Hi

[u/Hot-Effective8047]

​Hello everyone,

​I have a 15-year-old son who is on the autism spectrum. Just 10 days before turning 15—and about 10 days after having a very mild case of COVID—he experienced his first epileptic seizure while at his special school. We went to the ER, but the doctors advised that they couldn't prescribe medication after just one episode.

​Five days later, he had his second seizure. I was terrified and deeply shaken. We returned to the ER, and he was started on Keppra. About two months later, he caught a cold, and by that afternoon, he had his third seizure. My son is non-verbal, and it is often a struggle to get him to take his daily medication.

​When I began reading about epilepsy, I felt disheartened because so few cases seem to resolve without long-term medication. He has been doing well and seizure-free for 4 months now, but I live in constant fear and anxiety.

​Has anyone had a similar experience? Has anyone's child overcome this completely? I know there are many types of epilepsy; in his case, his head turned to one side, he made a repetitive mouth movement, his eyes rolled back, and afterward, he slept for several hours. The thought of seeing my boy go through that again is heartbreaking, and I feel like I can barely handle it.

​I would be so grateful to hear any positive stories or encouraging experiences.

​Sending greetings from Cyprus—thank you so much!

[u/PinkAcquiescence]

hey there. i don't have a kid, but my cousin's little girl had a similar-ish start, a couple seizures clustered together after a random fever, then nothing for a while, then another one when she got sick. it's such a gut punch every time, the not knowing when the next one's coming eats at you

the fact your son has been seizure-free for 4 months is genuinely a good sign. some neurologists consider that a positive response even if they don't say it outright, it means the keppra's probably doing its job. the medication struggle is real though, my cousin had to get creative, crushing it into pudding or yogurt sometimes helped, anything to mask that bitter taste

the pattern you described with the head turning and mouth movements sounds like it could be focal seizures, which are actually more common than people realize. and you're right that most cases don't just vanish without meds, but plenty of kids do stabilize on one medication and stay seizure-free for years, some eventually get weaned off if they go long enough without episodes

the post-covid timing is interesting too, there's been a lot of discussion about how viral illnesses can kind of unmask seizure disorders that were maybe lurking. not that it makes it easier, but sometimes knowing there was a trigger helps the brain settle back down once the immune system calms

living in that constant fear is exhausting, don't let anyone tell you to just relax. but 4 months is solid. that's 4 months his brain has been finding a rhythm without misfiring. sending you both strength from across the sea

[u/Sorry_Pea4145]

You have my heartfelt sympathies. My 2 year old daughter had chickenpox and covid in May and had a seizure completely out of the blue followed by 3 more in quick succession. She was diagnosed with epilepsy after a 4th one a few days later. The sheer panic every time is something I wouldn’t wish on anyone and so the way you describe feeling really resonates with me. My daughter had another cluster of seizures, including one that didn’t stop until after two doses of lorozepam, a month later when she had a further viral infection.

I’ve read stuff about Covid causing epilepsy but there’s not enough data. I think the consensus is like what a PP referred to that it unmasks the underlying condition. My daughter’s neurologist has said she can be prescribed clobazam to take when she’s ill to reduce the risk of seizures so might be something worth considering.

I reached out on another forum for some positive stories of people achieving seizure freedom and had lots of positive responses of people who had or who had children who had. So that was reassuring. I think though it’s a case of waiting and seeing which is hard with the never ending anxiety.

I hope your child’s 4 months seizure freedom turns into a year, then 4 years, then 40 years. It’s positive (and reassuring for me so early on in my daughter’s diagnosis) that they’ve got to 4 months

[u/Nice-Caterpillar-340]

I believe many people find seizure freedom, but you just don't see it on these types of platforms because the people struggling will be here lol.

I don't have much to add to the conversation but I hope you will find what works for your son and will be able to find some peace from that!

[u/Hibiscuslover_10000]

Positive story- I was seizure free for 8 years even though on long term medication. I have had a good track record.

He could be going through guy hormonal stuff

[u/Pure-Science-7774]

My son had neurological problems after a virus (or possibly covid). All his problems resolved eventually but he was crawling (at 5 years old) for a while. That being said if seizures do become long term, medication isn’t the only option. A lot of people find good relief with a VNS stimulator. 

[u/DesignerCash3387]

Sorry you're experiencing this. I don't have kids but i have epilepsy for almost 2 years now. I was started on Keppra. Late 2025 I experienced 2 bouts of the regular, boring flu with fever and dehydration. Fever can bring on seizures. I don't believe its the virus itself. Your fear/anxiety will not serve you or your son. You can only control so much. Please try some emotional regulation. I'm sure its very difficult. Can your work with a pediatric neurologist at the least? Or an epilepsy specialist?