Depending on your child's type of epilepsy, you may want to consider putting safeguards in your home in case of falls or seizures. Outside the home, you can help by encouraging your child to avoid epilepsy triggers and teaching others about your child's condition and how to manage seizures.
For the young child, making a home safe can include things like carpeting on the floor, getting rid of furniture with sharp corners or glass tops, and gates at the top of stairs. In case of frequent and sudden seizures you may consider a special helmet to protect their head.
For the older child, you can consider safeguards such as handrails on staircases and cushioning or eliminating sharp edges in the rooms. More importantly, you can teach them about potential dangers, such as stairs, being near a stove and carrying hot drinks, and how to do things safely.
Most importantly, your child or adolescent should always take a shower and avoid baths if possible. If a child requires bathing in a tub, they should be supervised and never left on their own, no matter how old they are. Shower chairs are helpful if there is a risk of your child falling with a seizure. It is important, while ensuring safety, to respect your adolescent’s need for privacy while taking a shower. Negotiate with your teen about how to manage concerns about their safety while respecting their privacy. For example, it might be practical to place a baby "monitor" in the bathroom during the shower. If there is a risk of your child having a seizure while taking a shower, they should never lock the door.
The epilepsy care team can advise you and your child on other aspects of safeguarding your home, as well as resources to assess home safety and safeguards.
How will I know if my child has a seizure at night?
Some forms of epilepsy involve nocturnal (night-time) seizures. Most of the time, seizures at night are no more dangerous than seizures during the day, and most children do not have any problems as a result of seizures that occur during the night.
As with any seizure, it is possible for a child to be injured during a nocturnal seizure. Take common-sense precautions: for instance, make sure there are no sharp or potentially dangerous objects near the bed. If a child regularly has convulsive seizures at night, it is also a good idea to remove bedding that could cause problems with breathing, such as large pillows. If your child has all or most of their seizures at night, discuss the timing of their medication with their doctor.
Some parents sleep with their children so they will know if their child has a seizure at night. This is often reassuring for parents in the short term. In the long term both you and your child will eventually feel the need for some privacy. Other options are:
- Use a baby monitor.
- Attach a noise device, such as a bell, to your younger child or infant at night. It will alert you to any unusual movements.
- Place the child’s bed next to a wall beside your room. This will help you to hear any unusual movement or activity.
- In the morning, look for signs that your child may have had a seizure, such as unusual fatigue or bedwetting.
Seizure monitor
Seizure monitoring systems are specially designed to sound an alarm if a person has a seizure.
The alarm can sound remotely in your room, signalling that your child is having a seizure. Seizure monitors may check for one or more of the following:
- movement spasms, using a spasm detector, with motion sensors connected to the mattress
- vocal sounds, using a receiver and speaker, similar to a baby "monitor"
- unusual breathing patterns or pauses in breathing, using a sensor connected to the mattress
- drooling, vomiting, or urinating, using sensors on the pillow or a moisture sensitive sheet
- wandering, using pressure sensitive floor pads or a pressure sensitive mattress.
It is possible to combine several sensors in order to "monitor" many possible symptoms.
Note that no sensor system is perfect; there is always the potential for "false positives," where the alarm sounds but the child is not having a seizure, or "false negatives," where the child is having a seizure but the alarm does not sound. Most parents of children with epilepsy do not find it necessary to use seizure monitors.
You can get more information about seizure monitors from epilepsy associations such as Epilepsy Ontario.
Ensuring your child's safety when you are not around
A key factor in ensuring your child’s safety in situations where you will not be in attendance is to inform a responsible person about your child’s epilepsy and how to deal with a seizure.
You may also want to create a checklist that is specific to your child, based on the information from this site, including important phone numbers and information relevant to your own situation. Be sure to inform other people where your child will be spending time about your child's epilepsy and how to handle a seizure. This may include caregivers, family, friends, staff or volunteers at extracurricular activities and, in particular, staff at your child's school.
School safety for a child with epilepsy
When informing staff at your child’s school, give a checklist to each of the key school personnel. It is important to make sure that school personnel understand the information and how to use it if there is an emergency. Significant people to inform at the school may include your child’s school bus driver, their teachers, the school principal, the school nurse, their coaches, and any other supervisors, instructors or caregivers with whom they may spend time.
Depending on your child's type of epilepsy, you can talk to your school administrator or principal about additional safeguards in case of falls or seizures, such as handrails on staircases and cushioning or eliminating sharp edges in the classroom.
In some cases, a child may be assigned an assistant who accompanies them throughout the day to ensure safety. In this situation, a discussion about ensuring safety while allowing for an appropriate level of independence will be important to address. This discussion should include your child as much as they are able to contribute.
Depending on the frequency of your child’s seizures and the chance of dirtying their clothes, you may wish to keep a change of clothes at school.
Seizure triggers to avoid
Triggers are internal or external environmental factors that may cause a seizure in your child. Some triggers can be easily managed if you are aware of them, for example by taking medication according to schedule and getting adequate sleep. Over time you will discover what specific things tend to trigger seizures in your child. Learn to avoid these triggers and teach your child to avoid them as well.
Examples of some common triggers are:
- missing medication doses or suddenly stopping medication
- lack of sleep, which can trigger or worsen seizures.
- caffeine
- alcohol
- drugs, including street drugs or over-the-counter drugs
- in rare instances, flashing lights, such as strobe lights in a dance club or patterns on a TV or computer screen
- fevers, colds or infections
- short, rapid breathing (hyperventilation)
For those triggers that cannot be avoided, you can try to compensate with extra care in other ways. For example, when your child has a cold, you can try to ensure they get lots of sleep and nutritious foods.
Some triggers may become more of an issue as your child gets older. Your teenager may wish to experiment with alcohol or drugs, or stay up all night studying for exams or socializing with friends. Explaining triggers and their dangers may not have a significant effect. Teens will often see the benefit of sleep and avoiding alcohol if they have a seizure. Encouraging a healthy lifestyle while your child is still young may ensure greater compliance as the child becomes older.
MedicalAlert bracelets or tags
To help safeguard your child’s health, and for your own peace of mind, you may want to consider getting a medical alert bracelet or ID tag for your child. This is a very simple and reasonably priced device which is usually worn around the wrist.
These are ID tags that children and adults wear all the time that identify a serious medical condition. Paramedics and other health care professionals are trained to look for medical alert bracelets and read the information engraved on the back. This is especially important for older children who regularly spend time away from you, such as at school, at camp or on a trip. The bracelet ensures that should they have seizures, persons treating them will know that they have epilepsy and take it into account.
Some companies, such as MedicAlert, provide an additional service where health care professionals can call a 24-hour emergency hotline to access the person’s confidential medical record. There is usually a one-time setup charge and an annual membership fee associated with this service.
Medic Alert also supports the “No Child Without” program, which provides free medical alert ID tags to schoolchildren aged four to 13 years. You must register for the program through your child’s school.