EEG: or, why I’m E(ver so), E(ver so) G(rateful)

I was worried I wouldn’t have a Reasons to be Cheerful post today. I was so in the doldrums yesterday that I never thought I’d be cheerful again. That’s what anxiety does to you.

I’ve said before that I’ve been diagnosed with reactive depression and anxiety. Basically that means that I get sideswiped by the various challenges that face Boo and us as a family. I think…no: I know I am getting better. But this is largely because things, while not always rosy in Boo Land, are on comparatively more of an even keel these days. But I’m still not good with surprises.

Yesterday I got one. Boo had his last EEG in January, less than three weeks after he developed infantile spasms. He had been spasm free for one week but was on high-dose steroids and would be for a further 5. That EEG showed that the hypsarrhythmia (the chaotic brainwaves that led to his diagnosis) had gone. There were signs of asymmetry in his brain waves (the spasms affected only one side of his body, the opposite side to the half of his brain that has the most damage) but it was drastically improved.

We knew he would need another EEG once the steroids were well and truly out of his system (by early May) but I’d put it to the back of my mind. And then yesterday I was called to say it was this morning.

I was supposed to be at work. This was deeply inconvenient, but he needed the scan. And the best part of not having much notice was not having months to worry. But you know what I did? I crammed months of worry into 24 hours.

The last day has been very difficult. It got even more difficult as I tried to keep Boo awake this morning so he’d sleep through the EEG to get the best results. It was worse still when he screamed while they stuck metal to his head and put a net over the top to keep it in place. He looked like a bagged onion. A very red, cross, bagged onion.

But he slept eventually and looked so peaceful. As I waited the seemingly eternal 45 minutes for the test to conclude I looked at Boo and thought how lucky I am and I knew whatever the results showed we’d be OK.

In fact, we are more than OK. There were no hyps or other epileptic signs and no asymmetry. There were some subtle abnormalities, but Boo’s EEG would never be normal so we were told this was nothing to worry about.

The spasms could still come back. They could turn into another form of epilepsy. But for now, he’s fine.

To say I’m cheerful doesn’t cut it. I am ecstatic. And I am grateful for all the lovely tweeps who sent us good luck messages over the last 24 hours. In fact, I am E(ver so), E(ver so) G(rateful).

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10 thoughts on “EEG: or, why I’m E(ver so), E(ver so) G(rateful)

  1. lila

    Beenthere and I am really happy u have god news…. As I say there will b good days and bad dysbut t will always be a bunch of reasons to b grtateful

    My boy is almost 4, 4 full years of up and downs but the happiest years of my life

    Reply

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