MC EEG Study

12:24 Day 1:  “Sooner rather than later…” is what I was told.  All I heard was “come now.”  I called our neurology NP yesterday to touch base.  To let her know that MC had an “off day” and that I was on top of it, noting all thirty-plus of her myoclonic seizures and staring spells and that I’d even thought to take her to our local pediatrician to check for any underlying illness she may have (which sometimes will cause an increase in seizure activity).  Sure enough, MC had an ear infection.  That coupled with a busy week of summer play and pool time, I just knew the NP would note it in MC’s file and assure me that we’ll get to the bottom of her seizures with the EEG scheduled for July.  She asked me to hold for a moment while she chatted with Dr. Turner, our neurologist.

“How soon can you get here?”  I’ve heard those words more than I care to remember and have almost become a pro at minimizing our hospital bags to merely three total.  Mel finished a few things at work, we packed the car with our three bags, laptops, iPad, and hit the road.  McCanless, thankfully, was already spending lots of time at Mimi’s with her cousins, Molly and Will, and will stay there until we come home.  Dr. Turner wanted the EEG sooner rather than later.

Depakote is not working.  It is the “go to” seizure med, and typically works very well for the types of seizures MC has.  MC is not typical we are realizing once again.  She was put on Depakote after her Fontan in April with hopes of controlling her Epilepsy, but it’s just not working.  Her “tics,” or myoclonic seizures, have increased in frequency and she continues to have generalized grand mal seizures.  As I’ve said before, neurology is a mad science.  It’s a highly educated guessing game and we are currently in the process of trying to figure out the correct seizure med combination and dosage for her.  We don’t know why she has them or why they only recently started or if there in a genetic condition that we are missing.  We know that she has Epilepsy.  We know we need to get her seizures under control.  This is where we are.  So we are back “home” at MUSC on 7 East.

We arrived late afternoon yesterday and we were able to get her “hooked up” to her rainbow Rapunzel hair.  We have already “caught” several myoclonic seizures on film and EEG, so at least that’s some progress.  Still, it’s disheartening to see how many she actually has.  It’s more than we thought.  We never even knew she had them while she was asleep.  She has seizures when we aren’t aware of them.  Dr. Turner is determined to do all he can to get them under control.  She will be weaned off of Depakote and has already started Keppra by IV.

If you’ll notice, MC has been visited by “Junie Bug” her tooth fairy!  Junie Bug left a pink note and lots of sparkly money last week after MC tumbled down a flight of stairs losing two of her tiny bottom pearls.  (Although they do look like little shark teeth with the roots still long and intact.) Although I missed seeing the tumble, I’m convinced that she had a myoclonic seizure, which resulted in her fall.  She’s been falling a lot lately.  The seizures that we have been unaware of may be the culprit.

MC is napping peacefully now after such a late night.  We hope to head to the Atruim for a magic show after her requested cheese pizza lunch.  (If we can handle carting her IV pole, wireless EEG monitor, and video monitor pole with us-It may be a long afternoon.)

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