Safety Is a constant Concern for those with lGS
Children and adults with LGS have frequent seizures and are at high risk of injury. Further, they may not have the ability to sense danger, may wander off from their home or school, and may place themselves in potentially dangerous situations if not properly supervised. Make sure to think about potential safety issues ahead of time to keep the person with LGS safe.
Be prepared for emergencies
Not all seizures are a medical emergency but some are. The family should speak with the neurologist to discuss a plan for seizure emergencies.
Seizure emergency considerations
- Call emergency services if the person with LGS is not breathing or has sustained a major injury.
- Generalized tonic-clonic seizures (previously called “grand mal” seizures) that last longer than five minutes are a medical emergency. Call emergency services and/or use at-home rescue medication to stop the seizure.
- Repeated seizures without any response to touch and/or sound between seizures may be a medical emergency. Call emergency services and/or use at-home rescue medication to stop the seizure.
- No response to painful stimuli after seizures, especially if accompanied by facial twitching, mouth movement, or eye fluttering, may indicate non-convulsive status epilepticus. This may be a medical emergency. Call emergency services and/or use at-home rescue medication to stop the seizure.
- Vomiting during a seizure, followed by unconsciousness or not breathing properly may be a medical emergency. Call emergency services.
When to call the Neurologist
Consider calling the Neurologist if:
- Neurological issues arise after the seizure such as weakness on one side of the body.
- Mental decline persists (the person with LGS is not acting in his or her usual way).
- An unexpected seizure or a seizure outside the person with LGS’ normal pattern occurs.
Seizure home care advice
These tips will help you care for a person with LGS when they have a seizure at home.
- Keep calm. You cannot stop a seizure.
- Do not try to hold the person with LGS or stop their movements.
- Stay with them until they are fully awake.
- Remove harmful objects near them or stand in front of dangerous areas such as stairways. If needed, gently move them away from dangerous areas.
- Know that they may not hear you or be aware of what he or she is doing.
- Write down how long the seizure lasts and what they did. After they rest, if possible ask what they remember about the seizure.
Educate others about seizure safety and Seizure Emergencies
It is important to educate others about seizure safety in case you are not around to respond. It is important for everyone with LGS to have a Seizure Action Plan that is shared with every caregiver.
Learn more about Seizure Action Plans and the Seizure Action Plan Coalition here.
Seizure safety at home and away
Seizures can occur anywhere that a person with LGS goes. It’s important to plan ahead of time.
- Protective helmets can help if seizures have been causing sudden drops or falls that may cause a head injury. To determine the best type of helmet, speak with a health care provider and consider the specific seizure behaviors. If a person with LGS often falls forward, a helmet with a faceguard is needed. If they fall backward, the back of the head needs adequate protection. You will also want a helmet that is comfortable and that allows adequate ventilation so that it does not cause overheating.
Seizure monitoring devices
- A seizure monitoring device may help notify the caregiver when a seizure occurs. The seizure alert devices available today are motion detection devices. They are available as mattress devices, watch devices, and camera devices. However, seizures without big movements (such as absence or partial/focal seizures) are not detected by these devices. No seizure device has been developed that is designed to prevent seizures or SUDEP (Sudden Unexpected Death in Epilepsy). More scientific evidence is needed to prove how well seizure alert devices work. The devices currently available have been studied in a systematic fashion, but we don’t know how well they work in real-life settings and they do not have FDA approval. Information on available devices can be found on the Danny Did Foundation website.
Some families also rely on pulse oximeters or seizure dogs for surveillance at night. It is important to discuss the pros and cons of all of these options with a medical provider, in determining the best option(s) for the person with LGS.
- Consider using video monitors that will allow you to live-stream video and audio footage via the internet and smartphones. These cameras give peace of mind and flexibility, allowing you to keep an eye on the person with LGS while preparing dinner or working in another room in the house.
Gates blocking off stairs
- Gates mounted at the top and bottom of staircases can help protect children with gait issues or who are not able to safely navigate stairs on their own.
Dressers and large pieces of furniture
- Always bolt large pieces of furniture to the wall to avoid potential disasters. Mounting kits are available at most hardware stores and only take a few moments to install.
- If a person with LGS is at risk of falling out of bed, consider bed rails, or place the child’s box spring and mattress right on the floor.
- Consider if co-sleeping (sharing a room or bed to sleep) with your LGS loved one is right for you and your family. Asking other families how they think about this option can often be helpful.
School or daycare safety information
- Always inform other caregivers that the person with LGS has seizures.
- Create a Seizure Action Plan and share it with others. Update this plan yearly or as needed.
- Seizure Tracker – School Preparedness
Water safety for children with seizures
Those with LGS can drown during a seizure that occurs in water, even when bathing. These tips will help you keep them safe in situations that involve water.
- Use one-on-one adult supervision for swimming and baths.
- Use flotation devices when possible.
- Have them take showers instead of baths if possible.
- If seizures are frequent, buy a plastic shower chair and a hand-held water head.
- Have a no-locked-bathroom-door policy.
- Swimming and water activities hold an inherent risk for individuals prone to seizures. Individuals with seizures can drown, even if they know how to swim, so prevention is critical. An article published in Neurology, the medical journal of the American Academy of Neurology, states that people with epilepsy have a 15 to 19 times greater risk of drowning than do people in the general population. The article also states that this risk was highest in people who have both epilepsy and a learning disability.
Speak with your health care team to find out what risks pertain to a person with LGS . Children with frequent seizures or seizures that impair consciousness need 1-to-1 supervision while in the water. The individual supervising the child should be aware of the child’s emergency protocol, should a seizure occur. Make sure that swimming instructors or lifeguards who are working with a person with LGS are aware of their seizures and other health concerns. Have them wear a lifejacket or personal floatation device when they are in or near open bodies of water or during water activities. Inflatable toys or water wings are not considered flotation safety devices.
Height/high places safety or those with LGS
Seizures while high off the ground could increase the risk for injury. Consider these items before allowing a person with LGS to be in a high place.
- Take special care when going up and down stairs.
- Fall-proof the person with LGS’ environment. Put in carpets, cover sharp corners, use a stair gate, if necessary, and consider having them wear a protective helmet in some circumstances.
Other Home Safety Tips
Hidden gas shut-off valves
If you have a gas stove and are concerned a person with LGS might start playing with the controls or attempt to cook on his or her own, you may want to have a shut-off valve professionally installed. It can be hidden or placed in a locked cabinet, allowing you to place it in an off position to assure the gas burners cannot be ignited or toxic gas vapors are unknowingly released into the house.
Appliances with special safety features
Many appliance manufacturers now offer safety features in their products such as hidden on and off switch panels or buttons that need to be pressed and held in order for the appliance to work. Ask appliance salespeople for guidance, or research online to find out what safety features are available.
Placing metal objects into electrical outlets may result in severe injury or death. There are many devices on the market to help prevent or slow access to outlets.
Storing knives and sharp objects
Consider establishing a special drawer in your kitchen with a lock installed on it where you can keep knives and other sharp or dangerous kitchen tools (such as peelers, graters, corkscrews, etc.)
Lock cabinets containing dangerous items
Place keyed locks on cabinets that store medicine or other hazardous items to keep them safe.
Use code locks for dangerous rooms
Electronic locks sold for exterior doors are useful for interior use in homes where you want to prohibit access to certain rooms when a child could endanger themselves (such as the basement, bathroom, or rooms where tools or hazardous items are stored)
Hot water tank settings
Water from a hot water tank set on its highest setting can cause severe burns. Be sure that your tank is set nowhere near this temperature, in the event that a person with LGS accesses a hot water faucet somewhere in your house and only runs the hot water tap.
Children with special needs are more at risk for choking. Try to stay one step ahead. Make sure you remove all strings from a person with LGS’ clothes and cover Band-Aids with clothing. Do not allow them to play with latex balloons. They may bite it and choke on the pieces. Clean the floor carefully and check the area for potential choking hazards and consider items that might not be obvious. Food that has been dropped or lose pieces from an older child’s game may become choking hazards. Cut food into small pieces, and make sure they are sitting upright and supported when eating or being fed.
School Safety Tips
For many children with Lennox-Gastaut Syndrome, elopement (wandering off) is a big safety issue. Elopement is the tendency for an individual to try to leave the safety of a responsible person’s care or a safe area, which can result in potential harm or injury. This might include running off from adults at school or in the community, leaving the classroom without permission, or leaving the house when the family is not looking. This behavior is considered common and short-lived in toddlers, but it may persist or re-emerge in children and adults with LGS. Children with LGS have challenges with social and communication skills and safety awareness. This makes wandering a potentially dangerous behavior. Parents should discuss school security, as well as consider developing an elopement plan as part of their child’s individualized education plan (IEP). For most children with LGS, a 1:1 aide is strongly suggested in the classroom and bus or transportation route to monitor for seizures as well as elopement issues in order to keep the child safe.
You can also request to add safety to the learning goals in their IEP. You can ask the school to work on teaching important skills like reciting parents’ names, home addresses, phone numbers, crossing the street, etc. The school may devise strategies such as role-playing or behavioral modeling to help to enforce these skills. Make sure to work on safety both at home and school. A person with LGS will have a better chance at retaining information that is repeated and reinforced from multiple sources.
The information here is not intended to provide diagnosis, treatment, or medical advice and should not be considered a substitute for advice from a healthcare professional. Content provided is for informational purposes only. LGS Foundation is not responsible for actions taken based on the information included on this webpage. Please consult with a physician or other healthcare professional regarding any medical or health-related diagnosis or treatment options.