Epilepsy is a neurological condition that affects approximately 600,000 people in the UK. Many of us associate it with what we’ve seen in films and TV dramas – someone having a ‘fit’, shaking uncontrollably and foaming at the mouth. But although some epileptics do indeed suffer such severe symptoms, the condition is much more complex and varied than this.
According to experts at the charity Epilepsy Action, there are more than sixty types of seizure, all of which are caused by a sudden burst of electrical activity in someone’s brain. Symptoms will vary depending on which areas of the brain are affected and can cause, for example:
- Twitching or jerking
- Muscle stiffness or;
- Strange sensations in the patient’s body
On the other hand, some people show no outward signs at all and simply ‘zone out’. Sufferers may lose consciousness while this is happening while others remain fully awake. It’s also possible to experience more than one type of seizure.
Seizures can also be ‘triggered’ in some people:
- Flashing lights
- Hormonal changes
- Stress or;
These are all common causes – but again, this depends on the individual.
Epilepsy Can Disrupt Learning
Not surprisingly, epilepsy can have a serious impact on a young person’s education. Daisy, aged seven, lives in Birmingham and started having seizures while she was still a toddler. At first, doctors put these down to having a fever but as she grew older, they happened more frequently and became a mixture of:
- ‘tonic-clonic’ episodes (convulsions and loss of consciousness) and;
- ‘focal’ seizures, where she appeared to be just daydreaming
Daisy’s epilepsy is now mostly well-controlled with medication, says mum Rebecca, though there have been times when the seizures have returned. “The problem is that medication is weight-based so as she grows, the dose has to increase,” she explains.
“There was a time at the end of 2020, when she hardly did a full day at school because of constant seizures. After she’s had one, she usually needs to sleep for a couple of hours. She also has to take time off for hospital appointments. Thankfully, she’s been seizure-free for the past year and she’s meeting her targets.
“It’s been a massive learning curve and I’m hypervigilant about things that might affect Daisy,” Rebecca continues. “For her, illness and having a temperature increase the risk of a seizure. We also try to get her to bed at the same time and make sure that she doesn’t watch TV in the dark (the contrast and flashing lights are also risks).”
School Support Can Make All the Difference
Daisy’s friends and family all know about her condition and she, too, was told about it as soon as she received the diagnosis. Staff at her school, in particular, have been extremely supportive – so much so that Rebecca nominated them for an Epilepsy Action award.
“They’ve been amazing! I can’t fault them,” she comments. “They’ve taken the trouble to learn about the condition and they’re always in touch – they let me know if Daisy’s shown any signs of being stressed or tired. They also held a session where they explained epilepsy to the other children. It’s been really helpful because there has been no negativity or teasing from anyone.”
Epilepsy Action’s website offers advice on how parents can get the best support for their child in school. They recommend giving the school a detailed description of your child’s symptoms and triggers and how they should deal with a seizure, even if you are still waiting for a formal diagnosis. The charity also offers training courses for school staff on how to support a young person with epilepsy.
Epilepsy and Complex Needs
For some people, however, epilepsy is part of a profile of complex needs. SEN tutor Dora has worked with young people with severe disabilities and recalls one student who had learning difficulties, ADHD and autism as well as epilepsy. “He was ultra-sensitive to bright light and sudden noises, such as a slamming door, could also trigger a seizure,” she says. “The only way we could tell he was having one was through his eye movements.
“I was one of a team of people supporting him,” Dora continues. “We all had to make sure we were very peaceful and calm before we worked with him. He was so sensitive that he would pick up on any emotional changes in his carers and this could make him stressed and also trigger a seizure.”