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#teammikaere

On keeping my eye on the (Zonisamide) ball

By 24th October 2019 No Comments

I feel urgent. I’m in the car, silently willing traffic to get out of the way. Mikaere’s fine next to me, kicking the shit out of some bells tied to ribbons in front of him.

There’s been a mix up, and I wasn’t top of my game enough to catch it, and now there is all sorts of hustling happening. There are four medications Kai can’t skip. Two for his glycine, and two for his seizures. We’ve recently switched services, a new GP which comes with a new pharmacy.  Except that our new pharmacy doesn’t call you when the medications are in, and also isn’t open on weekends (literally wtf).

So, I’m in a panic because we have exactly one anti-epileptic dose for the weekend, when we need at least four doses. Fuck. Missing them and facing a weekend of seizures (and all the joy that comes with them) is not how I want to spend my weekend.

But the anti-epileptic Mikaere is on is not your typical run of the mill anti-epileptic. That’s because the bog standard seizure medications are contraindicative with NKH.  So, he’s on a medication that’s not licensed for children under 6, and it’s usually down the bottom of the list of what a neurologist would try, because it’s more expensive.  What I’m saying is that it’s not a medication most pharmacy’s have on hand. It’s usually special order.

Conveniently, I called our old pharmacy, who have a box in stock (woo!).  But, to pick up the box, I need a prescription, and our GP is closed. So I call our CCN, who was all hands on deck for someone else’s emergency. Womp. Next step was to call our palliative Care team, who have a backup GP but told me to get in touch with our local hospital as technically we’re not in hospice on a symptom stay, so should be supported by our community team.

So I call the switch board of our local hospital, who put me through to casualty, who told me to ring 1111. I rang 1111 and spoke to a lady who could send a repeat prescription to only specific pharmacies.  Lovely. So I ring the four pharmacies they work with, and none of them have it in stock.

I call 1111 back, and speak to a doctor who took a history. Said that because the medication is usually only recommended for those over the age of 6 (and my son is 2) and so we’d need to be reviewed, with documentation that he’s been prescribed it.

So, I made us an appointment for in 30 minutes. We live 25 minutes away, the next dose is due in 20 minutes, so the three of hustle to get out the door.

Traffic is awful, but we manage. The doctor see’s us right away (and I feel terrible for wasting her time, showing her our latest review letter with medications + doses listed, and with the last prescription receipt) and then we make it to the pharmacy just before it closes.

I make up the dose right there in the car, and the dose is only 15 minutes late.

I’m relieved, but fuck you guys. That was hours and hours of hustle because I didn’t know our local pharmacy isn’t open on weekends.

Hey ho. I’m glad we worked it out in the end.

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