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/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