An Open Letter to The Neurologist and Those Like Her

The following is the text of a letter I wrote to the neurologist who used to "take care" of Sophie. I wrote the letter in response to that doctor's refusal to consult with Sophie's cannabis doctor about her care, even as we sat in a hospital room trying to figure out what was wrong with Sophie. I have since found another neurologist who is willing to work with Sophie's cannabis medicine and communicate accordingly. That's a good thing.  After vetting the letter with a few trusted friends , I sent it to several people, all of them connected to The Neurologist and the medical department at the major hospital where she works. I know it's long and perhaps winded, but I was determined to be myself and to convey not only my frustration and anguish but also my anger. I don't care about being concise, nor about burning bridges. In this screwed up time, I am interested in personal honesty, in truth. The letter conveys truth. I've gotten one response so far, and it was a form letter from the Risk Management Department. Of course. I did speak with the person who sent the letter, and he was cordial and sympathetic. He said that he would reach out to the director of the department to personally respond to me, but he wasn't certain it would happen. I told him I had no expectations that it would happen but that I appreciated his efforts. I told him that I had no interest in pursuing this, that I wasn't going to sue or make a stink in any way but through what I do for a living, which is write. 

Enough is enough.


Dear The Neurologist:

I’ve sat on and with the words I will write to you today since the last time we spoke on May 9^th. I’ve been mulling over the proper tone to use as my initial feelings were ones of anger and dismay, and as a writer and the mother of a child with severe disabilities, I know the value of thinking before speaking or acting. I had no intention of “burning bridges,” because I have deeply appreciated and respected your professional opinion and care of my daughter, Sophie, for more than four years. That being said, given what transpired between us that day and in the days that followed when I attempted to better understand our conversation through your colleague [blankety blank], I am still angry and dismayed at your lack of empathy and professionalism regarding Sophie’s care.

As you might recall, Sophie was admitted to [Blankety Blank] Medical Center one evening via ambulance because I felt her breathing wasn’t normal after a couple of seizures.  That was the only hospital that would admit fire department/emergencies and the closest to our home, so I agree to go there as opposed to [Blank] or even [Blank].

While Sophie has been on Onfi for over eight years of her life (and three other benzos previously in her 22 years struggling with epilepsy), she has never had aspiration pneumonia or struggled with increased secretions. In fact, I was slowly weaning her from the Onfi and was accustomed to the increased drooling and secretions as part of the weaning/withdrawal process. In any case, something was not right, so, literally, for the first time in her life, I called an ambulance, believing that perhaps Sophie WAS very ill. You have previously expressed concern over Onfi and its risks, including aspiration pneumonia, so I was cognizant of that, and the EMT found her oxygen saturation low enough to warrant a breathing treatment in the ambulance. When we arrived at the hospital, the initial assessment showed slight wheezing but no other symptoms, and blood work, as well as a normal lung scan showed nothing out of the ordinary, other than a slightly elevated white blood cell count. Nevertheless, the doctor in the ER, in consult with you, convinced me to put Sophie on a course of heavy antibiotics, while a proper culture grew, and admit her to the hospital. They also gave her another breathing treatment which seemed to help with the wheezing. I suppressed my own instincts (that Sophie did NOT have an infection and was, rather, undergoing symptoms of withdrawal from Onfi) because I was afraid that they might be wrong, and I understood just how dangerous aspiration pneumonia could be.

That night I spoke at length with Dr. Bonni Goldstein, M.D. who, as you know, is Sophie’s doctor who advises us on all things cannabis-related. Her expertise is cannabis, and it was her feeling that Sophie’s struggles had everything to do with the interactions between Onfi and CBD/THC. As a pioneer of cannabis medicine as a treatment for seizures, I am used to the tinkering and adjusting of dosages and strains of medicine to optimize the effects on Sophie and her seizures. As you know, after nineteen years and 22 AEDs, Sophie’s seizures dramatically lessened when we added CBD oil in December of 2013. Since that time, she has had 90% fewer seizures overall, and been weaned from Vimpat and more than half of the Onfi that she was on. Her overall quality of life – and our family’s – improved dramatically as well.

But back to Dr. Goldstein and our conversation late the night of Sophie’s admittance to the hospital – I was worried and in anguish over what to do about Sophie and just did not feel right having her treated for aspiration pneumonia or infection. Dr. Goldstein assured me that it was a reasonable protocol, but she also shared some interesting information about Onfi and CBD. I was overwhelmed and asked her whether she’d consider consulting with you about the care of Sophie going forward. She agreed.

My feeling was that you are both Sophie’s doctors with two separate fields of expertise and that perhaps by putting your heads together with one another and me, we could as a team figure out a plan moving forward on how to help Sophie.

The next day, I did speak with you from the hospital. You blew off my objections to Sophie having an infection and insisted that she did. Then, when I asked whether you would have a conversation with Dr. Goldstein about Sophie’s cannabis, you said – and I quote you exactly: “No. I can’t talk to Dr. Goldstein. I’m sorry, but I have direct orders from my boss NOT to discuss cannabis with my patients.”

I’m going to be blunt and say to you that in the heat of the moment, sitting in a hospital with my daughter, scared and confused, I was floored. Shocked, really. It was as if I was talking to a stranger and not the doctor with whom I thought I’d developed a decent relationship for nearly five years. You said, “I have direct orders from my boss NOT to discuss cannabis with my patients.”

I’ve been doing this for a long time and am perfectly aware of the politics around cannabis and epilepsy. I’m familiar with the parlance and lingo of the neurology community – the “party lines,” the condescension and dismissal. I’ve participated on panels where I’ve been shut out and down by physicians, and I admit to not having a particularly high regard for doctors who don’t think out of the proverbial boxes. I’ve worked as a parent expert with the National Institute for Children’s Health Quality on epilepsy collaboratives to improve the lives of children with epilepsy, and I’ve served on several boards, including the Epilepsy Foundation of Los Angeles. I was a founder of People Against Childhood Epilepsy (PACE) and helped to raise hundreds of thousands of dollars for epilepsy cures and treatments before the non-profit was folded into CURE. I have been a grant reviewer for the Department of Maternal Child and Health, participating on countless panels in review of federal epilepsy proposals. I have devoted much of my writing life to advocating for the disabled and trying to make sense of the medical world and our experience with it. Most of all, I have experienced twenty-two years of refractory epilepsy in raising my daughter Sophie. There has not been a single instance where a drug or treatment recommended by a neurologist in over two decades has really helped my daughter.

I have tolerated your relative lack of interest in the success we’ve seen using cannabis medicine because you have always been so open in the quarterly appointments we have with you. I know that it’s an enormously controversial and complex subject with many interested parties. I have never concealed anything from you – including my personal difficulties as a mother and caregiver. I was grateful to have a caring neurologist in you.

“I have direct orders from my boss NOT to discuss cannabis with my patients.”

I’ll skip forward a week or so after the hospital admittance. I left the hospital on the third day because no doctor visited our room and gave me no indication why Sophie was still on antibiotics. Her lungs were clear, as was her bloodwork, as was the culture. In short, Sophie did NOT have an infection and never had an infection. I followed up the hospital visit with our pediatrician, who ran viral cultures and did another examination. Everything was negative. We mothers know these things, in the end. But that isn’t the story here, and, again, I respected your belief in aspiration pneumonia and wanted to do the right thing.

“I have direct orders from my boss NOT to discuss cannabis with my patients.”

I called your office and expressed my incredulity at what had transpired between us. I asked your nurse to provide me with a written policy that you were not allowed to speak to your patients about medical cannabis. I have heard stories of doctors calling CPS on their patients, of doctors who openly refuse to talk about cannabis or who are literally quite ignorant about it, but I had not experienced that from you in the nearly five years you were Sophie’s doctor. It seemed outrageous and harmful. It seemed suspicious.

I got a call from your colleague Blankety Blank who initially gave me what I might call the usual “song and dance” routine about medical marijuana – the party lines, the “need for more research,” etc. etc. Unfamiliar with me or with Sophie, she thought I was asking you to dispense cannabis, so I had to clarify things. When I cut to the chase and asked her for that policy, she said that she would speak with you and get back to me. She got back to me, two days later, and told me that you did not WANT to speak to me about cannabis medicine, but that there was no directive from a “boss” or actual policy that prevented you from discussing cannabis with your patients.

Basically, Dr. , I’d like to think that there was a misunderstanding between us, but I can only surmise that you lied to me. I know that as a physician you are taught to do no harm, but you did harm by lying to me. You broke a sacred relationship and destroyed the trust I have in you. Whatever your motivations, and I suspect they are complex, your words conveyed fear and ignorance, and I don’t want anyone treating my daughter who doesn’t have the guts to be honest and discuss her feelings openly. I regret having to change neurologists as I have always had long relationships with each of the men and women who’ve treated Sophie for more than two decades, but I’ve found someone who is willing to work with us and discuss cannabis medicine as part of Sophie’s treatment. Sophie will be seeing him, moving forward.

Despite decades of working to improve it, I am resigned to the continual problem that the traditional neurology world has communicating with their patients. I have lowered my expectations, particularly in regard to cannabis. I admit that the last shreds of my tolerance for the epilepsy world’s authority in treating refractory epilepsy are gone.

Here’s how Sophie is right now: great. She goes two weeks without a seizure and had only a couple during the month of June. I’m continuing to wean her from the Onfi, albeit much, much slower than recommended as she is so sensitive. I have doubled her dose of cannabis oil and switched products. We have found that this kind of “shake-up” can work. It is my belief that Sophie suffers from Benzo Withdrawal Syndrome. I am aware that we might never be able to wean her completely from that vicious drug, but thank goodness we have cannabis oil to help.

I am sorry that you and your colleagues have not expressed any interest in studying Sophie, a human being who developed infantile spasms at three months of age, who was subjected to twenty-two drugs over nearly two decades and two trials of the ketogenic diet before finally finding some modicum of seizure freedom and relief with cannabis oil.

Yes, she is Anecdote, but such Anecdote! You were in the position to really learn something, and you didn’t care to do so.

I’d caution you and your colleagues to be aware that young families and individuals trust you and are willing to be open about what they are doing for their children and themselves. I’d caution you that they will do whatever it takes to help their children and themselves, and that if you as a group refuse to work with them, they will hide what they are doing from you. There will be no partnership or open communication, and that can never be good for children or the doctor/patient relationship.

I’m a veteran in this horrible world of seizures that don’t end, of drugs that don’t work, of side effects worse than seizures, of poor bedside manner, of suspicions and mistrust of pharmaceutical companies and the doctors that peddle their products and are compensated to do so, of excruciating withdrawal symptoms from these drugs, of fractured families and incredible financial strains. Equal to the seizures and the disability that my daughter has suffered, is the stress of constantly wrangling with the systems of care, and I’d urge you to imagine what it’d be like if one of your own children developed the kind of seizure disorder that Sophie has struggled with for her entire life.

I like to imagine that you’d do the exact same thing as I have done.

I like to imagine that you, too, would not stay with a physician who lies to you about your child’s treatment, who refuses to learn about something that she knows little about, who responds to pressure from those “above” her (and I am imagining here that there is much pressure above you about this subject) in the manner that you responded to me.

Respectfully,

-->

Elizabeth Aquino

What Arundhati Roy Gave Me Last Night

I took an UberX last night down to the Aratani theater in Japantown to hear Arundhati Roy, the great Indian novelist. The driver was of indeterminate ethnicity and drove an immaculate Lexus sedan. I tend toward chatty, and he obliged by telling me that driving was his second job, his first being something to do with transferring people from health insurance to Medicaid or whatever whatever whatever.  He began mansplaining about the whole shebang so I jumped in with my own tiny little mother mind™ and explained the tiniest bit about Sophie and then he shut up and then I said a single payer plan was the only way to go and he shook his head and said it'd hurt a whole lot of people and then I asked why and he told me the story of his sister-in-law who came to this country from a very poor country and overstayed her visa and had a baby with a man and used Medi-Cal to pay for diapers and formula even though she's illegal and he and his wife both work hard and this is the problem because there are thousands if not millions of people doing what his sister is doing while he and his wife are doing the right thing. He said people like her should not have babies. So I asked, Why don't you offer to pay for your sister-in-law's diapers and formulas, then? And he said nothing. To be fair, he agreed that the pharmaceutical companies and insurance companies are a big racket, and I agreed that people shouldn't work the system and should take responsibility for their actions. We compromised on the need for everyone to do the right thing, but when I climbed out of the Lexus at my destination, I walked through the plaza straight to a little bar set up and ordered myself a cold dark beer and drank it, fast, along with a $2 taco from a kosher taco truck. Then I waited in line with my copy of Arundhati Roy's new novel and filed into the theater and sat in my second row center seat and had my tiny little mother mind™ blown.

It seemed fitting that Roy was framed on stage by a photo of Patti Smith, her arms reaching up toward the heavens. I imagined that Roy had descended from them to grace us, such was her luminosity for the next hour and a half. She talked with Hector Tobar about art and literature and the history of India, of Pakistan and Kashmir. She told us of the atrocities happening there, that the Kashmir has the highest military occupation of any country in the world, that you can't really write about the atrocities as reportage but that fiction is the only, the best way to write about them because you will write about everything, all angles, all human experience through fiction. Fiction is a prayer and an offering, she said at one point, and we all might have swooned. Her voice, her laugh, her gentleness and steel. She told us that she is returning to India this weekend to appear in court. Every few years or so, she is sued by five male lawyers over something or other, for daring to speak, to write, to protest. She has spent time in jail. At the end, a woman in the hijab told her what she meant to her, and her voice broke. I felt tiny, the ride in the Lexus, the driver and his sister-in-law, Medi-Cal, Trumpcare and all the rest peeled away, a transparent skin to shed. Naked.

I'm thinking what sorts of bullshit we are preoccupied with here in these Disunited States of Amerikkka. Bloody, plastic surgery faces, the National Enquirer, talking heads yammering, yammering, yammering with our acquiescence and participation. Our umbrage. I told a friend today that the latest diversion is worse than a soap opera. Stop the madness. It's a vomitorium. Bloody face lift had me howling at the moon, she replied, and I thought yes. Yes because it's so over the top horrible that a person in power would say it and also yes because it's all so tragically stupid. There's a $3.2 million dollar Mega-Mansion behind my bungalow that a family bought so that their 23 year old graduate student kid can live in it while attending USC. They are Korean. I walked by with Sophie yesterday and noticed a black Ferrari in the driveway with dealer plates on it. Just a block away, there's a small tent city growing of homeless people who look familiar to me now because they've been in the neighborhood so long. The giant Lenin statue that sat at the corner was removed the other day as the art gallery that put it there has gone bankrupt. For a couple of days only half of Lenin sat there, and I wondered whether he could house a homeless person. Here's a picture:

But I digress.


I took an Uber home. My driver was African American and drove a Toyota Corolla. As is my wont, I was chatty but he was surly so I let up and we drove through the lit up shitty in silence. When he pulled in front of my house, I said Have a nice night and stay safe and he looked up and said Yeah. Thanks. No one has ever said that to me before.

Normality in our part of the world is a bit like a boiled egg: its humdrum surface conceals at its heart a yolk of egregious violence. It is our constant anxiety about that violence, our memory its past labors and our dread of its future manifestations, that lays down the rules for how a people as complex and as diverse as we are continue to coexist --continue to live together, tolerate each other and, from time to time, murder one another. As long as the center holds, as long as the yolk doesn't run, we'll be fine. In moments of crisis it helps to take the long view.

Arundhati Roy, The Ministry of Utmost Happiness 

** The irony of me buying a ticket to hear a writer and taking Ubers down there and back, drinking a beer and eating a taco and otherwise living this luxurious life in the beginning years of the twenty-first century is not lost on me. Privilege. Just in case you wondered.

Drug Wars

I posted the above photo, innocuous enough, and told my Instagram followers that if such things turned them on, they should come over here and read this blog post or rant or whatever you might call the twenty-first year of wrangling with drug companies, pharmacies and insurance companies. I spent a bit of time today on the horse, trying to get Sophie's prescription of Vimpat refilled. I write a lot about the benzos -- Onfi, in particular -- but you might not realize that Sophie is also on Vimpat and has been since it was approved for use by the Almighty FDA in the fall of 2008. Yessiree Bob, as they say, and anywho. We slapped that drug on, along with the Onfi, numbers twenty one and twenty-two of drugs both approved and not-approved by The Almighty FDA and then spent the next eight years fighting for coverage by private insurance companies and Medi-Cal despite the grim fact that it doesn't really work. 

What does it mean when a drug given for seizure disorders doesn't really work?

It means the seizures don't stop.

Why, then, did you keep Sophie on that particular drug combination?

Because taking away drugs is a hideous process, and we had no other options. Oh, and because I used to listen to The Neurologist and do what he or she said with the exception of adding a third drug which I had earlier declared I would only do if Jesus Himself offered it to me. The Vimpat didn't appear to affect Sophie negatively, as far as we could tell (which isn't very far as she can't talk or express whether she's having any of the following:

Common side effects of Vimpat:

• Blurred Vision
• Dizzy
• Double Vision
• Feel Like Throwing Up
• Head Pain
• Throwing Up
• Uncoordinated

Infrequent side effects of Vimpat:

• Abnormal Manner of Walking
• Diarrhea
• Drowsiness
• Feeling Weak
• Involuntary Eye Movement
• Involuntary Quivering
• Itching
• Loss of Memory
• Low Energy
• Sensation of Spinning or Whirling
• Signs and Symptoms at Injection Site

• Rare side effects of Vimpat:

  • Atrial Fibrillation
  • Atrial Flutter
  • Atrioventricular Heart Block
  • Decreased Neutrophils a Type of White Blood Cell
  • Deficiency of Granulocytes a Type of White Blood Cell
  • Feeling Faint
  • Giant Hives*
  • Having Thoughts of Suicide
  • Increased Eosinophils in the Blood
  • Inflammation of the Middle Tissue Heart Muscle
  • Kidney Inflammation
  • Liver Inflammation caused by Body's Own Immune Response
  • Mental Disorder with Loss of Normal Personality & Reality
  • Multiple Organ Failure
  • Slow Heartbeat
  • Stevens-Johnson Syndrome
  • Suicidal
  • Toxic Epidermal Necrolysis
  • Abnormal Liver Function Tests
  • Aggressive Behavior
  • Anemia
  • Chronic Trouble Sleeping
  • Confused
  • Depression
  • Difficulty Speaking
  • Disturbance of Attention
  • Dry Mouth
  • Easily Angered or Annoyed
  • Feeling Restless
  • Fever
  • Hallucination
  • Heart Throbbing or Pounding
  • Hives**
  • Incomplete or Infrequent Bowel Movements
  • Indigestion
  • Mood Changes
  • Muscle Spasm
  • Numbness
  • Numbness and Tingling
  • Prolonged P-R Interval observed on EKG
  • Rash
  • Ringing in the Ear

Sophie has two different Vimpat prescriptions because she gets a smaller amount in the morning, so we try to keep the number of pills she has to swallow to a minimum AND avoid cutting pills into quarters or halves or other infinitesimal amounts. Today, when I went to pick up the refills of BOTH prescriptions, I was told by The Earnest Pharmacist (sigh, they're always so earnest) that Vimpat is a controlled substance, and they couldn't release it to me until Monday. I told The Earnest Pharmacist (bless his corporate heart) that I knew that because my daughter had been taking the drug for seven years (even though it doesn't fucking work) and then The Earnest Pharmacist said he would check to see whether if he over-rode that stipulation the insurance company would cover it, and I, of the tiny, little mother mind™ suggested that he give me three pills to tide me over to Monday and The Earnest Pharmacist said, Oh, no, I can't possibly do that and right before I morphed into Terms of Endearment Epilepsy Drug-Style Shirley MacLaine and banged on the counter, The Other Earnest Pharmacist looked up from her computer or little desk where she was counting out some other poor soul's drug and said, Oh, I can take care of that! Then I forked over my $120 co-payment that Medi-Cal is supposed to pick up but has mysteriously neglected to do so without the six thousandth prior approval.

Then I grabbed a bottle of cheap vodka from the liquor aisle and a bag of Cheetos and ran from the store to add to my stash of Vimpat that I am hoarding for thrills at home in the brown basket right next to the bottles of Onfi and the Lone Ranger cookie jar.







* The reason for this post has just occurred to me. Sophie has been getting hives off and on for a number of weeks. I have no idea why and am now wondering if it's due to the Vimpat? I had thought a drug rash unlikely when I first saw them, because drug rashes usually show up right after you begin taking the drug, and it has been over seven years, but --- well --- sigh. 
** See above.