Not at her best

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Post-seizure snooze on Mummy

I haven’t written on my blog for a couple of months now, but I think I needed a break. While nothing dramatic has happened, Miss Z has been… challenging. And frankly, it has worn me out.

To recap the past few months, Miss Z’s seizures have gone a bit crazy. The number of seizures has slowly been increasing since the start of the year, but recently she’s been having up to five or six a day (and those are just the ones we know about, I’m sure we are missing more).

After a particularly bad day in which Miss Z had two seizures that required Midazolam, as well as 3 others, our neurologist scheduled her to be admitted for a 24-hour EEG and full check-up to see if we could figure out what was going on.

For the first time EVER, Miss Z cooperated and actually had several seizures while hooked up to the EEG (usually being hooked up the EEG guarantees she’ll go seizure-free until they take the probes off). Unfortunately, it didn’t really give her neurologist much clue about what was happening – apart from confirming that she was having seizures. So, we left the hospital with a plan to increase significantly the dosage of her newest medication, Lamotrigine.

Along with the increased seizures, Miss Z also began to have some new behaviours. The first was repetitively doing the same actions, over and over again. QB and I call it being “stuck in the loop”. Usually, she rolls onto her back and begins to kick both feet followed by moving her right wrist in a circle up near her head, then kick, kick, circle.

That doesn’t sound so bad, right?

Except that there is no eye contact and no interaction with other people or things – she is completely in a world of her own. And it is nearly impossible to snap her out of it. Talking to her doesn’t help. If I hold her hand or foot still, she’ll pull it away and continue the repetitions. If I sit her up or roll her over, she jackknifes until she’s back on her back and can start the repetitive actions again.

To make matters worse, she seemed to get stuck in the loop every night when she went to bed. And she would do the actions over and over again for hours. She seemed trapped in the movements – it was clear that she wasn’t enjoying doing it. I would think she’d settled to sleep, only to check on her in bed and discover her bathed in sweat, frothing at the mouth, eyes wide and frustrated because she’d been looping for an hour or more.

The second behaviour that developed was tantrums. And not just any tantrums, but screaming, howling, out-of-the-blue tantrums where she was completely inconsolable. She would bite her hand, scratch her ears, pull her hair and shriek to the heavens for what seemed like hours for no apparent reason.

Miss Z has always had tantrums or “hissy fits” as we like to call them. They mostly stem from her being frustrated, bored or uncomfortable and not being able to communicate it to us in any other way. But the frustration tantrums are always easily resolved – change her position, give her attention, turn on ABBA, or give her a cuddle and she’ll be happy. These new tantrums, however, seem to need to run their course. And sometimes once they’re finished, she has a seizure, which makes me think perhaps she can feel it coming.

The good news, possibly, is that we might be making some very slow progress. Possibly. She is being weaned off the Lamotrigine, since if anything her seizures have increased on it, and has started Zonisamide. Since then, the number of seizures have decreased to one or two most days. Although she still has a seizure lasting over five minutes (hence requiring Midazolam) once or twice a week.

She also seems to have become less stuck in “the loop” lately, too. And I’ve started giving her Melatonin to help her get to sleep at night. I’m not convinced it makes a huge difference, but at least she isn’t staying up for hours doing repetitive movements anymore.

The tantrums, unfortunately, are still there, although more of them now seem to be able to be resolved with some attention or a change of position. I’ve begun bulk-buying spiky sensory gloves, which she wears inside out to help soothe her, give her additional sensory feedback and protect her hands from the biting.

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Seriously, Miss Z loves wearing these inside out

Still, she’s had three seizures today – one of which ran 6 minutes and required Midazolam to stop it. So it doesn’t always feel like we’re actually making progress.

 

The problem with seizures is that it is never clear what to do. Even neurologists admit that they’re not sure what will and won’t work, and for most things, all you can do is try. And nothing works overnight. It all requires a gradual process of increasing and decreasing medication levels over the course of weeks, or sometimes months. And when do you decide something isn’t working, and when do you wait and see?

Miss Z’s neurologist and nurses admonish me with “say when it gets too much”. But it is much harder if Miss Z is admitted to hospital than if we manage at home. After all, we’ve been dealing with her seizures for nearly six years now. QB and I are a well-oiled seizure management machine.

So, for now we’ll carry on. We’ll hold out to see how this new medication goes. I’ll keep my eye on her, my phone close at hand (don’t even ask about the seizure at school when I’d left my phone upstairs and the school couldn’t reach me) and never set foot outside the door without a stash of Z’s rescue meds on me.  And I’ll keep working towards some alternative options we might be able to try.  With Miss Z’s seizures, all you can do is keep trying until something works – I just hope that something comes along soon.

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