Thursday, October 20, 2016


I have to remind myself to keep my feet on the ground, to only have tunnel vision.  19 months in and I know these feelings all too well.  It starts subtly and with some doubt, then the casual question between Sam and myself of "did you see that?", " what do you think?", "did you get it on video?".  We ignored the first questionable movements, but slowly the doubt becomes less and the panic starts to over take my mind.  What do we do? What's our next line of defense?  Do I email her epileptologist?

Ever since the varicella (chicken pox) vaccine her 39 day streak of seizure freedom was derailed.  I anticipated this would be the case, but as usual, I had some hope.  (I find the fact that I continue to use that word almost comical).  It started with some quick shakes (myoclonic seizures?) we originally wrote them off, and then a flashback of her first PEMU stay haunted my mind.  We have been doing the most slow wean of Keppra known to man kind (8 weeks), so after multiple shakes, I convinced Sam to go back to her previously weaned dose.  It worked, the shakes stopped.  I guess that solved that mystery.

But having CDKL5 isn't that easy.  Things can't be fixed so least not in our experience and certainly not for the bear.  So we plugged up one hole in the hose and then another leak sprung.   Now we are seeing the quick eye roll, the questionable head drop...the panic sets in, it's honestly suffocating.  It makes me want to get any drug to make them go away.  Then I take a step back, I go back into the tunnel...I remind myself she has a neurological disorder and she will always have odd movements, and her seizures are "refractory", after awhile they don't respond to medications...there really is nothing we can do.  Why am I panicking? The panic does nothing and there isn't any miracle at this moment either. 

So I need to find the floor and ground myself. I need to take a deep breath and let this unfold the way it's meant to.  I have to remind myself that there is no quick fix (or fix in general for that matter) and there (may) never will be.  It will always be trial and error and the sand will always fill the other side of the hour glass, but after it gets turned back over, we never know how long it will take for it to run out again and who knows, maybe one day a grain of rice will clog the path.

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