet which is used in the management of epilepsy in children. This diet is not effective for everyone, but for some it may result in an improvement is seizures control, with fewer side effects than other treatments.
What’s happening in Northern Ireland for Purple day?
Epilepsy Action NI is part of the national organisation ‘Epilepsy Action’ which exists to improve the lives of everyone affected by epilepsy. Epilepsy Action NI is dedicated to lobbying for better health services for the 20,000 people with epilepsy in Northern Ireland through the Epilepsy All Party Group, which was established at the Northern Ireland Assembly in 2012. They raise awareness of the condition and work to support people with epilepsy in education and employment. Support is also provided through the local service network of coffee and chat groups, branches and volunteers.
They can be disadvantaged in school, leading to underachievement, impaired social development and future career opportunities.
In support of Purple Day (World Epilepsy Day) we will be organising an epilepsy awareness morning at the Children’s Hospital in Belfast, where play therapists will be arranging purple activities for children. Individual coffee mornings are taking place and we have one local branch who will be ‘going purple’ for their monthly meeting. People can also go online to support Purple Day at www.epilepsy.org.uk and on Twitter @epilepsyaction and by using the hashtag #purpleday.
If your child suffers from Epilepsy and you would like to book a consultation with Dr Deirdre Peake, call the 3fivetwo Group today on 0845 60 06 352