Although she is technically doing well developmentally, Ez has been off for the last few weeks. She has been sleeping a lot, which was at first a welcome change from her up all night partying routine, but it is starting to be troubling. Also she has been having some seizure activity break-through her meds…probably since she has been growing again.

While the new growth is exciting, it also means that the levels of her anti-convulsant in her blood may be coming down as she gets bigger, increasing her risk of seizure. If she were at a moderate dose the answer would be simple: increase the dosage a bit until she is covered. However, the answer with Ez is, of course, never that simple. Allow me to explain, and, dear readers, this involves some math, but hang with me. Ez weighs around 24 pounds, that is almost 11 kilograms. Pediatric dosage guidelines for this–the only medication that has ever stopped her seizures and not made her violently ill–are given in two categories: less than 30 kilograms and greater than 30 kilograms. Ezzy is obviously significantly less than 30 kilograms, so until she weighs three times her current weight, the maximum recommended daily dose is 20mg.

Guess what Ezzy’s current dose is?

Drumroll please….Yup. You got it: 20mg.

Essentially, she cannot have a higher dose of this medication.

Now I have understood for some time that this was the case…that the drug that has been nothing short of a miracle for us was not going to hold her forever. I’ve known, but have been able to push this reality from my mind and just enjoy the relatively seizure-free period. That is, until the seizures started last week, and the terror started to sink in.

I’ve tried to avoid this reality because, honestly, the options aren’t great. There is already a long list of medications that have failed my daughter–the one that did nothing, the one that worked for a bit and then stopped leaving us with whiplash, the handful that made her vomit constantly, the one that gave her kidney stones, the one that kept her awake for two days of tremors and tears. All of the these drugs–and their cousins–are off the table for us.

I cannot help but think of them as bodies left in the wake of the violence of Esmé’s epilepsy.

So, what’s left? The drugs that were at the bottom of the list for a reason–concerns about her metabolism, about her developmental progress–and a diet that is contraindicated because of her tendency to produce kidney stones. I’m honestly terrified to try another drug and wait to see what kind of god-awful reaction she’ll have this time.

In some delusional way I hoped that if we just worked hard enough to fund research that an answer might come before we hit the crossroads I’m afraid I see on the horizon. I had also hoped that medical cannabis might be an option for her in our home state before we reached this point. But as I sit here writing this, of course, I know that science does not move that fast…and, while a medical cannabis law has been passed in New York, it will be 18 months before patients can receive treatment.

Hopefully, this is a blip on our radar and this drug isn’t failing my growing girl yet…perhaps by the time it does we will have more options.

But the reality is that every seizure is a threat–to her personality, to her abilities, to her safety…and potentially to her life. And threats like that refuse to be ignored…they are always lurking in the shadows.

One Comment

  • Has anyone, anywhere, ever increased the dosage in someone so small to like 25mg? See if you can find research papers or the clinical trial report about dosaging. Hope Ez doesn't grow too quick for the med!

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