A Nurse's Perspective
Erin Conway, Certified Pediatric Nurse Practitioner
In the digital age of social media, we are constantly overwhelmed with updated statuses, tweets and pictures detailing the day to day life of others who lead seemingly perfect, sunny, blissful, satisfying lives. What we often fail to realize is you don’t see the hard days that may occur between these photos and updates. However, those are the days that count and help shape our individuality, push our beliefs and help us to make a difference in our world today. The birth of a child is normally one of the happy photos; the start of a lifetime of love, happiness and possibility. Life can throw us curveballs and the unexpected may occur at anytime. Our reactions to these curveballs can empower and educate us while imprinting a lasting, positive impact on our children, our friends or perhaps to a perfect stranger who may be experiencing similar adversity.
A child having a seizure or being diagnosed with epilepsy is a major life event that profoundly impacts a family dynamic. The future becomes an uncertainty; as a parent you may ask yourself “Will my child be normal?”, “Can I let him play outside with his friends?”, and “What happens if she has another seizure?” Fear is a natural response, often a fear of the unknown. It is important to obtain information, speak with your child’s doctors. When you know and understand the diagnosis, it is often less frightening then what you have initially imagined. Most children with epilepsy lead normal lives with minor restrictions on social and physical activities. The goal is to individualize the child’s daily activities to maximize their overall social, academic and medical wellbeing.
An ongoing primary stressor is public perception. “What will the parents of his friends think?”, “Will they continue to let their child come over for play dates?” Unfortunately, seizures and epilepsy can still carry a stigma that a person is “not normal.” This is often because again there is a “fear of the unknown.” This is where our reaction to the curveball can make a difference. Honesty and communication about epilepsy can help eliminate these fears and allow for understanding. By being open about epilepsy, one is negating any misconceptions that may be perceived by other children, parents, and educators amongst others. Through educating other individuals, we are helping to eliminate the negative associated with seizures.
Children with epilepsy should build friendships and participate in social and physical activities. Telling other children and their parents’ about seizures is difficult, but important. The child’s age should guide how to explain seizures to their classmates and friends. For younger children, it is important to explain that you cannot catch epilepsy as you would catch a cold. Lee, the Rabbit with Epilepsy by Deborah Moss and Is Epilepsy Contagious? by Julie Devinsky are two books geared towards younger children that explain what it means to have epilepsy. Older children should be allowed the option to discuss the seizures with their friends directly. The type of seizures, frequency, the affect on the child, and what to do in case a seizure were to occur should be discussed with the parents of the child’s friend. The children and the parents should be given the opportunity to ask questions.
It is the goal that through the power of honest communication, any remaining stigmas associated with epilepsy can be eliminated. As healthcare providers, we are here to diagnosis, treat, but also act as a guide to help you make the best choices for your child. We want to see your child happy, living their life to full potential. The path may get slightly redirected, but in the end all the more meaningful.