Status report: Status epilecticus

I don't normally write in midst of a horrific period for Haya. 

But while I type this, she is in nearing 48 hours of what would undoubtedly be deemed by a hospital team as Status Epilepticus. Basically, that's the epileptic's nightmare - non-stop seizing - and I figured I ought to record it. 

Until this struck us, she had been doing extremely well and was down to only 3-4 seizures a day. I was growing ridiculously optimistic about her new med, Fycompa, already dreaming about her possible future milestones. 

Tomorrow night, her Fycompa dose rises from 4 mg a day to 8, as her neurologist instructed us. That's the therapeutic dose we've been aiming for these past six weeks.

But now I don't have the same high hopes I had for it's success as I did two days ago. And in any case, it will be some time before the higher dose kicks in.

Haya right after a seizure today

UPDATE December 25, 2020 - Friday afternoon 2:30 pm: Her seizures have worsened so we have one foot out the door in the direction of the ER. The memories of our last stay there are still so vivid and horrible. And I know the experience will only be worse now in the midst of our huge Covid wave. 

So before resigning ourselves to the ER, I  am making last-ditch efforts to get her under control at home with paracetamol, Advil and raising her Vimpat back to 100 mg. Insider tip: Avoid those paracetamol suppositories even when swallowing is problematic. They can escape from the rectum quite a while after administering. There's no way of knowing how much was lost so you can't re-administer. It just happened here!

As a last resort, I have prepared our Diazepam rectal tubes that have an expiry date of 2018. I've read the instructions carefully and studied the diagrams. We can't find any new stock in any of the pharmacies here. Haya's pediatrician believes they're probably still potent as drug expiry dates tend to be exaggerated. 

I also called her neurologist who had succinct advice: "Get her to the ER." 

In three days we've gone from counting the number of seizures/day to the number of minutes between seizures! 

Will update - hopefully from home. Meanwhile here is Haya, whacked by her ordeal.