My daughter doesn't ring an ambulance for small seizures. It's written on an epilepsy passport when to ring an ambulance. For my grandson it's after 3 consecutive short duration seizures or one seizure lasting more than 5 minutes. Rescue meds are to be given on the fourth short seizure or at 13 minutes longer seizure. He's had a ten minute seizure and not been too drowsy afterwards. He's had a couple of consecutive short seizures and slept for a couple of hours - we mostly go with a gut feeling with regard to dialling 999. We know that if we're starting to panic, he needs his rescue medication.
Our grandson is 4 and has been having seizures since birth.
They've changed over the years - he seems to be drug resistant.
He also has his memory wiped out, he's also lost his speech completely a few times. He's now non verbal - he was previously stringing words together but lost it altogether. He says single words if you ask what is that, what do you want to eat. But mainly, he indicates hunger, thirst, loo by signing.
Most recently he has drop seizures where he damages his face/head mostly. He has to be accompanied on stairs now as he's had a few 'drops' whilst climbing them.
He has a camera which records him throughout the night and a wrist band which sends alarms to a smart phone when his vital signs are high. His heart rate is a good indicator of seizure activity. He has his rescue meds stored at nursery school and at home. The first time they are used outside the hospital we were told to wait for the paramedics to arrive to administer them.
He also has a left sided weakness before/during/after a seizure. If he starts to limp we know what to expect. He's had several EEGs at home which can last 2-4 days depending on the amount of activity captured.
We are waiting for genetic/genome testing results.
He's on the maximum amount of medication for his weight - 2 different drugs, but still has several episodes a day. These can be fleeting 'side eyes', drops, hysterical laughter for no reason, tonic clonic. He often tries to grab at invisible objects. He chews the inside of his mouth, moves his tongue from side to side so that it pokes his cheeks, picks his lips, pushes his head against hard objects for comfort - all indications of impending seizure.
The worst is when he goes blue/purple - it spreads across his body. It's horrific - been happening since birth. At first they said he was breath holding - which turned out not to be the case. It's like his brain switches off his breathing - my daughter's neighbour witnessed one of these occurrences as they were on the drive in the car when it happened. He helped to ring the ambulance while my daughter got her son in the recovery position - his wife said he's had flashbacks ever since.
My daughter's greatest fear is being so exhausted that she sleeps through a seizure - there's more activity through the night than during the day. She's constantly checking on him, even when the alarms are quiet. Then she drags herself out of bed and goes to work.
And it always happens when you relax your guard ....