We have been slowly decreasing Clobazam since we returned from Johns Hopkins. It wasn't the neuro's initial suggestion but he agreed to let us try and see what happens. Since Sophie is not seizure free then "playing around" with medication levels is not as crucial as if she was seizure free. Initially, she was on 10mg per day (5mg in AM and 5mg in PM). We started the wean by taking away 2.5mg in the AM. At first she did not handle it too well but then she stabilized. Then we weaned 2.5mg in the PM which she handled very well. Last night, we weaned the other 2.5mg in the PM. So now she is only on 2.5mg in the AM. This also means that she is not on any antiepileptic drug in the evening. Wow- that is so nice. Hopefully, the rest of the wean will go well and we can keep her off any antiepileptic drugs for a couple of weeks. I would just love to see what this will do to her development. Eventually, we will give Keppra a try.
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