Epilepsy

Epilepsy and your child

Epilepsy is a condition that affects approximately 1 in 200 children. It is a complex condition and can present in many ways. Diagnosis is not straight forward and may take months and possibly years as other conditions may need to be ruled out. Epilepsy is not just a medical condition. There are many emotional issues that may arise for the child and the whole family.

The child’s school will need to be informed, and everyone around the child will need to know about first aid for seizures and what to do if a seizure lasts longer than expected. Schools will need to consider safety precautions to let the child take part in all activities. It is important that family life continues as normally as possible. Parents will have to balance their desire to protect their child with the need to give them enough freedom to develop their self esteem. The needs of siblings are also important.

Living with epilepsy

If you or your child have been recently diagnosed, it’s important to know that most people cope very well after the initial period of adjustment. However others may need a little more guidance and support.

You may have felt a range of emotions since the diagnosis, including depression, anger or frustration, as well as feeling worried about the future. If you feel you are struggling with it, discuss how you feel with your doctor.

Living with epilepsy does not mean you or your child cannot live a rewarding and full life.

Learning about epilepsy and sharing that information with others, finding the right medication, developing a support network and enabling your child to continue to live their life as normally as they can, is vitally important.

It is important that you find out as much as you can about your child’s condition, so you will be able to answer any questions they may have. The whole situation can be confusing and worrying, as they now have to take medicine every day and may see their parents upset or worried, which in turn can make them anxious.

Giving them the details

It is important to explain to them as much as possible about their epilepsy. A full and factual explanation will hopefully help to ease their worries and fears.

Older children will need to know exactly what is happening and why, and should be given the chance to ask plenty of questions, particularly regarding tests and medication.

Remember to explain what is happening and why, and encourage them to ask questions. Reassure them there’s nothing for them to be frightened about and give the child time to take in all the information.

Below are some of the common questions your child may ask about their epilepsy:

What caused the epilepsy?
Did I do something wrong?
Why does it happen?
Will it go away?
How long will I have to take the medicine?
Can I still do things that my friends do?

When assessing the risks and benefits of a child’s daily activities, you will need to decide what the child may and may not do. Whenever possible, the child should be involved in these decisions. Every situation is different and when assessing the risks you should consider the answer to the following questions.

How old is the child?
How capable is the child?
How often does the child have seizures?
Do they get a reliable warning prior to seizures occurring?
What kind of seizures do they have?
If they had a seizure during the activity, what consequences would there be?

However, the most important thing to remember is that children should be encouraged to live life as other children of their age and ability.

Bathing

Children should be supervised in the bath at all times to reduce the risk of drowning. Older children should be encouraged to use a shower, preferably one that has a seat. If a shower is not possible, and an older child refuses to have an adult in the bathroom with them, the bath water should be shallow and someone be outside the bathroom with the door unlocked. Shower screens should be made of plastic or a shower curtain used. A water temperature regulator is recommended and the temperature should be lowered to around 37- 40ºC to avoid scalding. When the bathroom, toilet or shower room is small, the doors should be rehung so they open outwards. This way the child will not be trapped behind the door if they have a seizure.

Safety in the home

Furniture or fittings that have sharp edges to them should be moved or fit corner edge guards. Radiator and fire guards should preferably have round edges to them and should be secured in place. If possible, a cooker guard should be fitted and when cooking, the back hobs should be used as much as possible, with the handles of the pots turned inwards and away from the front of the cooker. All doors, low windows, glass-topped tables and glass-fronted cabinets should preferably be made with safety glass. Alternatively a protective film is available to cover the surfaces and reduce risk of injury. If a child has seizures at bedtime, bed guards may be useful. The best ones are made of a solid design, rather than the type that allow limbs to become trapped within the slats. Lowering a child’s bed will lessen injuries in case they fall out of bed. Putting a mattress on the floor beside the bed will cushion the child’s fall. If the child makes a noise when having seizures, a baby listening device can be used to alert you. Likewise there are also bed alarms that pick up movement and may be suitable for alerting you to certain types of seizures.

Safety and leisure

A competent swimmer should always swim with the child. If possible try to ensure they swim during the least crowded sessions and that the lifeguard is informed of their epilepsy. Somebody should be keeping an eye on the child at all times. If the child has seizures without warning, make sure they are escorted when climbing stairs and on escalators or, if available, use a lift. The child should wear a helmet when riding a bike, and avoid riding on busy roads. If they carry a mobile phone, key in your details and contact numbers under In Case of Emergency.

Specialist equipment suppliers

Many children need special equipment to help with daily living tasks, or to maximise their independence. If you are planning on purchasing some specialist equipment, be sure to get advice on what you need before you buy, your child’s health team should be able to help you. A paediatric occupational therapist should assess the child and advise about specific equipment that the child needs. Some of this equipment is available by contacting the child’s GP, or their local social services. You may be eligible for benefits or a grant to pay for equipment. Some can be obtained on a ‘sale or return’ basis, or a short or long term loan may be available for the National Health Service.

Living made easy for children is a service offered by the Disabled Living Foundation.

Inclusive Technology (opens link in new window) provides a wide range of special educational software and products, including special toys, communication aids, input switches, learning resources and equipment, speech and hearing amplifiers, music devices and more.

It is important for your child that you work in partnership with the school.

Make an appointment with your child’s teacher to discuss the various issues that may arise, and encourage your child to go along to the meeting if they want.

If your child is at secondary school, ask their tutor to share the information with the other staff who care for your child.

The school should be given as much information as possible about your child’s seizures and how to deal with them. The kind of information they will need is:

The medical diagnosis and frequency of seizures.
A description of a typical type of seizure.
Any triggers for the seizures.
How to deal with the seizure and a note of the follow up care your child needs.
A description of what constitutes an emergency for the child and the action to take if this occurs.
Family contact numbers.
Clinic/hospital/GP contact numbers.

Providing information about epilepsy to other children in the class will help raise awareness of the condition, reduce fears and encourage understanding of how they can help if someone has a seizure. This can be done either informally with stories that explain about epilepsy or in a more formal way from a specialist epilepsy service.

The transition from child to adult health care services usually occurs when they reach between 16 and 18 years old, although planning should begin a lot earlier, at around the age of 13.

The more planning that takes place, the more successful the transition will be. Adolescent clinics allow the transition to be a more gradual and less frightening, process.

When changing from child to adult services the young person will be expected to become more involved in decision making on the medical issues affecting them. The more knowledge that they have on all aspects of epilepsy, the less daunted they will feel.

In the run up to their transition, help your child prepare for the change to adult services by:

Leaving them on their own for part of clinic appointments.
Encouraging them to make appointments for themselves.
Checking that they know when, and how, to seek advice and urgent medical treatment should they need it.
Encouraging them to keep an up to date seizure diary.
Suggesting they write down any questions that occur to them between clinic visits.
Instilling the importance of taking medication. They should know the side effects of the medication they are taking, and what could happen should they stop taking it suddenly and without medical advice.
Showing them how to follow treatment plans and how to obtain repeat prescriptions.
Discussing with them of the effects of alcohol, illegal drugs, contraception, tiredness and other issues that may well crop up with young people of this age.

Epilepsy Treatment

There are a number of different treatments for epilepsy, however the most common is medication.

The main aim of treating epilepsy is to improve the person's quality of life by preventing seizures but also causing minimum side effects.

Below you can find more information on treatment, including antiepileptic medication, epilepsy surgery, cannabidiol, emergency epilepsy medication and dietary treatments.

A further overview of information on epilepsy treatment can be found below.

Although antiepileptic medication will not cure epilepsy, it is designed to prevent seizures from happening. For about 70% of those with epilepsy, good seizure control can be achieved through taking medication.

Treating a patient with antiepileptic medication should be decided by both the patient (plus parent/guardian if the patient is unable to give consent) and the doctor. However this decision may be affected by:

The type of seizure that the patient has experienced
How often seizures occur
The epilepsy syndrome (if it has been established)
Results or findings from the EEG or MRI

Some medications work better for certain types of seizures than for others. Finding the right medication can be lengthy and frustrating because the first drug may not be the best option. There is no test to identify which drug will be best.

The effects of cannabis on epilepsy have been under discussion for a number of years and the current interest in the case of Billy Caldwell has highlighted this even further.

Cannabis has long been thought to have therapeutic properties. Cannabis products contain a substance called THC; the component that causes a medical high. In the UK there are laws regarding the amount of THC in cannabis products which are only legal if they contain less than 0.3% THC.

Containing less than 0.1% THC, pure cannabidiol (CBD), has been prescribed in certain circumstances, and through clinical trials has been shown to be effective in complex epilepsies, more specifically Dravet syndrome and Lennox Gastaut syndrome. These findings have been submitted with a view to gaining a licence. There is no evidence about the efficacy or safety of higher amounts of THC.

Cannabis oils available in the UK and on the internet are not regulated medicines so their contents and dosage will not be consistent. People must always speak with their specialist epilepsy consultant if they are considering any alternative treatment including cannabis oil.

Deep Brain Stimulation (DBS) is a treatment where electrical stimulation is given to specific areas in the brain.

An initial surgical procedure to implant leads to specifically targeted areas of the brain is needed. These leads are then used to deliver controlled electrical stimulation via a pulse generator which is programmed specifically for the person.

This treatment may be considered for those who have focal onset seizures and have not gained seizure control with medication.

Whilst this procedure will not cure epilepsy, it is hoped that settings can be adjusted to maximise the reduction of seizures and minimise any side effects.

A seizure is not normally a medical emergency and the vast majority of seizures stop by themselves without the need for any treatment. However sometimes a medical emergency known as status epilepticus can occur.

Status epilepticus

This is defined as any seizure involving unconsciousness lasting for 30 minutes or longer; or repeated seizures lasting for 30 minutes in total from which the person does not regain consciousness between each seizure.

Although any type of seizure may develop into status epilepticus, generalised tonic clonic seizures progressing into status epilepticus are the most serious.

The longer a seizure continues, the harder it is to stop. So best practice is to treat a generalised tonic clonic seizure with emergency medication after five minutes. This is also known as rescue medication.

Epilepsy emergency medication may be prescribed if a child has previously experienced a seizure that has lasted for five minutes or more. An action plan should be agreed with the doctor so that you know what to do in an emergency situation. This should be shared with the child’s school and staff who will administer the medication need to be trained to do so.

Emergency drugs have an anticonvulsant effect and can stop seizures. Midazolam and Diazepam are the two most commonly used.

Vagus Nerve Stimulation (VNS) is a small device, similar to a cardiac pacemaker that is implanted under the skin near the left collar bone.

It is connected via a lead to the vagus nerve in the neck. By stimulating the nerve at regular intervals, it can reduce the frequency and intensity of seizures.

The device may also be activated by the patient or carer placing the special VNS therapy magnet over the device for about a second - if applied at the onset of a seizure; this may interrupt a seizure or reduce its severity.

It can be used alongside other treatments for epilepsy, such as medication and dietary treatments and it is often used for frequent, reoccurring seizures.

Side-effects are usually mild and can almost always be reduced with an adjustment of the settings. Hoarseness, throat discomfort, coughing and swallowing difficulties can be side-effects but these may be intermittent and often settle over time.

Any improvement in seizure control may not be seen until 6 to 12 months after the device has been fitted, with the full effect taking up to 18 months.

Up to a quarter to a third of children with epilepsy do not respond to antiepileptic drugs. Epilepsy surgery should be considered early in these children.

Epilepsy surgery (neurosurgery) may be considered if antiepileptic drug treatment has been shown to be ineffective and if, after a number of detailed tests, the results of these investigations show that:

The seizures arise from a specific part of the brain that can be clearly defined and removal of this area will not cause any further problems.
There is evidence of medical, social and/or educational disability due to the child’s seizures.
The child’s quality of life is likely to improve after surgery.
There is an acceptable risk-benefit ratio for the child undergoing surgery

There are a number of different surgical procedures that can be carried out. The success rate of neurosurgery varies depending on the type of surgery, but it is now recognised that in many cases the earlier the surgery is carried out, the better the result.

Dietary treatments for epilepsy have been around for over a hundred years.

There are a number of similar ketogenic diets that are used, but all are based on the same principle of using a controlled diet to enable the body to produce ketones – a chemical that reduces seizures.

The principles of the ketogenic diet are:

High fat
Low carbohydrate
Controlled protein

This diet is not effective for everyone, but for some it may result in an improvement in seizures, with fewer side effects than other treatments.

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Last updated: 25/11/2021