We fortunately made it through the night with nothing worse than an extremely unhappy cranky toddler who can't comfortably breathe through his nose, which is its own unpleasantness, but certainly not as bad as it could have been! This seems to be the same thing my husband had earlier this week that resolved in around 36 hours, so fingers crossed the same is true for M and that there is no excitement today either.
We've been having some "fun" lately with various medicine issue.
First off, as we've mentioned before, M can't have the liquid ibuprofen most kids his age take, because of the high amount of carbohydrate in it. Our options are cutting an adult pill and half and getting him to swallow it (which he actually has managed to become quite good at, even though neither of us enjoys the process) or waiting until we can get our compounding pharmacist to make up a keto-friendly liquid... but that takes time, and only has a shelf life of 2 weeks, so if we think he only needs a dose or two it's not worth it. We would ideally like to be able to give him a suppository version as we can with Tylenol, but there is no suppository version of ibuprofen available in the US.
We've previously lived in Australia, where there the similar drug is Neurofen, and we knew we'd seen suppositories there - so we starting working on asking some friends or family there to send us some. Except some time in the last few months Neurofen decided that there wasn't enough interest in Australia for the suppositories, so they stopped producing them.
Fortunately, Neurofen does still produce them in Europe, and we have friends who live there and work with people who regularly travel back and forth to the US, so we are now in possession of a few boxes that we've made good use of over the last couple of days. (Shout out to those friends - you know who you are!) M responds so much better to ibuprofen/Neurofen than he does to Tylenol that we're really grateful to have another option to keep him dosed. That being said, it's pretty ridiculous that we have to go to these lengths to get something that works for us.
The other frustration is Epidiolex. Epidiolex is a notable drug for two reasons: first, it is the first drug ever approved specifically for the treatment of seizures associated with Dravet Syndrome (and one other rare genetic epilepsy syndrome). Secondly, it is the first FDA-approved medication derived from marijuana.
Communities of caregivers of kids with severe, difficult-to-treat epilepsies are willing to try almost anything in or out of the mainstream, and through this trial and error a few folks started to discover - as medical marijuana came into vogue - that CBD oil seemed to make a huge difference to their kids. This went on informally (and questionably legally) for years, in the US and in other countries, as desperate caregivers did whatever they could to keep their kids on what they found was finally an effective treatment. In the last several years as the potential of medical marijuana has made it into the mainstream, a pharma company started double blind clinical trials with CBD oil and confirmed that it did, in fact, do exactly what people had been seeing: it improved the frequency and severity of seizures for many patients with Dravet. The FDA approved it last year in a landmark decision.
We heard about it from another parent as soon as M was diagnosed with his mutation, and it's been in our minds for a while. The Keppra he's on right now doesn't seem to have many negative side effects as it can for many people, but we also can't tell whether it's *doing* anything; on Keppra alone his seizure profiles and triggers haven't shown any change. The keto diet has definitely helped, but his neurologist - who sees a lot of Dravet patients - says her gut feeling is he will always need at least two medications (of which keto counts as one) to maintain good seizure control. At his last appointment, she recommended we try to swap the Keppra for Epidiolex.
We were excited by the prospect, and agreed to move forward with the lengthy approval process. Not all insurances will cover it, and due to its makeup it has to be mail ordered from specialty pharmacies.
Unfortunately, we got a call yesterday saying our insurance is denying it for him right now, because the FDA approval was for kids above the age of 2 and he is only 18 months. There are kids under age 2 who are on it via a "compassionate use" waiver, but that generally requires that the patient has failed four or more other treatment options... and we haven't tried the others yet. (And we hope not to, as the traditional cocktails used for Dravet have often been observed to have negative cognitive effects and are extremely hard to wean)
So it's not the end of the world, we'll just wait another six months, but it feels like an eternity when there's such a promising treatment out there.
In other news, once he's on both keto and CBD oil, he'll be full qualified to be an insufferable techbro. So he's got that going for him.
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