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Hello! Hoping to find more families with older children who have absence seizures. I have lots of questions abou how to foster my daughter's independence (she's 9) within the limits of keeping her safe.
Hi @Pagea. Welcome to Contact a Family's Community. We hope we can make you feel at home, and find others like you. Any questions do drop us a private message and we'll be happy to help.
Take care and welcome again
Alex (Contact a Family)
Hi, my daughter ages 8 has just had a diagnosis- have same questions as you.
Hi and welcome to the community @hanabilal.
Hello! We've learned a lot since I wrote this originally back in July. Namely that we just have to take it one day at a time and not make too many time scales to R having more independence. Her seizures aren't gone even with ethosuximide and so things like walking to school or going out alone are out of the question for now. She is being fairly cool about it all and we've still gone through with our promise of her having a phone which she was going to get when she started walking to school on her own. It does really suck, though.
Hanabilal I'd love to know more about your experiences - we don't know anyone else who has a child with absences and it feels a bit lonely!
My son, who is 8, was diagnosed at 3 with atonic seizures and absence seizures. He has been medicated to control the atonic seizures and is mostly free from the absences, although he still does have a few. It is hard to try and let them be independent, I've struggled alot with it. Just taking baby steps, he does get annoyed time to time as sometimes feels he can't do the same as his friends eg, go to the park at the bottom of the street alone or walk to school with his friends by himself. He understands most of the time, tried a few different things, going to the park with him but staying out the way with his little sister so he still feels independent but I'm also there if need be. It does feel lonely sometimes and sometimes other adults don't understand.
Hi @Eliza4, welcome to the community.