June 14, 2010

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.

5 comments:

Kristin said...

I'm so sorry to hear this Lisa. You and the family are in my thoughts and prayers. Take good care of each other.

Elizabeth said...

Lisa --

So, here is my random thought -take the concept of seizure tracker and document "the brain schedule" of a school day as compared to a weekend day. Marco and Josh run on an entirely different meal schedule (same basic time) but different relation to play (Wii, TV, booktime)on weekends...maybe there is a trigger there? I don't know -you know I just want to find that magic wand for you guys.

Mama Lisa said...

Thanks Kristin and Beth. I know what you mean about weekend triggers Beth and we've been trying to keep things as consistent as possible and can't figure out a trigger. The days are not the same as school days of course but the big things are consistent. I am wondering if it is body cycle of some sort. I'm also wondering if the warm weather has anything to do with it because being overheated used to trigger seizures for him prior to surgery.

Lisa

Kelly O'Melia said...

Lisa,

I am sorry sorry to hear that Evan continues to have these seizures. I hate seizures!!!! They stink!!!
I will continue to pray for your sweet boy that these seizures will leave as quickly as they reappeared.

I know with Gabby it seemed like her seizures have often been cyclical. I'm not sure if there's any science behind my thoughts but it seemed like the electrical activity would almost build up into a seizure and then everything would be reset electrically only to build up again. This often happened over a predictable interval of time.

Anyway, I'm specifically praying for some wonderful weekends in your future!

Kelly

Anonymous said...

Hey Lis,
I've been checking your blog recently since I've been off FB. I have so much faith in you, Rog, Aria and Evan.

thinking about you and Evan and your family today because it is a special day for us today. Hope all's as well as it can be and hope to talk to you soon.

Claudia