After getting the seizures under control again yesterday morning, they came back last night at around 6:30. We tried the usual protocol of meds we've been using, but he was not responding for some reason. We spent the night trying to keep Collin awake while we waited to hear from the neurologist so he wouldn't have more seizures, but between his lack of sleep and the sedating effect of the medicines, he got more and more exhausted and it was a losing battle. At around 9:00, the neurologist approved more clonazepam and called in a prescription for Keppra, an antiseizure drug Collin hasn't tried. Even after two more clonazepam and a full dose of Keppra, however, Collin was seizing every 3-5 minutes. At 11:00, we called the neurologist one final time and were told to do one more dose of Keppra and, if he didn't stop seizing within 30 minutes, go to the hospital. Once again, Collin waited until the last possible minute and with about 15 minutes left until our deadline, he stopped seizing and went to sleep. It was another night of minimal sleep for Kyle and I as we took turns 'sleeping' next to Collin so we could watch for seizures. He made it through the night without any and now we're getting ready for his EEG and neuro appointment, hoping to avoid getting admitted to the hospital.
Our visit with the geneticist yesterday did not really yield any answers. Collin did not 'ring any bells' for the doctor, but he did order some more blood work to rule out a few more possibilities. He also recommended a repeat MRI to see whether Collin's condition is static or progressive, an ultrasound of his kidneys to make sure they're okay, and a muscle biopsy to determine for sure whether he has a mitochondrial disorder. We are planning a trip to Cincinnati Children's Hospital soon for some second opinions, so we will probably just do everything at once at that time.
More to come when we know something.