Zora had her first seizure when she was only six months old. Her dad, away on a trip, got an urgent call from the neighbor. Zora and her mother had just been rushed to the hospital in an ambulance—and no one knew exactly why.
When someone has a seizure, it’s terrifying. The worry, the rush to help, the need to ensure that person is safe and well. That’s when good care is a lifeline. And when the danger has passed, the search for answers begins. One thought is foremost in every caregiver’s mind: “How can we help prevent these from happening?” The answer, of course, is twofold. First, follow your physician’s instructions exactly and share any concerns or questions you may have about what your child is experiencing. But also—and crucially—it’s important to understand what is causing the seizures in the first place to find the most appropriate treatment.
The human cost of seizures
Every year in the U.S., about 3.4 million people experience seizures.[i] These seizures can take a huge toll on patients and their families. Physically, each time someone has a seizure it can wreak havoc across body systems.[ii] And psychologically, the fear of the next seizure can make it hard for people to enjoy everyday life. Further, uncontrolled seizures have been linked to many long-term issues, including developmental disabilities, learning and behavioral disorders, and more.
Searching for the cause
The reasons for these devastating events can be as different as the person themselves and getting to the bottom of the causes can be like trying to solve a very complicated puzzle. There are several different types of seizure disorders, and each can present with a different combination of seizure types. Epilepsy causes seizures; seizures may also be caused by triggers such as illness or fever, heat, flashing lights, strong emotions, or overexertion. Sometimes, seizures have no known cause. It’s important to know that for some people experiencing seizures, getting a specific diagnosis for an underlying condition can lead to a different, more appropriate treatment approach.
Some of the primary challenges in treating seizures are getting them under control and balancing any side effects of treatment. For many, medication successfully controls seizures. But for people living with certain rare and severe conditions, the challenges can be more complex. Difficult-to-treat or drug-resistant seizures may be signs of serious conditions such as Lennox-Gastaut syndrome (LGS), Dravet syndrome, or tuberous sclerosis complex (TSC). For people with these conditions, it can often take years of uncontrolled seizures before getting an accurate diagnosis and, therefore, more tailored treatments plans and other disease-specific support.
Zora’s road to diagnosis
This was the case for Zora. After her first seizure at six months, the neurologist told Zora’s parents that she might grow out of them. But the seizures continued, and, over time, Zora was prescribed a series of anti-epileptic drugs (AEDs). Many of these AEDs caused side effects and she continued to have seizures. Eventually, Zora’s parents decided to get a second opinion and they took Zora to get a genetic test. It was then—about five years after her first seizure—that Zora got a specific diagnosis of Dravet syndrome.
Zora’s parents learned that some of the medications she had been taking can be dangerous for children with Dravet, and that they may cause even more seizures. Zora’s treatment plan was changed as a result of her diagnosis, and her family was able to access several resources specific to her condition. They also joined a patient community through the Dravet Syndrome Foundation, where they could learn from others who understand what they are going through.
For those experiencing seizures, or living with someone who does, it’s important to learn what may be causing the seizures. Seeking a specific diagnosis and requesting a genetic test may uncover an underlying condition. And there’s always the option to seek a second opinion from a specialist or epileptologist, like Zora’s parents did.
The sooner the cause of the seizures is known, the better, because this knowledge can change the approach to treatment. Also, having a specific diagnosis may open new doors and opportunities. New treatment options may be possible. Access to foundations and grants or financial assistance may be available. And patients and their families can enjoy the benefits of connecting with a supportive community of others living with the same diagnosis.
A new website, SeizuresAreSigns.com, is now available for families who are navigating uncontrolled seizures. This new site provides a seizure assessment tool, educational information, stories from families who have found a diagnosis, resources, links to advocacy groups, and more.
Living with seizures isn’t easy. The uncertainty of not knowing when one will occur—and trying to be prepared for it—can be difficult and very scary. Finding out why they are occurring and asking for a genetic test may help in moving forward more confidently. When it comes to seizures, knowledge is power—getting a specific diagnosis may help by unlocking new possibilities for care, connection, and treatment.