The Writing on the Web

An electrical cord has somehow twisted around his neck. He lies on his back, his arms pinned behind him underneath his convulsing body. His head is smashed at a right angle against the wall and there is so much froth in his throat he is choking on it. This is how I find my son.

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A quick online search yields a list of over 20 anticonvulsant/antiepileptic drugs on the market, and the long-term use of many of them can compromise the health of the liver. Take into account that some people need to take more than one of them (either because one seizure med is not enough or because they have both epilepsy and bipolar, and one anticonvulsant is not enough to keep mania in check), and it’s definitely cause for concern.

My son Neil fits into the latter category. Some people with bipolar find that an anticonvulsant works to stabilize them, and others don’t. He needs an anticonvulsant to treat his epilepsy and lithium to control his mania. Both are hard on the liver, and not a day goes by that I don’t hope for another option, something that manages his disorders without compromising his physical health.

I have been considering the use of Charlotte’s Web for treatment of his seizures (for those unfamiliar, Charlotte’s Web is a high cannabidiol (CBD), low tetrahydrocannabinol (THC) Cannabis extract. It does not induce the high of recreational marijuana strains that are high In THC). In the past week I have talked with the parents of two different clients of mine about the success they’ve seen with their adult children taking this medication. There are many other parents who’ve experienced remarkable results with their children who have epilepsy. However, even with plenty of success stories, a position statement by the American Epilepsy Society maintains:

“The recent anecdotal reports of positive effects of the marijuana derivative cannabidiol for some individuals with treatment-resistant epilepsy give reason for hope. However, we must remember that these are only anecdotal reports, and robust scientific evidence for the use of marijuana is lacking… at present, the epilepsy community does not know if marijuana is a safe and effective treatment, nor do they know the long-term effects that marijuana will have on learning, memory and behavior, especially in infants and young children.”

The italics in that quote are my own; I find it ironic that AES would say this. Long-term seizure activity already negatively affects cognitive function, including learning, memory, and behavior, hence the urgency to prevent seizures from happening. And if pharmaceuticals aren’t effective, resulting in more seizures, wouldn’t we want to do something different? Yes, it’s true we don’t know the long-term effects of Charlotte’s Web. But when weighing the consequences of using an undeniably effective non-pharmaceutical treatment that we don’t know the long-term effects of versus the consequences of continued seizure activity – which we do know the long-term effects of – I’ll take the former.

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I don’t know how long this massive grand mal seizure had lasted. And I don’t want to think about what would have been the outcome if he hadn’t been at my house when it happened, or if at that moment I hadn’t gone upstairs to ask him something. He was unconscious and choking on his own bodily fluids. He would have died. He hadn’t had a seizure in over three years and I assumed that he would continue to be seizure-free. But the fact is that the effectiveness of a medication can diminish over time. And Neil is living proof of that. Living.