A two hour drive and an exorbitant price - and that was only the start

We finally found a medication that promised help for our neurodivergent daughter. Then came the fine print.

I’ve written about my daughter, Aoife, a few times during my time at Kidspot.

She was diagnosed with Level 3 autism when she was two, and our lives have become a blur of therapies, doctors appointments and the occasional problem behaviour since then.

At our most recent appointment with her paediatrician, we discussed a number of medications that could help us get through some of the rougher periods of having a neurodivergent child.

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We said no to some (risperidone), yes to others (iron supplements), but the one we were keenest for was melatonin.

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Yes, the red arrow was all we got. Picture: Supplied

"She has a tough relationship with sleep"

You see, our daughter has had a tough relationship with sleep. She was great as a baby, sleeping through the night from the age of about four months, but every now and then we’d get periods where she’d refuse to go down anytime before 10pm.

Recently though, that time was blowing out to 11 or 11.30. And it wasn’t a peaceful 11.30, she’d spend most of the evening/night kicking her door, or climbing her windowsill, or trying her darndest to wake up her little brother by any means possible.

It got to a point where we bought a security camera that we rigged up in her room, just so we could keep an eye on her and make sure she wasn’t being too destructive at any given moment in time.

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When we got the prescriptions, we were more than a little annoyed to discover that the melatonin prescription was sent to a chemist in our nearest major city, a two-hour drive away.

Why? It required compounding, and that happened to be the compounding chemist the paediatrician sent the script to.

It took a good few weeks to get the script sent directly to us instead, but that didn’t really solve our problem.

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Despite our annoyance, there's nothing we wouldn't do for our girl. Picture: Supplied

"Two separate 90 minute trips"

We don’t have a compounding chemist where we live. In fact, the closest one is a 45-minute drive away. Sure, not the two hours to the city, but still long enough to be annoying.

And because it took a few days to complete the script, that meant two separate 90-minute round trips for my wife just to get this melatonin.

My biggest shock was saved for when my wife got home with the medication. She showed me a pretty normal looking medication bottle, but you quickly realised the medicine only took up about 10 per cent of the space.

We’d purchased 30mL of melatonin for $45. For those keeping count, that’s $1.50 per mL. It’s very likely the most expensive liquid I’ve ever purchased.

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In the end, the effort and money were all worth it. She's fallen asleep before 7pm four nights in a row. Picture: Supplied

"It feels a lot like a rip off"

We’ve had to buy a lot of specialised items for our daughter. Everything from sensory swings, zip-on mattress covers, the aforementioned security camera, and more childproofing stuff than I realised existed.

Despite all that money, this melatonin felt like the least bang-for-our-buck. $45 for a piddly amount in the bottom of a bottle? It feels a lot like a rip off.

Although, Aoife has gone to sleep before 7pm for the past four nights, so maybe that money was all worth it in the end…

Originally published as A two hour drive and an exorbitant price - and that was only the start