Epilepsy

A look at some of the key issues for children and young people who develop epilepsy following a brain injury.

What is epilepsy and why can it occur following brain injury?

There are many causes of epilepsy. One cause can be following a brain injury. A brain injury can result in scarring and lead to epilepsy.  

These scars may make the signals that move around the brain work differently than before. When this happens, there are bursts of uncontrollable activity that cause seizures1.

Some people may have seizures in the first few days after a brain injury but these often stop. Epilepsy is defined as a tendency to have seizures2 so it may only be diagnosed if your child continues to have seizures. And a person can also start having seizures months or even years after the injury3.

The chance of a child developing epilepsy following a brain injury varies depending on the type of injury; from about 2% following mild brain injury to 7% following severe brain injury4.

Brain tumours can also cause seizures. This is because the tumour presses on the brain around it and can cause damage. Sometimes the seizures can stop when the tumour is removed with surgery5

Types of seizures

Seizures can be classified into two main categories: focal seizures where just one area of the brain is affected by unusual electrical activity and generalised seizures where both halves of the brain is affected6.

During a focal seizure the child may remain alert or may not be aware of what is going on. What happens during a focal seizure depends on what area of the brain is affected. For example, if the abnormal activity occurs in the child’s temporal lobe which is involved in emotions and memories the child may feel intense feelings or déjà vu7.

Her mild seizures see her zoning out a little. She will stare into space and isn’t very responsive to her surroundings." Sotanis, Rhea's Mum

Other things that can happen during a focal seizure are:

  • muscle weakness
  • complex and repetitive movements, for example, undressing
  • sight related changes, for example, flashes of light
  • tingling down one side of the body
  • arms and legs feeling bigger or smaller than they really are

Sometimes this abnormal activity may start in one area of the brain and spread to the whole brain. This initial seizure activity is sometimes called an ‘aura’ and may warn the child that they are going to have a generalised seizure8, 9.

Generalised seizures involve epileptic activity in both halves of the brain and because of this usually the child will lose consciousness10. Here we cover the main types of generalised seizures:

Tonic-clonic seizures: this seizure happens in two phases, during the first ‘tonic’ phase the child loses consciousness, their body goes stiff and if they are standing they will fall to the ground. Due to the muscles contracting around their lungs they may cry out and may go blue around their mouth and finger nails (called cyanosis). During the second ‘clonic’ phase the child will jerk as their muscles contract and relax. The child may lose control of their bladder and/or bowels and may bite their tongue.

Absence seizures: the child will lose consciousness and appear to stare into space; they can be very brief and often difficult to spot.

Myoclonic seizures: these cause a child’s body to jerk. Sometimes it can be their whole body but often it is just one or both arms.

Tonic seizures: all the child’s muscles stiffen. These seizures often happen during sleep.

Atonic seizures: these are very brief but cause the child to lose all tone in their muscles and if they are standing drop to the floor11.

Triggers for seizures

Some things can make seizures more likely for some people. These are known as triggers. Some common triggers are12:

  • stress
  • not enough sleep
  • not taking anti-epileptic medication
  • missing meals
  • flashing lights (but this only affects 3% of people with epilepsy 13)
  • loud noises
     

First aid for seizures

Below is a clip explaining what to do if someone has a tonic-clonic seizure, created by Epilepsy Action.

First aid for tonic-clonic seizures 14:

  • Stay calm and give lots of reassurance
  • Check for danger – move anything away from the child that could harm them
  • Cushion their head with a pillow or jumper
  • When the seizure stops role the child into the recovery position
  • Note the time the seizure starts and stops
  • Never put anything in the child’s mouth

You only need to call an ambulance if:

  • It is the child’s first seizure
  • The seizure lasts for more than 5 minutes
  • The person doesn’t fully regain consciousness or has a series of seizures without fully regaining consciousness between

Diagnosing epilepsy

There is no specific test for epilepsy, so diagnosis is usually made on medical history and eyewitness accounts. 

It is important to keep a detailed seizure diary and where possible, video a child’s seizures to take with you to the doctor’s appointment. You should record what they were doing before the seizure, when the seizure occurred, how long it lasted, a clear description of what happened during the seizure and how they recovered after15

There are some tests which can help diagnose epilepsy and help give a clearer picture of what is causing it, such as:

Blood tests: These rule out other causes.

EEGs (electroencephalogram): Sensors are attached to the scalp to pick up the brains electrical signal, these are then recorded and a doctor will look to see if there is any unusual activity16.  These tests can also be carried out during sleep or while moving around. Read more about these tests at Epilepsy Action website here.

MRI: This is a scan which looks at the structure of the brain. The doctor will look for any abnormalities that could be causing seizures. This could be scarring caused by a brain injury.

If Rhea-Olivia’s seizures continue, she could indeed be diagnosed (with epilepsy) but with correct medication we can control and monitor it." Sotanis, Rhea's Mum

Treating epilepsy

Epilepsy is usually treated with medication called anti-epileptic medication. Doctors will aim for the lowest dose of one drug to control the child’s seizures. This is called monotherapy. Sometimes if seizures cannot be controlled with one type of medication they may combine medications. This is called polytherapy17.

Drugs can cause unwanted side effects. This is why doctors try to find the lowest possible dose which controls the seizures. The most common side effects of anti-epileptic drugs are dizziness, drowsiness, poor concentration, fatigue, headache and upset stomach18.

If medication doesn’t work there are other treatments which can be tried17

These include:

  • Surgery – find out more from Epilepsy Action here
  • Ketogenic diet – find out more from the Matthew's Friends website here 
  • Vagal nerve stimulator – find out more from Epilepsy Action here

Safety at home

It is important to balance encouraging your child’s independence with keeping them safe as this helps build their self-confidence. Here are a few ways to reduce the chance of injury if they have a seizure in the home:19

  • Take showers instead of baths.
  • Use low beds and place the bed against a wall.
  • Anti-suffocation pillows can reduce the risk of suffocation if the person has seizures at night.
  • Avoid open fires.
  • Place a rug at the bottom of the stairs to provide cushioning in the event of falling.
  • If the young person is preparing food, use the microwave where possible and when cooking on the hob make sure pan handles are turned away.
  • Don’t iron or use hair straighteners when alone in the house.

Sport and leisure

A child with epilepsy can take part in almost all activities; it just may take a little more thought to keep them safe. 

Depending on how frequent a child’s seizures are, these are some precautions that can be taken:19 

  • If your child goes swimming always inform the lifeguard and make sure your child is closely supervised by an adult.
  • When cycling make sure your child wears a helmet and avoids cycling on busy roads.
  • Protective headgear should be worn when playing contact sports such as rugby or hockey.

If you are unsure about if an activity or sport is safe for your child talk to your doctor or epilepsy nurse. 

School and college with epilepsy

Many children with epilepsy go to mainstream schools20

But epilepsy can impact on a child’s ability to learn, this can be due to21:

  • Missing school due to seizures.
  • Tiredness due to the seizures or anti-epileptic medication.
  • Side-effects from epilepsy medicines e.g. hyperactivity, irritability, sleepiness, mood changes, aggression and confusion, problems concentrating.
  • Subtle seizures going unnoticed during the school day.

Seizures and epilepsy medications can also change a child’s behaviour which may impact on their ability to learn at school or college.

If you feel your child’s epilepsy is impacting on their learning you should discuss this with their teacher or the Special Educational Needs Coordinator (SENCO) to come up with strategies to help them as well as talking to the doctor or nurse involved in their epilepsy treatment.

Bullying can be an issue for children with epilepsy. We have more information on how to cope with bullying here

Hear young people’s experiences of different aspects of epilepsy

Youth Health Talk website's short video below shows young people talking about their own experiences of epilepsy.

When I found out I had epilepsy I thought I was the only kid with the condition" Cassidy Megan

Visit the epilepsy section of Youth Health Talk to listen to young people talking about all aspects of living with epilepsy in a series of video clips. 

More information on epilepsy

Epilepsy Action has created two new website areas for children and young people, with useful facts and tips on living with epilepsy here

Visit the Young Epilepsy website.  

You can also talk to other families affected by epilepsy on Facebook on the ESUK support group here.
 

References

  1. Powell, TJ (2004). Head Injury: a practical guide (revised edition). Milton Keynes: Speechmark, p67.
  2. Joint Epilepsy Council, (2011) Epilepsy prevalence, incidence and other statistics
  3. Daisley A, Tams R, Kischka U (2009) Head Injury: The Facts
  4. Dr Jakob Christensen, Marianne G Pedersen, Carsten B Pedersen, Per Sidenius, Jørn Olsen, Mogens Vestergaard, Long-term risk of epilepsy after traumatic brain injury in children and young adults: a population-based cohort study, The Lancet, Volume 373, Issue 9669, 28 March–3 April 2009, p1105–1110
  5. Altrup U, Elger CE, Reuber M (2005) Epilepsy Explained – A book for people who want to know more about epilepsy. Medicine Explained Publishing p127
  6. Altrup U, Elger CE, Reuber M (2005) Epilepsy Explained – A book for people who want to know more about epilepsy. Medicine Explained Publishing p20-21
  7. Dam M (1991) A Practical Approach to Epilepsy. Pergamon Press. Oxford. P45-52
  8. Altrup U, Elger CE, Reuber M (2005) Epilepsy Explained – A book for people who want to know more about epilepsy. Medicine Explained Publishing p24-25
  9. NCYPE A Parent’s Handbook – Complex Childhood Epilepsy p6-8
  10. Shorvon S (2005) The clinical forms and causes of epilepsy. Handbook of Epilepsy Treatment, 2nd edition. Oxford: Blackwell Publishing Ltd p7-11
  11. Altrup U, Elger CE, Reuber M (2005) Epilepsy Explained – A book for people who want to know more about epilepsy. Medicine Explained Publishing p22-42
  12. Balamurugan, E. et al., 2013. Perceived trigger factors of seizures in persons with epilepsy. Seizure, 22(9), pp.743–747
  13. Shorvon S (2005) The clinical forms and causes of epilepsy. In: Shorvon S, Handbook of Epilepsy Treatment, 2 nd edition. Oxford: Blackwell Publishing Ltd, p. 56
  14. What to do if someone has a seizure (fit) – NHS Choices available online at: http://www.nhs.uk/Livewell/Epilepsy/Pages/Ifyouseeaseizure.aspx
  15. Elliot-Wright S (2009) Coping with Epilepsy in Children and Young People. Sheldon Press p27-29
  16. EEG - How it is performed - NHS Choices. Available at: http://www.nhs.uk/Conditions/EEG/Pages/How-is-it-performed.aspx
  17. Epilepsies: Diagnosis and Management Available online here: https://www.nice.org.uk/guidance/cg137/ifp/chapter/Treatment-and-care#s…
  18. Elliot-Wright S (2009) Coping with Epilepsy in Children and Young People. Sheldon Press p42
  19. Elliot-Wright S (2009) Coping with Epilepsy in Children and Young People. Sheldon Press p91-100
  20. Swiderska N, (2011) The prevalence and management of epilepsy in secondary school pupils with and without special educational needs. [online] at http://www.ncbi.nlm.nih.gov/pubmed/20637024
  21. NCYPE A Parent’s Handbook – Complex Childhood Epilepsy p115e