For over 10 years, on 26 of March we have marked Purple Day, the international epilepsy awareness day. This is always a powerful day, full of unity, inspiration and information. It allows people to show their support for everyone living with epilepsy, share their experiences of the condition and raise some money and awareness.
This year, Epilepsy Action has decided that the purple spotlight should shine on children with epilepsy. The organisation wants to help provide more children and their parents with the information and support they need to live better with epilepsy.
How much do you know about childhood epilepsy? We answer some questions you might have about epilepsy in children.
How many children are affected by epilepsy in the UK?
Epilepsy in childhood is not uncommon. This is a sombre thought, but it does mean families of children living with epilepsy are not alone. According to Epilepsy Action, 1 in every 220 children in the UK will have a diagnosis of epilepsy. That’s an average of 1 child with epilepsy in every primary school and 5 in every secondary school. The total number of under 18-year-olds with epilepsy in the UK is around 63,400, according to the Joint Epilepsy Council (JEC).
What causes seizures in children?
Like in adults, often seizures in childhood may start for no apparent reason. In other cases, there could be genetic causes, infections of the brain or head trauma that leads to seizures. Epilepsy could also be related to a different condition, such as tuberous sclerosis complex (TSC). This condition causes non-cancerous growths to develop in different organs of the body, such as the skin, kidneys, lungs or the brain.
Newborns and infants can also have seizures. These can be hard to notice as they may not be very obvious. Epilepsy Action has more information on what different types of seizures babies might have and what they may look like. There may be no cause for the seizures in around 2 in 10 babies. In 8 in 10, causes could be genetic, related to being born with some damage to the brain, or being born early. As strange as it may seem, it can often be helpful to film any suspected seizures to show to the doctor. It may help to speed up the diagnosis, as the doctor can see what is happening during a seizure.
Some children might have febrile seizures. These are seizures resulting from a high temperature, and most often happen when the child is 6 months to 3 years old. These seizures happen in around 5 in every 100 children, but they are not epilepsy. However, Epilepsy Action explains that children who have febrile seizures have a higher chance of developing epilepsy when they are older.
What kind of epilepsy can children have?
There are many different types of epilepsy that can start in childhood, which may or may not have an obvious cause.
A number of epilepsy syndromes have also been identified over the years. A syndrome is a group of symptoms which together point to a particular medical condition. In epilepsy, these may be things like age at which seizures begin, the type of seizures and the sex of the child, Epilepsy Action explains. Many of these syndromes begin and can be diagnosed in childhood, and may continue on into adulthood.
Epilepsies and epilepsy syndromes differ in the way they may affect the child. Some are less severe than others, and may be controlled with medicines, and some might be outgrown. Other syndromes are rarer and can be more severe, such as Dravet and Lennox-Gastaut syndromes. Children with some syndromes may also have learning difficulties.
The diagnosis of an epilepsy or epilepsy syndrome will be made by a child’s epilepsy specialist. It can be really difficult to hear a diagnosis like this, but identifying a specific syndrome can be helpful. It can offer an explanation for a child’s seizures and symptoms, and give doctors more information about the best course of treatment and support the child may need.
In the UK, there are also support groups for parents of children with some types of syndromes. You can find these on the Contact website.
Can epilepsy start in the teenage years?
One example is juvenile absence epilepsy (JAE), which usually starts between the ages of 9 and 12 years. This type of epilepsy typically involves absence seizures – where a child is unconscious for up to 20 seconds, but doesn’t fall to the ground. They may have longer absences and also some tonic-clonic seizures where the child drops to the floor and convulses. JAE tends to respond well to medicines.
Another example is juvenile myoclonic epilepsy (JME) which usually starts between 12 and 16 years. This type of epilepsy involves myoclonic seizures, which look like jerky movements. But there may also be tonic-clonic and absence seizures, and the person may also have photosensitive seizures (ones triggered by flashing or flickering light).
What treatments are available for children with epilepsy?
The most common ways to treat epilepsy is with medicines. These may be different depending on the age and sex of the child, the type or seizures or epilepsy they have and whether they have any other medical conditions.
If one epilepsy medicine doesn’t work, doctors may try a different one or a combination of a few. A child with more severe epilepsy, who may have seizures that last over 5 minutes, may also be given a rescue medicine. This is usually diazepam or midazolam and it would be given only in an emergency situation, not regularly like other epilepsy medicines.
If a child’s epilepsy is proving difficult to treat, there may be other options. For some children, epilepsy surgery can be considered. In children in whom surgery is considered an option, studies have shown that it could reduce or even stop seizures. Studies also suggest that having epilepsy surgery earlier rather than later can result in better outcomes.
The ketogenic diet is another treatment that doctors may suggest. This is a special medical diet which is high in fats and low in carbohydrates. Research has shown that this diet can benefit around half of children with treatment resistant epilepsies, and some could become seizure free.
A doctor may also suggest vagus nerve stimulation (VNS) therapy. This involves a pacemaker-like device being implanted under the skin in the chest. It can reduce the number of seizures a child has or make them less severe.
What is epilepsy care like in the UK for children and young people?
Recent reports have painted a bit of a stark picture of the epilepsy care for children in the UK. One of these was the Child health in 2030 in England: comparisons with other wealthy countries report published by the Royal College of Paediatrics and Child Health (RCPCH) in October 2018. According to this, death rates in 1-19-year-olds in England and Wales was higher than those in other western countries between 2001 and 2015. This was compared to overall substantial falls in death rates in England and Wales during that period.
Another report came from the Epilepsy12 National Audit from the RCPCH. This found that almost 9 in 10 Health Boards and Trusts in England and Wales do not enable mental health provision within epilepsy clinics. This is despite research showing that children with epilepsy are four times more likely to have a mental health condition than their peers.
Despite this bleak picture, the Epilepsy12 audit also found a number of improvements. For example, more than 9 in 10 Health Boards and Trusts had a consultant paediatrician with expertise in epilepsy. This is an increase from the last two audits carried out in 2012 and 2014. The number of epilepsy specialist nurses (ESNs) had also increased since 2014, with more than 3 in 4 Health Boards and Trusts having an ESN.
What are transition services?
Transition services help young people move from paediatric to adult services. The importance of this is widely recognised, as it helps the young person feel confident and comfortable with their new care providers. In epilepsy, effective transition can result in young people being more engaged with managing their condition and taking their treatment as prescribed.
According to the latest Epilepsy12 report, around 3 in 4 Health Boards and Trusts have an agreed pathway for transitioning young adults from children’s to adult services.
Will epilepsy affect a child’s schooling and childhood?
The way epilepsy affects us is different for everyone. In many cases, children diagnosed with epilepsy can have their seizures controlled with medicine and go on to live a full life like their peers.
However, some epilepsies are more severe, and so may have a bigger effect on a child’s life. Some syndromes can mean that as well as seizures, children may also have a learning disability or a mental health condition. A child’s doctor will be able to advise about treatments and therapies to help manage the epilepsy and any accompanying conditions.
The way epilepsy could affect a child at school can vary. Seizures themselves may disrupt a child’s learning, medicine side-effects could have an impact or absences from school could play a part. Schools can provide additional support to help children with epilepsy take part in the same way as everyone else. Schools can also put together an individual healthcare plan (IHP) for children with health conditions. This details specific support that a child needs, when it should be provided and who is responsible for this.
Epilepsy may also impact the kinds of activities a child or young person might be able to do, particularly if their seizures are not well controlled. They might have to take care near water or at heights for example. Young people with photosensitive epilepsy who want to go on nights out may have to be careful about flashing lights. However, there are ways to manage risks and help children and young people take part in activities. These can include things like being accompanied by a responsible adult in or near water or riding a bike away from busy roads (and wearing a helmet!).
Epilepsy Action has tips on safety and managing risks in epilepsy, both at home and outside.
Purple Day 2019
Finding out you have epilepsy is scary at any age. For young children, it can be terrifying.
This Purple Day, you can help more children and families come to terms with that news. You can help them learn about epilepsy, let them know they’re not alone and give them the confidence to deal with their diagnosis.
Your support will help get specially-desined ‘Just for Kids’ packs to more nurses so they can explain epilepsy to children in a way they understand. You’ll be helping more children make sense of what’s happening to them and feel more involved in their own treatment.
By helping get more resources to teachers, you’ll be helping them understand what it means to have epilepsy. That means they can better support children with epilepsy to succeed at school.
The money we raise together on Purple Day will help to grow Epilepsy Action’s UK-wide network of local support groups. That means more parents and carers can find support locally and feel less alone as they try to help their children live better with epilepsy.
How your fundraising donations will make a difference:
£3 can print and send a ‘Just for Kids’ pack to an epilepsy specialist nurse
£30 will help more schools get the resources and training they need to support children with epilepsy
£300 will help set up a new group so more parents and carers can find support locally
You can get involved by going on the Epilepsy Action website.
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Almost 9 in 10 Health Boards and Trusts in England and Wales do not enable mental health provision within epilepsy clinics. This is despite research showing that children with epilepsy are four times more likely to experience a mental health problem than their peers.