Home Help for families Information & advice HemiHelp Associated problems Epilepsy
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This information aims to answer your questions about epilepsy: what it is, why it is associated with hemiplegia and how it might be treated.
Epilepsy is the tendency to have repeated epileptic seizures. An epileptic seizure is an event that causes a change in a person’s awareness of where they are or what they are doing, their behaviour or their feelings. What happens during a seizure depends on where in the brain the disrupted activity is and how much of their brain is affected.
Epileptic seizures happen when the way the brain normally works is temporarily disrupted (when the messages the brain sends to communicate with the rest of the body become disorganised). This disrupted activity can last from a couple of seconds to a few minutes and can make the person’s body do things they wouldn’t usually do.
Many people (about one in 30) will have an epileptic seizure some time in their lives. But having one seizure does not mean you have epilepsy. Epilepsy is the tendency to have repeated seizures and so is usually only diagnosed after two or more seizures. Nevertheless it is a common condition, affecting 1 in every 131 people.
There are many types of seizures but we can divide them into two groups – generalised and focal (or partial) seizures.
In generalised seizures the whole of the brain is affected by the seizure. The person becomes unconscious and will not remember the seizure. Examples of these seizures include:
In focal seizures the seizure affects just part of the brain and the person may not lose consciousness, although they might become quite confused. What happens depends on where in the brain the seizure happens, and what this part of the brain normally does.
For example, the person may get a strange taste in their mouth or a sudden feeling of fear; they may get pins and needles in part of their body; they may become very confused, or make strange movements with their arms or legs; or they may make strange noises or lip-smacking or chewing movements with their mouth. The behaviour depends on which part of the brain is affected.
Both hemiplegia and epilepsy are neurological conditions. There are many causes of epilepsy, but when someone with hemiplegia has epilepsy it is usually because a specific area of the brain has been injured, and this injury causes the epilepsy. In most cases, but not all, this will cause focal seizures that start and affect only that part of the brain. If the epileptic activity spreads to other parts of the brain a generalised seizure happens.
About one in five (20%) of children with hemiplegia also have epilepsy. In most cases the epilepsy starts before the age of five. The chances of a child developing a new case of epilepsy seem to decrease as they get older, particularly after the age of ten.
It can be very frightening when your child has a seizure but there are a few points to try and bear in mind.
If you don’t call an ambulance because the seizure doesn’t last long you will still need to tell your GP that it’s happened.
A seizure is a very stressful event to witness and it can be very hard to remember details of what has happened. Although it may feel like a difficult thing to do, recording a seizure on your smart phone or camera can be extremely helpful to doctors while diagnosing epilepsy. Having a proper record of what has happened will also help you feel more confident when explaining to doctors what a seizure looks like.
If it is difficult to get a recording, the following questions may be useful:
This list is not exhaustive. The more detail you can provide the better. Depending on your child’s age they can also explain how they feel before and after; their account will also be important in getting a diagnosis.
Getting a diagnosis is not always easy as there is no single test that can diagnose epilepsy. If it is possible that your child might have epilepsy, NICE (the National Institute for Health and Care Excellence) recommends that you are referred to a specialist paediatrician (with training in diagnosing and treating children) within two weeks.
Doctors will base their diagnosis on medical history, symptoms and, most importantly, eye witness accounts of what happens before, during and after the seizures. This is why the video can be important.
If necessary, your doctor may do some more tests to get extra information or to rule out other causes. These may include:
In 70% of cases epilepsy is treated by antiepileptic drugs (AEDs). These drugs cannot cure epilepsy, but they work on the brain to try and stop seizures from happening. Which particular AED is used depends on the type of seizures your child has because some AEDs work better for certain seizures. It’s also important to get the dosage right, and this can be a long process.
If your child’s epilepsy doesn’t respond to AEDs and they continue to have seizures, there are other treatment options:
The Epilepsy Society has more detailed information on the various treatments available.
Both hemiplegia and epilepsy affect people in different ways and to different degrees. Your healthcare team will be able to answer any questions you have and should provide you with all the information you need about diagnosis, tests and treatment. There are a number of organisations who can provide epilepsy specific information, including advice about safety, first aid, education, memory problems and travel.
Epilepsy Action0808 800 5050
Epilepsy Society01494 601400 (helpline)
Epilepsy Scotland0808 800 2200
Epilepsy Wales0800 228 9016
Epilepsy Action Northern Ireland
UKIST – The Infantile Spasms Trust
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