My DS1 has been diagnosed with epilepsy today. He has a chromosomal disorder which can predispose towards seizures, but they usually develop in older children with his condition so I am quite taken aback.
His neurologist is also surprised as he is interactive, engaging and developing well, albeit slowly. She expected to see potential abnormal brain activity given his abnormal chromosomes, but all activity appeared normal until he gave some little jerks, which proved to be seizure activity on the EEG.
DS will start preventative medicine immediately and we have been advised when we need to call an ambulance or use our open access at the hospital. The consultant also mentioned night-time monitoring as being important: might anyone please be able to advise me of a system which you have used or have knowledge of? I was so surprised at the diagnosis that I didn't think to ask for clarification, and it is not our usual consultant so I can't just email for help.
I would really appreciate it if anyone can say what monitoring might look like for your child so DH and I can start putting things in place.