Grace for Rett » Grace's Life with Rett Syndrome

Epilepsy Mumbojumbo: Refractory or Intractable Epilepsy

I’m so absolutely wiped today so this post won’t be full of the witty smartassy brilliance I know you love (eye roll) I’m just popping by to share some new words I learned today (tadaa!)

Grace had her neurology appointment today and the Dr said something to the effect of: “…Grace’s intractable epilepsy…”

“Her…what?”

So here’s the lowdown: I guess 70% of epileptics can be controlled and made to be “seizure free”. When I asked what was the threshold for being seizure free, she said it’s 2 years without a seizure. It never crossed my mind that this was even a goal – that there are people with epilepsy who can achieve going for years without a fit. We can hardly go 2 weeks (or sometimes days) let alone 2 years. So Grace is in the 30% of epileptics with “intractable” or “refractory” epilepsy meaning it can’t be controlled.

She was referred to the clinic for information on starting her on a ketogenic diet. Cannabis could also be an option, but not in the UK.

So there you have it. And now I must crash…ZZZZZZZ

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