Kids With Epilepsy More Likely to Have Psychological Challenges
Having a child diagnosed with a chronic illness is anxiety provoking for any family. This is especially true when a child is diagnosed with epilepsy, which is an unpredictable and potentially life-threatening disease.
While most children do well and stop having seizures, children with epilepsy are at increased risk for difficulties in mood, behavior, learning, and attention, as well as for having a poorer health-related quality of life. This is true even when kids are seizure free. Managing this condition well extends beyond stopping seizures. It includes helping children to grow and thrive in all areas of their lives.
Majority of Kids with Epilepsy Will Experience Psychological Challenges
A majority of kids and teens with epilepsy will experience some aspect of emotion, behavior, learning, or development challenges. In fact, 30-40% of kids with epilepsy also have ADHD; 15-20% have anxiety; 20% have depression; 15-30% have autism; and about half have some type of learning disorder or intellectual disability. They are also at increased risk for experiencing suicidal thoughts.
When psychological difficulties do occur, they can have a negative impact on kids and families. Children may struggle at school, with friends, or at home. Many families will say that managing the psychological aspects of epilepsy (for instance, behavior problems or learning disorders) is more stressful than managing the seizures themselves. Understanding and treating psychological difficulties is important for helping kids and families achieve their best quality of life.
Why This Happens
When kids have seizures, the electrical activity in their brains is not working properly, which can happen for different reasons. The brain is in charge of many different things. Seizures may be one symptom of abnormal activity while difficulties in mood, behavior, attention, learning and development can be another. Which difficulties a child experiences, in part, depends on where the seizures occur in the brain.
Further, the medicines that are used to treat seizures may have side effects. Sometimes, the side effects introduce new problems like slower thinking, anger issues, or fatigue. Other times they make preexisting problems worse. For for example, a child with hyperactive or impulsive tendencies can have more severe behavior problems.
Adjustment to epilepsy can also be challenging. It often disrupts child and family routines such as social activities, independence (like driving), school attendance, work schedules, and sleep habits, to name a few. Many parents describe feeling traumatized by witnessing their child’s seizures even long after diagnosis. Some children and families feel stigmatized by epilepsy. These stressors may be temporary or permanent.
Children may also develop these psychological difficulties for reasons unrelated to epilepsy, such as family history, their own biology, or life experiences.
Often, these difficulties are a combination of some or all of these factors.
In other words, kids with epilepsy are at increased risk for these challenges in part due to epilepsy or its treatment, but also because of other factors. Careful assessment by a professional with expertise in pediatric epilepsy can help identify the reasons for each child’s difficulties and develop a tailored care plan.
When Does It Happen
Unfortunately, we don’t know who will develop these symptoms and when. They can show up at any time, even before seizures start or years after an initial epilepsy diagnosis. Some children do well in early childhood and then have difficulties as a teen. Others need help early on and then do well. Some difficulties may become apparent in adulthood. What we do know is that routine screening can help us detect problems early and connect children and families to help.
What Can Be Done
The good news is that there are a number of evidence-based interventions and different types of health professionals who can help with psychological difficulties. Symptoms of depression, anxiety, ADHD, and behavior problems can all improve with appropriate treatment. Learning and development can be optimized with the right approaches matched to each child’s strengths and weaknesses.
We take a proactive approach in the Comprehensive Epilepsy Center by educating families and screening for psychological issues, starting at diagnosis. This allows us to build on child and family strengths from the beginning. If a problem is detected, we may recommend therapy, medicine, behavioral treatment, neuropsychological testing, or developmental interventions like speech and language therapy, or OT/PT. We work with families and schools to ensure that children are receiving appropriate educational support, as well as help school personnel understand epilepsy and how it may impact children in the educational setting. We also help families adjust to epilepsy and its treatment so they can focus on the other things that are important to them.
Spread Awareness and Advocate to Get the Help that You Need
As epilepsy providers, our ultimate goal is no seizures, no side effects, and good quality of life. We strive to get as close to that as we can with every child, and providing appropriate support for psychological challenges is an important part of that mission. As I often tell the kids I work with, you have epilepsy, epilepsy doesn’t have you!
Because the connection between epilepsy and psychological issues is not widely known, I would love your help in spreading awareness. Please share this post with your friends and families so that those impacted by epilepsy can get the full scope of support that they need. If you have concerns about your child in any of these areas, bring them up to your epilepsy provider or pediatrician. Additionally, it is important that parents get the care they need for themselves if they are struggling.