Grand mal

Brandon had a grand mal seizure tonight that makes me think how amazing the human body is.  Luckily he was sitting down when it started.  I want this blog to be about our experience with this disease so I try to be as detailed as I can, not to scare people but just to show people the human side of how devastating this disease is.  You can tell someone about the difficulties with  blindness and the seizures and such but sometimes it sinks in better when it is a child that you know and can relate to and not just “the patient who had a seizure.”  So…..

He started convulsing so we laid him back into the chair, his whole body was shaking, his limbs locked up and he just laid there with a frozen look on his face, eyes open but not focusing for what seemed like forever(maybe 30-45 seconds).  I have heard seizures described as the brain misfiring and I now know what they mean because his body reminded me of the engine of a car that is misfiring and trying to stay running.  Ka chug, chug, chug, chug chug and at this point he started to turn blue.  This is when I realized that he hadn’t taken a breath in quite a while.  Finally something catches and the engine starts.  Wooosh, a big inhaled breath, but he is now drooling and spitting up a little so we had to kind of straighten out his airway to make sure it was clear.  At this point he goes through what I call the brain “reboot” where everything winds down, the body gets still and he falls asleep.  The whole episode lasted maybe 4 minutes, but as you can imagine it seemed like forever.

I try not to cry too often but this one got me.  Just the other day we ran across a piece of schoolwork that Brandon did from Dore Academy several years ago.  It was in his own handwriting and it was several sentences about BAT, Basic first Aid Training, I cried then thinking about the fact that he can’t write anymore.  I cried tonight watching my first born child turning blue and not being able to do a damn thing about it………..

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About

I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

Posted in Batten Disease, seizures, Uncategorized
2 comments on “Grand mal
  1. Pam Barnard says:

    Chris and Wendy,
    Thanks for sharing with us. I know it has to be hard to deal with all of this. ALthough I don’t see you guys that much, it breaks my heart to know you are having to battle this nasty disease. Just know that you guys aren’t alone. I know that you have many friends who care about you and your family. When you hurt, I think we all hurt. I hope you guys know that if you ever need someone to just listen, please call me! I don’t know how else I can help, but I want to offer my ears…if that helps. Pam

  2. Jeff Smoak says:

    Know you are in our prayers. Grand mals can be scary and certain ones impact more than others. We even found that there were times when Macayla would have a day or so of greater confusion and less coordination, then have a grand mal. Afterward, she would seem clearer, as if the seizure cleaned out the cobwebs. Overall, I was amazed how used to them we got. It stinks to have to watch your child go through this. Keep sharing your experience because it helps. We will keep praying for you all.

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