Tuesday, August 17, 2010

B's Seizures

     B's seizures are a huge, time robbing part of her life. She has had several different kinds. The most recognisable type, what are now called Tonic Clonic and used to be called Grand Mal, are the ones that cause loss of consciousness and rhythmic jerking. B has these ones rarely, and only when sleeping. Usually these involve transport to the hospital as they last a long time for her.
     Absence episodes, which used to be called Petite Mal, started when she was seven. They aren't obvious, she merely stops and stares blankly for about 30 seconds, then comes back and complains of a stomach ache. It took me about six months to realise that she wasn't just zoning out, a fact that made me feel very bad. We would be walking somewhere and she would just stop and go stiff, then crumple up as they ended. I just hadn't heard of them and she had been seizure free for quite awhile so I wasn't looking for seizures.
     Complex Partials are the most identifiable types she commonly has now. She has them a few times a week despite her medications. They are the most disconcerting and dangerous. She may start out aware that she's starting to have a seizure, which is terrifying for her. She usually moans, spits, and blanks out for them, or she may engage in movements, grasping things or walking off in a random direction. This makes them dangerous when we are out walking, she can't control the movement and can easily walk off in any direction including into traffic or down a flight of stairs. She has choked on food.
     Finally, she has subclinicals, or just random misfirings, all the time. These don't manifest physically, neither she nor any observer are aware of them, they are only recognisable on an EEG. The frequency of these varies, and on some EEGs they are more noted than on others, but they are the most impacting, because they interfere with her experience of time. They prevent her from  processing what is happening and destroy her ability to make memories. This makes part of her daily life inconsequential, since she neither knows what is going on nor adds to her level of experience. I think that is part of why she is young for her age. While other children have continuous growth and information processing everyday, she does not.
     Seizures severely limit her activities. She cannot be left alone around water, while she eats, and she cannot walk the half block  to school by herself nor play on the playground climbing gym unless she goes with someone able to catch and hold her. It is simply too dangerous. She must hold some one's hand down stairs, in traffic, and while getting on and off buses.
     Additionally, she has trouble accessing many things that other kids take for granted. Attending after school programs and recreation programs takes us much more work than most other people, and some have refused to take her, but that will get its own post.


  1. I have absolutely no idea how difficult this must be for both of you. I do want to say one thing, though. For both of us. Once my older son was diagnosed with diabetes (age 5) I realized that the previous year's bed-wetting had been a symptom and I could (read should) have taken him in loooong before I did. Guilt? Yes. Pointless? Also a yes. You are a good and vigilant mom. We all just do the best we can given our understanding at the time. Thank you for sharing this. Di

  2. That must be really terrifying for you to have to be afraid of her eating and walking incase she has a serizure