Seizures returned but EEG shows surprising improvement

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With cannabis oil, Lydia had a dramatic reprieve from seizures for two weeks. On day 14 however, her seizure count skyrocketed into the hundreds – higher we’d ever seen. We were bewildered. What happened? Was it the mythical “honeymoon phase” where something works at first and then the seizures return anyway? (This apparently happens with pharmaceuticals too). We were terrified we’d made things worse by giving her the cannabis oil. We stopped giving it to her for about half a day. But the question nagged us – what if she had simply developed a tolerance and could still be helped? We steeled our nerves and doubled down – increased her dose by 250% and tried again. Luckily she didn’t get any worse. However it was clear the oil had stopped working for her.

So if it wasn’t tolerance, what caused the oil to stop working? There is a theory that is summarized below: (http://www.epilepsy.com/article/2014/3/tolerance-and-honeymoon-effect)

“Besides tolerance, the honeymoon effect probably also involves some adaptation by the epilepsy process itself. How this process works is still speculation. One theory involves the way abnormal brain activity spreads. Seizure activity originates in a core area of abnormal brain tissue, called the seizure focus. Sometimes the abnormality is structural, as in the case of a scar from a head injury, an area of prior surgery, or an abnormal cell pattern that developed before birth. Even a seizure focus without an apparent structural difference will be marked by some disorder of chemical and electrical function. The abnormal electrical activity that the seizure focus generates needs to be dispersed or spread. In an ideal world, antiepileptic drugs would restore the normal balance and quiet the seizure focus so that no abnormal electrical activity is produced. In reality, however, it is likely that in many cases antiepileptic drugs are simply keeping the abnormal electrical activity from spreading out of the seizure focus, so that other areas of the brain are not affected. In some of these cases, the abnormal activity never disappears but instead is always there, trying to find a way out. One theory about the honeymoon effect is that if the abnormal seizure waves keep pushing over and over against the walls of resistance raised by natural brain processes and the beneficial effects of antiepileptic drugs, eventually they may find a way (or create one) through which they can spread beyond the seizure focus. Thus after some time, the seizures return —the honeymoon effect.”

But we are not back to square one. The doctors said we wouldn’t change her seizures and we did. We proved that her epilepsy is not intractable. She was nearly seizure-free for two weeks. Also, things are different now. She retained the gains she made during those two weeks and remains more alert, moves more, smiles more than she did before. Even her seizures are different. Although she’s having so many seizures, they are like micro-storms: short, two-second twitches and a flicking of her eyes to the left. There is no gasping, no tight clutching of her fists, and no minutes-long clusters like there were before.

Our neurologist (a different one from the last post) has been kindly supportive of our cannabis trials and commented that although there is not enough research on the use of cannabis for seizures, “Lydia looks more alert than she ever has.” We appreciated that. He ordered an EEG given her recent change in seizure activity. We appreciated that too. In fact, let me just put out there that this neurologist is pure gold. He’s been nothing but respectful of our choices even if he doesn’t always agree and we are so grateful to him for that.

Perhaps most interesting of all is the comparison of Lydia’s last EEG to the one we had three days ago. On the left you can see her brain activity as it was about nine months ago. The lines are big, crossing squiggles going all over the place. Not good. On the right, you can see her brain activity as it is since the cannabis oil. (Actually she had been off the oils for several days before the recent EEG). The lines are a little bit less chaotic. Still not good…but they are better! And that is remarkable.

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So what does this mean? We have no idea. What’s next? Well, there are many more cohorts of cannabis oil to try and if we could find another gem…it is worth trying. Our neurologist has also convinced us to start a low-level of ONFI for Lydia, so we will do that soon. No one knows if anything will ever work for her. So I’m back to making wishes on stray eyelashes, first stars of the night, and heads-up pennies. Lydia’s seizure relief is the only thing I ever wish for anymore. With a bit of luck maybe it will happen again someday.

Thank you to everyone, for your support as always.

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