For years Nick has experienced hallucinations. Many people are not aware that those with epilepsy may suffer other difficulties in addition to the seizures. Experts differ in their opinion of the root cause, whether it is temporal lobe involvement during the actual seizures or if it is anti-seizure medicine-induced psychosis. Which ever camp is correct, hallucinations are a real consequence.
For a while, we as his parents weren’t aware of what he was experiencing. He would sometimes say things that we thought were just stories he was making up. We told him that they weren’t true and that he shouldn’t say things that aren’t true. We would change the subject to something else.
Then he started making false accusations. He would say that one of his siblings had stolen his ice cream and it wasn’t in the freezer, or one of his nephews had taken his airplanes and they weren’t in his room. Even when we showed him that the items were still where they should be, he would repeat the same thing over and over, insisting that he was right. It’s very frustrating for everyone when this happens.
One day his hallucination escalated. Nick was looking out the window and said, “Oh no there it go.” I asked, “There what goes?”
“See that mom?” “See what?” I said.
“The movie projector… the movie projector walking down the driveway by itself.” I looked outside. There was, of course, no movie projector walking down the driveway. (We didn’t even own a movie projector at that time.) He was so serious about what he was seeing. I didn’t know what to do, so I just went along with him. It seemed easier. I didn’t see any point in contradicting my son. I asked him where it was going, and he said “It going to town to have lunch, probably a burrito.” I hugged him and said, “Well, it will have fun then.”
Sometimes a few days passed before he talked about the movie projector again. Sometimes it was coming right back and other times it was staying over night somewhere. We would just agree with him and everything was ok. Then about a month later, he was really upset. He said that someone took the movie projector again. He told me that he needed it back.
I didn’t know what to do to help him. Then a miracle happened. He inherited an old movie projector from his grandma’s estate, and that seemed to help him. Nick now keeps it in his room, behind the door. He hasn’t seen it walking down the driveway for a while, nor has he reported anyone stealing it.
Well that is until last week.
One afternoon, he called out to me from his room. “Mom, the movie projector gone again. Someone take it. You get it for me?” I thought to myself, “Here we go again.” I was in the middle of something and so I told him that I would check on it in a little while. “You go get Arden, he find it for me,” was the reply.
Frustrated I said, “Nick, look behind your door. The movie projector is still there.”
“No, it gone. Someone took it,” he insisted.
It made me sad that Nick was hallucinating about the projector again. I couldn’t imagine that anyone took it, especially since it had been the source of such anxiety for months. “You find it, mom? You bring it back here?”
I knew that Nick wasn’t going to let it go until we resolved this. I went into his room and closed his door. All I saw was the space where the projector had been. I laughed out loud. It was obvious that he wasn’t hallucinating, unless I was too. Nick said, “See I right, mom! It gone again, someone took it.”
I did find the movie projector; it had been accidentally moved to another closet. I made sure that everyone in the house knows where it belongs and each person has promised to not move it.
I had assumed that because of the epilepsy and his anti-seizure medicines, Nick couldn’t tell the difference between a hallucination and reality. I thought that this was a realistic idea because sometimes in the past he wasn’t able to. What I learned is that I need to investigate each situation, because sometimes Nick is right!
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