It's been two months since Josh returned home and, to be honest, it has not been easy for any of us. The emotional roller coaster did not end when he checked out of NYU.
Josh has tried a "new" medicine, Decadron, but it has not had an impact on controlling his seizures and he will be completely off it soon. He has also just started on Depakote, a med he first tried four years ago after being diagnosed with Epilepsy at Albany Med. It's too early to tell if it's having any impact.
Josh had a tonic-clonic (grand mal) seizure one morning this week at 7:35 a.m. It was a shocking and disheartening experience. We thought the Felbatol that he has been taking for 18 months was at least preventing him from having tonic-clonic seizures, but apparently not.
Josh is also starting to see another doctor, although he is more of a neuroscience researcher than a clinical physician. His name is Dr. Rodolfo Llinas and he is a world renowned scientist (Google him, if you're interested). We don't know where it will lead, but Josh has undergone a MEG at his office as the first step.
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