And Then Came Epilepsy

When Ian was diagnosed with epilepsy two years ago, I didn’t blog that much about it. Over the years, I wrote extensively about the fact that he has autism, but this was different. Ian has the lighter variety autism, spiced with some unusual talents, so half the time, I was bragging about him. Also, I tried to not blog about him per se, as much as my own experiences advocating for him at schools and in the community. The epilepsy and his very serious reactions to the medication had no upside. It was just plain awful. I never wanted to be one of those crazy women who monetize their children’s health issues, so I mentioned our experiences without the details or drama.

I’m still not going to write about it, but I will say that I think it’s mostly behind us. Driving is still a question mark, but I think we have the seizures and the medication under control.

Today, Ian is wired and wrapped. He’s in the middle of a 50-hour EEG. The last one, two years ago, told us that he had epilepsy. The data showed that invisible seizures were zapping his brain every two minutes. Since then, he has endured pharmaceutical experiments, hospital stays, and unspeakable events that would break lesser souls. For three days, he’s home-bound with electrodes cemented to his scalp. Our hope is that the test will show that we finally got the meds right, and his brain is quiet. In the meantime, he is being spoiled rotten with his favorite foods and new video games.

9 thoughts on “And Then Came Epilepsy

  1. His eyes are just gorgeous and the terra cotta colored shirt matches his hair. Do the techs behave themselves or go on about how beautiful he is? Hmm, I’m not behaving, but I can’t help but notice as a photographer.

    Wishing all of you peaceful brains.


  2. And, am always here to celebrate Ian’s talents and wins!

    I like the word kvell about your child (“bursting with pride”) rather than brag (which I define as comparing, rather than celebrating).


    1. Thanks, susan and everyone! We managed a difficult three days. Ian never complained once, because he’s an awesome kid. Haven’t gotten the test results yet.


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