August update

Sunday, August 31, 2014

August has been a tough month here. Eight seizures so far.  Previously the most she has ever had in a month was three and that was when she was sick.  There are a lot of variables going on right now.  She is teething which can cause an increase in seizures.  Also, we are still as of today doing a modified version of the gaps diet and we are still weaning phenobarbital. Seizure types in Dravet typically change.  We have seen in increase in seizure like activity in the mornings.  Her eyes are shifty and darting back and forth in an unnatural pattern. It's very subtle.  I believe it is eye myoclonics starting. We have started using an eye patch over one of her eyes to see if it can help stop them.  

 It's hard to look on the bright side with seizure after seizure but I am thankful that we only had to use Valium to stop two of those seven seizures.  The others were stopped with essential oils.  I'm thankful that during one of the seizures when David wasn't here I was able to remain calm and focused to help her get through it.  That's huge for me. 

I'm hoping that September will bring some relief seizure wise.  Selah is starting fourth grade and Stella will be at home doing preschool.  If things go well I hope to start homeschooling her next year.  This week is the deadline that the military gave us to find out where we are going to be moving.  I'm hoping we hear something and they don't drag this thing on more. With every new seizure all I can do is hope and pray that we move somewhere where we can get what she needs. 

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