How We Do It: Part LIV

No one really wants to rage, except when there's nothing about which to do so. My own simmers below the surface of things, beautifully contained. Savory. Hot springs. Remember my story of the neurologist who had called children's services to intercede when several people I know went against her wishes and put their children on cannabis? She also was involved in an alleged "medical kidnap case." She apparently rages, when there's nothing about which to do so. She wrote this piece, posted in the New York Times. I missed it because I was in the fairy tale woods of Hedgebrook, but I read it last night, felt the heat pick up.  I picked up Sophie's refill of Onfi today, paid $60 for six boxes of liquid benzo that will, hopefully, be one of the last batches before we've fully weaned her. We've been weaning the drug for the last eighteen months, taking a tiny bit away every six to eight weeks with a predictable array of side effects that hit after three days, ten days, three weeks and then off and on until we hit a steady spot and take away a tiny bit more. We're just over 50% weaned, and we've discovered that adding a few drops of THC each day helps the withdrawal symptoms. I think about the players when I swipe my debit card to pay for the Onfi -- the researcher that figured it out, the pharmaceutical company that made it, the government that approved its safety for use, the neurologist who ordered it, the pharmacist that scraped it into the bottle, the insurance company that determined whether it should be "covered," the parents that pay for it (pay whatever amount it's worth at the moment -- $1,000, $500, $90, $63, $60, free) then fill the syringe with it, the young woman who opens her mouth and takes it, and the brain that bathes in it. It all ends there, in the bloody, wrecked bath. I am reminded, again, of the difference between resignation and acceptance, where they fall on the continuum of rage. I am a master of muted rage, the good girl gone wild only in her head.

The Urine Wheel

Medieval diagnostic tool: The Urine Wheel

I don't even know how to write about what I'm going to write. I don't even know where to start. The last couple of days I've been thinking so much about a story that involves a little girl with seizures, her parents and a doctor that I used to work with about ten years ago. The doctor is accused of medical kidnapping, and despite that inflammatory phrase, I am not surprised. Here's the thing. I worked as the Parent Chair on a national collaborative about ten years ago. The collaborative was funded by the federal government and implemented through the non-profit foundation National Institute for Children's Healthcare Quality. Our mission was to collaborate with teams from all over the country to improve the quality of healthcare for children with epilepsy and their families. Part of the initiative was to encourage and, in fact, demand that parents and families play an equal role in the improvement efforts, and my job as co-chair was to help implement that. My feeling then was that the state of healthcare quality for our children with epilepsy was abysmal, and there was nowhere to go but up regarding communication between families and the professional world. I was honored to work for NICHQ, and their efforts to include families were (and continue to be) near-revolutionary. The faculty also included a top neurologist from Wisconsin. Her name was Dr. Zupanc, and because this is a public blog, suffice it to say that I found her to be one of the most arrogant, patronizing doctors that I'd ever met -- I'd go so far as to say that she was as bad as they get. Whenever she spoke, I stuck my fingers in my ears in my tiny little mother mind and attempted to forge ahead. When I paid a site visit to her epilepsy center in Wisconsin, I was impressed by the sheer beauty of the place and understood that this doctor was capable of commanding vast sums of money to be invested in epilepsy -- an explanation, perhaps, for certain communication and "bedside manner" deficits.

In the years that followed, I heard stories from people who would become my friends, stories of how badly they were treated by Dr. Z (as we came to call her), how she bullied parents into adding more drugs to cocktails that weren't working, encouraged and demanded radical brain surgeries, dismissed concerns, turned on mothers near-maniacally. When she transferred to Orange County a few years ago, I cringed, particularly when I read all the accolades about her.

Fast forward ten years to the Cannabis Revolution in Epilepsy, the revolution that we've helped to pioneer. Who is one of the most vocal opponents? Who is the doctor who has called California Protective Services to report several families that I actually know? You guessed it. So, here's the story, and despite the sensational title, it's been corroborated:

CPS Threatens to Kidnap 7-Year Old in California

If you're on Facebook, you can read updates on the family's page:

Pray for Kennedy May

One of my favorite, albeit controversial bloggers, Levi Quackenboss, has a great post about the whole shebang, too:

Calling for a Medical Kidnapping Smackdown



When I first read about this story, I confess to just raising my eyebrows. You hear a lot of crazy shit from very crazy people in the alternative medicine world, and I've written before about all the interesting people with whom I share a bed now. There's lots of conspiracy theories, too, and I'm hesitant to embrace all of  them. This is different. I've witnessed the type mentality of and have first-hand experience with those physicians whose obduracy about parents' involvement in their children's medical care beggars belief. I'll only qualify that by stating that Sophie's neurologists are beloved, always work with us in professional ways and have been nothing but supportive. The few that weren't I shed, quickly. That being said, I have several friends in this cannabis community that have corroborated the details of this story, and while I hesitated to get involved because it all makes me very, very nervous, I think it's important enough to show my support.

I wish this child and her parents continued strength and courage and hope that they feel the many folks out here at their backs.