Saturday, February 19, 2011

In Which Connor Teaches Me A Lesson

I'm in Spokane, Washington for my first ever roller derby bout right now!  So I'm posting a repeat of a recent blog post about some of the things that have been going on in our lives lately.

My scruffy haired little boy had a good day today.

He definitely needs a haircut, though!  So that's probably on our list for tomorrow.  Since we had rainy weather today he and I spent some quality indoor time together this morning; we read stories, played in his swing and in the bathtub, made music together, and had some cuddly time too.  Then he snuggled down, signed "Mommy" and grabbed my hand.  He took a little nap in his swing while I sang old family songs and gently rocked him. 

If I loved this kid any more I think it would kill me.

He's on Ativan again, which is unfortunate.  He didn't have any seizures today, but it seems like lately that's been the exception and not the norm.

One of the things we discovered at the clinic yesterday is that he's probably not been having febrile seizures.  Connor's autonomic nervous system is having such a difficult time right now that we can't rely on any auxiliary (i.e. forehead, armpit or ear) temperatures anymore.  They don't match up with his internal temperature.  So while we might get a reading of over 100 degrees on his forehead and under his arms, a rectal temperature will come out his normal 97.4 degrees (he runs cool). 

What that means is that instead of febrile seizures, Connor is probably having cluster seizures and the "fevers" we've been seeing are a result of his autonomic nervous system going haywire.  
So that leaves us with two conclusions.  The first is that since Connor won't tolerate an oral thermometer, from now on we have to take his temperature rectally.  Glorious.  The second conclusion is that once again, Connor's seizures are uncontrolled and we'll need to start looking at an adjustment of treatment. 
Perhaps even more disturbing is the fact that Connor has started twitching slightly every few minutes.  I hadn't even noticed because the onset of this was so gradual, but the doctors pointed it out.  Though we'd have to do another EEG to be sure, they think that his brain is probably misfiring every couple of minutes and so he's having what they term "microseizures."  These are new and suggest that the medication's effectiveness is continuing to deteriorate.  Needless to say I'm sad and worried about this turn of events.  
I have confidence that someday-- hopefully soon-- we'll figure out the right course of treatment and Connor will be able to enjoy life seizure free.  And I take a lesson in patience and optimism every day from my son, who takes his seizures in stride and only gets frustrated with them when they cut into his play time.  Otherwise once the side effects of the seizure wear off he simply smiles and gets back to whatever activity he was engaged in before. 
With him for an example, how can I do anything but pick myself back up from this latest heartbreak and dive back into my own most important activity-- making sure that my little boy is as healthy and satisfied as possible?  He deserves nothing less. 

And on the good days-- days like this one-- when he's giggly and smiley and energetic, I want to spend every precious second making him happy.
So we'll go back to the drawing board, talk with his neurologist and start looking at other solutions.  In the meantime I wouldn't mind a few more lovely days like this one.  It didn't matter that it was rainy and gloomy outside; my very own ray of sunshine held my hand for hours and wouldn't let go.



  1. Your story of your love for your son is beautiful and intense. He is an adorable boy. I hope that you get a medication that is effective at controlling his seizures soon! I hope it's not snowing in Spokane! I grew up there and it seems strange to me that they would have roller derby in February! Hope you have a great time.

  2. "If I loved this kid any more I think it would kill me." That line says it all. Hope you find more and better answers soon and also the magic drug combo that will truly help. Hugs.

  3. I want to hear who won at the Roller Derby! :) Nice post!

  4. OH the joys of mommyhood. Never a dull moment huh?
    What meds is your son on? My son was on Depakote and it didn't work at all. Then we went to Keppra - made him ill. Now he' son Trileptal and so far the best of them all.
    My son also has microseizures too. Not very often but still. Diastat is VERY effective at putting a cease to them.

    1. Will connor need rectal the rest of his life ??

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