Post by @bseizurefree

When you get the seizure text/call, whatever is occurring needs a pause as we focus on B’s medical emergency. If my husband texts to clear his bed, I know he is coming home with a child who has had a seizure or ready to have a seizure. Clearing his bed allows us the space to safely help B during the seizure and afterwards the space for him to sleep it off. B’s seizure times have shifted from middle of the night to around 4-6pm. I’ll take that time frame even if it means dinner is postponed over a night seizure anytime. His seizures have always been very time oriented but when you adjust to the pattern, they again shift to a new time. Likely when school starts tomorrow, they will yet again shift. There’s no safe time with Dravet syndrome. #time #day #foryoupage #epilepsy #dravetsyndrome