Be Your Own Health Care Advocate
There are few things more important to families than accessing quality health care. Because of this, you as a patient or parents must learn to advocate on behalf of their child’s health and wellness by proactively working to obtain, participate and monitor their health services. Specifically, regarding treating epilepsy, the goal is to attain the best seizure control with minimal disagreeable side effects.
Taking time to learn about epilepsy and seizure types will help make the most of doctor’s appointments. By going on-line, resources can also be obtained. A good place to start is:
- The Epilepsy Foundation of Greater Cincinnati and Columbus web site (the one that you are browsing)
When visiting the doctor, be ready with questions to ask your health care provider. These could include:
- What type of seizures do I have?
- What is the cause of my epilepsy?
- Where do my seizures originate?
- What are the different treatments for my seizures?
- What are the average costs of treatment? Are there less costly but effective medications available?
- What information can you provide me that will best help me to make a treatment decision
- What can you tell me about the medicine and its possible side effects? What side effects should I report to you?
- If I don’t notice an improvement, how long should I wait before calling you?
- Does my medication interfere with anything else I am taking? Is there anything I should avoid?
- Where can I go to find out more about my particular condition or treatment plan?
Keeping a journal or seizure diary is crucial in the treatment of epilepsy. Record:
- Your seizure activity – what time they occurred & how long they lasted
- Any interferences, such as missed dosages, illnesses, or alcohol intake
- Any triggers, such as fatigue, flashing lights, dehydration, or stress
- Side effects to include physical, emotional, cognitive, and sexual
Ask a friend or family member for their observations of you before, during, and after a seizure. If possible, video tape the seizure activity. This is an excellent tool in determining what type of seizures you have and the best medication to prescribe.
You are the center of your health care team. Do a little homework before your visit to maximize the effectiveness of your appointment. Make a list of:
- Your other health concerns
- Any prescribed medications you are taking
- Any over the counter medications, vitamins, and supplements you are taking
- Any allergies
- Anti-epileptic medications your are taking now/strength & dose
- Anti-epileptic medications you have taken in the past
Additionally, you may want to:
- Write down questions prior to the appointment. Bring a pen and paper to jot down the answers and to make notes.
- Prioritize your concerns in case there isn’t enough time to go over your entire list.
- To help sort out information, bring someone with you to the appointment.
- Ask for any written information that might be available.
- Thoroughly read all medical forms and make sure you understand everything before you sign.
After leaving your appointment, if you are confused about what the health care provider told you or you have more questions, please call! There is staff available to help you between appointments. Often a nurse may be able to clarify something you were told in the office but could not understand at the time. Hearing the same information repeated several times and perhaps by someone different may help you understand it better. If you don’t understand what the doctor tells you, ask for clarification or ask the nurse for clarification.