- First of all, Orrin Devinsky and Daniel Friedman are huge in the pediatric epilepsy world, and I know both of them. I haven't seen either in as many years as I've lived in Los Angeles, but they are excellent doctors and good people.
- I'm immediately put off by the line drawing that accompanies the article -- a Cure All Magical Elixir -- and its implication that there's something fishy going on.
- The rest of the piece is patent bullshit and makes me despair again over the vast and seemingly irreparable rift between the professional epilepsy world and the rest of us -- the caregivers of these kids with refractory seizures.
- My daughter has been on twenty drugs in as many years and not a single one of them has done anything to control her seizures or heal her in any way. In fact, most of them have caused her harm: discomfort, pain, irritability, anorexia, systemic abnormalities, headaches, ataxia, more and different seizures, nausea and the risk of death. In the short term and over the long term.
- On Charlotte's Web Sophie is now having no seizures for weeks at a time. For the first time in her life. Unless Sophie has been faking multiple seizures a day for her entire life, this is no placebo.
- If Sophie were to die, five years from now -- hell, TWO years from now or even several months from now -- because of the "long-term effects of medical marijuana," I would be grateful that she had those days or months or years free of seizures for the first time in her life and in the life of her two brothers who have watched her seize daily for their entire twelve and fifteen years. I am decidedly NOT grateful for the life that the so-called "studied medications" have allowed her to live.
- Devinsky and Friedman state their concerns for the long term effects of medical marijuana on the child's brain. I understand their concerns, and I understand it's in their interest -- and the hundreds of thousands of children with epilepsy's interest -- to study this plant, but when they write this: Where is the data showing that marijuana is effective for epilepsy? Although parents may report improvements in their children, it is important to remember that the placebo response is powerful, and the placebo response is greater in pediatric than adult studies. Before more children are exposed to potential risks, before more desperate families uproot themselves and spend their life savings on unproven miracle marijuana cures, we need objective data from randomized placebo-controlled trials I feel the condescension that I have grown to expect dripping from their mouths, the page, the screen, the universe they live in and have lived in as long as I began navigating it on June 14th, 1995. I have an unequivocal lack of confidence in that universe.
- I am glad that Devinsky and Friedman are appealing to the federal government to remove marijuana from its draconian place as a Schedule 1 drug, but this train has left the station and, given the tone of this piece, frankly, I don't give a flying foo-foo what the Almighty Neurology World thinks.
I'm not just seeing. I'm spitting stars.