The Bad News

As Wes gets older, my posts seem to be getting further and further apart. I guess that's a sign that this life feels relatively normal to us. I'm not struck by the need to share the latest updates because it all just feels like our regular life these days. I do want to give some updates though because I love that you all love and care for him and want to know what's new.

 

Bad news is Wesley is still having seizures. He's not having severe ones, as seizures go, but it is still heartbreaking to watch him disappear for a couple minutes. Sudden drops in barometric pressure seem to be a major trigger for him which does not bode well for Spring and Fall in Colorado. We live with the fear that he will start seizing and we will be unable to get him to stop. In the past year, we've watched as several of Wesley's classmates have been rushed to emergency rooms for severe seizures and attended the funeral for another classmate whose seizures were uncontrollable. We are grateful we've only had one emergency seizure situation but live with the reality that there will likely be more in his future. It's impossible to watch him every minute of every day but there is a nagging fear anytime we don't have eyes on that he will start seizing and not come out of it on his own and we won't even know it. They call it "sudden unexpected death in epilepsy." This past week I finally was sane and calm enough during one of his seizures to remember to video it. His "normal" seizures don't look like the standard shaking that the word generally brings to mind (aka a tonic clinic seizure or grand mal). Wes' are classified as complex partial seizures and are harder to recognize. I'm including his seizure video mostly as an FYI for those of you who spend time with him to know that if you see him doing this behavior, he is having a seizure.


Also as an FYI and general educational information, the standard protocol for what to do if you are around someone who is seizing (at least for Wes):

  • safe (ensue a safe location where they won't fall or choke on their vomit, do NOT restrain or put anything in their mouth)
  • time (time how long the seizure lasts)
  • help (for a seizure lasting more than 5 minutes, administer a rescue medication if you've been trained to do so or call 911)

 

See the next post for the Good News :)

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