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Epilepsy Association of Western Australia (Inc.)
Annual
General Meeting Thursday October 30th 2008 @ 6.00pm
17th Annual Epilepsy
Seminar
Annual Audit 2008
www.epilepsy.org.au
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Epilepsy News
Epilepsy Research
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son Romeo has Epilepsy
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Safety
Issues for Living with Epilepsy
Living safely
We all face risks in our daily lives. Some people with epilepsy, especially
those with poorly controlled seizures, have an increased risk of injury. If
safety is a concern for you or your family, there are some precautions you can
take within the home and when out in the community to minimise your risk of
injury and counsellors at your Epilepsy Australia affiliate will be able to
advise on your individual circumstances. The following are suggestions only and
they may not apply to everyone.
Around the home
The living room
Open fires, heaters, the sharp edges of furniture and expanses of window
glass all pose some risk in the event of a seizure.
You can lessen these risks by:
placing guards securely in front of fires and heaters. Avoid radiators that
have no guards and, if you are buying a new heater, consider the fan type or a
bar heater that can be fixed high on the wall.
placing furniture in front of glass windows.
having oval rather than square tables and furniture without sharp comers.
The kitchen
Hot liquids, open flames or hot elements and electrical appliances are
the main risks in the kitchen.
You can lessen these risks by:
using the back elements of the stove rather than the front ones.
turning saucepan handles to the back of the stove.
using a stove-guard that fits around the top of the stove lessens the chance
of saucepans being pulled over.
avoiding open topped jugs.
using a kettle with an automatic switch off and a safety cradle in available.
using a microwave oven rather than a conventional oven.
The bedroom
Bed head and bedside tables can contribute to injuries during a seizure,
as can a fall from the bed. Pillows may be of concern for some people.
You can lessen these risks by:
moving bedside tables away from the bed and try to reduce hard or sharp
surfaces in the bedroom. If possible, use a bed without a bedhead.
placing the mattress on the floor or sleeping on a futon.
sleeping without a pillow, or buying a porous pillow may be useful.
The bathroom
Bathrooms have inherent risks in that the surfaces are often hard,
there can be sharp corners on cabinets and shower screens, and the confined
space can often restrict assistance in the event of a seizure. Bathing poses its
own set of problems in the event of a seizure with drowning the greatest risk.
You can lessen these risks by:
showering rather than bathing.
using a non-slip mat in the shower/bath
unplugging all electrical appliances as soon as you have finished with them
and make sure they are off the floor.
leaving the door unlocked.
The toilet
Seizures within this confined space can cause injuries and can make it
difficult for people to reach you.
You can lessen these risks by:
leaving the door unlocked and devise another system to ensure your privacy.
replacing an inward-opening door with a sliding or outward-opening door.
Helmets
If you have a lot of seizures, you may choose to wear a specially
designed helmet to help protect your forehead, chin and head from injury.
However if the helmet is not fitted properly, it may not give you enough
protection.
You can lessen this risk by having a helmet custom made to your requirements.
General safety
Follow the normal rules of road safety, such as using the walking lights
when you are crossing the road. Depending on your type of epilepsy, consider
wearing information - a Medicalert bracelet or necklace detailing your name,
address and medical condition.
Medicating safely
It is important to know your medication, its brand name, prescribed strength and
dose, and be aware of possible unwanted effects. Open discussion with your
doctor about what to expect from your medication and the impact of any side
effects and seizures on your quality of life is the best way to manage drug
therapy.
Taking your medication as prescribed is the cornerstone of your treatment
therapy. Changes to your dose should only be made in consultation with your
doctor as too much medication can lead to unwanted effects while too little
medication can increase seizure frequency. It is important that you take your
medication at the specified time/s each day while taking your medication with
fluids and with food will avoid heartburn or indigestion.
We can all miss doses, however missed doses can lead to increased seizures.
Antiepileptic medications vary in the way they are absorbed, processed and
stored in the body. Neurologists now agree that you should take the missed dose
as soon as you realise you have missed a dose, even if this isnt until the next
does is due. That is, you should catch up. The risk of this is minor over
dosage, the symptoms of which are not serious and will last no more than a
couple of hours, while the risk of not doing so is a seizure. Make sure you
discuss this with your doctor. Better still, dont miss a dose.
At times it may be difficult to remember if you have taken your medication as
prescribed. You are less likely to miss a dose if you make taking your
medication part of your daily routine. For example, you can take it with meals
or you can take it when you get up and when you go to bed. To help you remember,
you can keep your tablets on top of your pillow or in the kitchen. Some people
use digital watch alarms to remind them. It is more important to take your
medication when you are more likely to remember than at exactly 12 hourly [or 8
hourly] intervals. Dosette boxes have separate compartments to place all the
tablets required for a week or a day and a glance at the dispenser will reassure
you that not missed a dose. People who are unable to manage their own medication
may find it helpful to have the dosette box packed weekly by a professional.
Dosette boxes are available from most pharmacies and some discount shops or
contact your Epilepsy Australia affiliate.
If you have been missing doses and having more seizures as a result, be honest
with your doctor. If you are not, due to your increased seizure activity he or
she may increase your medication dose, inadvertently putting you in the position
of being over-medicated. Too much of a certain drug in your bloodstream can
produce undesirable effects. Your doctor may order blood tests from time to time
to determine the right level of medication for you.
Keeping adequate supplies of your medication on hand and a spare prescription at
home or with your chemist, will save you from 'running out' at an inconvenient
time.
Though available to all Australians through the Pharmaceutical Benefits Scheme [PBS],
some antiepileptic drugs are very expensive and are subsidised to many thousands
of dollars each year. Some of these medications are only available on
"authority" and your doctor needs to get permission from the Health Department
in Canberra to prescribe them. If lost, these prescriptions are more difficult
to replace. Because of the cost of these medications to the PBS, your chemist
may not keep them in stock, so try to give plenty of warning when you need to
have your prescription filled.
Keep your medication in a cool dry place out of the reach of children. Throw
away drugs you are no longer using or take them to any pharmacy for safe
disposal. Never give them to anyone else. Nor should you try other people's
drugs. Your medication has been prescribed with your particular epilepsy
syndrome in mind.
Other medicines may interact with your medication causing increased unwanted
effects or increased seizures. To avoid interactions, always tell your doctor,
dentist and pharmacist what other medications you are taking. Even when buying
and using over-the-counter medications check with your pharmacist about possible
drug interactions.
Alcohol does not mix with some antiepileptic medications and may trigger
seizures. Check with your doctor if it is safe for you to consume small amounts
of alcohol.
Avoid using street drugs such as cocaine, ecstasy, heroin, amphetamines or
marijuana as these drugs can provoke seizures or lower seizure threshold in
people with epilepsy. Even though marijuana has been shown to have anti-seizure
properties suited to some forms of epilepsy, its irregular supply, imprecise
dosage and varying side effects to say nothing of the criminal penalties that
apply in some parts of the world for using it make it problematic. Should you
be unable to continue to use any drug with which you are controlling seizures,
you are at a significantly increased risk of having breakthrough seizures.
Vomiting and diarrhoea can alter the level of medication in your bloodstream
required to control your seizures. If you vomit within 15 minutes of taking your
medication, it is advisable to take another dose. If vomiting or diarrhoea
continues, see your doctor.
But most importantly, don't stop taking your medication. Sudden withdrawal of
medication can lead to increased seizures as well as putting yourself at risk of
status epilepticus [prolonged seizures] which can result in brain damage or
death. Antiepileptic medication should only be withdrawn under medical
supervision.
Parenting safely
The arrival of a new baby usually means a review of the normal safety procedures
in your home. If you are a parent of a new baby and you have epilepsy you may
need to take extra care to ensure the well being of your child. A few simple
precautions can reduce the risk of accidents and prevent unnecessary anxiety for
you as a parent.
The kind of precautions you need to take will depend on your individual
situation. You may need to consider:
the type of seizures you have
how long they last, and how long it takes you to recover
any warnings, or patterns as to when seizures occur
frequency of seizures
any other condition or disability which may affect your epilepsy
whether help is close at hand
For example, a parent who has frequent seizures without warning and involving
loss of consciousness, will need to take more care than a parent who rarely has
seizures, or who has a reliable warning of a seizure coming on.
Getting some sleep
All new parents, particularly the breast feeding mother, will experience
overwhelming tiredness for the first few months. Sleep deprivation contributes
to an increased chance of a seizure, so it is important that you try to catch up
on sleep whenever possible. Most babies wake during the night over the first few
weeks. Sharing the responsibility with your partner or a helper will assist you
to get as much sleep as possible, especially if your baby is wakeful between
feeds. During the day try to sleep at the same time as the baby. To insure you
get uninterrupted rest, put a note on the front door, turn the phone volume down
and if you have one, turn the answering machine on.
General safety
When you take your new baby home the maternal and child health nurse will
be an excellent source of advice on baby care and general safety procedures
during childhood. There are standard precautions which any parent with a baby or
young child should think about, and these apply equally to the parent with
epilepsy.
Falls
A baby who is in a playpen or bouncinette on the floor will come to no
harm if you have a seizure. You may have time to put your child in a safe place
if you have a warning, but if seizures are frequent and unpredictable it is wise
to have your child 'confined' in some way most of the time. A stair gate is a
wise precaution in any home. Remember that the more room a child has to explore,
without risk of harm, the wider their horizons will become as they grow up. It
is a matter of having a balance between safety and learning.
Burns and scalds
Do not have a hot drink near you when feeding or cuddling your baby. With
an active child around it may be safer to postpone tasks such as ironing until
their nap, if this is at all possible. Alternatively, a gate at the kitchen
entrance will ensure that an inquisitive toddler cannot reach the oven or a hot
stove should your attention be diverted or if you are unconscious as the result
of a seizure. Keep saucepan handles pointing inwards on the stove, so that they
cannot be knocked over, or use a stove guard. Use back burners where possible.
Ensure no electric leads are trailing around, and guard heaters and open fires.
Covers for electric sockets which are plain, flat surfaced and difficult to
remove, are available from hardware shops. Ensure you choose garments with
reduced fire risk.
Bathing
If you have seizures that involve loss of consciousness it is a good idea
to bath the baby only when someone else is at home. At other times you may
choose to sponge the child in its cot or on a waterproof sheet on the floor,
with the basin of water well out of reach, where it cannot be knocked over if a
seizure occurs. Also be aware of any containers of water that may be a danger
such as a nappy bucket; these should also be well out of reach. If you are alone
in the house and liable to have an attack with resulting unconsciousness, it is
unwise to bath the baby in either an adult or baby bath.
Seizures may be more likely to occur when the mind is inactive or drowsy. Hot
baths, which induce this state of mind, may therefore be a special hazard for
you. It is a good idea to make sure that someone else is at home. Run the cold
water first, always turn off taps before you get in, avoid deep water and do not
lock the door.
Carrying
If you are subject to very frequent seizures, without warning and
involving loss of consciousness, you may prefer to avoid carrying the baby in
your arms if you are alone. You could attach wheels to a carrycot and wheel the
baby alongside you. Or if you know you've been missing out on sleep lately and
are therefore more likely to have seizures, you may need to do less lifting and
carrying of your child.
Feeding
Babies benefit from breast-feeding, and the fact that you are taking
antiepileptic drugs is not usually a problem. Discuss what is best for you and
your baby with your doctor. Whether you are a mum breastfeeding or a dad
bottle-feeding your baby, you can reduce the risk of dropping the child in the
event of a seizure. Sit on the floor with your back to the wall and a cushion on
either side so that the baby does not have far to fall if you lose
consciousness. If you bottle feed your baby and tend to fall in the same
direction each time, hold the baby on the opposite side so that you fall away
from, instead of towards, the child. Most high chairs are adaptable, and you
might consider setting the chair at its lowest height, and sitting alongside on
the floor while feeding an older baby.
Nappy changing
This activity is best carried out on a waterproof mat on the floor. Avoid
changing the baby on furniture such as a bed where the baby may roll and fall
off if unattended. If seizures are unpredictable and frequent, it is helpful to
station yourself according to the way you usually fall in a seizure. For
instance, if you fall to the left, be on the baby's left side so you're certain
to fall clear. If safety pins are a concern, you may wish to use disposable
nappies with tape fasteners.
Medication
Whenever there are pills or tablets in the home, great care must be taken
to keep them out of the way of children. A cabinet with a childproof lock is the
best way of storing them. Also, be aware of taking your tablets in front of your
child: children love to copy, and if children regularly see you taking tablets,
they may want to imitate you.
Outside the home
When you take your baby out in the pram you may consider tying a length
of cord from your wrist or waist so that the pram will not run away if you let
go of the handle during a seizure. The cord should be long enough so that you do
not pull the pram over when you fall. Reins will prevent a toddler from
wandering off if you have a seizure in the street, but the child should always
carry identification in case of this eventuality. However, even a very young
child can learn to sit by your side until you recover. Be sure too that your
garden is well fenced, especially with regard to swimming pools, and has a
bolted or locked gate. This will ensure that young children will not come to
harm if you should have a seizure whilst they are playing in the garden.
Explaining epilepsy
Your child will naturally be alarmed if a seizure occurs without any
warning or explanation. The child will not understand what is happening, and
secrecy will suggest that things are much worse than they actually are. It is
therefore important that you start explaining your epilepsy to your child as
early as possible, expanding on details as the child grows up. Children quickly
learn how to be useful: preventing you from hurting yourself and taking care of
any younger children during a seizure. The information you give your children is
very important, but do remember that you are not just giving facts but conveying
attitudes as well.
Relationships
A new baby can put stress on the relationship between any parents, and
this stress can be exaggerated if the couple feel anxious about the effect of
epilepsy on their family. Open and frank discussion about each other's feelings
can often reduce this stress and sometimes prevent it altogether. However, both
parents should be sympathetic and understand each other's needs. A parent may
feel "distanced" from their baby by the safety precautions they have to take
whilst at home alone; they may need time when their partner is around to hold
and cuddle their baby.
Still concerned?
If you have further concerns, contact your maternal and child health
nurse or general practitioner, or contact your Epilepsy Australia affiliate. As
a person with epilepsy you will have been taking safety precautions at home
before the new baby arrives. The extra care required to ensure that your child
enjoys an accident-free home will only be an extension of your existing safety
procedures. A new addition to your family should be a time of pleasure not
marred by unnecessary anxieties.
Swimming safely
Sometimes people with epilepsy avoid swimming, or are barred from swimming,
because of fear that they may have a seizure in the water. However, with a few
sensible precautions, people with epilepsy can safely enjoy all the benefits of
swimming.
For the person with epilepsy
Never swim alone.
Only swim where you feel safe and confident.
If you are feeling unwell or have missed your medications, don't swim.
Make sure there is someone with you who is a strong swimmer and could assist
you. Otherwise swim in water no deeper than your companion's shoulder height.
Always tell the person you are with that you have epilepsy.
Make sure that person knows what to do in the event of a seizure.
If swimming at a public pool tell the attendant how to assist you should you
have a seizure.
Please note that strict one-to-one supervision is recommended for people with
poorly controlled epilepsy. If you have concerns about the safety of swimming
contact your Epilepsy Australia affiliate and a counsellor will discuss these
with you.
What to do if someone has a seizure in the water
There are many different kinds of seizures. Some people experience
seizures that are characterised by a strange sensation, but remain fully
conscious. If this type of seizure occurs in water it does not require emergency
action. However the person may feel tired afterwards, or have a headache, so ask
if they want to get out of the water.
Other seizures may involve an alteration in the person's level of consciousness.
The person experiencing the seizure may seem to be in a trance and make repeated
aimless movements for a minute or two, or may lose consciousness and stare or
convulse.
If someone has a seizure in the water and their level of consciousness has
altered in any way, follow the recommended procedure outlined below.
Stay with the person.
Try to stay calm. You can offer valuable assistance.
You might need extra assistance so call out for help.
Ensure that the person's head and face stay above the water.
Don't place anything in their mouth or restrict their movement.
Guide them away from the sides of the pool to avoid injury.
Once abnormal movement has stopped, move the person out of the water and lay
them on their side to recover.
Check the person's airway and pulse and commence resuscitation if needed.
Stay with the person until they have fully recovered.
Please note that even if the breathing seems to have returned to normal and the
person appears to have recovered, water may have been inhaled into the lungs.
It is therefore recommended that anyone who has experienced a seizure and an
alteration of consciousness whilst in the water receive a medical check-up
promptly.
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