Antiepileptic medication/drugs (AEDs)
The most common treatment for epilepsy is medication. Medicines used to treat epilepsy are referred to as antiepileptic drugs or AEDs. For about 70% of those with the condition, good seizure control can be achieved through the regular use of AEDs. They do not cure epilepsy or treat the cause, but they aim to reduce the likelihood of seizures occurring. Medications are usually taken twice a day (morning and evening).
Finding the right medication to control seizures may take some time, and AEDs are always introduced at a very low dose and then gradually increased. This process allows the body to get used to the medication and reduces the chance of adverse side effects. Medications don’t always work and a young person may continue to experience seizures even when they are taking the optimum dose. Changing or adding a new medication can take a number of weeks as they need to be introduced gradually. This can be frustrating for the young person.
Antiepileptic drugs act on the whole of the brain, not just the area where there are seizures. This may result in side effects that affect a young person’s ability to learn. Some medications can have an effect on the young person’s classroom performance, along with other more common side effects. These effects are more likely to occur when a new drug is introduced to the young person’s treatment plan, particularly if the starting dose is too high or the medication is increased too quickly. Side effects are also more likely to occur in young people taking more than one medication.
Not all young people experience side effects, but it is important to be vigilant in case they occur. Potential side effects may include:
- Drowsiness and lethargy
- Slower information processing
- Attention and memory difficulties
- Dizziness and coordination problems
- Double vision
- Changes in mood/behaviour
- Changes in appetite (eating more or less)
- Hair loss
- Rash (rare but potentially very dangerous)
- Psychosis (rare but potentially very dangerous)
Side effects are most likely to occur when:
- A new drug is introduced
- The dosage of an existing drug is increased
- More than one drug is taken
- Medication is adjusted (in order to maintain seizure control, to match the young person’s growth and development)
If side effects do not resolve, it may be necessary for medication to be changed. It is important for the school to be kept informed of any changes in medication and/or side effects. The school may need to remind parents of the importance of being kept up to date following any seizures or medical appointments to ensure the young person’s Individual Healthcare Plan (IHP) is up to date.
Prescribed cannabis-based medicines
Since 1 November 2018, specialist doctors (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. An ‘add-on therapy’ is a medicine that would be used in at the same time as other epilepsy medicines; doctors are not allowed to treat epilepsy with just CBD. CBD is a medicine and does not have the psychogenic qualities of raw cannabis. Cannabis-based medicines do have side effects and are only prescribed in exceptional circumstances where the specialist doctor believe the benefits will outweigh the risks.
Vagus Nerve Stimulation (VNS)
This 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. It can be used alongside other treatments for epilepsy, such as medication and dietary treatments and it is often used for frequent, reoccurring seizures.
VNS side effects can include hoarseness, throat discomfort, coughing and swallowing difficulties.
Brain surgery may be considered as a treatment for epilepsy if the results of detailed investigations show the seizures are coming from a specific part of the brain and removal or disconnection of the area will not cause further complications. Depending on the type of epilepsy and area from which the seizures originate, there are a variety of surgical procedures that may be performed.
Deep Brain Stimulation (DBS)
This is a procedure that may be considered for those whose seizures are poorly controlled on antiepileptic drugs and for whom other surgery is not suitable. It involves electrodes being inserted into a part of the brain where there is epileptic activity. These are attached to extension wires under the skin leading to a neurostimulator in the chest. Impulses from this, controlled by a programmer, can stimulate the part of the brain with epileptic activity.
Dietary treatments for epilepsy have been around for over a hundred years. There are a number of specialised diets available. They are all are based on the same principle of using a controlled diet to enable the body to produce ketones by metabolising fats. This diet may not be effective for everyone but, for some, it may improve seizure control with fewer side effects than other treatments
Any dietary treatments for epilepsy should only be used under the supervision of a consultant and specialist dietician. It is important that those working with a young person in school have clear guidelines to follow and it is usually helpful to meet with the family in order to find out how the young person can be supported in school.
Modifying lifestyle is an important part of managing epilepsy, maintaining a routine and healthy lifestyle may help control seizures. Regular sleep patterns are important so this needs to be taken into consideration when planning residential trips for example. Keeping blood sugar levels balanced and staying hydrated are also important so a young person may need to have access to water and healthy snacks during lessons. Stress management and relaxation exercises may be part of a young person’s routine so allowing ‘time out’ and a space for a young person to complete these may need to be considered. It is important that those working with a young person in school communicate with the family in order to find out how the young person can be supported in school and details should be included in the IHP.
Complementary and alternative treatments
The DfE Supporting pupils in school with medical conditions guidance states that schools should set out the circumstances in which non-prescription medicines may be administered.
Some people turn to complementary therapies such as homeopathy, aromatherapy, massage, acupuncture, chiropractic treatment, yoga or relaxation therapy to help their epilepsy. There is no conclusive scientific evidence these therapies reduce seizures. As a result, most doctors will not recommend them. Any alternative treatments should be included in the young person’s IHP.
Low concentration cannabidiol (CBD) oil can be purchased as a food supplement. These products have not been tested to ensure they are safe and effective in the same way as licensed medicines.