Saturday, May 2, 2015

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.


18 comments:

  1. This comment has been removed by the author.

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  2. I would say, "No way," except I believe this did happen. Dr. Z. MUST be totally out of her mind. This is one of the most horrible horror stories I've ever read.
    Thank GOD they got her out of there.
    There must be a way to get this doctor out of practice.

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  3. My God, this is terrifying! How is it that no one has yet sued this doctor? What can we do? The comments on the story you linked are interesting too. All these parents and doctors cannot be wrong. But if even fellow doctors know she is dangerous, how on earth is she still allowed to practice?!

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  4. I'm very glad you did blog about her Elizabeth. Families who are googling her name need to find this family's story and all the stories of families who have had similar experiences w her. I know these families. Sadly Kennedy's family is not alone. But if we can get the word out hopefully the consumers voice will be heard - YOU CANT BULLY US. My little mother mind is so over hegemony in the medical field. As appreciative of their knowledge as I am, they've painted themselves into a corner and apparently can't think for themselves outside their own box. We need progressive thinkers that possess a variety of wisdoms. Epilepsy treatment requires an IDT.

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  5. I'm very glad you did blog about her Elizabeth. Families who are googling her name need to find this family's story and all the stories of families who have had similar experiences w her. I know these families. Sadly Kennedy's family is not alone. But if we can get the word out hopefully the consumers voice will be heard - YOU CANT BULLY US. My little mother mind is so over hegemony in the medical field. As appreciative of their knowledge as I am, they've painted themselves into a corner and apparently can't think for themselves outside their own box. We need progressive thinkers that possess a variety of wisdoms. Epilepsy treatment requires an IDT.

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  6. I have been following this story and each day more people are getting involved. I am glad the little girl seems to be getting better too now that she's been moved. Pick am going to call and write a letter. It is horrific and Dr. Z cannot be allowed to continue in her practice.

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  7. I think a powerful response to such arrogance is for patients to shun doctors who behave this way, and if necessary shun the hospitals that employ them. The combination with CPS is toxic.

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  8. I hope those parents file a formal medical complaint with the state. There must be a system of redress through the Medical Association or whatever licensing bodies exist. It sounds like the child's positive experience in San Francisco is so dramatically different from the negative ones she had in OC that it ought to be easy enough to prove misconduct.

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  9. Dawn is my friend and Kennedy's story is one of the more positive Dravet stories we have. I think this is many of our worst nightmares. All I can say is this Dr messed with the wrong family.

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  10. I am gobsmacked. I can not shut my mouth. This horrific dr. and so many others in her field that placidly act according to their own misguided and prejudiced beliefs surely could not have been born this way? How can anyone adopt or be groomed into such maniacal thinking? A real perversion of thought to perpetrate these kinds of behaviors and thoughts toward suffering children and their parents.

    You obviously have and will continue to speak out and gather others who understand and hopefully can effect the exposure and removal of this pariah - count me in.

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  11. This is HORRIFYING. Thanks for posting this, Elizabeth.

    In solidarity,

    Beth the midwife

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  12. This is HORRIFYING. Thanks for posting this, Elizabeth.

    In solidarity,

    Beth the midwife

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  13. The doctor has the audacity to say the parents are doing something wrong? How totally backwards.

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  14. This is horrifying. We've had a couple MDs I didn't care for but we just didn't go back. This… this is Kafkaesque. I have (perhaps an unfounded & naive) hope the CA Med Board is more aggressive than WI's. Thank god the family had the resources to intervene. I can't imagine the hell the other families endured.

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  15. Unbelievable! How did this doctor ever get the reputation as the great Messiah of Epilepsy anyways? Did she get a track record for success that went to her head and is now using a one size fits all strategy, convinced that it's the only way? I hope that the publicity from this case gets together those who were abused by her and that something can be done. Most of the time, when we take our children, our loved ones, our selves to a doctor that has the rep of being great in a field, we go with the advice such a doctor gives, and there isn't info to the contrary out there to raise the hackles. It appears that with this incident, her record is going to be under examination and out in the open. Hopefully, those under her care, will have their records scrutinized and if things are not working well from them, other help can be brought into the picture. Unfortunately, a lot of parents have no idea what to do. The whole reason they end up at the hospitals and with new doctors is that what they were doing has failed and they are extending a hand out into the unknown for help.

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  16. I have resisted writing about it, too, because I have no idea where to begin. Instead of adding my two cents, I will promote this post because you have personal experience with this particular doctor and I'm certain that speaks much louder than anything I could say. When I think about this doctor, the image that comes to mind is a toddler in the sandbox, stamping her feet because someone won't listen to her. She is clearly NOT acting in the best interest of her patient and, for that, she needs to be thoroughly investigated. May your wise words help.

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  17. Has anyone checked if she is being funded by any pharmaceuticals? This woman has a God complex and sounds like she has some kind of personality disorder.

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