Expert: Epilepsy and How To Manage It
The word 'epilepsy' is derived from the Greek word meaning 'to be seized, to be overwhelmed by surprise'. Epilepsy is the collective term for a large group of anatomical and functional disorders of the brain that are characterized by recurrent seizures.
Epileptic seizures are due to intermittent and temporary disturbance in the brain, which produces some or all of the following symptoms:
- Disturbance of consciousness or awareness
- Alterations of bodily movement, sensation or posture
As many as 1 in 20 people will have a single isolated seizure at some point in their lives whereas 1 in 200 will subsequently be diagnosed with epilepsy. In children, the rates are 1 in 100 having epilepsy. Of those diagnosed with epilepsy throughout their lifespan, an estimated 30% have first seizures in the preschool years, with 17% of those occurring in the first two years of life alone.
The tendency to have seizures will vary from person to person, and will depend on many factors. For most people, Epilepsy will only affect them for a short period in their lives. For some, however, the consequences can be more lasting.
What are Seizures?
A seizure can be described as an internal electrical storm; and is the consequence of abnormal, excessive discharges of nerve cells. Seizures are the symptoms of the disorder; not the disorder itself. They may take the form of a loss of consciousness, involuntary movements, a change in behaviour, or a combination of all these.
Generalized Seizures: A large part of the brain is involved immediately at the outset, and consciousness is lost. Symptoms are dependent on the individual, but the most dramatic form is the Tonic-Clonic Convulsive seizure, in which the person becomes rigid, and there is jerking of all four limbs. Breathing is laboured and there may be incontinence of urine. However, not all of these features are always seen.
Partial (focal) Seizures: Affects localised areas of the brain. Symptoms vary, and consciousness may be lost to a greater or lesser degree. 'Simple partial seizures' involve either rhythmical twitching of one limb/part of a limb; or unusual sensations, such as pins and needles in a distinct part of the body. 'Complex partial seizures' involve confused behaviour, automatic behaviours, and memory being affected.
What Causes Epilepsy?
In more than half of all cases, no cause can be found. The person is apparently healthy in every respect; with no underlying illness, or damage causing the seizures. This kind of epilepsy is sometimes called ‘Idiopathic Epilepsy’.
Sometimes however, damage to the brain can result in epilepsy. Common causes include head injuries, strokes, brain infections e.g. meningitis or encephalitis, and birth defects. Other rarer causes are brain tumours, and some genetic conditions like tuber sclerosis.
How is Epilepsy diagnosed?
When a child has seizures, their GP will discuss referral to a Paediatric Neurologist. As there are currently five posts nationally (4 in Dublin, 1 in Cork) this may involve a waiting period. Whether the child is started on treatment in advance of seeing the Neurologist, is up to the GP and parents.
A detailed history is important when diagnosing epilepsy, and it's useful for parents to provide the clinician with as much information as they can. Firstly, keep a diary of all witnessed and suspected episodes: In as much detail as possible, recount what happened before, during, and after.
- What was the child doing just prior? Record any behavioural or mood changes that were notable. Had the child been unwell prior to this, or on medication?
- Were they stressed, excited or ‘out of sorts’ in some way?
- Had their pattern of sleep, meals, or routine been disrupted lately?
- Did the episode begin promptly, or develop more gradually?
- Was consciousness lost, or otherwise affected? (confusion/ disorientation)
- What happened? (e.g. jerking limbs, automatic behaviours such as chewing, staring, eye movements, tremor, or sounds.)
- Were both sides of the body affected, or one side?
- Was bladder or bowel control lost?
- Were they pale or flushed, agitated or unresponsive?
- How long did this stage of the episode last? (time it as accurately as possible.)
- Was the child sleepy? How long did they need to sleep for?
- Were they confused or disorientated?
- Did they have any memory of the event?
- Did they sustain injury?
- Were they able to describe any part of the experience?
Video recording seizures is a very useful method of capturing the episode. When we observe a seizure, we are often emotionally affected by what we see; making it difficult to accurately recall what happened. Perhaps one parent can record the seizure, whilst the other tends to the child. Rarely will the child have a seizure when they attend the clinic, so having it on video gives the doctor an exact idea of what happened.
Tests do not always make a diagnosis of epilepsy; this often remains a clinical decision, based on what happened to the person. It's perfectly possible to have normal or clear tests results and still be diagnosed with epilepsy.
Blood Tests check the general health of the person, and help to exclude the presence of abnormal amounts of various substances in the body, as a cause for the seizures.
The EEG (electroencephalogram) or brainwave test, is designed to pick up brainwave patterns using electrodes placed on the scalp; giving a graph of the patterns detected from selected areas. Any abnormality that occurs during the recording can give important information about the focus (location) and spread of seizures. However, 60% of people are not having abnormal brain activity whilst the test is being performed, and may have a normal reading. A sleep deprived EEG means the doctor may request the child stay awake for longer the previous night, or be woken earlier on the morning of the test; to enhance the likelihood of obtaining the abnormal rhythms connected with sleep deprivation.
Brain Scans help to exclude a structural cause for the seizures. CT or MRI scans of the brain are used to rule out abnormalities such as tumours, malformed veins, or areas of calcification. Luckily over 90% of people with epilepsy will have no such structural abnormalities.
In most cases, epilepsy is treated with medication, which allows many people with epilepsy to live virtually seizure-free lives. The choice of drug may be limited by the fact that perhaps only one or two of these drugs are likely to be effective in controlling a particular type of epilepsy.
Anti-epileptic drugs do not cure epilepsy, they only control it. Some drugs work by making over-active brain cells less excitable, and others work by decreasing the brain cells' ability to transmit abnormal impulses to each other causing a seizure.
Other treatment options such as surgery or Vagal Nerve Stimulator (VNS) may be considered, depending on the type of epilepsy, and the ability to achieve seizure freedom with medication.
Will medication be used indefinitely?
Most childhood epilepsy is controllable with treatment and therefore may not persist beyond childhood. Whether a child is likely to "grow out" of having epilepsy depends on the kind of epilepsy they have. For most children it is more realistic to talk about controlling their epilepsy rather than curing it. Once a child is well controlled on medication for 2-3 years the doctor may discuss with parents the option of withdrawing medication.
From the child's point of view, it must be very confusing. If you seem upset and anxious (as will likely be the case) he/she may worry that it is serious; and if they are not given an explanation of what is going on, they may make up their own reasons; which could be far worse than the truth!
It's important that children with epilepsy are given a factual explanation, which they are able to understand. This will help to prevent undue anxiety, and will lead to a better acceptance of the condition and of its treatment. Encourage them to ask questions; and involve them in the management of their epilepsy.
To normalise epilepsy, it is important that when restrictions are put in place, you find other activities that your child can engage in safely. It may also be helpful for them to meet other children with epilepsy. After all, self-esteem is crucial in their accepting themselves as they are.
How is the stigma of epilepsy best dealt with?
The social stigma associated with epilepsy can be very damaging to children with epilepsy. Research shows that the attitude of others about epilepsy has more impact than epilepsy itself. Children are often self-conscious about their appearance, and it may be very difficult for them to deal with having even brief seizures in public.
Remember that your child is still the same child after a diagnosis of epilepsy. You should treat them the same, and try not to provide too much extra attention. Extra attention can harm personality development, and affect the entire family unit, including sibling relationships.
Effect on Parents
A single seizure, especially your child's first seizure; usually has its greatest effects on you, not them. It is important to realise that feelings of fear, grief, or anger are normal; and they should pass with time. Finding support groups and other resources, can help you to accept your child's condition.
For many parents, the single biggest issue is overprotection. The effects of this can be serious and long lasting; including dependency, hypochondria, low self-esteem, underachievement and immaturity. Parents should not let their anxiety about epilepsy control their life, or that of their child. It’s understandable to be more cautious, but don’t let fear of seizures run your family’s lives.
When out and about, ID jewellery such as the Epi-Alert bracelet helps explain to the public and first responders that the person has epilepsy. If children are reluctant to wear such ID, at least ensure they have an ICE (In Case of Emergency) number programmed into their phone or carry an ID card which explains what to do.
What to do in the event of a seizure
- Stay calm.
- Look around - are they in a dangerous place? If not, don't move them. Move objects like furniture away from them.
- Note the time the seizure starts.
- Stay with them. If they don't collapse but seem blank or confused, gently guide them away from any danger. Speak quietly and calmly.
- Cushion their head with something soft if they have collapsed to the ground.
- Don't hold them down.
- Don't put anything in their mouth.
- Check the time again. If a convulsive (shaking) seizure doesn't stop after 5 minutes, call for an ambulance (dial 999).
- After the seizure has stopped, put them into the recovery position and check that their breathing is returning to normal. Gently check their mouth to see that nothing is blocking their airway such as food or false teeth. If their breathing sounds difficult after the seizure has stopped, call for an ambulance.
- Stay with them until they are fully recovered.
Even those whose seizures are well controlled, may need to take a few extra precautions; whereas people whose seizures continue to be frequent and unpredictable will need to exercise particular care, especially if there's likely to be a sudden loss of consciousness without warning.
- Always keep a well-stocked first aid kit, and keep medicines out of reach of children.
- Be aware of freestanding furniture, cables, and sharp edges.
- Avoid or limit use of glass and mirrored panels in doors, coffee tables and other fixtures.
Bathroom: Young children must be supervised at all times when bathing; or older children should leave the door unlocked (with an ‘engaged’ sign.) Showers are preferable to baths, and water must not become too hot, as heat can induce seizures in some people.
Bedroom: Use special anti-smother safety pillow due to risk of smothering on a soft pillow during sleep seizures. Use a good-sized bed with padded headboard; and keep freestanding furniture away from beds. Coarse carpets can lead to friction burns for those who fall; so keep a safety mat beside the bed.
Local Authority Grants may be available to assist with costs of necessary house modifications.
For more information about Epilepsy, visit Epilepsy Ireland's website on epilepsy.ie; which includes new parents guide: New Beginnings.
This article is part of a new series looking at different challenges which affect children and families; getting expert advice on how to spot the signs, and manage symptoms. There'll be plenty more in the coming weeks in our child health section; but for now check out Expert:ADHD And How To Recognise The Signs