For the last day of school in June 2010, we actually had to take our little guy to the ER at the children's hospital. He had spent the previous day and night having drop seizures probably every 30 minutes. Then added to the seizures were hallucinations. I don't think he slept at all that night. He kept sitting up quickly seeing clowns appear in the bedroom (he was watching a kid's show earlier), and was frightened the entire night. My husband stayed by his side and they prayed all night for Heavenly Father to help the scary things go away and to protect him. That was probably the scariest night of our lives.
The morning didn't bring about any changes, except that his hallucinations weren't scaring him anymore. He would see magic dolls flying or our faces changing colour, and think it was pretty funny. Needless to say, we didn't wait any longer to see if he came out of the seizures on his own and took him to the hospital. He was there for a week's long visit with massive amounts of medication.
Before the hospital stay, we were trying an additional drug called clobazam, didn't like the side effects and had just dropped his dosage. To this day we're still not sure if the drop in medication caused the hallucinations or if it was seizure activity.
The summer of 2010 and on turned into my worst nightmare. Our son's steady deterioration was alarming. My best description is that he was like a barely walking zombie. He couldn't eat on his own and would often vomit what we could get into him. He would wet the bed or wake up disoriented not knowing where he was, and couldn't dress himself. He would cry all the time due to his inability communicate, or take several minutes to say just one sentence. He would try so hard to speak, but his mind and overall functioning was almost at a stand still. Many days he would often just stare and have little response at all. He no longer had any friends and showed very little interest in anything.
He maybe had 3-5 days for those 2 months where we saw our son coming back to us, but the seizures would quickly return. The summer ended with 2 more hospitalizations from his brain going into a persistent seizure, status epilepticus.