What is epilepsy and what happens if my child has epilepsy?

Epilepsy is a condition that affects the brain and can cause seizures. Diagnosis in childhood is common, although epilepsy can occur at any age. It’s not a curable condition but with the right knowledge and support, your child’s epilepsy can be well managed.

To find out what epilepsy is and how you can support your child if they have it, we spoke to GP Dr Punam Krishan, and charity Epilepsy Action.

What is epilepsy?

Epilepsy is a brain condition that affects around one in 100 people. According to charity Epilepsy Action, epilepsy in children is often noticed when a child has one or more seizures.

These can look like:

• Unusual movement (like jerking, staring or falling).
• Staring spells where the child seems ‘absent or unaware’.
• Sudden stiffness or limpness.
• Unusual sensations or behaviours (like sudden fear, confusion or odd movements).

As a parent or carer, you may be the first to notice these signs. If you think your child has epilepsy you should seek professional help from your GP.

What happens if my child has epilepsy?

Once you’ve visited your GP and they suspect a seizure, Epilepsy Action said that usually, a child is referred to a paediatrician (a children’s doctor) or a paediatric neurologist (a brain specialist for children). They'll take a detailed history and conduct a physical and neurological examination, including asking:

• What the child’s seizures looked like.
• How long they lasted.
• What happened before and after.
• Any family history of seizures or epilepsy.
• Checking your child’s general health.
• Looking for any signs affecting the brain and nervous system.

Tests that may be used include:

• EEG (electroencephalogram) – a painless test that records brain activity and looks for unusual electrical patterns linked to epilepsy.
• MRI or CT scan – to check for any changes or issues in the brain structure.
• Blood tests – sometimes done to rule out any other causes.

Can you treat epilepsy?

Medications can reduce or prevent epileptic seizures but they need careful management. Work with your doctor or healthcare provider to find the right treatment for your child. Identifying and avoiding your child’s specific triggers can also make a big difference.

Five tips for managing your child’s epilepsy

1. Keep a seizure diary and make a note of your child’s triggers so you can avoid them, and adjust care where needed. A trigger is something that makes a seizure more likely if your child has epilepsy. Common triggers include missed sleep, stress or even flashing lights.

2. Learn seizure first aid and teach it to family members and friends. Stay calm and remember not to restrain your child or put anything in their mouth. Keep your child safe from injury and time how long their seizure lasts.

3. Work closely with your child’s healthcare provider. Ensure your child attends all appointments and tests and takes any medication correctly. You can also develop an emergency plan with your healthcare provider, so you’re ready for any situation.

4. Talk to your child about their epilepsy and explain to them what’s going on, in a way that’s accessible for their age.

5. Speak with your child’s school – they may need an Individual Health Care Plan (IHP) if their condition is moderate to severe. This plan provides support for your child in school and helps their teachers and support staff recognise signs of a seizure, as well as being aware of the challenges they face. Some children with epilepsy can also experience differences with their learning.

What’s next?

“With the right care and understanding, your child can thrive.” - Dr Punam Krishan

Look after your own wellbeing as well as your child’s: talk to others about your concerns – don’t face this alone.

Charities such as Epilepsy Society, Young Epilepsy, The Brain Charity, The Daisy Garland, Epilepsy Action and SUDEP Action have online information and helplines so you can access support. Some charities also offer family support services and counselling.

More epilepsy charities can be found here at the BBC Action Line.

With the steps above you’re taking important strides to support your child’s health and wellbeing. Empower yourself, because as Dr Krishan says: “With the right care and understanding, your child can thrive.”

There are more explainers from Dr Punam Krishan here:

What is OCD and does my child have it?

What is dyslexia and is my child dyslexic?

The language and guidance given in this content was based on advice from the NHS (and a GP) so is informed by the medical model of disability. It is, however, important to learn about the difference between the medical model and the social model of disability to have a broader awareness of how society understands and responds to disability.

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