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 9th. 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
