Individual Healthcare Plans
Information about Individual Healthcare Plans for young people with epilepsy
Information about Individual Healthcare Plans for young people with epilepsy
Information for schools on communication and information sharing
Information for schools about seizure types and triggers, and planning for them
Information for schools about first aid for epilepsy seizures
Information for schools about keeping accurate seizure records, with visual aid
Young Epilepsy’s information for schools about status epilepticus and emergency medication, including training and storage
Information for schools about epilepsy anti-seizure medications and other epilepsy treatments.
Children and young people with epilepsy can be frightened, lonely and their condition is often misunderstood. You can help change that.
On Top Of Epilepsy mental health campaign for young people with epilepsy
Our health suite in Surrey offers diagnostic facilities for children with epilepsy and other neurological conditions.
This page gives an overview of the most common treatment for epilepsy – anti-seizure medications and their possible side effects. It also covers making adjustments in school to support a young person with epilepsy, and other treatments.
Anti-seizure medication (ASMs) are the most common treatment for epilepsy. They don’t cure epilepsy or treat the cause but about 70% of people with epilepsy can achieve good seizure control through the regular use of ASMs. Find out more about anti-seizure medications by clicking here.
ASMs can have side effects that can have an impact on a young person in the classroom. Side effects are most likely to occur when:
Not all young people experience side effects, but it’s important to be vigilant in case they do occur. Potential side effects may include:
If side effects do not resolve, the young person’s anti-seizure medication might need to be changed. The school must be kept informed of any changes in medication and/or side effects.
You may need to remind parents how important it is that they keep you up to date following any seizures or medical appointments so that you can update the young person’s Individual Healthcare Plan (IHP).
Since 1 November 2018, consultants have been able to prescribe cannabis-based medicines such as cannabidiol (CBD) as an ‘add-on therapy’ for young people with very complex childhood epilepsy.
Vagus nerve stimulation (VNS) uses a small device, about the size of a cardiac pacemaker, called the vagus nerve stimulator, to stimulate the vagus nerve.
External trigeminal nerve stimulation (eTNS) is a newer procedure not yet widely available in the UK. An external stimulator, designed to be worn at night, attached to patches on the forehead, triggers impulses along the trigeminal nerve.
For as many as one-quarter to one-third of children with epilepsy, ASMs are ineffective. For a child who has focal seizures and has failed at least two ASMS Neurosurgery (brain surgery) should be considered early for these children depending on the results of a number of detailed tests.
The ketogenic diet, used with or without anti-seizure medication, can lead to better seizure control for some children who don’t respond well to ASMs. The principles of the diet are:
The diet is a medically prescribed treatment for managing epilepsy and is specifically designed for each individual young person. It is carefully managed by epilepsy specialist health professionals, including dieticians and consultants.
There are different variations of the ketogenic diet. Details of a young person’s ketogenic diet should be included in their Individual Healthcare Plan.
Some families may work with school catering so that ketogenic meals can be provided. In most cases, parents of young people on a medically prescribed ketogenic diet will send in ready prepared foods. It is vital that the young person does not eat anything extra at school. Nor should anyone else eat the young person’s food.
The young person should be encouraged to eat all their food but should never be forced. It is important that children on a ketogenic diet maintain a good fluid intake.
Ketones are monitored at home morning and evening, but the school should be aware of symptoms of high ketones or low blood glucose, and how to respond if the young person feels unwell.
Regular communication with parents is essential to ensuring the young person is well and fully included/supported in school.
It’s essential that school staff working with a young person communicate with their family to find out how best to support the young person and record these details in their IHP.
For a young person with epilepsy, regular sleep patterns are important, so the school should take this into consideration when, for example, planning residential trips. Keeping blood sugar levels balanced and staying hydrated are also important, so the young person may need access to water and healthy snacks during lessons. Stress management and relaxation exercises may be part of their routine, so consider allowing them ‘time out’ and a space to complete these.
Some people turn to complementary medicine and alternative therapies such as homeopathy, aromatherapy, massage, acupuncture, chiropractic treatment, yoga or relaxation therapy to help with epilepsy.
There is, however, no conclusive scientific evidence that these reduce seizures, and some may interact with ASMs.
Deep brain stimulation (DBS) is a treatment in which specific areas in the brain where seizures are occurring are stimulated electrically.
DBS therapy is, however, only offered to adults whose seizures can’t be controlled by ASMs and who aren’t suitable for other types of surgery.
Find out more about DBS therapy.
Information for schools about seizure types and triggers, and planning for them
Information for schools about first aid for epilepsy seizures
Information for schools about keeping accurate seizure records, with visual aid
Young Epilepsy’s information for schools about status epilepticus and emergency medication, including training and storage
Other sections of the guide that may be of interest
An overview of the different laws and systems in England, Northern Ireland, Scotland and Wales
Information for schools about epilepsy's impact on learning for young people
Epilepsy can have a profound effect on a young person's emotions and behaviour, which can produce a range of emotional responses that make academic achievement at school difficult.
The key elements of support that schools should have in place to ensure all young people with epilepsy are safe and included in school life