Always that fear

Posted by Hogne Ulla on Jul 5, 2018 5:01:54 PM

Absence epilepsy affects everyday life on every level. Though many of us try to meet it with optimism, there is always that fear and anxiety. You make the most of every day, but never without precautions and a solid portion of routines. Below you can read how some parents approach the uncertainty that comes with absence seizures. 

You cannot be careful enough

Mobile phone at your fingertips

For Sigrid's son, Casper, the diagnosis came 4 years ago: absence epilepsy. Casper was three years old at that time. Sigrid's life has since been dominated by unpredictability of seizures. "My mobile phone is always at my fingertips in case Casper has a seizure and I’m not there. When I go out with Casper, I always check whether I have his emergency medication with me, to stop the seizures if needed,” Sigrid testifies. "If I would spend some time for myself or go out with friends, my husband usually stays at home. Anyhow, I will never be far away, neither stay away long." Which sort of precautions do you take?

Babysit Grandma

It also influences the social life of many parents. "In the beginning, I no longer had a social life," says Kris, Stef's dad. "You do not trust anyone with your child. You want to be there yourself. Moreover, no one dared to take care of Stef for a long time due to the constant threat of seizures. And to be honest," Kris testifies, "I’m not sure whether I would dare it if Stef was not my son.” Fortunately Kris' parents live close by. Little by little, they learned how to deal with Stef's silent absence seizures. If Stef has a day off at school and Kris or his wife can’t stay home, grandma usually takes care of him. "Grandma, or another family member. In any case, someone who’s familiar with Stef and his condition," Kris continues. The same applies to your family?

Don’t go to the bakery alone

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Especially the fact that Lander lacks a sense of space is a concern to his mother, Sandra. She experiences "traffic" as one of the most difficult situations in everyday life. ”Lander is ten years old now. You can’t always take him by the hand, like a toddler. But indeed, if he would suddenly have a seizure, you have no control at all.” Also Lander's grandparents fear to go out with Lander. They are very aware of the dangers that go with it. Indeed, it’s merely a month since Lander’s grandma could just grab him by the collar while Lander - struck by a seizure - crossed a busy intersection. "From that moment on, Lander must walk close to her. Closer than his younger brother and nephews. For Lander, that feels terrible. It is a bit embarrassing even. Moreover, unlike many classmates, Lander is not allowed to go to the bakery alone. Also that’s hard for him," Sandra shares. Do you share her concern?

 

Do you recognize this?

How do you experience the continuous threat of absence seizures? How do you deal with similar concerns? Which sort of precautions do you take? Do you have a story like the one of Sigrid, Kris or Sandra, or do you want to share another 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.

Big 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 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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Topics: impact on family, future, unsteady agenda, life questions, unpredictable, uncertainty, absence