35 min tonic clonic
My son is now 8 but when he was 4, he had his first (known to us) seizure. It started as focal and then moving to generalized/tonic clonic. Paramedics managed to stop it when they arrived 35 mins later. It started up again in the ambulance but they managed to stop it.
He went on to have hundreds more focal seizure, some lasting up to 20 minutes. He also had ESES on his EEG.
Thankfully, the past 2 years have been better. His 4th medication (Onfi) worked pretty well.
He has ADHD and is probably about 2 years behind academic level at school. His assessment said his comprehension/vocab was about 2-3 years ahead though. I believe he is autistic but we are struggling to get a diagnosis. He’s a great kid and has lots of strengths.
I’m wondering if anyone else has had a similar experience with status seizures at this kind of age and how things have gone for you long term? Anything you wished your parents did differently?
Thank you