Understanding your child's epilepsy diagnosis

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Find out how epilepsy is diagnosed and what questions to ask to make sure you understand the diagnosis.

Key points

  • An epilepsy diagnosis can include the type(s) of seizures, whether the seizure has a known cause and whether the epilepsy fits into a specific epilepsy syndrome.
  • It is common to feel overwhelmed as you learn about your child's diagnosis. Keep track of what you learn and make note of any questions you may want to ask.
  • To make sure you understand the diagnosis, ask how the condition may affect your child physically, mentally, socially and emotionally. Ask about recommended treatments and how best to help your child in each area.
  • If your health-care team cannot answer all your questions, research your child's condition on reputable web sites and reach out to other parents of children with epilepsy.

If your child has signs or symptoms that make your child's doctor suspect your child has epilepsy, they will do a thorough neurological assessment and order some diagnostic tests.

Sometimes an epilepsy diagnosis can be made right away. Other times it takes a while to figure out what is happening with your child, especially if a child is very young or has more than one type of seizure. Once the doctor knows what is happening with your child, they will sit down with you and explain the diagnosis and treatment.

The diagnosis may include:

  • the type(s) of seizures your child is having
  • the cause of the seizures — this may include abnormalities in the brain's structure, genetic causes and other disorders known to be associated with seizures
  • a specific epilepsy syndrome — this means that your child's clinical history, exam and tests are similar to that of a group of other children

Making sure you understand the diagnosis

It may be difficult to explain everything about epilepsy in one visit. Depending on the situation, it may take more than one session to understand the details. Receiving a diagnosis for your child also comes with different feelings, which can make it more difficult to absorb the information in one visit. For this reason, you may want to take notes and write down questions as you think of them. You may also consider bringing a relative or friend to take notes for you and to be another 'set of ears'.

The doctor will then present a treatment plan. The treatment plan will likely include medication as a first step. In some cases, an operation may be needed. The doctor will explain and recommend the best choice for treatment for your child’s situation.

Questions you may want to ask

To make sure you understand the diagnosis fully, consider asking the doctor the following questions:

  • What is the condition? (Be sure to write down the formal name.)
  • How is it affecting my child physically? Are there any safety measures that should be put into place?
  • How is it affecting my child mentally? Will this diagnosis impact my child's learning and school work?
  • How is it affecting my child socially and emotionally?
  • Where do we go from here? What is the plan? When should I contact a doctor? When should I go to the Emergency Room?
  • What kind of treatment will my child need, and when?
  • Will you or another specialist provide the treatment?
  • Who else will be involved in my child’s care?
  • What can I do to help my child in the meantime?
  • What does the future hold?

Many conditions are quite complicated and need to be explained a few times.

Write down the information as the doctor discusses it with you. Having it written down means you can reflect on it later, once you have had time to think about it.

Health-care professionals are there to help

If English is not your first language, the services of an interpreter can be arranged.

It is your right to be informed, and it is very important that you are able to understand your child’s condition so you can make decisions about treatment. The clinic nurse is also a good contact and can help answer your questions.

How to find more information

You can also learn more about the condition by doing your own research online, at the library, by gathering brochures and books from support organizations or by talking to people whose children have experienced something similar. Many people find that knowing more helps them cope with what is happening.

To guide you in finding out what you already know about epilepsy, and what you need to learn more about, check out these resources:

Last updated: March 17th 2021