I'm a day late on this topic, mostly because I have been totally exhausted, but I figure a day late is better than a month late, right?
We have a lovely trip to the ER the other night with Jaymes, yet another one of those "sit for 6 hours and learn NOTHING" visits. Long story short, we had been at therapy. Jaymes had finished PT and was wreaking havoc in the waiting room waiting for his OT session. I asked him to not move the table, he ignored me, so I went and picked him up and made him sit with me. He went into one of his rage modes (in keeping with the weird behavior for the last few weeks) and bit me once, then punched me until I held his hands so he couldn't do it anymore. He screamed a few times, then curled up and went to sleep in my lap. He woke up a little bit later, when his therapist came out to get him. She noticed (his back was to me, so I didn't see it) that his eyes looked funny- one pupil was tiny and the other was huge. We kind of watched him during the session, and she didn't do any of the usual high energy stuff like the trampoline or ball pit. He was a lot calmer than usual, and he wrote some very nice "m's" A the end of his session, his eyes were still like that, so she suggested I call the doctor and see what they thought. Called Dr. Klinepeter's after hours answering service because Jaymes had had an appointment that morning with his physician's assistant (and his eyes had been normal then). He told me to take him to the ER to be seen, because his eyes changing like that for no apparent reason, coupled with his strange behavior lately, was cause for concern.
So we sat for about six hours while doctor after doctor came in and said (and I quote) "I'm stumped." Each doctor told us the same thing, that they would send in someone else. Finally they said that because he would have to be sedated, diagnostics like an MRI/scan of any kind would be out at that time of night, and that there was nothing anyone could do.
Jaymes was very much not himself until about an hour before he was discharged from the ER. He sat with me, was absolutely panicked if anyone looked at him, and refused to eat or drink. I know that stuff is kind of minor, but he really wasn't himself. The doctors had to examine him while he shrieked in panic. Not fun.
Anyway, they did an EKG, and his heart is fine (thank god!) and they'll schedule him for an EEG to see if there is any seizure activity. But at this point, nobody knows why his eyes changed, and there isn't really much interest (doctor-wise) in pursuing it.
This is the 2nd time Jaymes' pupils have done this, the first time was in 2008, when he passed out during a walk. When he woke up, his pupils were different. Nobody knew what caused that, either. I am SO frustrated that these doctors can't figure out what's going on with him, and that they don't even seem concerned. I'm sorry, but his pupils doing that plus the total change in personality in the last few weeks REALLY bothers me. That cannot be normal.
Anyway, we're watching him now, hopefully nothing happens and he'll go back to normal for good. His eyes are normal again at least.
Finally, a diagnosis and a plan. Of sorts.
5 days ago