"Last week, same story", Danielle begins. In Sara’s diary, a note from her teacher: "Sara seems tired lately. Moreover, Sara hit the same cupboard several times this week. On Tuesday, during math, it took her a lot of effort to keep up with the group.”
Behaviour or absence seizure?
Feeling tired or seizure?
Notes like this only make Danielle sigh. Is Sara really tired or does she have more absence seizures? Or does she have seizures during the night and hence, wakes up tired the following day? "Sara will not tell," Danielle says. "She’ll do everything she can to be as "normal "as possible."
Fortunately nowadays Danielle better recognises the triggers for seizures . "Not eating well, going to bed a bit later than normal, breaking the daily routine, illness or skipping medication ... in these circumstances, simply slight changes in Sara’s behaviour reveal the tendency for more frequent absence seizures."
Don’t forget your medication
Eric, Steve’s father, recognises the concerns and searches for clarity. "It is often as clear as mud. Is Steve once again scattered or does he have an absence seizure? What's going on in his head?" Forgotten homework, learned the wrong test, took a swimming bag instead of the bag for gym, ... Eric is no longer surprised. "Reminders like 'don’t forget your medication’' or 'do not forget to turn off your light' have become ingrained in our evening ritual. And even then ... "
Yentl being uninterested or difficult? That’s not a remark Veerle often hears. "Nonchalant behaviour", on the other hand, is the remark returning every parent-teacher meeting. "How to respond to such a remark when your child has absence seizures? Also for us, parents, it is not always spelled out clearly,” Veerle sighs.
Veerle admits that she herself is not the most careful. She is a bit chaotic in life. Yentl might hence have that nonchalant side from her. Still, Yentl's absence seizures do not make it any easier. "As a parent it is sometimes difficult to know if Yentl is counterproductive and you should address this sort of behaviour if she’s scattered due to medication or an absence seizure".
Do you recognise this?
Do you recognise the questions Danielle, Eric and Veerle struggle with? 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 recognisable 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.
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