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.
Saturday, July 31, 2010
Saturday, July 3, 2010
The seizures return
Josh's seizures returned this week, four weeks to the day from when he left the hospital. For the record, he went 32 days without a seizure. It was not a surprise and was only slightly disappointing because we were expecting them to return as they did after the 2009 surgery. So now we begin to work on Plan B, which is trying new meds and other possible treatments.
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