For parents, a diagnosis of pediatric epilepsy is initially very frightening. Parents commonly express concern about everything from the cognitive and psychological effects of having epilepsy to concerns for the social ramifications their children may experience when with their peers. Epilepsy predisposes an individual to recurrent seizures. Not all seizures are necessarily epilepsy. In other words, a seizure is an event and epilepsy is the disease primarily defined by recurrent and unprovoked seizures.
For friends and family looking to provide effective assistance to a child newly diagnosed with epilepsy, the most critical assistance they can offer is understanding. Epilepsy exists along a spectrum from mild and effectively managed with medication, to more severe and possibly life-threatening with longer-term neurological impact. The best way to be an effective ally is to become educated about epilepsy and about how it manifests in your loved one. Educate your own children about epilepsy so that they too understand more.
“Both the person with epilepsy and the people who love that person often don’t realize that the outlook for the future, the ‘prognosis,’ is full of reality-based hope. In studies where all cases of epilepsy in a community were followed long-term from right after diagnosis, about two-thirds had been seizure-free for years within a decade. Unlike many neurological conditions, epilepsy can really go away. Early treatment is key.”
– Dr. Stephen Shafer, M.D., Clinical Professor Emeritus of Neurology, Columbia University
One way to offer meaningful assistance to a family with an epileptic child is to learn how to care for that child when the child is visiting. Too often, a child with a neurological difference can be inadvertently ostracized from their peers. While one understands an initial hesitancy on the part of a caring friend or family member to assume responsibility for a child with epilepsy this reluctance can be misinterpreted, no matter how well-intended. For a child whose epilepsy is generally managed, there is no particular reason they cannot attend a birthday party or a slumber party. When a child is included in an activity, it means the world to that child, and by extension, to the parent of that child. If the person offering has taken the time to learn about epilepsy and demonstrates the knowledge necessary to provide care, well, that is priceless.
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Demonstrated knowledge is reflected in things like expressing that the strobe light element at the indoor playground will not be turned on during the party. Or, telling a parent that a slumber party will have a strictly enforced bedtime. Expressions like these indicate that you understand common seizure triggers (strobe lights, sleep disruptions) and that you are willing, able, and eager to accommodate their child. Offer to dispense their medication and check in on whatever schedule makes the parent most comfortable. Become familiar with seizure first aid. Know that any water play, bath or pool, must be constantly monitored by a supervising adult.
Many children and families report that learning to be transparent about their epilepsy normalizes it. It enables people to ask questions and goes a long way to removing the stigma that can be associated with pediatric neurological differences.
Mostly, though, the best ally is an informed ally. Talk about it, keep asking what helps, and, as is the case with most long-term prognoses, keep showing up.
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