Am I willing to try something that the FDA hasn't approved
and big Pharma doesn't control (yet)?
You bet I am.
You can also bet I'm not going to report it's working if it's not.
You're not going to get away with insulting my ability to ascertain a reduction in seizures.
" Mom reports" is not a phrase worthy of eye- rolling.
I know when I'm not seeing seizures.
You KNOW that!
I'm not done chastising Dr. Amy Brooks-Kayal and her ridiculous statements made throughout the Dateline special Raising Hope that we all watched last night. I've been mulling over them all day, to tell you the truth, especially while pushing my daughter in her wheelchair through the leafy streets of my neighborhood. We cut a tiny amount of Sophie's Onfi about three weeks ago, and just as it's happened every time we've weaned, she's experiencing some dreadful side effects. These include agitation, discomfort and excessive drooling. She has a tremor and some weakness, as well as what I call withdrawal seizures.
I almost don't want to repeat a couple of Brooks-Kayal's statements because they were so -- let's call a spade a spade -- stupid. Beyond the usual call for more research (which we all want and which wouldn't be going on at all if a shitload of parents hadn't initiated this whole thing), she made some patently false claims about the Powers That Be concerns. She wondered what if it helps the seizures but makes your life worse? Even allowing for bad television editing, that was a loaded sentence that makes a mockery of the suffering our children have endured. She dismissed anecdote quite smugly and spoke of the placebo effect. My regular readers might remember that this line of smuggery was directed at me when I participated on a cannabis panel at the Epilepsy Foundation's Brain Summit a couple of months ago. I imagine that some of you might have thought that my emotions ran high, that a lot of our objections are knee-jerk ones. Surely these people aren't that arrogant? you might have thought. I'm secretly glad that Brooks-Kayal said what she said last night because it affirms what many of the people involved in this fight have experienced. These people really do think these things or they are, at the very least, spouting a party line.
Read the post that I quoted from above, written by my friend Mary Lou Connelly. She has a 30 year old son who has had refractory epilepsy for most of his life and who currently benefits from cannabis.
Another friend emailed me the following comment in response to my earlier post and after she herself viewed the Dateline special. She was puzzled by the doctor's comment about the placebo effect:
The way it was employed is sort of a misnomer. Placebo effect would mean
the seizures stop because of belief in a substance. Which would be pretty
impressive and hopeful and something to explore. (Is most certainly something very
under-explored in general.) But what is really being said is that parents' observations are inaccurate. Researchers' observations can be biased as well, obviously --- hence double blind
studies. But the adversarial rhetoric of this sort is absurd, because any drug that is used off-label,
and there are lots of them, is used on the basis of reported experiences, AKA anecdotal.
Neither placebo nor anecdotal should be used as pejoratives. It's all information.
the seizures stop because of belief in a substance. Which would be pretty
impressive and hopeful and something to explore. (Is most certainly something very
under-explored in general.) But what is really being said is that parents' observations are inaccurate. Researchers' observations can be biased as well, obviously --- hence double blind
studies. But the adversarial rhetoric of this sort is absurd, because any drug that is used off-label,
and there are lots of them, is used on the basis of reported experiences, AKA anecdotal.
Neither placebo nor anecdotal should be used as pejoratives. It's all information.
I couldn't have said that better myself.
Out of the 20 drugs that Sophie has been on in her twenty years, more than three-quarters of them were used off-label. During the hundreds of visits I've made to our neurologists' offices over the years, I've "reported" how things were going. The doctors have always studiously taken notes. I tell you what. It's becoming more and more difficult to take any of these people seriously. Dr. Brooks-Kayal is the head of the American Epilepsy Society, an extremely influential organization. Because I'm a woman with a tiny little mother mind,™ I'm going to throw out the words Big Pharma, Medical/Industrial complex, money, money and more money and just -- well -- wonder.*
*And those of you who like myself don't watch much commercial television were probably bowled over by the amount of commercials that ran during the program and their length. Nearly every single commercial was for a pharmaceutical, including a drug for your dog. It's enough to make you want to go off-grid.
