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LIVING WELL WITH EPILEPSY

Safety

• Living safely

  Down load our Seizure First Aid Poster

• Around the home
  • The living room
  • The kitchen
  • The bedroom
  • The bathroom
  • The toilet
• Helmets
• General safety
• Medicating safely
• Parenting safely
  • Getting some sleep
  • General safety
  • Falls
  • Burns and scalds
  • Bathing
  • Carrying
  • Feeding
  • Nappy-changing
  • Medication
  • Outside the home
  • Explaining epilepsy
  • Relationships
• Swimming safety
• What to do if someone has a seizure in the water
• When an Ambulance is called in an Emergency Situation

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 epilepsy counsellors at the Epilepsy Foundation of Victoria can 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
• minimise the furniture in the living room and avoid having a large coffee table in the centre of the room.

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, which lessens the chance of saucepans being pulled over
• avoiding open-topped jugs
• using a kettle with an automatic switch off and a safety cradle if available
• using a microwave oven rather than a conventional oven.

The bedroom

Bedheads 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 making sure they are off the floor
• leaving the door unlocked
• using a soft shower curtain instead of glass
• using a shower chair.

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 devising 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 side-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 side-effects while too little medication can increase seizure frequency. It is important that you take your medication at the specified time/s each day. 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 isn’t until the next dose 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, don’t 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 you have not missed a dose.

People who are unable to manage their own medication can pay a small additional fee to have their pharmacist supply their medication in a Webster pack. The pack is refilled on a weekly basis and is a reliable way of ensuring the person receives their correct medication. Some people manage very effectively using a dosette box, which they fill themselves. If remembering medication is a challenge then using one of these options is likely to be very helpful.

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 side-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.

Most importantly, do not 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) that can result in brain damage or death. Antiepileptic medication should only be withdrawn under medical supervision.

Parenting safety

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 safety 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 ensure 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 that 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 that 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 a seizure 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. Showering is a safer option than bathing. If you prefer, however, to have a bath always make sure someone else is at home at the same time and knows you are having a bath. 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 while they are playing in the garden.

Explaining epilepsy

Your child will naturally be alarmed if a seizure occurs without any warning or explanation especially if you lose consciousness and convulse or behave in a strange way, which can happen with complex partial seizures. 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.

It is recommended that you teach children first aid and how to use the home telephone in an emergency.

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 while 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 the Epilepsy Foundation of Victoria. 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 lifeguard how to assist you should you have a seizure
• But remember, public swimming pools are very busy places and the lifeguard cannot be relied upon to provide close supervision and could be assisting someone else at the time of the 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 the Epilepsy Foundation of Victoria and an epilepsy 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 his or her 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 but stay in shallow water so you can stand in the water to provide help
• Once abnormal movement has stopped, seek assistance to 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 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 with an alteration of consciousness while in the water should receive a medical check-up promptly.

 

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