Brain Trust

An EEG is a daunting procedure for almost anyone, and you’d imagine that for a two-year-old with autism, it would be intolerable. Not so. John allowed 21 wires to be glued to his head while cradled in my arms. The first 3-4 gave him some anxiety but after he realized I wasn’t going anywhere he put his attention to more important things: Bear in the Big Blue House. Good thing I remembered to tuck along Tutter, Ojo, Bear, Doc Hog, and Shadow in our bag. He even allowed his head to be wrapped in gauze after all were duly attached. His look was one of profound boredom, Oh if you must, just let me watch my video.

Periodially, of course, he would remember that there were 21 wires attached to his head and I would jump up to give him a hug or a tickle to distract him.

We’re trying to rule out seizures as a cause of John’s recent sleep disturbances. The EEG was supposed to try to capture him asleep — this from a boy who hasn’t taken a nap in close to a year. But they can glean a lot of information, they said, from the three hours his brain was monitored. I worry, of course, how he did and did not notice the flashing strobe lights that twirled over him. How he looked forward without blinking.

The whole time, his brother was waiting in the Big Important Hospital’s lobby area. My phone kept beeping with cryptic (Sam hysterical) and not so cryptic (Need diaper) text messages from hubby. Big Important Hospital (or BIH) is close enough to be the obvious place for us to go, but it’s far enough that we tried to schedule as much into the one day as possible. Big mistake.

What were we thinking?
(Oh, did I mention the blood draws? The 4 nurses who had to hold each of them down?)

But we were there, and after the EEG we met with the developmental pediatrician for their follow-ups from last summer’s initial diagnosis. Predictably, Sam scored very well on his tests and was spelling the minute he walked into the room. John, I think, was tired from everything that preceded it and was stimming a lot. It was hard to get him to focus.

But troubling me more is the MRI he had last fall apparently shows a possible abnormality in the cerebellum that we’re just hearing about now. His doctors are sending it to a specialist in Chicago to check out.

A very long day. And two very tired little boys.
But Bear and Tutter saved a good part of it.


Leave a comment
  • I feel for you, sounds like a long difficult day, but the fact that John allowed them to put all those wires on while he was awake, I am very impressed. Roo had his MRI and EEG in one day and they put him out for them.

    Hope all the test come back fine. And glad that you had the videos to help get you through.

  • I just stumbled across your wonderful blog today.
    I have twin boys who are 8 years old and a 5yearold boy with autism. I remember his EEG as not being too pleasent. He was very disagreable. His daddy still has “Post Tramatic Stress” from that.

    Twins are a wonderful handful. Good luck with everything.

    I wish they had done an MRI on my child. I do not think they did enough diagnostics.

  • I’m really impressed that your son tolerated the EEG so well! We saw a neurologist almost 2 years ago and she recommended that one be done for my son for the same reason, to rule out mini-seizures. We scheduled one for the summer of 2005, my son was 6 years old then. At the time, however, I was 5 months pregnant and the hospital was an hour drive away. I knew there was no way that Samuel would make an hour drive without falling asleep after being deprived of sleep the night before!

    To date, we have not rescheduled the EEG. Perhaps once I am done nursing my baby and we can figure out how to overcome the sleep problem we’ll try again! I cannot envision Samuel tolerating all the wires, but he is getting to the age where he will tolerate things better when they are explained ahead of time.

    Good job bringing along things to occupy John!

    By the way, my son had lots of sleep problems at age 2. I spent many late nights with him, or would wake up with him at 3 or 4 in the morning. He missed several days each school year because he would wake up at strange times. His sleep is almost normal now (we just have an established bedtime for all 3 of my boys that’s a bit later than I would like, to accomodate the night owl in Samuel, 9pm). If he wakes up in the middle of the night I can usually talk him into going back to sleep.

  • kjThat sounds like quite a tough day.

    I loved the part about the desperate texting from your husband. And I am happy to hear that the Bear and Tutter were there to support you. A portable DVD player made our trip from Houston to New York totally manageable this Christmas.

    That’s horrible that you didn’t hear anything about the MRI problem until now. Although I hope that means that it didn’t look too serious when they initially reviewed it. Best wishes

  • Kim,

    I just read this carefully again. I hope you will keep us posted on what comes from the cerebellum scan.

    I hope you guys enjoy the long weekend together.



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