Nighttime safety and sleep management in LGS
Fact-checked by Many Lennox-Gastaut syndrome (LGS) families experience what they call the “sundown scaries.” As daylight fades, a wave of anxiety or dread sets in as they start to worry about the night ahead, knowing that seizures can happen at any moment while their loved one is asleep. For many caregivers, bedtime isn’t a period of rest. Instead, it is the start of an exhausting shift of hypervigilance due to the fear of unwitnessed seizures.
Although there is no way to eliminate the risk of nocturnal seizures with Lennox-Gastaut, having a proactive system in place that addresses LGS sleep safety and sudden unexpected death in epilepsy (SUDEP) risk management can help caregivers feel less stressed and more confident to tackle the night. Here are some ways to prepare in case a seizure occurs overnight.
Choose the right seizure monitoring technology
There are many seizure monitoring devices available, but it can be hard to determine which one, if any, is right for your family. It is recommended to consult with your child’s healthcare provider to discuss whether a seizure alert device would be useful for your situation, and if so, which device would be best.
Factors to consider when choosing a device can include:
- the purpose of the device
- your particular living situation
- whether you want the data collected to be shared with others
- the cost of the device
- the comfort of the device
- the ease of use and setup of the device
In general, seizure monitors for sleep work by detecting motion. Some systems also incorporate audio, video, or heart rate tracking. They are available as mattress, watch, or camera devices. Although these monitoring systems can provide an added layer of surveillance, keep in mind that they are not designed to prevent or predict seizures or SUDEP.
Here are some of the common seizure alert devices available:
- Mattress-shaking sensors: These sensors are placed under the mattress. They are designed to detect major movements and rhythmic shaking, such as those that occur during a generalized tonic-clonic seizure. However, they may miss minor movement events, such as the stiffening of tonic seizures.
- Wearable devices: These devices are typically worn on the wrist or arm. They can track shifts in movement and changes in heart rate.
- Video monitors: These provide live visual and audio footage, including night vision, to watch for subtle muscle twitches, vocal gasps, and breathing changes. Video monitors help you observe your loved one while you’re in a separate room. Some video monitors can send real-time alerts to your phone and play back events that occur overnight.
Some devices are linked to smartphone apps that maintain a log of events. This creates a history that can be shared with your child’s neurologist at your next appointment. Having an organized and easily accessible log of events makes it easier for your child’s medical team to recognize overnight patterns that may require a change in treatment.
Bedroom modifications for a safe sleep environment
Monitoring technology can provide peace of mind, but it works best when paired with a safe sleeping environment that minimizes the risk of injuries if a nocturnal seizure occurs.
Possible ways to prevent injury from seizures during sleep include:
- using a futon, low-profile bed, or bed rails, or placing the mattress on the floor to lower the risk of injury from falling off the bed. You can also put foam pads or mats on the floor next to the bed to soften tumbles
- removing anything sharp or dangerous near the bed. Examples include nightstands with sharp corners, window blind cords, and plush items that could cause suffocation
- potentially limiting the number of pillows your child uses. If your doctor is OK with it, consider replacing pillows with anti-suffocation pillows that allow for continuous airflow
Establishing a calming, seizure-safe bedtime routine
Optimizing rest is a key part of LGS treatment as sleep deprivation is known to increase the risk of seizures. Having a calm, consistent bedtime routine that consists of healthy sleep habits can support this goal.
Here are some ideas that can help your family establish a calm, seizure-safe bedtime routine:
- Stick to consistent sleep and wake times every day.
- Create a calm environment with dim lighting, soft music, or weighted blankets.
- Encourage relaxing activities, such as stretching or reading a book, before bed, while avoiding stimulating or loud activities.
- Limit exposure to blue light (i.e., televisions, phones, and other electronic devices) in the evening through bedtime.
- Use breathable bedding layers.
- Ensure all nighttime caregivers are up to date on important updates from the day, such as skipped meals, seizures, or missed medications.
Role of sleep hygiene in overall seizure management
Many children with LGS get caught in a difficult cycle in which nighttime seizures disrupt their sleep, and poor sleep increases the risk of future seizures. Because sleep and seizures are closely linked, prioritizing healthy sleep is a key part of seizure management. While good sleep hygiene alone cannot prevent seizures, it can help improve sleep quality and promote a more restful night.
Some sleep hygiene tips include:
- using age-appropriate sleep goals and discuss naps with the child’s neurology team if daytime sleepiness is significant
- avoiding stimulating activities, such as exercise, late in the day
- cutting out caffeine and sugary foods in the evening before bedtime
- using the bed for sleeping only
If you notice your child has daytime drowsiness, unexplained fatigue, confusion, or difficulty concentrating, these may be signs that they are having seizures overnight. It is a good idea to mention this to their healthcare provider.
Essential next steps for parents
One of the biggest concerns for parents of children with LGS is sleep safety. Although you cannot prevent nighttime seizures, there are steps you can take to feel more prepared if a seizure occurs.
Here are some steps that you, as a parent, can take:
- Keep a log of nighttime seizures, including when they occur, how long they last, any monitoring alerts, and how your child recovers afterward.
- Look around the room from your child’s bed level and remove anything that could pose a suffocation or injury risk.
- Incorporate relaxing activities, such as playing soft music or reading a book, into your child’s bedtime routine.
- Write down any questions or observations about nighttime seizures to discuss at your child’s next clinic visit.
Lennox-Gastaut Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
