Drugs and hope: An update

Haya in the hydro pool last week

I thought a med update for Haya would be appropriate, so here goes.

She has been entirely off Keppra for nearly one week. She had been receiving 1,500 mg of it twice/day for several years. 

Her neurologist's instructions were to reduce her dosage by 250 mg. every 2 weeks. She admitted the move was a shot in the dark - just "something to try". But since it's known that epileptics can become inured to drugs after taking them for long periods, I embraced it. 

One less med sounded appealing.

I adhered to the weaning regimen, more or less, at times extending the two weeks by a few days. But I weaned her off the last 250 mg much more slowly. 

First I removed the nighttime 250 mg. and then two weeks later, removed the morning 250 mg.

Whew. It was a huge relief to see no repercussions. 

The last med we weaned her off successfully was cannabis But about two years before that we made an attempt at removing Vimpat. It triggered status epilepticus and a hospitalization.

So for now, Haya is only two anti-epileptics: Fycompa and Vimpat. Quite an achievement!

The new med

Here she is (above, right) having her first hydro session minus Keppra:

And while I'm aware of that birthday promise I made to opt for realism over optimism, I can't help hoping that deleting Keppra will bring some minor improvement. Not fussy about that - any shred of heightened functioning would do us.

Alongside the Keppra weaning we've introduced the new drug that the neurologist recommended to treat her kidney stones. It's Urocit-K and she gets one pill 3 times/day.

If those stones were painful, and I understand they tend to be, then I hope Haya is enjoying some relief already.

We can only hope and guess.