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Wednesday, September 4, 2013

Goodbye, True Blue Potiga


What was touted to us as the most hopeful new drug for Kels back in March has now been taken from our arsenal due to an unusual side effect that so far cannot be explained.  It turns people irrevocably blue.  Like Smurf-blue.  Since they (has anyone ever quite figured out who “they” are?) cannot figure out the why of it, Kels has to come off.  No big loss since it didn’t seem to help with her overall seizure control anyway and it is very expensive.  So we’re back to the regular meds, which currently includes Keppra, Lamictal, Vimpat, Klonopin, Diastat as needed, Depo-Provera (to help with the hormonal induced seizures), and Lexapro to try to combat the effects of all the drugs, the epilepsy-induced depression, and life as a home-bound 21 year old in general. 

But wait!  Her neuro says that there is another up and coming, promising drug that should be available soon.  I can’t remember the name of it currently, but he’s got great hopes (sounds like a familiar song, doesn’t it?).  We’ll see.  She’s taking it well, even through the seizures that’ve been happening with the all-too-familiar playing with the medicine.  I wish some days that I could blink and take it all away from her, but sometimes our lot in life isn’t fair.  Sometimes our struggles aren’t even about us; they are used through us for a higher purpose.  Maybe we’ll see a breakthrough in her lifetime in time enough to help her.

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