Hanging on the telephone

One of the outcomes of the big, multi-disciplinary meeting we had with several of Z’s doctors last month was a decision to push harder for Miss Z to join the medical cannabis trial that is starting in Queensland.

For those of you who might not follow the developments in the treatment of intractable epilepsy, it has been discovered that medical cannabis can reduce seizures and increase cognitive function in some kids with uncontrolled seizures. After a long battle in Australia, the use of medical cannabis has been legalised – hurrah!

However, there are still some hurdles to obtaining it, and when you can get it, the cost can be prohibitive (unless you’re buying from unregistered suppliers).

All the doctors I’ve spoken with are confident that within a few years, medical cannabis will be available for epilepsy as readily as any other antiepileptic medication. However, until then, the easiest and safest way to access it is through a medical trial.

So, when I heard that the Lady Cilento Children’s Hospital, where Z receives her medical care, was going to run a medical trial called the Compassionate Access Scheme, I signed her up – along with pretty much every other parent of a child with uncontrolled epilepsy in Queensland. Our neurologist was a bit skeptical at first – mainly because it isn’t a real scientific trial – all the kids receive the medical cannabis oil, no one gets a placebo. However, the promising early results made her decide that Z would indeed be a good candidate.

A week after our multi-disciplinary meeting, I got a call from the trial to arrange an appointment for Miss Z. I was so excited that I immediately took to Facebook, declaring Z had been accepted into the trial. Cue lots of celebration.

Alas, I was a bit premature. The appointment, it turned out, was only step one to joining the trial. And I also found out some fairly surprising news – that only 30 children across Queensland would be chosen for the trial. Only 30!

Miss Z was her typical self during the appointment. She was seriously unimpressed about being dragged into an early morning hospital appointment on her school holidays. So, she scowled at the doctor, and grizzled, and tried to kick him when he examined her. There was none of her typical Z-charm was on show that morning. In fact, the doctor asked me if she was always “so distressed” – which I tried to answer honestly without actually saying “no, it’s just you”.

The appointment established that Miss Z definitely qualified for the Compassionate Access Scheme. However, the next step is that her case – and those of other candidates – would be considered by a panel of doctors who would choose which children would be offered a place on the trial. If we aren’t offered a place on the trial, then we can go on the waitlist, so that we may be offered a place if another child drops out.

I left the appointment with a grumpy child (who cheered up immediately once we left the doctor’s office) and a promise that they would contact me when the panel had made its decision.

And so, now we wait. I feel like someone who has just been on a first date and is waiting to see if he liked me enough to ask me out again. Seriously. Did he like us? Will he choose us? Will he call?

I’ve even resorted to getting my friends to ask his friends if he is planning to call – although instead of friends, I’ve used nurses and her neurologist to try to find out when a decision might be made. QB is like my bestie, reassuring me that the doctor will call me – after all, I did three pages of seizure charts and graphs for him!

I keep running through the appointment in my head, thinking of how I could have made Miss Z’s case more compelling, better arguments for why she needs the treatment, examples of what she can achieve when she isn’t suffering multiple seizures a day.

Logically, I know the decision isn’t going to be made because he likes or dislikes Z, it will be on a medical basis, considering things like contra-indications with the drugs she currently takes, the risk of side effects and the options still available to us. But I still can’t help but feel like we are party of a beauty parade.

And is it even something we want to win? If she gets on the trial, it will be a big, fat declaration that yes, Z’s seizures really are that bad. It can be difficult to know what is bad versus manageable when you have a child with uncontrolled epilepsy. What is bad for her might not be so bad for another child, or vice versa.

Plus, despite positive results for some kids, it is important to remember that it doesn’t work for everyone. Medical cannabis is like the Ketogenic diet or the vast range of anti-epileptic medication Z has taken since she was 6 months old – it works great for some, OK for others, and not at all for others. And there is no way to know if it will work for Z until we try it.

So, I keep my phone close and wait to see if we get a second date.

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Sleepiness is one of the side effects of seizures for Z. If she has a big seizure or a cluster of them, she will often spend the rest of the day sleeping.

 

 

 

 

 

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