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Parents with epilepsy

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 ensure you get uninterrupted rest, put a note on the front door, turn the phone volume down and 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 consider, which also apply to the parent with epilepsy. A visit to the Child Safety Centre at the Royal Children's Hospital (phone 03 9345 5085) may also be beneficial.

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. 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 to prevent them being 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. Choose garments with reduced fire risk.

Bathing

If you have seizures which 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 be kept 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 be a particular hazard for you. It is a good idea to make sure that someone else is at home. Run the cold water first, turn off the 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 when you are alone. You could attach wheels to a carry-cot and wheel the baby alongside you. If you know you have been missing out on sleep lately and are more likely to have seizures, you may need to do less lifting and carrying of your child.

Feeding

Babies benefit from breast feeding. The fact that you are taking anti-epileptic 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, 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 modern high chairs are adjustable. You might consider setting the chair at its lowest height and sitting alongside it 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 child-proof lock is the best way of storing them. Also, be aware when taking your tablets in front of your child, as children copy. 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. 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.

Ensure 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 only increase a child's alarm. It is 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 helpful, preventing you from hurting yourself and taking care of any younger children during a seizure.

The information you give your children is very important. Remember that you are not just giving facts but conveying attitudes as well.

Relationships

A new baby can put stress on the relationship between parents which 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 on their own and may need time when their partner is around to hold and cuddle their baby.

If you are a parent 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 which should not be marred by unnecessary anxieties. If you have further concerns, contact your maternal and child health nurse or general practitioner or contact the Epilepsy Foundation of Victoria.