Supporting a Child with Epilepsy at Home, at School, and in the Community

Epilepsy is often misunderstood, and many stereotypes still exist. Your child may be embarrassed or feel the stigma of the diagnosis, especially from friends, teachers, or family members.

As Dr. Wirrell explains, “Oftentimes there's a lot of stigma [with epilepsy] which arises from fear. People don't really understand what epilepsy is and it scares them to think, ‘My friend might have a seizure in front of me,’ or, ‘The person I'm babysitting may have a seizure in front of me.’ It's really important that people have those open and honest discussions, and that people really feel empowered on how to manage seizures and what to do if somebody has a seizure.” She also touches on inclusion, telling us that, “It’s really important for persons with epilepsy to be part of class trips, sports activities — things like that. They can't be living in a bubble.”

Talking to your child's peers

The best way to address misunderstandings is through education. Dr. Pelangka stresses the importance of educating peers. Depending on the age of your child, you as the parent, or another professional, might want to come into the classroom and explain more about your child’s epilepsy. If your child is older, you should include them in this process and see if that’s something they’d like to do. One option would be to “co-present” with your child to their classroom when they are a bit older and able to share. But if your child is a teen, it’s very likely they won’t want a parent or professional to speak to their class.

Make sure to include your child as much as possible in this process. Some children may value their privacy or feel embarrassed and not want their entire class to know about their epilepsy, but they might be open to sharing with one or two friends. If your child explains their epilepsy in a matter-of-fact way, others are not likely to view it as something that is bad or shameful. Peers will more likely view it the way your child presents their diagnosis. This can help raise your child’s own self-esteem.

Dr. Pelangka says, “I always advocate for psychoeducation. Educate peers on what to expect. If their peer has a seizure, this is what to expect, this is how to react, and just know it’s a thing that happens but it doesn’t change who the student is.” Instead of the seizure being a frightening experience, it could be transformed into an empowering experience for both your child and their peers. Peers will be able to feel helpful, and your child can feel more comforted and accepted.

Helping children understand their disability

For children with intellectual or developmental disabilities who might be confused about their seizures and not understand what’s happening, Dr. Wirrell suggests talking to them at their level as well as getting the help of epilepsy nurses who have experience in talking to children with IDD about epilepsy. You can also watch cartoons or read books about epilepsy. Here are some animations created by the International Bureau for Epilepsy and the International League Against Epilepsy that feature Campi, a cute little seahorse who happens to have epilepsy. Their series of educational stories show Campi at school, visiting the doctor, participating in first aid, and more.

Water safety

Dr. Wirrell explains that it is important for a child with epilepsy to have supervision around water. If a child has a seizure in water, they are at risk of drowning. This is even true for the bath. Dr. Wirrell states, “It is much safer for children with epilepsy to take showers.” Notice that Dr. Wirrell does not say to avoid jumping in a pool on a hot day; she simply wants parents and caregivers to be extra careful around water.

The decision to drive

If your teen has a seizure while driving, it can put them and others at risk. Whether your teen can drive is not your decision or their physician’s. Every state has laws for driving with epilepsy to ensure the safety of everyone. If your teen has a seizure, they may have to wait six months or more to drive again. If your teen is seizure-free for a certain period of time, then they can drive — and, more importantly, it’s a sign that your child’s epilepsy is controlled effectively.

Also, it’s important your teen understands that if they have a breakthrough seizure, they need to self-report, and their epilepsy medication may need to change. Epilepsy is something your child may have to manage their whole life, so it’s important for young adults to take responsibility and manage their own care as much as they are able.

Independence

Teens usually want to be independent, especially in preparation for college, driving, moving out, and independent living. However, parents may fear their teen with epilepsy being left alone. Every child is different, so it is important to talk with your teen’s care team to find solutions that give your teen independence while still being safe. It’s also important to talk to your teen about your concerns and have open communication so they feel heard, seen, and able to advocate for themselves.

How a seizure impacts a child’s learning will determine whether they qualify for an IEP or a 504 plan. For example, some seizures can cause a regression in skills and speech and may require more support, which is available through an IEP. While epilepsy is not specifically listed as a stand-alone disability that qualifies students for special education under IDEA, if the team finds that epilepsy is significantly impacting a child’s access to education, the child may be eligible for an IEP under the OHI (Other Health Impairment) category. However, if the epilepsy isn’t adversely affecting a child’s educational performance, but they do still need some accommodations to be successful or safe at school, the student can qualify for a 504 plan.

Dr. Pelangka explains this more:

What are some common IEP or 504 accommodations and services for epilepsy?

Accommodations and services are always student-specific. When it comes to services, Dr. Pelangka says, “A student with epilepsy can receive speech, OT, or PT if their educational needs warrant those services. They can be added to a 504 plan as a standalone service but they are also related services within an IEP. I have clients with epilepsy who also experience intellectual disability as a byproduct of their seizure disorder, and thus require more extensive layers of support than others who only have seizure disorder and currently have their seizures controlled by way of medication. If speech or language is not impacted, this wouldn’t be added as a service. It’s all dependent on the needs of that student. If motor is impacted, either gross [ability to navigate/access campus] or fine [ability to write, manipulate materials/clothing/feeding utensils, etc.], those may be services added to the IEP."

Safety

For accommodations, Dr. Pelangka says that a very common accommodation is clear seating — the area surrounding the child is clear such that if they fall, they will not injure themselves. If the child has a seizure and falls out of their seat, the child needs to be safe. The school will want to make sure the child is far away from a table or something else that may injure them.

When developing the IEP or 504 plan, a child’s specific triggers must be addressed. If there are known triggers (e.g., flashing lights, heat), they should all be well documented within an Individualized Health Plan within the IEP or 504 plan, and staff should be made aware. For example, Dr. Pelangka tells us that if heat can trigger a seizure and the child lives in a desert climate, an accommodation might be that the student stays inside for PE or recess when the temperature rises above a certain number. Dr. Pelangka suggests including the student in choosing alternative activities to help the student feel more empowered.

Inclusion

When it comes to inclusion, many children with epilepsy can successfully participate in class with their gen ed peers. “I would really question that program if they are reluctant to allow a student to be in gen ed settings solely on the basis of their seizure disorder,” Dr. Pelangka says. However, she adds that some parents may feel hesitant or fearful of their child participating safely with peers due to the possibility that their child may have a seizure.

Parents may ask for 1:1 support to ensure a trained adult is always with the student in the event they have a seizure, especially when the child is younger. Dr. Pelangka explains that this support may be more challenging to keep as students age. How much can the school afford to pay for an aide “just in case?”

Also, as your child ages, they may want more independence — having a 1:1 aide can sometimes limit the chances to develop relationships with peers. This is a challenging balance, but shouldn't stand in the way of your child being included in a gen ed setting. “I don’t see any reason to think inclusion wouldn’t be successful solely on the basis of a seizure disorder,” she adds. She tells us that the biggest pieces for inclusion are education and accommodations (if necessary) that can be written into the IEP. It’s important to document any observable precursors to a seizure so adults — and even peers — can know what to look for. This way, onlookers can help ensure your child is safe if or when they do seize. “I think inclusion is definitely attainable,” she says. “It's just a matter of collaborating with all the specialists and really educating the peers.”

School seizure plan

If your child has epilepsy, it’s important that they have a seizure plan at school. The school nurse will create the seizure plan for your child, typically in an Individualized Health Plan (IHP). Dr. Pelangka explains that a health plan must be clear because sometimes students' seizures aren't as noticeable. For example, the student could just look like they're staring off.

Education is important to the success of the school health plan. Dr. Pelangka explains that the health care plan should include training of all staff, including campus supervisors, librarians, staff that are working within the classroom, aides and substitute aides, and therapists or specialists if the child has several or related services, such as the speech pathologist, etc. “They all need to be very clearly trained on what to do in the event a seizure occurs and exactly what that protocol is. They should all have a copy and have seen and been trained on the healthcare plan… I think that's the most important piece.”

The IHP also needs to be available in every environment where the child spends time - classroom, cafeteria, playground, etc. In many schools, only the classroom teacher may be aware of medical conditions, but your child could be at a special, at recess, or with a specialist in a small group. An IHP is a great way to make sure the school staff is informed about your concerns and that plans are in place to address the unique health needs of your child. This could include how medication will be administered, what and when your child should self-report, how their health will be monitored, and who the go-to person will be.

For sample seizure plans, check out this one from the Epilepsy Foundation.

Lisa Concoff Kronbeck, Undivided’s Public Benefits Specialist, wants parents to know that “epilepsy may qualify your child for public benefits,” such as Medi-Cal, Regional Center, IHSS, and California Children’s Services (CCS). However, for some of these benefits, your child will also need to have significant functional limitations in specific developmental areas such as self-care and economic self-sufficiency.

• Epilepsy is a qualifying diagnosis for Regional Center. If your child is under the age of three and diagnosed with or at the risk of being diagnosed with epilepsy, Regional Center can provide early intervention services. To be eligible for Regional Center services after age three, “a person must have a disability that begins before the individual’s 18th birthday that is expected to continue indefinitely and present a substantial disability.” A substantial disability — in this case, epilepsy — is defined as “a major impairment of cognitive and/or social functioning” and must include limitations in the three or more of these life areas: self-care, mobility, learning, self-direction, communication, capacity for independent living, and economic self-sufficiency.

• Epilepsy may also be a qualifying diagnosis for CCS under the category of “diseases of the nervous system” which produce physical disability that significantly impair daily function. Epilepsy may be eligible when “it is 1) a component of or secondary to a CCS-eligible condition, or 2) of unknown origin and requires: over four changes in dosage or medication types in the year of diagnosis; 3) requires two or more antiepileptic drugs to control seizures; or 4) frequent (at least monthly) medical office visits to monitor status and periodic blood tests; or 5) there is a history of status epilepticus within the past 12 months.” Some services you would receive include laboratory, pharmacy, neuropsychological and psychosocial services, EEGs, and surgery. Read more about how epilepsy can qualify for CCS here.

• Kronbeck adds that parents of teens with epilepsy can also apply to the Department of Rehabilitation — which provides vocational rehabilitation services to people with physical and mental disabilities — for assistance related to school and access to paratransit.

For a deeper dive into public benefits for children with medical complexity, including Medi-Cal, SSI, IHSS, CCS, Medi-Cal waivers, in-home nursing, and more, read our article Supporting Medically Complex Kids at Home.

An epilepsy diagnosis may feel scary for families. Dr. Pelangka encourages seeing a therapist or even just a trusted adult if your child is feeling anxious or overwhelmed about their epilepsy. This is very important because anxiety and stress can be triggers for seizures. A child can be so stressed about the possibility of having a seizure that it can trigger a seizure and become a self-feeding cycle.

Dr. Gallentine shares some uplifting reasons to stay optimistic after receiving an epilepsy diagnosis, including therapies, medication, and resources to support individuals with epilepsy. Dr. Gallentine explains more:

We also have the following parent tips from the Undivided community:

Home and community support

• Bedrails or specially designed safety beds can literally be a lifesaver by keeping your child in bed as opposed to falling onto the floor and hitting their head during a seizure.
• If traveling, make sure you carry extra medication in your carry-on.
• Seizure cameras like SAMi cameras can be expensive, but they are movement sensitive (you can adjust settings). You can set an alarm to alert you if your child is having a seizure.
• Train your kid’s best friends on what to do if your child should have a seizure when mom/dad isn’t around. Train the parents also. Many people still think shoving something in a person’s mouth when they’re having a seizure is necessary.

School support

• Keep a spare outfit at the nurse’s office in school; sometimes a tonic clonic seizure can result in a bathroom incident, and your child will need something to change into.
• Have your child’s seizure plan at every classroom or place they spend time at school. Also have a copy at home. Talk to friends’ parents if your child is going to have playdates at their home or out in the community with them. Let them know what to do.
• If your child has nocturnal seizures, they will be tired during the day. If this is a regular occurrence, consider IEP accommodations that help support their health. For example, perhaps they can lie down in the nurse’s office when needed.

Diagnosis and treatment support

• Keep a journal of your child’s symptoms, lifestyle changes, moods, etc. Epilepsy medications can have a lot of side effects, but some of them aren’t so obvious or just medical. For example, extreme mood swings can hurt your child’s schoolwork or sleep habits even if the meds otherwise work.
• Depending on how your child’s epilepsy presents, diagnosis can be tough. It’s not always going to be caught during an EEG. Not all seizures look alike, which can mean delayed diagnosis for many individuals. If you can get a video of an episode, you can show the neurologist.
• Look into bed mats and watches that can alert someone if an individual is having a seizure, has abnormal oxygen levels, etc.
• Explore seizure alert dogs.

Medication support

• There are different types of rescue medications with various ways to administer: rectal, mouth spray, dissolving tablets — talk about options with your doctor, considering potential administration at school and in public.
• Carry emergency meds with you, even if your child has never needed them.
• Involve your child in the process. Show them what their meds should look like and explain what they do, how they’re administered, etc., so there are no surprises. (And in the event a school nurse has to administer something, the child can notice if the meds don’t look like their own.)

Be sure to read our article Epilepsy 101 for a deeper dive into epilepsy in kids, including diagnosis and treatment.