Anyone living with Absence Seizures

[pancakes22]

My DS has been diagnosed with epilepsy having absence seizures. He's only 2 and we are trying to find the right doseage of medication but I just can't stop my mind wandering and worrying about what this is going to mean for him for the future. Is there anyone who has this diagnosis who can tell me if they were happy growing up and if it mattered to them or if anything in particular helped them or I don't even know! I suppose because I can't ask him about it I'm just curious to know what it's like to experience it and what he's going through. thank you in advance

My cousin used to have them, he grew out of them, which I think is common with this kind of epilepsy. He always said he didn’t really notice them. Hope that helps!

Oh and his seizures happened more when he was tired.

My best friends little girl had these, she grew out of them at aged 4

That's wonderful to know they grew out of them. I keep seeing things where they turn into convulsions during puberty so I'm already worrying about 10+ years time but will instead try and focus on the thought of him growing out of it instead.

Good to know your cousin wasn't aware too. I often wonder what it must feel like or if he feels disoriented or confused. Just hope he's going to be okay.

The vast, vast majority of children do grow out of them - I think it’s 8 out of 10 grow out of them by the age of 10

I have them (as well as tonic clonic) They can be worse than the tonic clonic ones sometimes and can knock me out for days, especially if it’s a long one. My husband knows just to guide me to the sofa and sit me down. I usually have some sweets and coke afterwards to recover. Get a seizure diary to monitor patterns. The epilepsy society do them for free.

@HotChocolateLover that's really interesting to hear from you and I'm
Sorry that you go through that. Have you had it your whole life? I have been panicking about my DS turning into tonic seizures as I thought that would be worse so I'm surprised it's actually the other way round. That's really useful to know what helps you though with sitting somewhere comfy and getting you some sugar. I just want to help him as much as I can and it's hard not having any idea what he's going through so thank you for sharing your experience x

@pancakes22 I wasn’t diagnosed with epilepsy until I had my first tonic clonic at 18. However, looking back, I suspect I’d been having absence seizures throughout my teens and possibly younger as I would sometimes feel as though I was in a fishbowl and then just snap out of it. However, being younger, I thought it was just something everyone did 😢 I’ll be brutally honest, it’s not a great condition and I wouldn’t wish it on my worst enemy. It’s so misunderstood and I’ve faced so much discrimination, especially careerwise. I hope your son grows out of it before it comes to it 💕

@pancakes22 my youngest brother had petit mal absences throughout his childhood and had tegretol medication but grew out of them in puberty, unfortunately as a young man in his early twenties he had several full tonic clinic seizures, he worked out these had been triggered by drinking alcohol and not getting enough sleep. He is now in his late thirties and has been basically teetotal since he worked out the link and has been fit free for over a decade and otherwise completely healthy and happy. Hope your son soon grows out of them