@SleeplessInWherever We have a DD with the most severe epilepsy. She’s been under three professors of neurology at GOSH and the National Hospital for Neurosurgery and Neurology. The LA was funding a 6 figure placement at a specialist epilepsy school. (Easier to get blood out of a stone than get that out of them)
One day in the summer holidays, she’d had about 45 seizures (mainly complex partials or focal unawares) in 35 minutes; this sort of thing happened every week. The emergency medication hadn’t worked. The emergency protocol was to call 999 next. When DH got to A & E with her in the ambulance, a junior doctor told him, she doesn’t have epilepsy! He said
”We have a test - we open her eyelids during a “seizure”. She’s still responsive - she shouldn’t be!
What he didn’t realise was that maybe this is true of people during a tonic clonic. She only had about one tonic clonic a year at that time; but she could have 150 complex partials in a day - where there is impaired consciousness. She can still hear us, but can’t see us during seizures for example. Half an hour later, DH walked past this doctor who informed DH, he was right - she does have epilepsy!
We complained afterwards to her consultant neurologist, who was speechless! He told us, in future to stand up and argue with junior doctors in A & E, and insist they call the on call consultant neurologist; and even if they said, there wasn’t one, we were to insist there was!
After that, it was written in capitals on her file
”IF THIS HIGH RISK PATIENT COMES IN, RING CHALFONTS FOR ADVICE!”
Chalfonts is an outpost of the National Hospital for Neurosurgery and Neurology.
Another of her consultant neurologists told us DD was safer at home with us than junior doctors in A & E in August and December, when the new trainees start their rotations.
I don’t mean to frighten you, even if your DS is having seizures, 70% of patients get control with drugs. My DD is a very rare case, with a combination of a rare and an ultra rare (2 families in the UK type rare) syndromes.