As I mentioned earlier this year, Miss Z was chosen for a trial of Epidiolex, a medical cannabis oil. Queensland is currently running a trial of Epidiolex for children with treatment-resistant epilepsy (in other words, seizures that aren’t able to be controlled by other means).
Epidiolex is a pure plant-derived cannabidiol (CBD). It doesn’t contain THC, which is the compound in cannabis that makes you high. It is produced by a small US-based pharmaceutical company. It comes as an oil, which we give through Miss Z’s gastrostomy tube.
Although cannabis for medical use is technically legal in Australia, it can be difficult to obtain and prohibitively expensive. The medical trial only takes a very small number of children – and as you can imagine, the demand is high. So, we are incredibly grateful that Miss Z was accepted.
I’ve tried to approach the trial with an open mind. Medical cannabis is not a cure. Nor is it a sure thing to stop her seizures. It is another drug that has the potential to reduce her seizures, and in doing so, help improve her cognition and awareness.
It was a long process to be accepted on the trial. First, we were referred by Miss Z’s regular neurologist. Then, I met with the neurologist who is running the trial and he examined Miss Z. Then our case was put before a panel of doctors and medical ethicists who have been tasked with selecting candidates for the trial.
Once Miss Z was approved by the panel, we had another appointment with the neurologist and the nurse running the trial to go through all the paperwork. Then Miss Z had blood tests and a 24-hour video EEG (which tracks her brain waves and seizure activity). It was typical hospital stuff – lots of waiting, followed by a flurry of activity, and then more waiting.
Miss Z’s liver function test came back slightly elevated. Not high enough to be concerned normally, but too high to start on the Epidiolex under the rules of the trial. So, we had three weeks of weaning down one of her anti-seizure medications (that also affects the liver) and then more blood tests.
After a few months of tests and waiting, the start of the trial was a bit of an anticlimax. Miss Z and I met with the neurologist who explained how he planned to increase Miss Z’s dose over the course of four weeks and answered a few last minute questions. Then we were sent to the pharmacy where the pharmacist working with the trial gave me the low-down on how to administer the drug, how to store it, things to watch out for, and what to do if something went wrong. Interestingly, one of the requirements of the trial is that I have to return all empty bottles and unused medication to the hospital pharmacy because demand for medical cannabis is so great, they are concerned about them ending up on the black market.
We were sent home with two bottles of Epidiolex and a schedule of scaling up the dose each week. The next morning I gave Miss Z her first dose.
That was four weeks ago. So, I can hear you asking, “is it working?!”
So far, I’m cautiously optimistic. Miss Z’s seizures have reduced considerably. She was actually in a “good patch” when she started on the trial, but seems to have improved even further. In the past four weeks, she has had probably four or five seizures – none of which have required rescue medication. Of course, this could be just a “very good patch” for her, but I’m hopeful that it is the effect of the Epidiolex.
Her episodes where she goes stiff and vacant and doesn’t sleep for long periods of time (we aren’t sure what they are because we haven’t captured one on an EEG – might be a seizure or something else entirely) have also decreased in frequency and episode’s length of time.
She also seems to be more alert. She turns her head to look at people when they speak to her or walk past – something she has rarely done in the past. She has stopped sleeping late into the morning and now wakes up around 7am (I’m not entirely convinced this is a good thing!). She is also more active and now rolls herself from one side to her back to the other side – something she didn’t do a month ago.
And best of all, she is cheerful. The medication definitely didn’t cure her from grumpiness – she can still get cranky with the best of them – but she seems more settled and happy in herself. She has been on Christmas/summer holiday from school and has noticeably enjoyed spending time with her sister. And because Vegemite is getting more feedback from Miss Z, she is enjoying playing her her as well. That has really been the best part our of Christmas break – watching the two of them spending time together.
There is still a downside. The Epidiolex has made Miss Z sleepy and there have been days were Z has spent more time asleep than awake.
It also has had no effect on Miss Z’s movements – where she will suddenly freeze and go very stiff for up to 30 seconds before her body relaxes again. They aren’t seizures, but they have a neurological cause, so the neurologist and I were hoping the Epidiolex might reduce them. So far, it hasn’t.
And there is another reason for cautious optimism. Some children on the trial have initially shown positive results, only for them to slowly dissapate over time. So, Miss Z’s progress may not last over the longer term.
I am trying not to think too much about the downsides of the trial. Nothing about Miss Z and her life is certain. So, for now, we are enjoying the brighter, happier Miss Z. May we have much more in 2018!