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Saturday, May 17, 2014

Wow!  It's been a really long time since I posted any updates on Levi.  That's always a good sing that things are going well.  We've had a few bumps in the road over the winter (RSV, ear infections, viruses), but in the last seven months Levi has been in the hospital only once, and it was just an overnight stay.

For some reason, the seizure frequency has increased, and partial seizures have made a return.  We haven't seen this type of seizure since he started the ketogenic diet two years ago.  There have been several instances where he needed a rescue medication to bring him out of the seizure.  This med puts him almost immediately to sleep, and he is usually out for the majority of the day.  The following day he is typically tired and cranky.  We have increased Neurontin, which he actually takes for neuropathic pain, but is also an anti-epileptic, and have held off completely stopping Phenobarbital.  He has continued to have daily seizures.  He is sensitive to sudden changes in light, which will send him into a seizure.  This has become increasingly more severe.  Some days even the slightest shadow falling across his face will affect him.

Two days ago I learned that frankincense essential oil has been found to stop seizures.  I ran right out and grabbed a bottle, and immediately applied it.  He receives two drops twice a day on his feet or the back of his neck.  It's too soon to know how effective it will be, but so far results are promising.

He has just received Botox injections for the first time in his biceps and calf muscles to relax the tightness.  We've noticed a marked change in his arms, but the legs, which are much tighter, still need some work.

He is doing well in school, and loves to be there.  He rides the bus like a big boy and likes to look out the window.  All in all, life is good these days, and we are so grateful!