Epilepsy Association of Utah

Newly Diagnosed

I have epilepsy, now what?

You’ve just received your official diagnosis: You have Epilepsy.

Your heart sinks. You are stunned. You may cry but mostly, you feel isolated. Suddenly, you also feel cut off from the rest of the world and yet, that everyone ‘knows’ and will treat you differently. The first thing you need to know is that you are not alone, new research indicates that over 9 million people in the United States also live with Epilepsy and a majority of them manage their seizures through medication, diet and/or exercise. You are not your Epilepsy. Epilepsy is what you have; it is not who you are.

It is true – some people will treat you differently. The DMV definitely will. At first, your doctor and close friends may not know what to do. Yet, as you learn more about your diagnosis, you will soon be able to reassure your friends and loved ones you are still the same person. You just have a newly diagnosed condition in which they will learn to be comfortable around.

Much like someone recently diagnosed with Diabetes, there are things you now are acutely aware of; which will now be engrained into your daily life. Accepting your diagnosis makes the difference in your approach to living with it and treating it.

  • Find a neurologist that has experience in epilepsy. To locate an epilepsy center in the Utah registered with the National Association of Epilepsy Centers, go to www.naec-epilepsy.org. It will be helpful if you can record your seizure activity with a video recorder to show the neurologist. It is often hard to describe seizure types, an epileptologist can most accurately determine what type of seizure your child is having is through a video EEG in an epilepsy monitoring unit (EMU). Seizure typing is important for choosing anti-epileptic drug therapy. Having a video of your seizures may help your neurologist if you do not have seizure activity while in the EMU. It will also be helpful to keep a journal of seizure activity, medication changes, illness, triggers, etc. You may choose to write this information in a notebook or utilize online seizure tracking software through www.seizuretracker.com or www.myepilepsydiary.com.
  • Advocate to maximize seizure control while balancing medication side effects – this is hard in drug resistant or intractable epilepsy. Small seizures are still seizures and affect the ability to remember and learn. Loved ones are often afraid to send an individual with Epilepsy to school or other activities because of fear of having a seizure. While these fears are real potentials, studies have proven that exposing individuals to “enriched environments” where they can learn from peers and socialized is better for the intellectual and social development than keeping them in isolation. Discuss ways to improve interaction while remaining safe in case of seizures with local schools, doctors, work or friends.
  • If your child is having seizures and is three or older, discuss utilizing the public school system for neuropsychological testing as a baseline and for monitoring so that if a learning problem arises, your child can have an Individualized Education Plan (IEP) to enhance his learning and optimize his education.
  • Have a plan for seizure emergencies if needed for prolonged seizures including a prescription for a medication that may stop seizure at home (known as a rescue medication) such as rectal diazepam (Diastat®). It is helpful to have your neurologist type the emergency seizure management plan including when to give the rescue medication, when to call an ambulance, and any intravenous anti-epileptic drugs that should be avoided at the emergency room if known and print it on office or hospital stationary and sign it.
  • Make sure all caregivers understand what to do in an emergency. It is often hard for parents who have children with Epilepsy to leave their child in someone else’s care because of fear. It is important to find respite care and take care of yourselves as caregivers. Discuss options for respite care with a hospital social worker, an insurance case manager, your pediatrician, or your neurologist. Some individuals may be sensitive to heat, even modest temperature elevations. Make sure everyone knows to keep the individual cool and not overdressed. Order a cooling vest for individuals with heat sensitivity may be an option. Polarized, blue tinted sunglasses may prevent photosensitivity induced seizures, especially on car rides.
  • Do not leave the individual unattended in the bathroom or swimming pool in case seizure occurs. Your neurologist, physical therapist, or teacher may recommend a protective helmet depending on the seizure severity, to prevent head injuries from falls that may occur during seizures. A couple of websites that sell protective seizure helmets arewww.danmarproducts.com and www.plument.com. If you have atonic “head drop” seizures or other seizure types in which you hit your head on a table, you may wish to purchase a protective mat designed for these seizure by a mother of a son with epilepsy at www.seizuresupport.com. Don’t forget about your loved ones. Having individuals with a chronic illness or having a chronic illness is hard on family relationships. Family counselors are trained to help families deal with children with chronic illness. Programs are available across Utah for siblings and families. Including the Epilepsy Association of Utah’s support groups.