Nocturnal (Night-time) Seizures
Night-time can be the most stressful time for parents due to worrying about missed seizures and the risk of SUDEP (sudden unexpected death in epilepsy).
There are a number of options to reduce worry and incidence, notably:
- Obtaining a specialist bed/cot. These beds can have high sides to ensure the person with Dravet Syndrome cannot fall out and injure themselves. Some cots have sides that are high enough to ensure they cannot climb out.
- Sleeping with your child in a double bed.
- Having a single bed in the bedroom of the individual with Dravet Syndrome for a parent or carer to use when this individual is unwell.
- Exploring respite options, for example your child/adult with Dravet Syndrome staying where there is waking night staff, or accessing a ‘waking nights’ service in your own home. To request a needs assessment, contact your social worker if you have one or your local authorities.
Setting up monitoring systems that can alert you when your child/adult is having a seizure, including:
- Pulse oximeter machines that monitor a person’s heart rate and oxygen levels. Typically, when someone has a seizure, their heart rate increases and their oxygen levels drop. During a seizure the monitor may sound an alarm, so that parents/carers can administer emergency treatment if necessary.
- The pulse oximeter is attached to the patient by a sticky probe, generally on the toe. These machines are not routinely available on the NHS, as so far there is no proof that they reduce the chance of SUDEP, however they can provide reassurance for many families. It is important for families to remember that machines can develop faults. This type of monitoring should never be a replacement for the observation of clinical signs.
- Find out more about Pulse oximeter machines here.
- Epilepsy mattress monitors which alert to tonic clonic seizures and can also be set up to sound an ‘out of bed’ alarm to alert if your Dravet family member has got up.
- Good quality video camera (baby monitor) or CCTV, such as the Summer Infant Baby Pixel Monitor. Find out more about these monitors here.
Seizure Monitor Fund
Night-time monitors can be expensive. Supporting the cost of monitors is one of the services we provide to help families living with Dravet Syndrome. Find out about our Seizure Monitor Fund here.Read More