19/02/2026
Lukas had his second grand-mal seizure this week. If you seen my other post, this has a lot of the same info but with more details.
We were traveling home from CHKD in Norfolk where he sees GI & Pain + Palliative care- he had appointments on Monday and Tuesday.
We were still about 2 hours away from home, traveling I64, and I heard him start "clicking" (if you know, you know). So I immediately turned around to watch him, and his eyes rolled back and he started convulsing. I had to climb in the backseat and get him out of his car seat while my husband was trying to find an exit to pull off on.
We pulled off and I got him in the front with me, at this point he had been seizing for about 3-4 minutes so I administered his diazepam.(emergency seizure medication). He still continued to seize, and the thing about diazepam is, it helps stop the seizure because it slows your brain down, which then also causes respiratory distress. So his oxygen immediately dropped and he was still unresponsive with his eyes rolled back. About 3 minutes after I administered it, he started to puke while still seizing, I was so scared he was going to aspirate & he'd been seizing for almost 10 minutes still so we called 911, and the closest county EMS met us on the exit and drove us to UVA.
He was cleared and we got home finally close to midnight, but his seizure meds have been increased again.
He wears a pulse ox at night, but I'm so afraid he's going to have another seizure like this and I'm going to miss it and not be there to help him out of it 😞
This one was worse than the grand-mal/tonic -clonic he had back in June 2023. This was the longest seizure he's had yet.
He struggles with focal and absent seizures daily, but these ones are the ones that make my heart sink to my stomach and scare me. SUDEP is my worst fear .. 😣😣
