General Safety Information
Patients with epilepsy have a mortality rate significantly higher than that of the general population. Seizures can sometimes be fatal for a variety of reasons. It is important to take appropriate precautions to make sure that your child with Dravet syndrome (DS) is safe. Children and adults with DS may not have the ability to sense danger and may wander off from their home or school, placing themselves at an increased risk of entering into potentially dangerous situations if not properly supervised. Most children with DS may not be able to articulate their name, address and phone number. It is important to be prepared and know your child’s abilities and limitations. Make sure to think about these potential issues ahead of time to keep your child safe.
Safety suggestions include:
- Be aware that children with DS will often elope, placing themselves in unsupervised, potentially dangerous situations.
- Take extra precautions around water, including swimming and bathing.
- Make sure that anyone caring for your child has a copy of his/her emergency protocol for seizures.
- Make sure the child has appropriate supervision at all times to prevent accidents during a seizure (i.e., head trauma, drowning, burning, choking, etc.)
- Have your child wear some type of identifying information at all times. If he or she won’t tolerate a medical ID bracelet there are multiple other options, such as necklaces, shoe tags and wearable QR codes.
- Consider using a GPS enabled tracking device or watch. Or, download an app for your child’s phone that tracks its location.
- Make sure your neighbors know your child’s special needs and your concerns for your child’s safety.
- Alert your local police and fire department of your child and their special needs, so your child is already on their radar in case of emergency. Many cities now keep a database on special needs children.
- Compile a special needs information profile (SNIP) for your child, as a resource for police or emergency responders in case of emergency. Make sure to include:
- A current photo of your child
- Identifying information, such as height, weight, hair color, birthmarks, etc.
- Pertinent medical information – including diagnosis and medications
- Emergency contact information
- Ways to calm your child down
- Major hazards nearby that your child may be attracted to – such as lakes, swimming pools, train tracks, etc.
Seizure Safety & Mortality
Mortality due to epilepsy is a significant concern for the families of those with Dravet syndrome (DS). Seizures can sometimes be fatal for a number of reasons. Some children with DS may lose their lives due to accidents, status epilepticus, or illness. Another concern for our community is SUDEP, or Sudden Unexpected Death in Epilepsy. It is defined as the, “Sudden, unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in patients with epilepsy, with or without evidence for a seizure and excluding documented status epilepticus, in which postmortem examination does not reveal a toxicologic or anatomic cause for death.” (Nashef, 1997)
While this information may be frightening for a family to read, DSF is committed to making sure that families have the knowledge they need to do what they can to prevent complications and death. There may be some things families can do to avoid situations and modify risks. DSF recommends that families of those diagnosed with Dravet syndrome should be given information about SUDEP from their physician and ways to reduce the risk at the time of diagnosis.
What is SUDEP?
Sudden unexpected death in epilepsy (SUDEP) is a fatal complication of epilepsy. It is not a cause of death, but rather a category of death. In SUDEP cases, a person with epilepsy dies unexpectedly, with no other clear cause of death found when a post-mortem examination is done.
In an attempt to standardize the definition of SUDEP, the US Food and Drug Administration (FDA) and Burroughs-Wellcome developed the following criteria for SUDEP in 1993. These criteria are now used in most SUDEP studies:
- The individual has epilepsy, which is defined as recurrent unprovoked seizures.
- The individual died unexpectedly while in a reasonable state of health.
- The death occurred suddenly (i.e. within minutes).
- The death occurred during normal and benign circumstances.
- An obvious medical cause of death could not be determined at autopsy.
- The death was not the direct result of a seizure or status epilepticus.
Notably, evidence of a recent seizure does not exclude the diagnosis of SUDEP as long as death did not occur during the seizure.
WHAT CAN I DO TO LOWER MY CHILD’S RISK OF SUDEP?
There is a lot about SUDEP that we don’t yet understand, including how to prevent it. We do know that the risk for SUDEP is higher in people with uncontrolled seizures. Until we better understand the mechanisms of SUDEP, one way to possibly lower the risk is by controlling seizures.
- Make sure that seizure medications are given consistently and at the correct doses.
- Attempt to find the best seizure control, with the fewest side effects. If medications are not working, consider other therapies such as dietary therapy or VNS (vagus nerve stimulator).
- Know your child’s seizure triggers and adjust their environment accordingly.
- Make sure that family, friends, teachers and caregivers know what to do if your child has a seizure.
- Keep your child’s emergency seizure protocol up to date and make sure those who may need it have a copy.
- Consider using a seizure alert monitor during the night, since SUDEP occurs most often during sleep.
WHAT RESEARCH IS BEING DONE?
Some researchers think that a seizure causes an irregular heart rhythm. More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.
WHERE CAN I GET MORE INFORMATION ON SUDEP?
Many websites and patient organizations are available to help answer your questions on SUDEP
WHAT CAN I DO IF I HAVE LOST MY CHILD?
Please accept our deepest condolences for you and your family if you are facing the loss of your child. We understand that this is a painful and confusing time for you. We want to offer you help and support and encourage you to contact us and we can connect you with a bereavement support group, as well as with other families who understand what you are going through. Visit our bereavement page for additional resources for support after the loss of a loved one.
Home Safety Tips
Hidden gas shut-off valves
If you have a gas stove and are concerned your child 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.
Swimming and water activities hold inherent risk for individuals prone to seizures. Individuals with seizures can drown, even if they know how to swim, so prevention is critical. A recent 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 your child. 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 your child are aware of your child’s seizures and other health concerns. Have your child 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.
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 your child 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)
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 your child while preparing dinner or working in another room in the house.
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 your child accesses a hot water faucet somewhere in your house and only runs the hot water tap.
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 your child is at risk of falling out of bed, consider bed rails, or place the child’s box spring and mattress right on the floor.
Seizure monitoring devices
A seizure monitoring device may help notify the parent or 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 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 your child’s medical provider, in determining the best option(s) for your child.
Protective helmets can help if your child’s seizures have been causing sudden drops or falls that may cause head injury. To determine the best type of helmet, speak with your health care provider and consider your child’s seizure behaviors. If your child falls forward, a helmet with a face guard is needed. If your child falls backward, the back of the head needs adequate protection. You will also want a helmet that is comfortable for your child and that allows adequate ventilation so that it does not cause your child to overheat.
Children with special needs are more at risk for choking. Try to stay one step ahead. Make sure you remove all strings from your child’s clothes, and cover Band-Aids with clothing. Do not allow your child 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 loose pieces from an older child’s game may become choking hazards. Cut food into small pieces, and make sure your child is sitting upright and supported when eating or being fed.
School Safety Tips
For many children with Dravet syndrome, elopement 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 Dravet syndrome. Children with Dravet syndrome 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 Dravet syndrome, 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 your child’s IEP. You can ask the school to work on teaching important skills like reciting parents’ names, home address, phone number, 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. Your child will have a better chance at retaining information that is repeated and reinforced from multiple sources.