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Epilepsy affects children at different ages, and in different ways.
While epilepsy can begin at any time of life, the highest incidence occurs in
children under 5 years. Although some people believe it is linked with physical
disability or mental handicap, in fact most children with epilepsy have exactly
the same range of intelligence and abilities as unaffected children.
For most children, their seizures will respond well to medication and they will
enjoy a normal and active childhood. While there may be the need for some
sensible safety measures regarding swimming and some sports, this should not
stop them from doing all the things their friends do. Access to the full range
of childhood experiences will enable your child to grow into an independent
self-reliant adult.
Not all epilepsy diagnoses are lifelong. One of the most common types of
epilepsy in children is Benign Rolandic Epilepsy that may or may not be treated
with antiepileptic medications as it is known that seizures tend to disappear
when the child reaches puberty.
Nor are all seizures epileptic in origin. Febrile seizures or convulsions occur
only when a child has a rapid rise in body temperature and are most common in
children between the ages of 6 months and 5 years. A minor infection such as a
sore throat or ear infection, but sometimes a more serious infection such as
encephalitis or meningitis, can be the cause of the fever. It is advisable to
seek medical attention in the event of a febrile convulsion so that the cause
can be determined and your child receives appropriate care.
For some children, however, epilepsy will be a lifelong challenge as some
epilepsy syndromes can prove difficult to control. Your paediatric neurologist
or paediatrician can identify an epilepsy syndrome by the type of seizures your
child has, the age of onset and other identifying signs and symptoms. Children
with difficult to control epilepsy may have other problems, such as delayed
development and learning difficulties.
For children whose seizures are not controlled by medication or they experience
unacceptable side effects, several treatments including surgery, the ketogenic
diet, and the vagus nerve stimulator [VNS] may be effective in treating their
seizures. Surgery is being used successfully in some children who do not respond
to medication or experience troubling side effects.
The good news is that groundbreaking research is unlocking the mystery of what
causes epilepsy. With this knowledge comes a range of treatment options that
offer great promise for children with difficult to control epilepsy.
There is often no obvious explanation as to why a child has epilepsy. It is
known that epilepsy can follow a head injury or that it may result from health
problems during pregnancy or be an after effect of a childhood disease such as
measles or whooping cough. Brain tumours [very rarely] may be involved. When the
epilepsy is the result of an illness or injury, it is called symptomatic
epilepsy. But in most cases it is not possible to point to the cause of a
seizure disorder. In this case, it is called idiopathic epilepsy.
Did your child 'inherit' his epilepsy from you? If you have another child, what
are the chances that the child will develop a seizure disorder? The answer to
both questions is not likely. Only if both the parents come from families with
histories of seizure disorders is heredity likely to be a factor. And while the
child may develop epilepsy, the chances are much greater that they will be
normal, healthy individuals. If you would like to know more about how your
family history can influence the chances of a child developing a seizure
disorder, you may wish to consult a neurologist or genetic counselling service.
Diagnosing your child's epilepsy
It is important to establish what type of epilepsy syndrome your child has
because that will determine:
• the type of medical management required, and
• what effect epilepsy will have on your child's day to day life.
Many children have their first seizures during their pre-school and school
years. In diagnosing epilepsy the doctor will require detailed information about
what happened before, during and after the seizure. Your observations and the
teacher's observations in relation to seizures, the child's behaviour and
progress at school are all most valuable.
Ideally, the responsibility for the child's medical, emotional and educational
management should be undertaken by a team approach with parents, doctors,
teachers and other professionals working cooperatively. Such an approach can
minimise any effect that epilepsy may have on your child's total development. In
addition to taking a medical history, the doctor will perform a physical
check-up. A neurologist, paediatric neurologist or paediatrician usually
performs this examination.
A neurological examination generally involves a number of tests, some of them
using complex instruments. For example, the electroencephalograph [EEG] records
electrical activity in the brain and often shows electrical disturbances in
children with epilepsy. While the EEG test is painless, it can be frightening to
a child unless they are properly prepared beforehand and understand what is
happening and why the test is being done.
Your child may also have a CT or MRI scan which is similar to having an X-ray of
the brain. As it is imperative to lie still to get adequate pictures, it may be
necessary to give a light general anaesthetic in the very young child. The scan
is useful in identifying any abnormality in the structure of the brain.
Most children with epilepsy do not have any other associated problems. However,
some children with epilepsy may have difficulty with schoolwork. They may appear
drowsy, lack application and concentration, or have memory problems. There may
be specific learning difficulties associated with reading or mathematics.
However, these problems are fairly common in many children and should not be
immediately ascribed to epilepsy.
If your child's teacher reports that the child appears to be having significant
learning difficulties, or is performing consistently below their capacity,
appropriate help should be sought at an early date. Learning difficulties may be
attributable to the seizure disorder, medication side effect, or low self-esteem
or a combination of these factors. It is important that parents and teachers do
not 'pre-judge' all children with epilepsy as 'likely to have learning
problems'. The level of expectation for each child has a significant influence
on performance. A positive approach of encouragement, stimulation and
reassurance from parents and teachers will help the child to develop confidence
and skills.
Some children with epilepsy may
show behaviour disturbances with or without learning difficulties. Disturbed
behaviour may be attributed to the same factors that affect learning. Low
self-esteem can result from over-protection, lack of discipline or merely
feeling different from other children. If behaviour disturbance reaches a level
that causes concern, help can be sought through the school system or your state
epilepsy association. Your child's teacher will know where to refer your child
for help.
Explaining epilepsy to your child
We often overlook the fact that a child with epilepsy is likely to make up
fantasies about the seizures unless they are properly explained to them. So it
is important that children with epilepsy should be given a factual explanation
about seizures, and one that they can understand. This will help to prevent
undue anxiety and will lead to a better acceptance of the condition and of its
treatment. Information is available your state epilepsy association to assist
you in explaining epilepsy to your child.
Your
child's activities
Most children with epilepsy can and should take part in sports and other
activities that are consistent with their age and offer a reasonable degree of
safety. It is important that parents and teachers encourage young people with
epilepsy to grow into independent self-reliant adults. The problem is to
determine what is an acceptable risk. Obviously some activities are inherently
more hazardous that others and each child is different.
Your
feelings as parents
Like most parents, your child's health is one of your most important concerns.
Even so, people react in different ways when they are first told that their
child has epilepsy. Some parents find this very difficult to accept. Anger can
be a common reaction: why did this happen to my child? Depression and feelings
of inadequacy may follow. It is worth taking the time to examine some of these
emotions, because with time and increased understanding many of these feelings
will be resolved. Also your feelings can influence your child's reaction to
their condition. If you deal with your child's epilepsy in a relaxed and open
manner, your child will naturally feel relaxed about it too. Seeking the facts
about your child's unique situation will increase your confidence in dealing
with it.
It is important for parents to discuss their feelings openly with each other.
Husbands and wives can be great sources of emotional strength to each other. It
may also help to talk to staff from your local epilepsy association, as they
will understand your fears and doubts and may be able to put you in touch with
parents who are in a similar situation.
Nurturing self-esteem in children who have epilepsy
Self-esteem is one of the most precious qualities a child can develop. For with
self-esteem the life-long challenges of forming healthy and responsible
relationships and the skills and confidence to reach personal goals can be
achieved.
For children with epilepsy, high self-esteem is especially important yet it can
sometimes be hard to attain. Epilepsy for some is an ongoing condition and
children can meet with ignorance and misunderstanding about their condition from
peers, teachers, the community and even family members.
Coping with a condition that is characterised by unpredictable and irregular
seizure activity can place the child in situations that can lead to feelings of
embarrassment, rejection and guilt. As a consequence, difficulties can arise [at
school, socially with their friends, and within the family] which make it hard
for a child to have a positive attitude.
Remember each person is unique – there is no one else in the world like your
child. So it is especially important for parents/carers and family members to
relate to the child who has epilepsy so they do feel unique, loved and capable.
Good relationships are based on affection, inclusion and control. These
psychological needs continue throughout life and enable us to become self-loving
and confident people.
We all love to be smiled at and hugged. Giving and receiving affection helps us
all to feel loved and capable. Being included in activities whether at home, at
school or at play, fosters a feeling of belonging with family and friends. These
experiences help us to feel capable and confident in social situations. And we
all need to have a sense of control within our lives. For the child this is
helped by consistency in relationships with parents, teachers, and friends.
Being able to participate in decision-making [taking into account the age of the
child] and goal setting helps to achieve this sense of control.
Incorporating these elements in your day to day interactions with the child will
help establish a positive attitude towards their condition and themselves.
Children understanding
epilepsy
Nothing ever seems so frightening if we have an
understanding of it. Discuss epilepsy in an open, positive way. Honest
explanations need to be matched to the child's level of understanding. Be open
to their feelings and concerns about their seizures. Include the child in
conversations, rather than talking about epilepsy in their presence.
Building on their strengths
Everyone has their own strengths: helping to develop them produces a positive
self-image. Find out what the child likes to do and encourage them in this
endeavour. Using their strengths in areas that they find more difficult, can
often help them to achieve in that area too. Try to avoid making comparisons
between brothers and sisters, or peers, remembering that we are all different
whether we have epilepsy or not. Being positive about achievements encourages a
child to reach further.
Behavioural Issues
The child with epilepsy who may also have behavioural problems may be painted as
the "black sheep" in the family. This may affect the way the entire family
relates to the child and promote the difficult behaviour. It is really important
for the family to turn around their attitude in this setting and emphasise the
positives in the child's behaviour, which can often dramatically modify the
behavioural problems seen in the child.
Inclusion in decision-making
There may be a variety of issues in day to day life that may be affected by a
child having epilepsy. Situations that might require particular management are
swimming, hiking, climbing and, for the older child, late nights. These can
create some difficulties. Helping to resolve these issues is a great learning
experience for the child. Living positively with epilepsy and not being
controlled by it is very important. Over-protecting the child can be detrimental
to their personal development and lead to low self-esteem. To always hear "you
can't" is very restrictive, but rather "how can" is a much better approach. To
be listened to builds esteem in the child and to have their ideas accepted, even
though along the way they may have to make compromises, makes the child feel
that they have ownership of the decision.
Encourage your child to develop a good relationship with their doctor
Just as parents like to be able to talk openly with the doctor, encourage the
child to ask questions and talk about their epilepsy. As the child grows up they
can start to take responsibility for the day to day management of the condition,
for example remembering to take their medication.
It is interesting to note that in the Chinese language the symbol for crisis is
the identical symbol for opportunity. Take the opportunity with your child to
have as happy, healthy and independent a life as possible. It is important to
have FUN and enjoy each other's company. We are what we believe we are!
Talking to children about epilepsy
If you are a parent, carer or teacher, you may need at some time to explain
epilepsy to a child. The child may have epilepsy or know someone else with the
condition. Epilepsy can be frightening and confusing for a child. Talking about
epilepsy can help children begin to cope, ask questions and reduce some of the
myths and fantasies surrounding the condition. An explanation that they can
understand will help alleviate their fears and encourage them to understand
exactly what epilepsy is, why it occurs and how to manage it.
Understanding epilepsy yourself
Gaining a thorough understanding of epilepsy yourself will enable you to explain
the condition clearly to children. If you, or someone in your family, is
diagnosed with epilepsy, obtain a detailed explanation from the doctor so that
you can pass this on to your children and other family members. This will help
the whole family to come to terms with the epilepsy and be prepared in the event
of a seizure.
There is a wide range of resources available to parents, carers and teachers
including brochures, videos and staff at state epilepsy associations.
The
individual child
Children will respond differently to epilepsy, so be prepared for a variety of
reactions and be flexible in your approach to explaining. Establish the child's
understanding of epilepsy and then take it from there. Remember to make the
information you give suitable for their age and level of ability. Try to
demonstrate to children that you are quite willing to discuss epilepsy and
answer their questions.
It is ideal to explain to the child as soon as possible in case they begin to
imagine the worst, but keep in mind that some children will be satisfied with a
brief explanation while others will want more detail. Some children may require
several explanations before they totally understand epilepsy. Young children
sometimes act out their fears with a change in behaviour such as bed-wetting and
could need some coaxing to confide in you.
Involving the child
If a child has epilepsy, encourage them to take responsibility for their
medication and to explore epilepsy for themselves by using libraries and
services and resources available from your local epilepsy association. This can
help them come to terms with their epilepsy from an early age.
If the child is coping with someone else's epilepsy, it may be helpful to
suggest jobs for them to carry out when the person has a seizure. For example
tasks such as removing hazardous objects, getting help from an adult and
reassuring the person with epilepsy may allow the child to feel useful.
Points
to consider
When you are about to explain epilepsy to a child, take into account such
factors as when and where you will be able to talk to them, how much you intend
to explain and whether it is private or a family discussion. These factors can
influence the way the child reacts to the information.
Using diagrams and models showing the brain and seizure activity can help. Many
resources are tailored to meet the needs of specific audiences including
children. You can ask the doctor or a counsellor to explain epilepsy too, or to
be present while you explain it.
Remember that a child with epilepsy may never have seen a seizure; give him or
her a realistic and matter of fact description of what they look like during a
seizure. It is also important to reassure children that it is very rare for a
person to die or experience pain during a seizure.
Infantile Spasms [West’s
Syndrome] and Lennox-Gastaut Syndrome
Infantile Spasms [West’s Syndrome]
Infantile spasms are a special form of epilepsy that may occur during infancy.
The spasms usually begin when the baby is between three and eight months of age.
In approximately 50 per cent of cases, the cause of infantile spasms is not
known; in the other 50 per cent, there are many different conditions affecting
the brain, such as brain malformation, birth injury or meningitis, which can
cause this type of epilepsy.
Diagnosis
The diagnosis of infantile spasms is difficult and requires careful observation
of the child. Characteristic signs include a combination of the spasms,
developmental delay and a characteristic disorganised EEG pattern called
hypsarrhythmia. This EEG pattern is seen in about 70 to 80 per cent of children
with this condition.
The
spasms
Symptoms can vary from child to child, however there is usually a sudden spasm
or bending [flexion] of the body either at the waist or neck. A baby who is not
yet sitting up may be lying quite comfortably and will suddenly draw its legs up
at the hips, throw its arms out and lift its head. It is not uncommon for the
baby to cry out after a spasm and be rather irritable. Children who can sit may
bend at the waist and their head can fall forward. Spasms usually occur in
clusters; each one is brief, lasting only a few seconds. Seizures may occur more
often when the child is drowsy, either just going off to sleep or having just
woken.
Prognosis
This form of epilepsy is caused by a variety of conditions, each with different
outlooks.
When a child's development has been normal prior to the onset of the spasms,
there is a better chance of:
· controlling the seizures with medication; and
· development and learning being normal or only mildly delayed.
However, when infantile spasms are associated with abnormalities of the brain,
it is difficult to completely control the seizures and intellectual disability
is very likely to be present. In most babies the spasms will cease between the
ages of two to four. Approximately half the children will continue to have other
kinds of seizures when the infantile spasms have stopped.
Treatment
Infantile spasms often respond to Prednisolone or A.C.T.H. [cortisone-like
medications] or Vigabatrin. To avoid long term use of these drugs, Nitrazepam [Mogadon]
and Clonazepam [Rivotril]are often used in conjunction with the A.C.T.H.,
Prednisolone and Epilim.
For further information on this topic contact your Epilepsy Australia affiliate.
Lennox-Gastaut Syndrome
Lennox-Gastaut Syndrome [LGS] is one of the more severe forms of epilepsy. It
usually develops during preschool years and is characterised by several seizure
types and developmental delay. Seizures are generally difficult to control due
to their resistance to antiepileptic drugs.
Often no specific cause is
identifiable: however, some of the known causes include:
· developmental malformations of the brain
· genetic brain diseases, such as tuberous sclerosis, and inherited metabolic
brain diseases
· brain injury due to problems associated with pregnancy and birth including
prematurity, asphyxia [lack of oxygen] and/or low birth weight
· severe brain infections including encephalitis, meningitis, toxoplasmosis and
rubella.
In many instances, LGS is a sequel to infantile spasms – sudden spasms or
bending of the body, either at the trunk or neck. These usually commence at
between three and eight months, and may develop into the mixed seizure pattern,
which characterises LGS, at two to three years. There are also a number of rare
childhood diseases that may lead to LGS.
It is estimated that LGS occurs
in between three to eleven per cent of childhood epilepsies with slightly more
males than females affected. The average age of onset is three years.
LGS is diagnosed by some or all
of the following:
· the presence of a mixed seizure pattern
· some degree of developmental delay or intellectual disability.
· a typical electroencephalogram [EEG] pattern of slow spike wave discharges may
be present.
An EEG is a graphic chart that displays electrical activity generated from the
brain, recorded at the skin surface of the head, commonly referred to as a brain
wave recording.
Seizures
Seizures are always of several types and a child may experience some or all of
these. The most common seizure types associated with LGS are tonic, atonic and
atypical absence seizures. Periods of frequent seizures may be interspersed with
periods of relative freedom from seizures. The most common seizure types
associated with LGS are:
Behavioural disturbances
These include poor social skills and attention seeking behaviour, and have at
least four possible causes:
· the underlying condition causing the epilepsy
· the effects of medication
· the electrical disturbance in the brain in uncontrolled epilepsy
· difficulty in interpreting information and understanding the world as others
do.
Medication
Antiepileptic drugs [AEDs] are usually the best treatment for seizures although
complete seizure control is rarely achieved. LGS often requires frequent changes
in dose and type of medication, with some medications losing their initial
effectiveness. Unlike other childhood epilepsies, the simultaneous use of more
than one type of medication is often necessary.
The AEDs most commonly prescribed for LGS are listed in the table below. There
are also a number of new AEDs currently being trialed in Australia and overseas.
Also see Medication for
toddlers
Surgery
Rarely, corpus colostomy can be considered for very severe drop attacks.
Status
epilepticus
Status epilepticus ['status'] occurs in about 50 per cent of people with LGS and
is the term used to describe prolonged seizures of 30 minutes or more, or the
occurrence of repeated seizures without regaining consciousness between attacks.
Status can occur with any type of seizure and is categorised as either
convulsive or non-convulsive Status can last from hours to days or, in the case
of non-convulsive status, even weeks or months. Factors that may lead to status
include sudden withdrawal from medication, illness, fever and infections.
Status in children with LGS is most often non-convulsive It is characterised by
severe confusion, apathy or a 'flat' mood, stupor or, at worst, apparent
dementia. Inconspicuous muscle spasms and greatly impaired balance and
coordination are usually evident.
Convulsive status may ultimately lead to brain damage and death unless stopped
quickly-usually with the administration of rectal diazepam. Some parents and
carers learn to administer rectal diazepam at home. This option would need to be
discussed with your doctor.
To date, little research has
been conducted into the prognosis of children with LGS. It is clear, however,
that prognosis varies from child to child. Generally, this syndrome is
permanent. A few years after diagnosis, the epilepsy, which was initially so
difficult to control, may become less of an issue but impaired intellectual
functioning and behavioural problems frequently persist. Complete recovery, with
normal development and freedom from seizures, is very unusual for the child with
LGS.
Practical
suggestions to help carers support the child with LGS
· Consider using respite care schemes provided by local councils and other
organisations. These schemes offer the services of a professional carer to visit
your home to look after the child; or placement with another family or
residential centre. Respite care can be on a regular or occasional basis.
· Keep a diary that details the child's seizures, seizure triggers and any side
effects of current medications. This can be useful when consulting with doctors
and in identifying seizure patterns and medication responses.
· Use an intercom in the child's bedroom to monitor any changes in their
condition.
· On outings, consider using a child-stroller for school age children going
through a phase of frequent seizures.
· Question your doctor about all aspects of the child's treatment, including
medications and their side effects, to ensure that you are sufficiently informed
to confidently coordinate the day-to-day management of the condition.
· If you have any unanswered questions about medications, contact your local
pharmacist. However, do not alter your child's medication schedule without
consulting your doctor.
· Consider a hand-held harness to help prevent falls and a helmet to protect the
face and head.
· Lower the temperature on the household's hot water unit or install a
thermostat to prevent scalds and burns.
· Buy a dosette box and tablet cutter from your local pharmacy to assist in
preparing and administering medication.
Diet
The ketogenic diet has been clinically effective in reducing seizures. It is
very high in fat, often unpalatable and must be followed exactly. The ketogenic
diet elevates blood cholesterol levels markedly and is expensive to implement.
It is not a long-term proposition. Some children benefit from this diet.
Vagus
nerve stimulation
The vagus nerve stimulator is a device, similar in size to a heart pacemaker,
which is implanted in the chest with a lead that passes up to the neck and is
placed around the vagus nerve. This device stimulates the vagus nerve for about
30 seconds every 5 minutes and has been shown to improve seizure control in
people with uncontrolled seizures. The device may take up to a year to show
maximum benefit. This device requires an operation for insertion as well as for
removal. The batteries require replacement approximately every 5 years entailing
further surgery.
Attention to seizure triggers
It is recognised that the frequency of seizures may be associated with the
child's level of alertness. The child who is overexcited for example, or lacks
sufficient stimulation, may experience more seizures. A stimulating but stable
environment can therefore be important in reducing the number of daily seizures.
This may include a strict routine of regular meals, sleep and medication.
Illness may also trigger seizures. For example, seizure activity may increase
just before the onset of high body temperature and fever. Vomiting and diarrhoea
can also effect the body's ability to absorb medication.
Family
support programs
Most state epilepsy associations run family support programs that often involve
daytime and evening meetings, and usually include expert speakers. The Epilepsy
Foundation of Victoria coordinates a group called the Uncontrolled Epilepsy
Parents Support Group (UEPSG) for parents and carers of children with LGS and
other forms of uncontrolled epilepsy. If you are unable to attend UEPSG meetings
or you reside outside Victoria, you can be included on their mailing list which
comprises many Australian families, and others worldwide.
It is recognised that the
frequency of seizures may be associated with the child's level of alertness. The
child who is overexcited for example, or lacks sufficient stimulation, may
experience more seizures. A stimulating but stable environment can therefore be
important in reducing the number of daily seizures. This may include a strict
routine of regular meals, sleep and medication.
Illness may also trigger seizures. For example, seizure activity may increase
just before the onset of high body temperature and fever. Vomiting and diarrhoea
can also effect the body's ability to absorb medication.
Family
support programs
Most state epilepsy associations run family support programs that often involve
daytime and evening meetings, and usually include expert speakers. The Epilepsy
Foundation of Victoria coordinates a group called the Uncontrolled Epilepsy
Parents Support Group (UEPSG) for parents and carers of children with LGS and
other forms of uncontrolled epilepsy. If you are unable to attend UEPSG meetings
or you reside outside Victoria, you can be included on their mailing list which
comprises many Australian families, and others worldwide.
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