Entering a new era

I really feel like one of those folks on an episode of Star Trek (The Next Generation – because that is the only variation of the show that mattered.)  Why?  Because I am typing this update on my Android (you know the one I could find no good special needs apps for Becca for. 
On a whim I looked,  and sure enough there was an app so I can manage comments and posts all from this itsy bitsy 10″ wide piece of plastic.
Becca is — well I don’t know how to put it.  Things have been odd lately.  She is going to bed much earlier. Yet on the weekends she does not seem to want to nap. We see her utter exhaustion,  and yet she will not sleep.  Then, come 5pm she crashes – HARD.  On school nights she is lucky lately if she is awake for very much time after David gets home.  We have not seen an increase in seizures.  Yet as I am sure all of my fellow Epi families know,  there could be a larger monster lurking – sub-clinical seizures.  These are ones that would only show up on an EEG. Not sure which is scarier,  that or ANOTHER shunt failure, which is another possibility.  We see her phase in and out of simple partial seizures sometimes, making it hard to know if it is one long event or a cluster of events.  Then there was today. She had another significant tonic seizure,  followed by several minutes of in and out of simple partials.  The whole thing was 8 – 10 minutes. I didn’t have my watch on me yet so my measure of time was mainly the cartoon on the TV in the background. I didn’t give diastst this time since she was apparently coming out of it on her own. She dozed for a while – that post-ictal nap.  Around lunchtime I sat on the couch holding her,  and it was obvious that something was still not right. Her eyes were un-focused. She was lethargic.  I asked her if she needed diastat to help her feel better.  She HATES diastat (hate isn’t even a strong enough word if you could see her usual reaction).  I presented her with the yes/no communication switches we use with her. She pressed “yes”.  To verify,  I swapped the buttons (she often simply picks the one on the right,  so this test is needed to prove her intention) . I asked again. Again she pressed “yes”.  well I guess you don’t get much more clear than that. I gave the diastat. ZERO fight from Becca (again it is usually a battle worthy of the MMA octagon) .  I proceeded to feed her lunch,  expecting the medicine to knock out my already drowsy child. Nope. She quickly began to perk up and become much more of herself.
So now I worry, how much of her abnormal behavior lately has really been sub-clinical seizures?

Do we as parents ever get a break from worrying?


One thought on “Entering a new era

  1. The answer, sadly, is no.

    Sorry to hear there might be sub-clinical seizures. Let’s hope not.

    We have a new scare here as well. Some…odd swelling, odd eye placement, Bennett reacting to the area of his head where the tumor was. We could only get his MRI moved from November to last week of August. And I am worried.

    And the worry never stops.

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