Trying to navigate blind

By 26th August 2020 September 17th, 2020 No Comments

I’m wary about posting this. When there are so many things out of your control, and those same things are basically what makes your heart beat, you become way more superstitious and faith going person than before.

So I’m wary about telling you that Mikaere’s seizures have lessened because the universe might hear and laugh and send more seizures our way.

His seizures haven’t stopped, but the frequency has definitely decreased.

Because the seizures were presenting differently, because they came on so suddenly, because they were relentless, it’s been a stressful few days.

Do we take him in to a&e to be reviewed? No, because all they’ll do is take bloods. They’ll swab for an infection he doesn’t have (because we’re still in isolation, day 164 today) and we won’t get the important plasma results back for two weeks, so going in is basically a risk (cause global pandemic, with little to no benefit). And at that point, it’s on *US* to figure it out.

So we do all the things. We weigh and adjust his meds based on any weight gain, and we video what the new seizures look like (is that movement really a focal seizure? Could it be dystonia? Could it be spastic movements or chorea?)

We go down a rabbit hole of research, reaching out to people we know in the community to understand what it typically looks like, how it’s treated, when it came on for other kids.

Spoiler: not dystonia or spastic movements or chorea.

We check the use by dates on all the meds, make sure the meds are what they say they are on the label, check they’ve been stored correctly and haven’t oxidised.

We try figure out what he might have come into contact with. Is he too hot? Too cold? Is he in pain? Are any of his muscles unbearably tight? Has he lost any range of movement in his limbs that might indicate pain? Are there any rashes or spots or anything that might give an indication?

Is this NKH progression? (I hate considering this, because it means there is nothing we can fix).

And so we sit. With our anxiety, asking Mikaere to please breathe while he’s having a seizure, cuddling him close after, reassuring ourselves that he’s still here, still with us.

We’ve already made the med changes, so we need to wait and see before we make any other changes.

But it’s hard to wait, and it’s hard to just watch and there’s definitely a toll on everyone (it’s hard not to feel like a failure, when you can’t help your kid when they’re suffering).

And slowly, the time between seizures stretched out and the frequency came down and the weird focal seizures went away and the tonics we’re used to seeing took precedence.

But it’s hard to trust this lull. It’s hard not to be on full alert, hard to trust that there might be less seizures today. That we might get awake time and maybe even a smile. It’s hard to relax into this deescalation and trust it will hold, while at the same time desperately wanting it to.

The special needs life, hey? Seizures can suck it.

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