Seizures and Behavioural Concerns
- Seizures and behavioural concerns are both common problems for children with severe genetic epilepsies.
- Movement disorders may also be seen.
- It can be difficult to distinguish between each of these.
- However, it is important to do so, as each is managed differently.
Things you can do
1. Video the events
A very helpful way of getting information is – where possible – to take a video of any event or pattern of behaviour and share this video with your child’s neurologist at their next routine appointment. When filming your child:
- Try to capture different movement patterns
- Try to start filming at the start of the movement
- Try to make sure the lighting is adequate
- Include the whole child in the video
- If the movement happens in bed, remove sheets and blankets.
2. Take notes using an event record
It is helpful for your doctor if you complete event records:
- You can download a copy of the PENNSW event record here.
- Try to complete the record during or soon after your child’s event.
What your child’s doctor may do
Give your child’s neurologist as much information about the movements as you can, including videos and event reports. Your child’s neurologist may ask you further questions, such as:
- How do the events start?
- Do they happen when your child is awake?
- Can these movements be brought on?
- Is it possible to stop the movement?
- Can you distract your child during the movement?
- When do these movements or events occur?
This information will help your child’s neurologist work out whether this is a seizure, a behavioural pattern or a movement disorder. Your child’s doctor may then make a decision using a process of pattern recognition based on the available information.
Certain patterns are characteristic of seizures, behavioural patterns or movement disorders. For example:
- Rhythmic jerking down one side of the body that cannot be stopped is a likely seizure pattern
- Prolonged crying is unusual in a seizure
Further testing
If your child’s neurologist is still not sure what each event represents, they may recommend video-EEG telemetry. Your child will be admitted to hospital, and the movements and EEG pattern recorded. Information about video telemetry is available here (under the ‘Telemetry’ tab).
If this is not possible, ambulatory (mobile) EEG can be done at home:
- A mobile EEG device worn by the child records brain wave patterns
- The carer also makes a record of events
- A video is not recorded.
What this means is...
Your child's doctor can help you work out whether you child's movements are due to epilepsy, a movement disorder, or a behavioural pattern.
We recommend that you monitor and record these movements, then discuss them with your child's doctor at your next routine appointment.
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Content on this page was generated via the GenE Compass project. The following article provides more information about the project:
- Robertson EG, Kelada L, Best S, Goranitis, I, Grainger N, Le Marne F, Pierce K, Nevin, SM, Macintosh R, Beavis E, Sachdev R, Bye A, Palmer EE. (2022). Acceptability and feasibility of an online information linker service for caregivers who have a child with genetic epilepsy: a mixed-method pilot study protocol. BMJ Open, 12:e063249. https://doi.org/10.1136/bmjopen-2022-063249