Lieve, Sofie’s mother, is a speech therapist. In her practice, she’s sometimes confronted with epilepsy. She’s familiar with the symptoms. Hence, when Sofie, as a two year old, cut herself out more and more, Lieve suspected something was wrong.
It is not always what you see
She recognized symptoms and feared for absence seizures. Her surroundings however, even her husband Jan, passed that suspicion on. Moreover, Lieve did not find any neurological support. The EEG did not immediately produce something tangible that confirmed Lieve’s suspicion. "Sofie is just high-sensitive," the neurologist had said. There she stood. Somewhat lost.
All changed when Sofie was 7. In the second year of primary school Lieve had an appointment with the teacher. "I'm sorry to say," the teacher began. "Sofie has absent moments. As if she is not there. Could it be that ... " The teacher apologized for her words and was careful in her statements. She also thought Sofie had epileptic seizures. Lieve gained support from this recognition. She gathered courage to return to the neurologist with something concrete now. And then it was quickly medically confirmed. Finally.
You don’t see anything
Anne’s story sounds similar. "It's an idea between your ears," she sometimes hears. "You don’t see anything about Toon?" Reactions like this give Anne the feeling that she and her husband are alone. Only if Toon has a severe seizure, she gets some response. A negative one: panic. As if, Toon is a ticking time bomb.
She's doing well lately
Bart, father of Tineke, has also already experienced that the image the outside world has, can be different: "You can’t really understand the situation until you’re in the middle of it. If not, it remains overly remote from people’s daily life." Bart understands this. At moments, it can be however very hard.
Bart remembers well Tineke's fifth birthday party. The night before he had spent entirely beside her. Tineke did have several seizures. The morning itself, she was enthusiastic: her party! Finally her day. Everything was nice and pleasant, and Tineke looked at her best. "Good to see Tineke is doing well lately,” Tineke's aunt smiled. The picture did however, look rather different that night... At moments like that, sighs: "Ah, can you expect something different from the outside world?"
Do you recognize this?
Do the stories of Lieve, Anne and Bart feel familiar? Do you have a similar story to tell? Do you want to share an experience? Whether you have (absence) epilepsy, or someone in your immediate environment: a parent, sister or brother, best friend or neighbor. Every story touching the topic "living with" absence epilepsy, and every experience, small or large, can be incredibly recognizable to others. Mail us these stories. We give them attention! No need to worry, your story can be as anonymous as you want.
Thanks to the parents who already shared their story and hence, gave substance to this blog.
Why we do what we do
1 out of 3 people with epilepsy suffer from uncontrollable seizures despite medication. We believe current digital technologies are able to create massive impact to the daily life of people with epilepsy. At Epihunter we create digital connected solutions to make epilepsy matter less at moments that matter most. Our first solution is for children with silent, difficult to notice absence seizures.
Let’s think together!
Are you a parent of a child with absence seizures? Let’s get in touch! Do you know other parents? Tell them about Epihunter. The more families we hear, the better! This way we learn about and understand their needs better so we create the right solutions for the right needs.