Let’s Talk About Epilepsy

Jodi Shenal's avatar

by Jodi Shenal
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Being a mother to a child with multiple disabilities, I find one of the scariest and most difficult aspects of our life to be Epilepsy.

Epilepsy is a neurological disorder associated with abnormal electrical activity in the brain. 

It can be caused by a host of factors: genetic anomalies, infections, structural changes in the brain, head injuries, strokes or tumors. 

Chances are, you know someone with this disorder, as 1 in 26 people in the US will develop it at some point in their lifetime. 

In our daughter’s case, even though we knew she was predisposed to it due to a genetic condition and a brain malformation, her diagnosis at 11 months old brought sorrow and anguish. 

With November being Epilepsy Awareness Month, I wanted to share a glimpse into the world of loving someone with Epilepsy. 

Seizures can strike at any time; they can strike anywhere.  We’ve witnessed our child go nearly two years without a seizure, thinking she had outgrown them, and then we’ve seen them return with a vengeance. 

There are seizure triggers that we’re aware of (full moons, fever, lack of sleep, anxiety) and then there are seizures that occur with no rhyme or reason. 

There is no statement more accurate than “You never know how long 30 seconds is until you witness someone you love having a seizure.” 

With every type of seizure she endures, we are devastatingly frightened; petrified by her shallow breathing and dusky coloring.  I’ve seen every muscle in her little body convulse in a terrifying rhythm. 

No matter how many episodes you watch your child endure, you never get used to it; it NEVER becomes easy. 

Time stops.  My heart breaks.  I shake with fear.  I am angry. I pray for the life to come back into my child.  

This roller coaster of emotions whirls inside me, all the while I have to remember to time the episode, administer her oxygen, keep her on her side and to remember to breathe myself. 

I am lucky to have a husband and a son who keep a calm, level head during these times of distress; as we are thrust into Team Seizure mode.

You learn that you can never completely let your guard down when Epilepsy is part of your life. 

You never know when you may have to call for an Ambulance and administer rescue meds that drastically slow down and potentially stop breathing.

You never know when a cluster of seizures may happen, sending you to the hospital.  You learn to function after sleepless nights and you attain the ability to sleep with one eye always open. 

We find it challenging to leave our daughter in anyone else’s care (except her wonderful teachers and loving grandparents.)  Epilepsy limits our family’s freedom, and steals “normal” family experiences from us.

Despite the fear that we live with every day because our precious daughter has Epilepsy, we also live with HOPE. 

We’ve seen much success in her seizure control with adding natural CBD oil to her treatment plan. 

So many of the prescription anti-epileptic medications can cause severe personality changes, rage, lethargy, kidney damage, and more. 

We have a Neurologist that is extremely supportive; she is on board with our displeasure of pumping multiple medications into our child that have many known and horrible side effects. 

Together, we work as a team to treat her seizures as effectively as possible, while striving to give her the best quality of life.  Epilepsy isn’t a topic that most people are comfortable talking about. 

As it’s a part of our life, and greatly affects the life of our daughter, we will continue to talk about it and hopefully impart knowledge and awareness along the way.

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