November is Epilepsy Awareness Month. For some families, the impact of epilepsy isn’t confined to a month out of the year, but creates challenges each and every day, from the health issues it presents to social, emotional and behavioral challenges.
For children with epilepsy and their parents, these challenges can be distressing at home and at school. We want to spread awareness about epilepsy, what it is and how it affects children and their families, along with firsthand insights from a mom with a daughter who has epilepsy.
What is Epilepsy?
Epilepsy is characterized by recurrent, spontaneous seizures. It’s the fourth most common brain disorder after migraines, strokes and Alzheimer’s disease.
Genetics can play a role in the development of epilepsy. It can also be caused by stroke, head trauma, infectious diseases of the brain or brain abnormalities.
Since some epilepsies are age-related, it’s possible to outgrow them. And, up to 70% of people with epilepsy can become seizure-free with treatment or medication.
Epilepsy affects all ages, but it’s most likely to be diagnosed in childhood or during your senior years.
A Day in the Life with Childhood Epilepsy
We had the honor of hearing from a mother of a 9-year-old child with epilepsy who shared their family’s experience. We asked her, “what’s a day in the life like to care for your daughter with epilepsy?” Here’s what she had to say:
On a good day, Sabrina wakes up and gets ready for school. We remind her to take her seizure medication, which she sometimes forgets to take on her own. She goes to school, and I pray not to hear from the school that she has a seizure while there. She returns from school. At bedtime, she takes her seizure medicine and she is off to sleep at a specific time each night. Sleep can be a seizure trigger.
On a bad day, when she is sick, we are constantly on edge. Catching a common cold or getting a fever can trigger seizures, so when she’s sick, we watch her like a hawk. When most parents might not decide to treat a fever of 99.9 or 100, we are giving our daughter medicine to get her temperature down as soon as possible. We are watching her for any signs of an impending seizure, pushing her to stay hydrated, asking her over and over how she’s feeling.
When we go out with our daughter, we must bring her emergency medication in the event she has a seizure when we are out. It’s a small constant reminder that we must be prepared for anything. If we go out during the evening, we make sure to also carry her evening medication, just in case we’re out when she’s supposed to take it. She must take her medication at the same time every day, or we risk her having a breakthrough seizure.
We always plan ahead when we’re going to be outside in the heat for a while (heat is a trigger), or are traveling. We pack cooling towels, water and extra medications. It’s a constant reminder that a seizure can sneak up on us at any moment for any reason.
Children with Epilepsy
Emotional and Behavioral Challenges
Emotional and behavioral challenges are common in children with epilepsy. Some of the more common symptoms include increased anxiety, depression, irritability, hyperactivity, aggression and even rage.
Some children might act out suddenly with little or no provocation. Many parents describe changes in their child’s mood accompanied by increased aggression, such as hitting other children. This is very distressing for the parents, the child who is suffering and all those involved.
Seizures can affect how children feel in a number of ways. They can affect areas of the brain involved with feelings. Maybe they feel anxious and sad about having seizures? No one likes seizures and many parents report their children feeling nervous or scared about them.
Parents can check in with their children, asking how they're feeling. Depression and anxiety are not things to take lightly. They can be treated successfully.
Effects of Epilepsy on the Whole Family
We asked Sabrina’s mom about the physical and emotional effects epilepsy has on her daughter, as well as what it’s like for her and her husband.
The physical effects having epilepsy has on Sabrina aren't obvious to most. Due to her medication, she has slight hand tremors. She can’t engage in many physical sports due to the risk of her getting hit in the head or having a seizure.
We are lucky in that I don't think she has shown emotional effects yet. She knows she has epilepsy, but doesn't really let it bring her down. We have always tried to make sure she didn't feel any less of a person because of her condition. I do believe that it may begin to take a toll on her when she’s older. Maybe trying to find a job, wanting to drive or in relationships.
For my husband and me, there are definitely emotional effects of her having epilepsy. I’ve been through different stages over the years: anger, frustration, anxiety and acceptance. I questioned what I did wrong during my pregnancy. I made myself think that I must have done something to cause this. I wouldn’t sleep at night listening to her breathe on the monitor, watching her sleep praying she wouldn’t have a seizure.
Anxiety is always present, which takes a toll on you both physically and emotionally. There’s a constant fear that her next seizure can be more severe than the last. The next seizure may cause significant damage, may undo all the progress she has made or the next one may take her life.
Parents of children with epilepsy describe many challenges that their children experience, particularly at school. Teachers and administrators may have a basic understanding of seizures and related safety concerns, but are less informed about how seizures and the child’s learning, emotional, behavioral and social adjustment are related. Learning or behavioral issues may not be clearly understood or aren’t seen as connected to the epilepsy, leading to inappropriate classroom management techniques, grade placement or inadequate support.
Participation in physical activities and socializing with friends is so important to childhood development. Yet parents of children with epilepsy frequently express that seizures, and the associated challenges, often exclude their children from participation in many academic, recreational and social experiences. Concern for their child’s safety may lead to restriction of normal school activities. Isolation from these important social learning experiences leads to lower self-esteem and possibly making children feel less valuable.
Parents are encouraged to seek extra support to enable their child’s participation in school activities and to have fun with other children. Feeling a sense of belonging is important for their emotional well-being, as well as their social and physical health.
Sabrina’s mom adds a heartfelt plea from parents of children facing conditions not seen by the eye:
When people meet Sabrina, they often tell me that "she doesn't look like she has a disability, or she doesn't look like she has anything wrong with her.” There isn't a specific look for a person with epilepsy. Be kind to others because everyone you meet is fighting a battle you know nothing about. They may be an epilepsy warrior.
Epilepsy Symptoms in Children
Here are some common symptoms to look for if you have a child or know one with epilepsy:
- Clusters of "jackknife" movements by babies who are sitting down
- Clusters of grabbing movements with both arms in babies lying on their backs
- Fear or anger
- Frequent complaints that things look, sound, taste, smell or feel "funny"
- Repeated, unusual movements such as head nodding or rapid blinking
- Short attention blackouts, dazed behavior, memory gaps, mumbling or no response
- Sudden falls, frequent stumbling or unusual clumsiness
- Sudden stomach pain followed by confusion and sleepiness
- Unusual sleepiness and irritability when woken up
Sabrina’s mom offered these insights about symptom onset from personal experience caring for her daughter:
Symptoms of seizure onset can be different for everyone. For my daughter, she may experience a headache and/or a stomachache prior to having a seizure. These are usually so bad it brings her to tears and she’s unable to eat or do anything but lay down. Her eyes may appear droopy or her skin may become pale, especially if she has been ill. Sometimes, there can be no warning.
A seizure is an electrical disruption of brain activity. Specific events or circumstances — called triggers — can increase risk of a seizure. Learning to recognize them can help you support your child in lessening and even avoiding seizures. Some seizure triggers for children include:
- Bright lights
- Hormone changes
- Lack of sleep
- Missed medication
- Physical or emotional stress
Reach Out for Support
Sabrina’s mom emphasized the importance of reaching out to others if you have a child with epilepsy, and the help that comes from it:
Don't be afraid to reach out to others. I always have friends that ask to share my contact information to others who have a newly diagnosed child, but sadly I usually don't hear from them. I remember being a new parent with a child diagnosed with a life-altering condition, and I felt like my husband and I were alone in this. You aren't. There have been so many things I’ve learned and continue to learn about Sabrina's condition just in speaking with other parents that had I not reached out, I would never have known.
Thank you to this courageous mom for taking the time to share their family’s epilepsy story. We wish Sabrina continued healing on her journey.
Level IV Comprehensive Epilepsy Program
Our world-class team of epileptologists, neuropsychologists, neurosurgeons and nurses have one focus: kids deserve to feel whole and be seizure-free.
AdventHealth for Children is a destination hospital for pediatric epilepsy treatment, with one of the largest and most comprehensive programs in the nation. We support your family with the most advanced diagnostics, technologies and seizure treatments available.
Our Level IV Comprehensive Epilepsy Program has the most advanced pediatric epilepsy treatments, a seizure monitoring unit, non-surgical brain mapping and more. We treat your whole child — in body, mind and spirit — to find effective, long-lasting, non-surgical and surgical epilepsy treatments to greatly reduce or even eliminate seizures. To learn more and schedule an appointment, visit our website.