As I alluded to here, we've had some Epidiolex excitement.
When we last left our heroes, we'd been told M hadn't been approved for Epidiolex due to his age and the FDA approval only being for age 2 and up.
I did what has become annoyingly routine lately and called up our insurance case manager to ask her about it. She used to be a nurse in the epilepsy ward at our Children's Hospital where M's team is, so she's well versed in what we're facing and what we need - as employees of insurance companies go, she's definitely one of the more helpful ones. She's helped us navigate a lot of other medication-related questions, so I sent her a note asking how soon before M's second birthday we could re-apply for authorization on Epidiolex; since it can take 4-6 weeks, we would ideally queue it up so he could start literally the day of his birthday.
She replied, "What do you mean, you were denied? We never got a request to authorize. I just had the pharmacist run a test claim and it was approved."
Well, huh.
So I went back to M's doctors, told them about the conversation I'd just had, and asked what was up. It turns out that *they* had decided he was unlikely to be approved for it - since Epidiolex is still quite new and not without controversy, many insurance companies have denied any use of it outside of the FDA guidance - and so they didn't try. Which, don't get me wrong, is its own thing, but as soon as I said "well my case manager says it will be approved, can you try it?" they ran it through, we had approval a few days later, talked over the dosing plan with the nurse, and started the process of working with the specialty pharmacy to get our first delivery.
Epidiolex, you may recall, is the first FDA-approved medication based on cannabis, and the first ever approved treatment specifically for Dravet (as well as another rare, difficult-to-treat epilepsy called Lenox-Gastaut Syndrome). Of all the claimed positive effects of CBD you hear these days, this is the only one that has passed controlled clinical trial muster. Pretty while. For years, desperate parents were using retail CBD oils like Charlotte's Web (named after a little girl with Dravet, actually) and Hayleigh's Hope, but they are expensive, not available/legal in all states, dosing information came from the manufacturers who were not experts in epilepsy, concentrations were not always consistent, and obviously not at all covered by insurance or officially supported by doctors. Having and FDA-approved version changes all of that, so it's incredibly exciting - not to mention the potential benefits for seizure control and the either caused or correlated cognitive development improvements many other Dravet families have seen with it.
Faced with the opportunity to try out Epidiolex and over time use it to replace his Keppra - which we aren't even sure does anything, since nothing improved after he went on it (then again, nothing got worse), we felt we had to give it a try, especially if it could help him cognitively.
A week before our delivery, we had an appointment with M's keto team, who were really pleased with his seizure control and overall stability on the increased keto ratio, and they - we thought - *asked* if we'd consider delaying introduction of Epidiolex in order to see if his current medication and keto ratio can carry him through further illnesses successfully. After talking about it at home, we still felt like we had to try it if we thought it would help fight the cognitive delays, so the day our delivery arrived I left a message for his medical team to let them know we planned to proceed. I even posted on Facebook about how excited we were.
They called back the next day to let me know that actually, they weren't really *asking* us to delay, they were *telling* us to delay, and that they very very very strongly recommended that we not start.
I had a pretty strong initial reaction to this, but the more I thought about it, the more conflicted I felt. I posted about our situation to the Dravet parent Facebook group to get advice, mostly expecting to hear "It's your kid! You know best! Go with your gut!" Instead, while I heard a lot of people confirming that they saw improvement with their kids, the overwhelming response was, good lord, if you have seizure control right now, do not mess with that.
That surprised me, but it made a lot of sense. Dravet seizures are defined by being very resistant to available anti-seizure medications, and some kids have failed double digit numbers of medications and treatments - we're extraordinarily lucky to be where we are right now on literally the first two treatments we've tried. Another great point someone brought up was that another characteristic of Dravet is that the syndrome evolves over time, and what works now often doesn't work two years later, so we should leave our options open - if we think he'll respond well to Epidiolex, let's find that out when Keppra and keto aren't working anymore, rather than his body getting used to it now and potentially eliminating a low-side-effect option for the future. Fair. Very fair.
So as much of a letdown as it is to have been so excited about the Epidiolex, and then to have the plan change literally the first 24 hours it was in our possession, I do think this is the right decision.
You know, sometimes I really miss the days where the biggest medical decision I had to make for my kids was whether an ear infection was worth antibiotics or not.
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