Pot vs Pills

We are poised to try out a medical marijuana program in Eugene, Oregon. However Lydia’s seizure intensity and frequency have increased recently and her neurologist would like to add ONFI to her regimen as soon as possible. To limit drug interactions and evaluate efficacy, we would like to start one without the other. But which one?

In a way, this is a good time and possibly our only chance to try marijuana for Lydia. She is on one pharmaceutical right now which probably won’t happen again for at least a year, if not several. But the chances of marijuana reducing her seizures might not be all that great. From a recent report:

Medscape: Initial Data on ‘Pharma Grade’ Cannabidiol in Epilepsy

Kevin Chapman MD, University of Colorado, Aurora … “There has been much discussion on the Internet and in the media about how medical marijuana is a miracle and children having the most intractable forms of epilepsy are becoming seizure-free,” he said. “But our data suggests that it is not as effective as these reports have suggested.”

The article suggests CBD in marijuana might help reduce seizures in about 30-40% of patients. Sigh. Those were the same odds for the Ketogenic Diet and the VNS…which haven’t worked.

Still, there’s nothing else to do but bash on and keep trying stuff. I’m not scared of pediatric marijuana or even getting Lydia high if it helps her. Actually in some ways I’m more hesitant of getting Lydia started on ONFI, a benzodiazepine. You know, like Drugstore-Cowboy/I-wanna-be-sedated/celebrity-addiction stuff. Ala Whitney Houston. Then again ONFI is somewhere between Xanax and Valium which people do take semi-safely (though not usual on a daily basis and not if they want to remember their own names by the age of 70). Whatever, I’m all for it if it works. I think. My real fear is that is a gateway drug, not so much for Lydia as she’ll take whatever we give her, but for the doctors. Once we get back on the pharm train, will we have opened Pandora’s pill box and will we be able to slow down before Lydia is wrapped in a wooly semi-coma of crushed pills in milk?

Sounds like I’m leaning try the marijuana program doesn’t it? I guess we will. In 30 days we should know pretty well how it works for her. I admit, I have very little hope of controlling her seizures. I expect we’ll have her on ONFI soon after the marijuana trial. Whatever happens I will keep you posted.

Your support out there really does help.

Thanks for listening.

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