First Steps for Families of a Newly Diagnosed Child

If your child has just been diagnosed with epilepsy, the first days can be emotionally intense. The steps below help you know what to focus on during this period. You do not need to take care of everything in the first week; this is a marathon, not a sprint.

Within the First Week

• Clarify the medication plan. If a medication has been started, learn its name, dose, times, and possible side effects in writing. Ask what to do if a dose is missed.
• Learn the emergency plan. When is a seizure considered an emergency, when should emergency services be called, and if there is a rescue medication, how is it used — learn these and write them down on a piece of paper.
• Start a seizure diary. Recording seizures from the very first day will be very valuable later on (see Appendix A).
• Choose a reliable source. For information, rely on this book and the sources your physician recommends; do not get swept up by every piece of information online.

Within the First Month

• Inform the school. Fill out and submit the school emergency action plan (Appendix B).
• Teach first aid to those close to you. Everyone who cares for the child (spouse, grandparents, caregiver) should know what to do during a seizure.
• Collect your questions. Write down every question that comes to mind in a notebook and take it to the follow-up appointment.
• Give yourself time too. It takes time to process this news. Do not suppress your feelings; ask for support if you need it.

Remind yourself

It is normal not to know every answer right now. Over time, you will understand both your child's condition and this new way of life much better.

The only step you need to take today: give the medications regularly, record the seizures, and keep loving your child until the next appointment.