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Epilepsy is a brain disorder that causes seizures.  It affects approximately 65 million people worldwide.  So how does this disorder affect the person and their family?  Well, an epileptic person can live a fairly normal life as long as some precautions are taken.  If a person is actively having seizures or the seizures aren’t well controlled, there are somethings that they can not do.  They can’t drive, or operate heavy machinery.  It’s not a good idea for an epileptic person who’s seizures are not controlled to live alone.  Since it affects the brain, epileptic people have more trouble learning and frequently epilepsy and ADHD go together.  A child who has epilepsy will likely also be diagnosed with ADHD, and treated accordingly.

There are many options, however, for epilepsy.  Medication is always the first option, and works well for many people.  There are times, though, when medication is not enough or parents don’t want to medicate.  Then there is the ketogenic (KETO) diet.  This is a special high fat, low carb diet that sometimes helps control seizures.  The restricted food choices, however make it hard to follow, so it’s not right for every child and adults usually are not put on the KETO diet.  So what are some other options?

There are also surgical options for seizures.  One surgical option is vagal nerve stimulation or VNS.  This option is a device that goes under the chest and has a wire that wraps up the vagus nerve.  It then sends an electrical pulse up the vagus nerve into the brain to “reset” the brain.  This pulse will stop or sometimes prevent seizures.  There is also a magnet that is used while having a seizure to help stop it.  It will reduce the intensity of the seizure, reduce the recovery time after a seizure or of course stop the seizure.  This is the device that they put in Lorianna and for her, it has worked well.

There is also an option called resective surgery.  This surgery involves and MRI and/or PET scan to determine where the seizures are coming from and removing a small portion of the brain where the seizures happen.  This is an option only if seizures always start in one area of the brain.  They considered this option for Lorianna but since her seizures stem from multiple parts of the brain, they decided this wasn’t the best option for her.

As you can imagine, families are also affected.  Caregivers for an epileptic person have to be aware 24/7 and ready for a seizure to happen.  In some people, seizures only happen during a certain time of day.  Children with typical Benign Rolandic Epilepsy (BRE), for example, are likely to only have seizures while falling asleep or waking up.  So BRE parents are most on edge when the child is going to sleep and waking up.  Some people only have seizures after certain triggers, so parents or caregivers learn to avoid those triggers, or be more aware of a certain trigger.  For example, if Lorianna get’s overheated, her seizure risk increases.  So if she’s in a situation where she’s likely to get hot, we take more precautions.  She has a cooling vest available and we make sure to have her magnet and rescue medication available.

Sickness is another time when the seizure risk is increased.  Any time that an epileptic person is running a fever, they are more likely to have seizures.  So parents and caregivers work on keeping the temperature down as much as possible.  In Lorianna’s case, if she has been sick, she isn’t allowed to climb, swing, ride her bike or do anything where she is likely to fall and hit her head.  We usually have this rule, up to 2 weeks after she has been sick, then she can go back to her normal routines.

It can also cause stress between family members, because parents and caregivers are constantly on edge, watching and waiting for the inevitable.  Other kids sometimes get less attention or feel left out and I’ve talked to some parents where spouses don’t take the seizures as serious.  This can cause strife in a relationship.  However, if you are aware and cautious, an epileptic person can live a fairly normal life.  You just have to learn when to be more aware and cautious and when to let the person be more themselves.  Older children and most adults can even sometimes recognize when a seizure is likely to happen and take the necessary steps to keep themselves safe.