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Looking after a baby or young child when you have epilepsy

It’s not easy looking after babies and young children, as well as looking after yourself. And having epilepsy can add to the challenge. You may well be able to care for your child safely, sometimes with only a few minor adjustments. For others, if your seizure control is not so good, then there are likely to be more challenges. This is particularly true if you don’t have much support around you.

If you are still having seizures, this information is for you. It is about keeping you, and any child you are caring for, safe. Although some information here is specifically for mothers with epilepsy, the tips on keeping a child safe will be just as relevant for fathers or other carers with epilepsy.
On this webpage we use the word ‘parent’ to include carer and guardian.

Epilepsy Action has information about keeping safe when you have epilepsy. There is also a wealth of general information about baby and child safety on the NHS and mumsnet websites, as well as from midwives and health visitors. If you are no longer having seizures, that information might be all you need.

Being a parent with uncontrolled seizures

Being a parent with uncontrolled seizures can involve some concerns. Here are things some parents with epilepsy have identified:

  • Worry around your child’s safety
  • The insecurity brought on by unpredictable seizures
  • The feelings of inadequacy and guilt of not being able to be the parent you want to be
  • The worry of children taking on more responsibility than other children of the same age

Having an awareness of these concerns means you are likely to want to do everything you can to deal with them. Hopefully the information on this webpage will help you to do this.

Talk to others

Many parents find it really helpful to talk to others in a similar situation.  You can do this through Epilepsy Action’s online community forum4e. Or through a variety of other social media platforms. You can read about the experiences of mothers with epilepsy in the Pregnancy diaries.

Looking after yourself: reducing your risk of seizures

It’s easy to lose track of time when you’re looking after a baby or young child. But it’s important to look after yourself too, and to try to avoid things that trigger your seizures.  
Here are some of the seizure triggers that people tell us about:

  • Forgetting to take epilepsy medicines
  • Not getting enough sleep
  • Missing meals
  • Getting over-tired

Not everyone has triggers for their seizures, but knowing that these are possible triggers, and finding ways around them, could make a difference.These are some suggestions about avoiding these triggers:

  • Use an alarm clock, alarm on your mobile phone or a pill reminder to help you remember when to take your epilepsy medicine. The Disabled Living Foundation can give you details of suppliers of pill reminders
  • If possible, share night-time feeds with your partner, family member or a friend, to avoid interruptions to your sleep
  • Nap or rest when the baby does
  • Try to make meals in advance, so you always have a supply of something ready to eat
  • Try to avoid getting over-tired. There are all sorts of ways of doing this, for example, shopping online to save you time and energy. There are lots of discussions about the pros and cons of doing this on mumsnet.

Epilepsy medicines after the baby’s birth

If you are a mum with epilepsy your epilepsy medicines may have been increased while you were pregnant. It’s important to have your dose checked again after your baby is born. You may be taking too much, which could make you unsteady. Or it might affect your vision, which is a safety risk for you and your baby.

Read Faye’s blog about her experience of taking too much medicine after the birth of her little boy.

This is a recording of a mum with epilepsy talking about looking after her young baby.

Keeping a baby or young child safe

Bathing, changing and dressing

  • Top and tail them, rather than bathing, if you are by yourself. This is where you wash your baby with water from a shallow bowl. If the baby can move around, make sure the bowl of water is out of their reach
  • Change them on the floor, rather than a changing table or bed
  • Keep nappies and changing materials on each floor of the house. It’s safer than carrying the baby up and down stairs

This is a recording of a mum with epilepsy talking about looking after her young baby.

Feeding a baby

  • Whether breast or bottle feeding, sit on the floor, on a thick rug, with your back well supported. It will stop the baby falling onto a hard surface, if you have a seizure
  • If your epilepsy medicines make you feel confused, or you have a poor memory, keep a note of when you fed the baby and how much they had. There are a number of different apps that could help you with this
  • Label food and milk containers with the date and time you prepared it

Feeding a young child

  • Strap them into a low chair, rather than a high chair
  • If you always fall to the same side during a seizure, make sure they are at the opposite side
  • Try to keep a supply of ready-made food for the child, in case you aren’t able to make any after a seizure

Keeping a baby or young child safe during and after your seizures  

  • If possible, ask somebody else to carry the baby up and down stairs. If it’s not possible, carry them in a car seat – this will help to protect them if you fall during a seizure
  • If you have hard floors, use a pushchair to move the baby around so that they don’t get hurt if you drop them
  • Try to have a plan for someone else to look after the baby if you need to rest after a seizure. If this isn’t possible, try to make your room as hazard free as possible. There’s lots of information about how to do this on the NHS website
  • If you usually fall asleep after a seizure, ask a friend or relative to phone you or call round at an agreed time, to check that you and your child are ok
  • Don’t leave the keys in the locked door, and don’t use bolts or chains. Make sure they are close by, but not where a small child could get hold of them. Consider giving a spare key to a neighbour or getting a key safe for trusted adults to use. This will make sure people can get in, if you need any help. Key safes are available from various high street and online suppliers including the Disabled Living Foundation
  • Let a neighbour or trusted friend know if you’re alone in the house a lot. Then they could look out for anything that seems unusual
  • Don’t use irons, curling tongs or hair straighteners when you are alone with a baby or young child. They stay hot enough to burn a small child even when they have been turned off for some time

Teaching a young child about seizures and first aid

It’s important that a very young child doesn’t feel responsible for you during a seizure – they just need to know how to contact another adult.
As soon as the child is old enough, teach them how to use a phone. They can use this to get help if you are unwell or you have a seizure. Many phones have a speed dial facility, which will make it easy for a young child to use.
As soon as you think they will understand, talk to the child about what happens to you during a seizure. You can use Epilepsy Action’s story about a parent with epilepsy to do this.

Keeping a young child safe when you are outside

Prams and pushchairs
No particular type of pram or pushchair is recommended over another if you are at risk of having seizures. But here are some suggestions for choosing and using one:

  • Choose a pram with a lot of padding, if there’s a risk you might push it over during a seizure – it could protect the baby if you fall. Alternatively, use a portable car seat/pram combination
  • Buy a safety brake that automatically comes on when the handle is released for the pram or pushchair. Epilepsy Action has details of companies that provide pram security
  • If you become confused during a seizure, tie a label with some emergency contact numbers to the handle of the pram or pushchair

Child carriers and baby slings

The child might not be safe if you have a seizure while carrying them in a child carrier or baby sling. Before deciding whether or not to use one, you might want to answer these questions:

  • Do your seizures cause you to fall? If so, would this hurt the child if they are in a sling or carrier at the time?
  • Do you have an aura or warning before a seizure? If so, would that give you enough time to make the child safe?

Child reins, harnesses and wrist straps

These can keep a young child, who can walk, close to you when you’re out and about. But, if your seizures cause any loss of awareness or cause you to fall, you need to consider the following:

  • If you just hold one end of the reins or harness, it would be easy to drop it, giving your child chance to run away
  • If you use a wrist strap, your child would still be attached to you, and could be injured during your seizure

Keeping a child safe in open spaces

  • Try to let someone know where you are going, and what time you expect to be back
  • Don’t go near unguarded water such as ponds, streams, swimming pools, or rivers if you are alone with a child
  • Try to avoid other dangers such as steep steps, roads or railway lines
  • Give the child an identity card with a contact number on, to show an adult
  • Go with another adult if you think it would be safer

Baby changing facilities

Rather than using a changing table in public toilets, consider carrying a changing mat with you, to use on the floor

Getting home after a seizure

If you would find it difficult to get home after a seizure, consider you and your child carrying contact details of a trusted adult who could be contacted in an emergency. You could do this on your mobile phone, which your child could dial, if old enough. Or Epilepsy Action has cards you could use for this.

Getting help from other people

What can family and friends do to help?
There are a range of ways in which someone might be able to help you.Here are some times when it might be useful for you to have someone around:

  • When the baby needs a bath
  • When you need to recover after a seizure
  • When you have had a seizure in the night and need to catch up on sleep
  • When you need to do some cooking
  • When you need to get out for shopping/visiting/ going to the park and so on

They could also help by:

  • Making meals, including stocking up the freezer
  • Giving you their phone number for you or a child to ring and ask for help
  • Holding a spare key and letting you know about times when they could come over in an emergency. This could include night time

What can local social services do to help?

If you need some help to look after your children, have a look at the help for disabled parents section of the NHS website. This will give you an idea of whether you may qualify.

Claiming benefits to help care for a child

Depending on your needs and circumstances, you may be able to claim benefits to help you care for your child. The Turn2us website has lots of information that might help you find out.

Epilepsy Action also has information on epilepsy and having a baby

We have books available for 50p that explain epilepsy to young children, be it their own or their parents. Find them on our shop

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code: 
F059.06

This information has been checked by a person with knowledge of epilepsy and has a baby.

This information has been produced under the terms of Epilepsy Action's information quality standards.

  • Updated November 2019
    To be reviewed June 2022

Comments: read the 2 comments or add yours

Comments

My ex partner will not allow me to have my son on my own. It would only be on the weekends, my seizures are nocturnal. I have had a couple of day time seizures also. When I come around from my seizure I don't really know what's going on for an hour. Does anyone think I should be prevented from having my son on my own thanks.

Submitted by Zane johnson

Dear Zane

I’m so sorry to hear this. Unfortunately, we have heard of similar situations.

Many people with epilepsy are parents. For this reason, we have the following information to help parents to look after their children as safely as possible:

My dad has epilepsy

General epilepsy information for children. This includes stories and animations.

keeping you, and any children you are caring for, safe

Safety

Daily living aids (alarms and phone apps)

 

It’s important that your son doesn’t feel responsible for you during a seizure - he just needs to know how to contact another adult. You don’t say how old your son is, so as soon as he is old enough, teach him how to use a phone or any alarms you may have. He can use this to get help if you are unwell or you have a seizure.

If you need professional help with the family law please contact organisations such as the children’s law advice, Law Centres UK or your local Citizens Advice

If we can be of any more help, please feel free to contact our helpline directly. You can either email helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Diane

Epilepsy Action Helpline Team

Submitted by Diane - Epileps...

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