Epilepsy is characterized by seizures, which are periods of hyperactivity in the brain causing convulsions, involuntary and jerking movements, and other symptoms. Over the long term, it can lead to brain cell (neuron) death and damage.
Occurring in about 0.6% of children, this condition can be particularly challenging for families, and parents play a particularly important role in helping manage the condition.
Given how unpredictable seizure attacks can be, parents need to be proactive and practical. The better you’re able to discuss epilepsy with your child, the better off the entire family will be.
Epilepsy in Children
Talking about seizures with your child is something you’ll likely need to do multiple times as they grow up. Understanding what they’re going through, as well as the basics of the condition itself, is essential for establishing a firm grounding for empathy and communication.
At its core, epilepsy is a neurological disorder characterized by repeated seizure attacks, brought on by irregular electrical activity in the brain. In many cases, onset in the child is preceded by tingling, strange odors, fear or anxiety, or a sensation of déjà vu.
- Absence (petit mal) seizures cause rapid blinking and make children stare off into space.
- Generalized tonic-clonic (grand mal) seizures are much more severe, leading to crying out, loss of consciousness, falls, and jerky movements.
- Partial (focal) seizures occur in one region of the brain, with symptoms varying based on which part is affected. Symptoms range from twitching and sensory changes to confusion, brain fog, and an inability to answer questions.
Generally, seizures last less than five minutes; if your child’s episode is longer, call 911 and get emergency help.
There’s no doubt that seizures can be jarring and scary for children. In fact, 30% to 50% of children with epilepsy experience additional mental health, behavioral, and developmental issues, including:3
- Attention deficit hyperactive disorder (ADHD)
- Learning challenges
- Autism spectrum disorder
As a parent, understanding how these and other co-occurring conditions are impacting your child will be key to helping them cope. Don’t be afraid to enlist support from your child’s pediatrician, psychiatrist, or any other health professionals, as well as teachers or coaches in this task. They can help you develop strategies for effectively discussing seizures.
Talking to Younger Children
What’s important to remember when discussing seizures with your child is that you should be creating a dialogue. As much as your job is to be an authority and to relay important information, you also have to be an open and sympathetic ear. It can be a tough balance.
So what are some keys to talking about seizures with your child? The goal is to express that children with epilepsy lead full, wonderful lives and that they’re no different than their friends, family, and other kids in school.
It’s also to remind your child that doctors, teachers, and most importantly, you, are there for them, responsive and listening.4
According to the American Academy of Pediatrics, here’s what you should keep in mind:
- Use positive language: While you shouldn’t minimize the seriousness of the condition, it’s a good idea to convey optimism. Be matter-of-fact and down-to-earth as you talk about what seizures are and how they’re treated. For instance, you might frame refractory (medically resistant) seizures as “doctors still seeking the right medicine.”
- Keep it simple: Use language that’s appropriate for your child’s age, employing easy-to-understand terms as you explain what seizures are and what having epilepsy means. A seizure might be described as “too much electricity in the brain,” for instance.
- Be responsive: Urge your child to express how they’re feeling and to share what they’re scared of. Ask them if they have any questions, and do your best to respond to them. If you don’t know an answer, reassure them that you’ll find out and make sure to do so.
- Tell stories: Especially for younger children, it can be helpful to explain epilepsy and seizures using stories with visual content. Among many resources, the Epilepsy Foundation has a free, downloadable publication that does exactly that.
- Have information ready: It’s good to have material on hand to help answer questions, such as brochures, content from websites, and YouTube videos.
- Talk about medications: The more your child understands not only their condition, but their medications, the better off they’ll be. Make sure they understand dosages and side effects, as well as when to call for help.
Talking to Teens About Seizures
As your child grows up with epilepsy, you’ll want to make sure to keep having conversations about the condition, how they’re feeling, and how medications are working. On top of the usual challenges associated with it, preteens and teens with epilepsy may face additional issues during puberty.
Conversations with your teen should address:
- Dating: It’s always a good idea to talk with your child about dating. If they have epilepsy, they may have additional questions and concerns, especially about how best to address their condition in the context of a relationship.
- Drugs, alcohol, and sex education: Alongside other negative aspects, using drugs or alcohol can be particularly dangerous for teens with epilepsy. Make sure your child understands how these can affect them and interact with their medications. It’s also good to talk about the dangers of sexually transmitted infections or the consequences of sex.
- Emotional check-ins: Puberty can be a particularly turbulent time for teenagers with epilepsy, as the condition can affect self-worth, heighten self-consciousness, and raise concerns about physical appearance and social life. Try to be open and receptive to their concerns.
- Avoid quick judgments: To establish trust, be careful about judging too harshly or quickly; a teen whose parents react excessively will be less likely to share their feelings. When they act out or break the rules, be forgiving and try to focus on lessons that can be learned.
- Consistent management: You’ll also want to make sure your teen or pre-teen understands that medications may need to change as a result of puberty. In addition, they’ll have to understand what safety precautions they can take, as well as what to do in an emergency.
- Independence: It can be difficult to balance your child’s desire for that independence with your desire for their safety. Epileptic teens without other health issues are usually able to lead independent lives, so be practical and realistic about what they can and can’t do. While it can be tempting to be overprotective, this can actually increase stigmatization and affect socialization.
As difficult as it can be to talk about seizures with children, it’s important and necessary work. The more informed your child is about epilepsy, the more comfortable they are sharing, and the more you’re on the same page, the better the outlook will be. With good communication, you and your child will be better able to face the challenges—and successes—associated with living with this condition.
Taking on epilepsy takes more than one person. Care for this condition involves a team, and parents play a vital part in it. This critical support is built off of an ability to manage difficult conversations and to listen—it means talking, listening, and building trust.
SOURCE: By Mark Gurarie at VeryWellHealth.com