Oh No, Not Another Weekend!

The weekend is supposed to be a glorious break from the work week, filled with family time, activities and a chance to kick back a bit. With Summer coming it includes the chance to relax in the pool and feel the sun on my skin.

Lately for us the weekends have also brought a big seizure for Evan. For the last six weeks Evan has had a seizure on the weekend and five of those weeks has required Diastat to stop it. Each seizure is longer than the one before and every time we use Diastat it takes longer to work. It makes me wonder if the Distat is working at all. Maybe each seizure is just ending because it has run its course. The question everyone asks is why does it always happen on the weekend and we have no answer for this. It is our question too.

We are still ramping up on the new medication and the lack of change in seizure activity is unsettling. I can see the difference in Evan and I know the seizures, even at a rate of once a week, are taking a toll. His balance is just little off, it takes an extra couple seconds for him to respond to requests and he's tired. We're tired too and as much as I look forward to the weekend, I also dread it just a little.

The Bitter Taste of Diastat

I will never forget talking to a mom whose child has severe epilepsy and constant seizures, and her surprise that we had never given Evan an emergency medicine like Diastat to stop a seizure. Her exact words were, "We use Diastat like candy." Those words have hung with me since I heard them. Here we were, two moms with the common bond of having a child with epilepsy and at the same time, worlds apart. She and I are still worlds apart but I am reminded of that conversation now and as I struggle with my desire for Evan to regain seizure control, I know she has those same wishes for her child.

We had to give Evan Diastat three times last month and I can only imagine what it must be like to think of this medicine as candy. Each time we gave him Diastat was the same: we hear a noise coming from Evan's bedroom and find him having a seizure. His eyes are wide open, but he seems to look through us and he's stiff and shaking. We get ready to give him the Diastat, a gel in a pre-filed syringe that is given rectally, and after administering it we wait for the medicine to surge through his bloodstream and quiet his brain. One minute passes while we sit watching, waiting while Evan seizes. Another minute goes by and maybe another as we sit helpless watching the ugliness of this disease. Finally it's over and Evan slips into a deep sleep. I want to throw up but don't. It's over. I cry.

I know that as horrible as it is to see Evan go through this, I am thankful for the Diastat. I understand the reference to candy. I still can't relate to thinking of it that way, but f I had to choose between a chocolate bar and Diastat, I'd choose the Diastat.