How to keep a seizure diary for your child (and what to write down)
Rachel Ho
Daily Care
How to keep a seizure diary for your child (and what to write down)
Many rare genetic conditions include seizures.
If your child has them, you have probably been asked "how often?", "how long?" or "what did it look like?" in clinic. Those questions are hard to answer from memory, especially weeks later and on very little sleep.
A seizure diary helps you answer them. It does not need to be complicated.
Quick answer: a seizure diary is a simple record of each seizure: the date and time, how long it lasted, what you saw, what was happening beforehand, what helped and how your child was afterwards. Keeping it short and consistent matters more than detail. Bring it to appointments so your child's team can see what has been happening between visits.
Why keep a seizure diary?
Your child's team usually only sees a small part of the picture. Most seizures happen at home, at school or overnight, not in clinic.
A diary can help your team:
see how often seizures have happened between visits
understand what seizures look like for your child
see what has been happening around medicine changes
notice possible triggers, such as illness, poor sleep or missed doses
It also helps you. When you are asked a question in clinic, you can look it up rather than trying to remember.
What to write down after a seizure
You do not need to fill in everything every time. Start with the first four and add the rest when you can.
1. Date and time
Write down the date, the time it started and, if you can, the time it ended.
2. How long it lasted
An estimate is fine. If you can, look at a clock or start a timer on your phone when it begins. Time can feel very different during a seizure.
3. What you saw
Describe what happened in your own words. You do not need to know the medical name for the type of seizure.
You might note:
which parts of the body were affected
whether your child was stiff, floppy, jerking or still
whether they were staring or seemed unaware
any changes in colour or breathing
whether it affected one side of the body or both
Example:
"Stared and didn't respond to her name. Left hand twitching. About 1 minute."
4. What helped, and any medicine given
Note anything you did, and any rescue medicine given as set out in your child's care plan, with the time it was given.
5. What was happening before
Over time, this can help you and your child's team look for possible triggers. You might note:
what your child was doing
whether they were unwell, tired or had a temperature
whether they had slept badly
whether any medicine doses were missed or changed recently
anything unusual beforehand, such as a change in mood or a strange feeling they described
6. How they were afterwards
Recovery can tell your team a lot. You might note:
how long it took for your child to get back to their usual self
whether they were sleepy, confused, upset or weak
whether they had a headache or were sick
anything they could not do afterwards that they normally can
Example:
"Slept for 2 hours after. Wobbly walking until teatime. Back to normal by bedtime."
Should I video a seizure?
A short video can show your child's team what is very hard to describe in words, and many epilepsy organisations suggest it.
Only film if it is safe to do so and someone else is already looking after your child. Your child's safety always comes first.
If you do have a video, ask your team how they would like to see it.
Keep a note of the days in between too
A seizure diary is not only about seizures. A few short notes on other days can add useful context:
medicine changes, including the date and the new dose
side effects you have noticed
illnesses, poor sleep or big changes in routine
good stretches without seizures
Example:
"12 Sept: evening dose increased, as agreed with neurology. 15 Sept: more tired than usual after school. 20 Sept: no seizures this week."
Our guide to what to track between rare disease appointments covers this kind of note in more detail.
Paper, spreadsheet or app?
The best seizure diary is the one you will actually keep. Some families use a notebook by the bed. Others use a notes app, a spreadsheet or a dedicated app.
Whatever you choose, it helps if it is:
quick to use, even at 3am
easy for other carers to add to, such as a partner, grandparent or school
easy to share with your child's team
Sharing the diary with your child's team
Before an appointment, it can help to look back over the diary and pull out a short summary:
roughly how many seizures since the last appointment
anything new or different about what they look like
anything that seemed to happen around a medicine change
your questions
Your team can then look at the full diary if they need more detail.
A note on emergencies
A diary is for keeping a record. It is not a guide to what to do during a seizure.
Follow your child's seizure care plan or rescue plan. If your child does not have one, ask their team about it. The NHS has general guidance on what to do if someone has a seizure. Outside the UK, follow your local emergency guidance.
What to remember
Start simple: date, time, how long, and what you saw.
Your own words are enough. You do not need medical terms.
Note what happened before and after when you can.
Only film if it is safe and someone else is with your child.
Bring the diary, and a short summary, to appointments.
How Rarevia can help
At 3am after a seizure, the last thing you need is a form to fill in.
Rarevia is being built so families can say or write what happened, in their own words, as soon as they are ready. Rarevia keeps it organised alongside everything else, so the story is ready to share with your child's team whenever you need it.
Rarevia can't tell whether something is urgent, and it isn't monitored. In an emergency, follow your child's care plan or contact emergency services.
If you would like a lighter way to keep a record, join the waitlist and help shape Rarevia as it is built.
Sources and further reading
This article draws on guidance from the NHS and Epilepsy Action on seizure diaries and seizure first aid. It is general information, not medical advice. Your child's care team can tell you what applies to your child.
NHS: Epilepsy
Epilepsy Action: Seizure diary
Young Epilepsy: youngepilepsy.org.uk
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