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,

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Elizabeth Aquino