Sending a child with epilepsy to school: what every parent should know

Getting kids back to school is hard enough, but when you factor in a child’s serious illness, it gets a whole lot tougher. I’ve shared with you before everything you need to know about sending a kid with food allergies to school, which is based on my experience with my son’s severe allergy to eggs. And today I’d like to take some time to talk about what you need to know if you’re sending a child who suffers from epilepsy to school.

If your child has had a seizure, you already know that it is one of the most frightening things to witness. As caregiver, you’ve had to learn how to care for them if a seizure occurs, how to recognize an emergency situation, and how to prevent injuries during a seizure. That’s a lot of responsibility for a person to carry, but for a parent to then hand over that responsibility to other people and hope they are able to handle an emergency if it occurs is another thing entirely.

The best antidotes I’ve found for the anxiety of entrusting your child’s medical issues to teachers and school administrators is preparation and education. Here are some practical ways to be sure all caregivers are prepared to care for your child in case of emergency and some ways to educate them on the specific needs your child may have while at school.

Be sure you know the law

If you’re feeling hesitant to speak up about your child’s medical needs, keep in mind that schools aren’t giving your child special treatment when they address medical concerns- they are required to do so by law.

Federal law (Section 504 under the Rehabilitation Act of 1973) provides protections for individuals with disabilities to ensure inclusion in any program or activity that receives federal funding or assistance. All public schools and many private schools receive federal assistance and therefore are required to uphold these protections.

Although a child with a seizure disorder may not have a visible disability, they have a chronic illness which meets the qualifications of this law. The school is required to ensure that these children are able to fully participate along with their peers in the school’s day-to-day activities and curriculum. Children that require special accommodations from the school should have what is known as a 504 plan- a written management plan explaining how the school will accommodate the child’s medical needs.

Ask your child’s school about a 504 plan, or visit the Department of Education here to learn more.

Children with epilepsy may also experience learning disabilities or behavior issues which can affect their academic aptitude. These students should have an Individual Education Plan (IEP), which provides for the child’s specific needs in order to be able to participate and succeed in the general education curriculum.

Communicate so they can accommodate

Remember that you are your child’s best advocate. You know them best and understand their needs- the challenge for you comes in effectively communicating those needs to all of the adults who will be charged with your child’s care.

Meet with each teacher or staff member who will be charged with your child’s care throughout the day. Think through their daily schedule and be sure you’re thinking of all the possibilities because a seizure can happen anywhere. How about their P.E. coach, bus driver, art teacher, extended day caregiver, lunchroom monitor? What about a plan to pass along this information when a substitute teacher is present? Everybody needs to know what your child needs and what part they play in providing care for your child.

When you speak to caregivers, you have three objectives that you must communicate clearly. You must be sure they are equipped to:

Prevent an emergency

Recognize an emergency

Respond to an emergency

While most teachers and caregivers are trained to respond to emergencies, preventing and recognizing a bad situation before it gets worse can sometimes slip through the cracks. And those issues may be more specific to your child’s individual situation, so be sure you address all three.

Prevent an emergency

Here are some things to consider as you equip the school to care for your child.

• Provide detailed health information in the 504 plan, and provide your consent for the school to speak with your pediatrician.
• Have the school nurse speak directly with your child’s physician if he or she has any questions or concerns about caring for your child.
• Make a detailed medication list and a plan for medication storage and usage if the child needs to take medication while at school.
• Get to know the school nurse and develop a pattern of regular communication.
• Be sure all medication expiration dates are checked regularly and replaced at school if needed (set an alarm in your phone or note on your calendar to remind you).
• When medication changes occur, be sure you update this change with the school nurse and on the 504 plan.
• Be sure your child gets enough sleep since lack of sleep can trigger seizures in some people.
• If your child’s seizures tend to happen in times of stress or other situations that may occur at school (i.e. child feels stressed during times of testing) ask about incorporating these issues into an IEP so the school may provide special accommodations for your child.
• Make contingency plans for special events when needed- field trips, extracurricular activities.
• Consider becoming a chaperone or school volunteer so you can be present during special events where challenges may arise.

Recognize an emergency

Below are some things to consider to help caregivers recognize a seizure:

• Have your child wear a medical identification bracelet at all times that alerts caregivers to their diagnosis of epilepsy.
• When communicating with the school nurse, the child’s teacher and other primary caregivers, be sure to give a detailed description of the types of seizures your child has, triggers that may precede them and any warning signs caregivers can look out for.
• Offer a clear definition of what constitutes an emergency for your child and when emergency medical services are needed. If you aren’t sure, ask your child’s doctor.
• Consider educating your child’s classmates about epilepsy. This will help your child feel more accepted and prevent bullying behaviors, but it may also equip other students to recognize warning signs and report them.

Respond to an emergency

• Be sure any and all caregivers know seizure first aid. Visit the Centers for Disease Control and Prevention (CDC) for quality information on seizure first aid.  
• Develop a seizure action plan in conjunction with your pediatrician. Here is an example of a seizure action plan that you can fill out with your doctor and submit to the school.
• Keep contact information and medication information current at all times. Consider providing additional contacts to the school in case you are unreachable in an emergency.
• Consult your local school district’s regulations and your child’s physician to determine whether your child needs and the law allows emergency medication to be administered by the school nurse. If so, provide the medication along with your doctor’s instructions for use to the school nurse.

Do you have any advice to offer to other parents of school-aged children with epilepsy? Let us know!