Epilepsy Education

Resources for families, teachers and caregivers

Generalized seizures

A generalized seizure starts on both sides of the brain at the same time. Generalized seizures will always cause an alteration/loss of consciousness in which your child will not be responsive to voice or touch. There are several different types of generalized seizures.

Absence
Tonic
Clonic
Tonic-Clonic
Myoclonic
Atonic
Epileptic Spasms
Partial Seizures

A seizure that starts in one spot of the brain is considered a partial seizure. Partial seizures may or may not cause a change in or loss of consciousness. Partial seizures can cause an “aura”, which may include feelings of nausea, headache, changes in vision or hearing, or a weird feeling. This occurs prior to outward, visible signs of a seizure. In some cases, the “aura” itself is a seizure. Partial seizures can “generalize,” meaning they can start in one spot in the brain and then spread to both sides of the brain causing a generalized seizure, such as tonic-clonic.

Epilepsy and school

It is important for your child’s teachers to know about their epilepsy because they may need to provide care for your child if they have a seizure during school. How much or how little you tell the school about your child’s health is up to you.

The school or teacher should have a rescue medication available, such as Diastat, if it has been prescribed for your child. They must know when and how to give it. School nurses are typically responsible for giving this medication. Some schools require the providers to complete forms to authorize medications to be given during school hours or provide a written seizure action plan. In order for your provider to discuss your child’s care with the school, you will be required to complete a Release of Information form.

Please note: In order to communicate directly with the school or another person/facilities a Release of Medical Records needs to be on file for each individual or facility for information to be released to. Please contact our office for any additional information.

Young people are transitioned from Children’s Mercy to adult services by the time they are 21. At this point, their medical needs are best met by an adult provider rather than by pediatric providers.

Seizure precautions for children

Climbing activities are limited to less than 10 feet off the ground (including climbing trees, rock climbing and monkey bars).
Always supervise your child when they are taking a tub bath. There is a danger of drowning if a seizure occurs while in water.
If your child no longer requires supervision for bathing, they should take a shower and leave the door unlocked. This allows the opportunity for parents to enter the room to assist if necessary.
Your child must be constantly supervised by an adult while swimming and swim with other swimmers who are strong enough to rescue them if they were to have a seizure in the water. If your child has a seizure in water, they must be evaluated in an Emergency Department, as there is always a concern that water could be inhaled into the lungs.
As with all children, your child should always wear a helmet when riding a bike, scooter, skateboard, ATV, or any other recreational vehicle.
Older children and adults supervising younger children should take reasonable precautions or restrictions with more dangerous activities, such as operating heavy machinery and playing contact sports.
If your child is old enough to cook, close supervision should be used. Microwave cooking and "non-stove cooking" is preferred.

Seizure precautions for teens

Precautions for children apply as well as the following information specific to teens.

In Kansas and Missouri, the law states that a person who has a seizure in which their alertness or level of consciousness is decreased cannot drive for 6 months after a seizure. This is a big concern for teens. It is important to keep your child informed of the law. Each state has different laws related to driving and seizures. It is imperative to review laws for the state in which you live for driving and epilepsy. Contact your child’s provider before allowing your child to drive.
Girls of child-bearing age (who have had their first period) with epilepsy are capable of getting pregnant. Birth control can be discussed with providers as fetuses exposed to antiepileptic medications are at a higher risk of having neural tube defects such as spina bifida and other defects. Some antiepileptic medications pose a higher risk than others. Medication changes may be necessary.
If an individual is or becomes pregnant, the provider will start her on 4mg of folic acid per day to help prevent potential birth defects. This is available over-the-counter at any drug store in the vitamin aisle. It is important to work with your provider and OB/GYN to protect the fetus.
Drug and alcohol use are strongly discouraged not only due to the law, but also due to the potential harm it can cause to a child with epilepsy or on antiepileptic medications. Drug and alcohol use can trigger seizures to occur. Drugs and alcohol negatively interact with antiepileptic medications, possibly causing severe decreases in alertness and ability to breathe among other dangerous health concerns.

Transitioning care for teenagers

The transition from pediatric care into the adult health care system can be a challenge for teens and their families, as well as for health care professionals.

Our team has developed a process to ensure the transition is successful for patients. We help make sure providers, patients, families, and receiving providers prepare for transitions through diligent planning, and communication. Our goal is to prepare young people with chronic health conditions to leave Children’s Mercy with the necessary skills and knowledge to advocate for themselves (or through others), maintain positive health-promoting behaviors, and the ability to utilize adult health-care services appropriately and successfully.

Tips for parents

We encourage teens to talk with any of our care providers about their concerns about transition.

Parent involvement is an important part of every young person's treatment plan. Our team works with families every step of the way. Support and encouragement are also very important for teens and young adults during and after treatment.

Encourage your teen to communicate directly with health care providers.
Teach your child how to manage their specific health care needs as early as possible.
Teens who have household chores assigned feel that they have a role in contributing to their family. They are more likely to be well employed as adults.
Help your teen to understand the implications of their health condition and treatments on their present and future health.
Encourage your teen to get organized before appointments and have their questions written down.
Have your teen make their own appointments and call for medication refills.
Discuss career and educational options.

Guardianship

Guardianship may be recommended for children with cognitive disabilities who will be unable to make decisions for themselves after 18 years of age. Guardianship is a legal process in which an individual (usually a parent or other guardian) is appointed by a court to take responsibility for the health care and finances of someone who is unable to make decisions themselves. Our social worker can discuss this process with you and provide you with the resources to answer questions and address concerns.

Making decisions for your child

The guardian makes personal decisions for the child to the extent allowed by the court judge and based on that person’s own best interest (such as where one lives or the care required). This is a big decision to make as it does reduce the legal rights of the child. If this is necessary for your child, we recommend starting the process before the child turns 18 years old. The guardian also has the power to decide care and custody matters for the patient.