Epilepsy and caring for children: a comprehensive guide

Introduction

Many parents and carers with epilepsy successfully look after babies and young children. The information in this guide will help you to identify potential dangers for your child if you have a seizure while looking after them. It also suggests some ways that you can reduce the risks and make sure your child is as safe as possible.

Your health visitor will be able to give you more general advice and information about looking after babies and young children.

This guide covers the following:

The risk of seizures if you are a new mother with epilepsy
Managing seizure triggers - advice for parents and carers with epilepsy
Keeping children safe if you have a seizure at home
Keeping children safe when you are outside the home

The risk of seizures if you are a new mother with epilepsy

There is a small risk that you may have a seizure during labour or in the first 24 hours after giving birth. This happens to one to two in every hundred women with epilepsy who give birth. The seizure(s) might be due to the stress and exhaustion caused by labour. They could also be due to not taking your anti-epileptic drugs (AEDs) as usual throughout your labour.

Information on reducing the risk of seizures in labour is available in our booklet Mothers in mind or on the labour and delivery pages.

In the days and months following labour, there will be lots of physical and hormonal changes in your body. These changes may affect your seizure control and you may find you have more or fewer seizures. You may also find that you have more side-effects from your AEDs, especially if any changes were made to your usual AEDs during your pregnancy.

If you do have more seizures, or experience AED side-effects, ask your family doctor or epilepsy specialist to review your epilepsy and medication.

Managing seizure triggers - advice for parents and carers with epilepsy

During early parenthood, there can be a number of changes to your lifestyle that can increase your risk of having seizures. Here are some triggers for seizures that might be more likely when looking after babies and young children, with a few tips to help you avoid them.

Forgetting to take your anti-epileptic drugs

Use an alarm (for example on a clock or mobile phone) or a pill reminder to help you remember when to take your anti-epileptic drugs. If you would like details of UK companies that supply pill reminders, contact Epilepsy Action.

Missing meals/Low blood sugar levels

Avoid missing meals if possible. You might find it helpful to prepare meals in advance, so you always have a supply of something ready to eat.
If you want to lose any weight that you put on during your pregnancy, seek advice about a well-balanced diet from your family doctor or epilepsy specialist.

Disturbed sleep

If possible, share night-time feeds with your partner or a friend, to help you get more sleep. If you breastfeed during the day, you could express your milk, so that someone else can give night-time feeds from a bottle.
Talk to your family doctor or health visitor about setting a good sleep routine for your baby or child. When they sleep more soundly, so can you.
If your baby is in a cot or Moses basket in your room, place it away from your side of the bed. This would mean that there is less chance of them waking you with every little noise they make.

Stress/anxiety

Talk to your health visitor or family doctor about any stress, anxiety or depression you may be feeling. They can give you access to support, information and appropriate treatment, if this would be helpful.
If you live in the UK and you are worried in case you have a seizure when alone with your child, the Careline alarm service, available from your local council for a monthly fee, may help you to feel safer. If you need help before or after a seizure, you can use the alarm to call for a carer to come straight to you.
If you are finding it very difficult to care for your child, particularly at night, you may be entitled to extra support or benefits. For more information, speak to your health visitor, family doctor, staff at your local Jobcentre Plus office (UK only) or contact the Epilepsy Helpline.

Keeping children safe if you have a seizure at home

Many parents with epilepsy worry that if they have a seizure, they may accidentally harm their child, or their child could come to harm while left unattended. The information in this section may help you to think about safety precautions, which could be used to reduce the risk of accidents.

Bathing, changing and dressing your baby or young child

Never put your baby or young child in the bath when you are on your own. If you had a seizure, they could drown. A ‘top and tail’ wash (where you lay your baby or young child on a towel and dip a sponge into a shallow bowl of water to wash them) is a safer alternative. If your baby can crawl, make sure the bowl of water is out of their reach.
When changing or dressing your baby, use a changing mat on the floor rather than a changing table. This is because during a seizure, you could knock your baby off the table. Also, you would be unable to stop them from rolling off the table and falling onto the floor.

Feeding your baby

When feeding your baby from a bottle or your breast, sit on the floor on a rug or a cushion, holding your baby. If you had a seizure, they wouldn’t have far to fall and they would have a softer landing.
If your seizures or AEDs make you feel confused, you may find it hard to remember when you last fed your baby. Make a note of the time of the last feed and how much they took (from a bottle) or how long it lasted (from your breast).
To remind you which breast you last fed your baby from, use a simple memory aid, such as moving a piece of jewellery from one wrist to another.
If you have memory problems, clearly label food containers or bottles with the date and time that you expressed your breast milk, made up the baby’s bottles or pureed your baby’s food.
If your baby has bottles of formula milk and you feel confused after a seizure, use ready-made cartons of formula. This is easier than trying to count out scoops of formula powder.

Feeding your young child

If you tend to fall to one side when you have a seizure, seat your child on your non-affected side to feed them.
If your seizures may cause you to fall and knock over a standard highchair, sit your child in a lower seat that you could not knock over. This could be a bouncer chair placed on the floor or a 2-in-1 highchair (where the chair and table part can be used without the high-legs).
If you are unable to cook food for your child after a seizure (perhaps due to unsteadiness or confusion) keep a supply of ready-made food available.

Keeping your child safe during your seizure and recovery

Use a car seat when carrying your baby on stairs or across hard floors. This would protect them if you dropped them during a seizure.
If you need to rest after a seizure, it is advisable to ask someone else to look after your child. If this is not possible, stay with your child in a room where you can rest and where there are no potential hazards for your child, such as a cooker, fire or loose electrical wires. Make sure that your child would not be able to leave the room, by using safety gates or closing doors firmly. If your child is very young, you may prefer to put them in a playpen.
If there is a risk that you will fall asleep after a seizure, use an alarm to wake you at regular intervals. This will enable you to check on your child, for example to see if they need feeding. Alternatively, ask a friend or relative if they can phone you or call at your house at an agreed time, to make sure that you are all OK.
If you routinely lock the exits to your home when you are inside, don’t leave the keys in the keyholes. Consider giving a spare key to a neighbour, friend or relative. Also, don’t use bolts or chains. These measures will make it easier for people to gain access to your house if you have a seizure and need help.

Making your home safe for children

If you are unable to supervise children during and after a seizure, it is particularly important to make sure that your home is as safe as possible for those times. Here are some safety tips.

Use safety gates to stop an unsupervised child from wandering into rooms where there are potential dangers, such as the kitchen. Gates can also be used at the top and bottom of stairs.
Use cupboard door locks, plug socket covers and safety corners for furniture in all your rooms. These are readily available in many shops. They will minimise dangers to your child if you have a seizure and are unable to supervise them.
Use a fireguard that is fixed to the wall. This would prevent you from moving it out of place if you fell on it during a seizure, leaving the fire exposed to you and your child.
As with all medicines, make sure all your anti-epileptic drugs are kept out of the reach of children at all times, preferably in childproof containers. This would be especially important if you had a seizure and were unable to supervise your child during that time.
If you had a seizure when using an iron, it would be easy for a child to get hold of the iron and get burnt. For this reason, do your ironing at a time when you are not supervising your child. This could be when someone else is looking after them or when they are asleep in a different room.
If possible, do not let your child in the kitchen while you are cooking. If this is unavoidable, follow usual safety measures such as using the back burners on a stove and turning pan handles in. This would prevent you or your child from knocking them off if you had a seizure.

Teaching your child about seizures and first aid

Talk to your child from an early age about what happens when you have seizures. Also, tell your child how they can help you, for example, by putting you on your side after a seizure. This should help your child to feel more confident and know that they are helping you when you have a seizure. Information to help you explain epilepsy to children is available from Epilepsy Action.
As soon as your child is old enough, teach them how to use a phone to get help from a friend when you have a seizure. Many phones have a speed dial facility, which will make this easier for your child.

There is plenty more general information available to help parents to try and make their home more ‘child friendly’. Your health visitor will be able to advise you on reliable sources of information.

Keeping children safe when you are outside the home

This section has suggestions for ways to keep your child as safe as possible, in case you have a seizure when you are outside your home.

Prams and pushchairs

There is no one particular type of pram or pushchair that is recommended for use by people with epilepsy. When choosing one, you may find it helpful to consider the following.

If you might fall and push the pram or pushchair over during a seizure, you could choose one which has a lot of padding to protect your child. Alternatively, for a baby, you could use a pram which you can attach their car seat to, which would also provide protection from a fall.
If you might let go of the pram or pushchair handle during a seizure, you could purchase a safety brake. The brake automatically comes on when the handle is released. Safety brakes are available from REMAP (tel. 08451 300 456 in the UK, or visit www.remap.org.uk).
If your seizures might cause you to be confused and wander away from the pram or pushchair, you could put a label on the pram or pushchair with some emergency contact telephone numbers.

Child carriers and baby slings

Your seizures may affect the safety of your child if you use a child carrier or baby sling. Before deciding whether or not to use one of these, you could ask yourself the following questions.

Do your seizures cause you to fall in a way that could cause your baby or child to be hurt if you were holding them in a sling or carrier?
If you get an aura/warning before a generalised seizures, would you have enough time to remove the carrier or sling and put the baby in a safe place, before the generalised seizure begins?
You may also find it helpful to ask your own health visitor for advice.

Child reins, harnesses and wrist straps

Child reins, harnesses and wrist straps keep your child close to you when you are out and about. If you have seizures which affect your consciousness or cause you to fall, here are some things to consider when using these.

Wrist straps are attached to your wrist and your child’s wrist. If you had a seizure your child would remain attached to you. If you fall during your seizures, you may pull your child to the ground too. However, this would be safer than risking your child running away.
Child reins and harnesses fasten to your child’s body and you hold the end. If you had a seizure, it would be easy to let go of this, so you may prefer to use a wrist strap.

Keeping children safe in open spaces

If you have seizures, you may feel more confident about taking your child out on trips, if you plan those trips carefully beforehand. Here are some questions you might want to ask, before deciding whether or not to take your child to a particular place on your own.

What hazards are there? For example ponds, streams swimming pools, rivers, steep steps, roads and railway lines.
What safety measures are there in the area, to protect your child from danger if you have a seizure? For example, trained lifeguards and fences around water features, door staff, gates and security systems in play areas.
Would it be safer to visit this area when another adult could come with you?
Does your child understand the danger of different hazards and would they stay away from them if you had a seizure?

If you are worried that your child may wander off and become lost if you had a seizure, here are some suggestions to reduce the risks.

Tell your child about a specific place to go if you become separated, for example a park warden’s office or an ice cream stall.
Give your child an identity bracelet, which contains your name, address and telephone number.
Use an electronic system such as a Boardbug. This will sound an alarm to help you locate your child, if they wander beyond a set distance from you.

Changing facilities

Public baby changing facilities often leave you little choice but to change your baby on a baby-changing table. If you had a seizure when using one of these, you could knock your child off the table or be unable to stop them from rolling off the table and falling onto the floor.

To increase safety, consider buying a harnessed baby-changing mat. These portable changing mats allow you to harness the baby on to the mat, so they would not be able to fall off. For information about suppliers of harnessed baby-changing mats available in the UK, contact the Disability Living Foundation (Tel. 0845 130 9177 or visit www.dlf.org.uk)

Getting home after a seizure

If you are worried that you may be too confused after a seizure, to get you and your children home safely, it may help to carry an ID card. On your ID card you could put your name, address and the number of children accompanying you. You could also put the telephone number of a relative or a taxi firm who may be able to take you home.
As soon as your child is old enough, teach them how to use a mobile phone to get help from a friend if you are confused after a seizure. Many phones have a speed dial facility, which will make this easier for your child.