Ever since Elisabeth started taking Sabril (close to 11 weeks ago), she has been mostly free of infantile spasms....until this week.
For the past 3 days we have been seeing spasms...worse than ever, especially during the night. They come on so strong and so hard that we awake to the sound of her gasping for air. With each spasm it looks as though she is being struck by lightening, over and over and over again, for about 10 minutes. Her body jolts uncontrollably and her arms and legs go flying outward. The look in her eyes is one of terror, pain, and confusion. In between each spasm she lets out a whimper, as if begging for someone to help her.
So Donald and I snuggle close and whisper sweet things in her ear; how brave she is, and how much we love her, and how it won't last much longer. We try to sound calm and reassuring, but all the while my heart aches for our little girl.
And then finally, they stop, and she closes her eyes and drifts back off to dreamland for a few more hours until the next cluster comes.
After consulting with her neurologist we have decided to slowly increase her dose of Sabril over the course of the next few weeks in hopes that we can once again control this dreadful form of epilepsy. This has to work. It just has to. I simply can't imagine Elisabeth having to live this way. No child should have to endure this.
So we will keep hoping and keep praying....as always.
