Friday, March 26, 2010

What is it about Friday nights?

Gracie seems to be having seizures routinely on Friday nights now. For a while it was every other Friday night and now we seem to have slid into weekly. Somewhere about 8:00 PM - give or take, she has a seizure.

We have tried giving her meds a bit earlier, no change. She has had three of the seizures at the Friday night session of gymnastics. However, she has had many more away from gymnastics. We have tried to think through many of the possible scenarios and get ahead of this but we are just running out of ideas - good ones anyhow!

It is getting harder to watch her have seizures now when I know that regardless of how small, they are taking something from her. The more of these there are, those little backward steps start to add up.

I have been in touch with her doctor and I am waiting to hear back. About 18 months ago, we looked into a drug called steripinitol. This drug is used in conjunction with her Depakte and has had great results with kids with SMEI (Severe Myclonic Epilipsy of Infancy)/Dravet's Syndrome. However, at the time, Gracie was not a good candidate for this drug as it works with the Depakote to raise the levels of it in her blood. She was already at near-toxic levels at that point so the medicine would not really help her. I am hoping that since her situation is the reverse now that this drug may be helpful to her. I have yet to hear of anyone using this drug and the ketogenic diet. The drug is still not cleared for sale in the US. We would have to have the hospital order if from Canada for us.

Thanks for checking in. Please hold Gracie in your prayers. She can use every little bit of help she can get these days!


  1. Marie, It sounds like things have been very busy since DC! Our thoughts and prayers are with all of you!!!!!

  2. Thinking of you all and sending BIG hugs and lots of love! Maree :~D