Thursday, May 13, 2010

Why Grandmother, what big eyes you have...

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.


leah said...

An EEG is a good idea to rule out seizures. Nolan was having staring spells and we had a sleep-deprived EEG (not the most fun thing to prepare for, but the test itself was easy). A mom I write to occasionally has a son with partial complex seizures and his only symptom was one pupil getting larger than the other.. so it is a possibility!

It is strange that the docs don't seem to want to follow up on it. Sometimes I think if they don't have an easy answer, they want to pass it off to the next specialist (we've had that with Nolan's strange compilation of symptoms).

Melanie said...

EEG and MRIs are both great ideas. Our kids on the spectrum are so differently-wired from a neuro perspective that at least you'll get a baseline, if nothing else. Sometimes micro-seizures can masquerade as oddly aggressive behavior. A chidl I know has Tourettes and OCD, and absent seizures were the first tipoff about that. Something else to look at is his skin - does he have any lighter-colored or darker-colored patches of skin? I ask because my son has mild tuberous sclerosis, one of the genetic conditions that can go along with autism, and skin markings are a part of that condition. Ask the docs to look his skin over with a Woods lamp - that helped our neuro make a determination about my kid. Good luck!

Amber DBTD said...

It happened again yesterday, but neither doc has called me back yet...

They want to do a slightly sedated EEG (give him the chloral hydrate, if I spelled that right) and do it sleepy. Never had to do a sleep deprived EEG. He's had 4 or 5 of the normal, sleepy EEGs and also had 2 days of inpatient monitored EEG which was horrible. None of it showed anything abnormal though so the docs treated me like I was wasting their time and I felt quite stupid.

What I have noticed in the last 2 days is that both times his pupils go uneven like that, it's late afternoon and he is either very excited or very upset.

Melanie, Jaymes has some of those cafe au lait birthmarks, or whatever they call them... He also has the most horrendous case of eczema from head to toe that is bad enough that his arms and legs are darker with light colored raised bumps all over. Poor kid looks like a crocodile.