Sunday, July 30, 2017

Cannabis and Pediatric Neurology: A Modern Day Fairy Tale with a Villain

Sophie and Me
La Jolla, CA 1999

Sophie was about four years old in that picture. I was 35, and it was the turn of the century and the millennium.

Once upon a time.

I sure wish that I could have had access to CBD oil back then.

I might have avoided nearly twenty years of frustration in controlling Sophie's seizures. She might have never become addicted to the benzo. We might not have had to try fifteen more drugs (she'd already been on eight in this picture). We might have avoided the second trial of the ketogenic diet which reduced Sophie to a pacing tiger in a cage waiting for her slice of strawberry embedded in a stick of butter, her stool impacted and no seizure relief, myself a fucked-up wreck of a woman. We might have avoided a broken leg, a broken nose, a broken hand, a split-open forehead and back of head, more than twenty stitches, permanent teeth knocked out, and a host of side effects: screaming, rigidity, sleeplessness, catatonia, anorexia, stomach pain, headache, fevers, rashes, hives, irritability, ataxia, dizziness, muscle weakness, blurry vision and cognitive decline.

Tonight I learned that another family has been threatened by a pediatric neurologist at UCLA. I'm not going to use his name, but I've written about him on this blog. I've also written quite recently about my own encounter with a bully -- Sophie's adult neurologist and her superiors who refused to discuss medical cannabis with us, even after we had been doing so for nearly five years. The irony of the recent scandal going on in the USC medical school is not lost on me. Look it up if you want to hear some serious shit.

But I digress.

This UCLA pediatric neurologist's  "area of expertise" is infantile spasms, the disorder that Sophie was diagnosed with in 1995. I will remind you that the treatment protocol for infantile spasms is nearly identical to the one we used twenty-two years ago with the exception of a "new" drug that is not new. It was approved by the FDA years after we used it. We tried it back in the last century at the urging of our very cutting edge neurologist because Sophie had already failed eight or so drugs in various combinations. She was nine months old. We got it from England, and we gave it to Sophie along with two other drugs. It didn't work and caused what I thought was psychotic behavior in a baby. Screaming for most of the day and night. It had not been tested, you see, on babies, and who knew whether that particular cocktail of drugs was causing more harm?

This drug Vigabatrin went off the market for a time because it can, in rare instances, cause serious irreversible vision damage. When your doctor prescribes it for your child's infantile spasms or seizures, you have to sign a waiver that you know about this risk. The other standard treatment for infantile spasms is ACTH, a high dosage steroid, administered by intramuscular injection. I believe brain surgery as a treatment has advanced somewhat, but -- it's brain surgery, and you have to be a candidate for it. You have to have a focus area to mess with in the operating room. Sophie did not have a focus.

90% of babies diagnosed with infantile spasms will have moderate to severe cognitive disability and refractory seizures. This number has not improved in decades despite "advancements."

This pediatric neurologist at UCLA is one of the several neurologists in the city, in the country, who are involved in GW Pharmaceuticals' studies of cannabis medicine and their cannabis product Epidiolex.

This pediatric neurologist openly tells his patients about CBD oil and tells those of us in the "veterans" community that he supports its use, but then he threatens families with Child Protective Services.

He is a Janus-like figure, or perhaps that is too kind.

He is two-faced.

We can only surmise that he and others like him want people to stop using what Big Pharma calls "artisanal oils" and start using Epidiolex. We can only surmise that they are  -- let's say -- "on the dole" with GW Pharmaceuticals.

Follow the money, as they say. Except that these are not crumbs laid to remember your way to safety.

I will say that he is a bully. I will say that there a lot of bullies in the neurology world -- both pediatric and adult. I understand that there is a lot of fear. There is liability, lawyers, corporate policy. Medicine As Business.

I will say that we do not trust these neurologists.

I will say that there are pediatric and adult neurologists who are not bullies and who are willing to work with parent experts in a manner that is family-centered. I encourage you to leave your pediatric neurologist or adult neurologist if you are being bullied. I encourage you to advocate for full and open communication with your physicians and demand that they do the same. If they can't work with you, and you are using cannabis medicine, then they should tell you so directly and give you the choice to leave and find another neurologist. I realize that this might be impossible, so do what you need to do. You are in charge.

I don't know if there's a happy ending to this story, or if there's an ending at all. It seems, sometimes, as if we are always beginning.

Feel free to share this post with anyone that might find it helpful. I'm sorry that it pertains primarily to legal states and particularly California, but as long as we have docs averse to communication, we're going to see similar crap going down all over the country as the laws are eased.

Here are your rights and some resources:

Where to Find Pediatric Cannabis Support
Is Medical Marijuana Legal for Children in California
Patients' Guide to Medical Marijuana Law in California

Friday, July 28, 2017

Hilton Head Family Vacation

I don't even know where to start! If what happened last night hadn't happened, I'd probably have titled this post Hilton Hell Family "Vacation" instead of the more prosaic Hilton Head Family Vacation. Because of last night's vote by the Senate to NOT repeal the Affordable Care Act, and because I only found out about it this morning when I woke up in Los Angeles, (much to my shock because when I went to bed it looked like it was going to be the opposite, and I did go to bed filled with anxiety and dread, much like I've gone to bed for the last six months), I would have had a harder time getting on the old blog not sounding bitter and angry. As long-time readers of the old blog know, there is some pretty hard-core partisanship in my immediate family, and things can get very testy. I have a mother who is half Syrian and a father who is full Italian. Let's just say that the three daughters are opinionated, our progeny vocal and we're all -- well -- passionate.

It's a beautiful house, but it's not big and all of us stay there. It's tight and it's raucous.

Long-time readers of the old blog know that every year my extended family meets for a week or so at my parents' home on Hilton Head Island. We've been doing this for over eighteen years, and the kids adore the experience. My experience is, let's say, less joyful, but that's because for the first decade or so I brought Sophie along and have a bit of PTSD, I think (if I were an atheist, I would have become one during "vacation" on Hilton Head Island with Sophie), as well as this aching feeling that she will never truly be a part of these kids' lives or memories. That's a big, complicated feeling that those of you in similar circumstances will probably understand better than those of you who might have the fleeting (and somewhat accurate) thought that I need some gratitude or awareness of my privilege or -- well -- whatever.

The Progeny

The kids are all getting so big, and despite the geographical distances between us (Los Angeles, New York, St. Louis and Washington, D.C.), with social media and this annual get-together, the cousins remain remarkably close and are a joy to watch. Not only are they all, literally, beautiful, but they're also a kind and very funny bunch. We had many a laugh, particularly one night when we each used our Bitmoji characters and texted one another from the same room, with one text more clever than the next, all of us laughing so hard that we cried. 

O.K., I cried. 

I'm really proud to say that most believe my Bitmoji to look exactly like me:

Where was I?

The Big O with his drone

Genes are mighty strong

Family meals

The best-looking incoming freshmen in any university anywhere

My amazing 81 year old father with Henry

Beautiful Atlantic ocean

We're a big crowd on the beach (and those giant houses behind are not ours)

My sexy, adorable sister who fights in her home state for safer gun laws. You don't want to mess with her.

Look closely at what's in the lagoon right behind my parents' house. Scroll down for details.

I love this picture of me and my father. 

What I wore in lieu of actually screaming at every single person I saw in South Carolina that I suspected of being a Trumper

I showed them, right?

Ha. Just kidding. I felt desperate sitting out there on the hot beach, under a tent, watching our beautiful children play volleyball. I felt angry and nervous and anxious all afternoon on Tuesday, and when I checked my email and saw that the Senate was taking up the debate, that McCain had voted yes, I stood up and stormed off the beach and back to my room where I sat for the next hour, furiously dialing people through my Indivisible resistance app, speaking to constituents in West Virginia and Nevada. One 83 year old woman told me that she'd called Senator Capito every day for weeks, but she didn't think her voice mattered. I asked her to please call again, that her voice did matter. I hope it matters, I said. The calling helped me to feel sane and productive and less anxious, but can I tell you something? This whole thing has made me, generally not an anxious person, a very anxious person, often filled with dread and -- yes -- anger. The thing is that it's not only about me, about Sophie -- it's about so many of the people I've met over the last couple of decades and what I've learned about community and disability and vulnerable people. It's existential.

My beloved sons and I in the best light of the day

In the lagoon behind my parents' house

It was also Henry's 19th birthday, so we celebrated by going to a Mexican restaurant.

I won't show you the picture that my brother-in-law took of the my sistahs and I shooting birds into the camera. As Mary said when I showed her, I'd party with ya'll.

Speaking of Mary, I hope you wish her a happy birthday because today's her birthday and I love her to pieces.

What else?

I arrived back on the left coast and walked down the baggage claim and out into the not-humid Los Angeles air and to my love.

Waking up this morning to the good news -- well -- it was awesome. I know we'll still have to fight, but I'm ready and willing. The relief that I don't have to worry that Sophie's health insurance will be ripped away or her access to MediCal messed with, at least for now, is indescribable.  The Turtle put his head back in the shell, 45 is still tweeting insanities, and we've got a dude in charge of 45's communication who seems like he stepped out of the show Entourage. There's a lot going on, right?

Saturday, July 22, 2017

Monterey Breach: A Drone Short Film

These two have been friends since preschool.

Once upon a time, a little boy named Oliver made a whole lot of money selling lemonade on the corner of our street. He worked diligently and saved nearly all of it and began bugging his mother about spending that money, all at once, on a drone. His mother declined because that's a ridiculous thing to spend money on and you need to save that for college until, years later, it was clear that Oliver actually did want a drone and intended to do great things with it. It's my money, Oliver said. You're right, she said with a sigh. He bought the drone.

Oliver and Joe have been making incredibly inventive films for years. Oliver is game for acting and doing the bidding of Joe who is a preternaturally talented filmmaker and editor. You really can't believe how good Joe is until you see his stuff.

The Bird Photographer took Oliver up to Monterey this week to do a little drone photography and some whale watching. I'm not going to say how jealous I am (for obvious reasons), but Oliver -- on his first real whale-watching trip -- saw just about everything a person could dream of seeing on a whale-watching trip. Breaching whales, lunge feeding,  Great White sharks, dolphins, etc. etc. I have yet to see a whale breach, and I've gone out about eight times which is privilege enough. I just love this state I've adopted as my home. It is truly glorious, and I'm so glad that my children are California-bred.

Oliver and Joe made this short film that they titled Monterey Breach: A Short Drone Film. It blew my mind so much that I think I'm going to have to lie about how I tried to get Oliver to buy that thing for years because I just knew he was going to make something great of himself with it. I told Joe that when he's a famous filmmaker, I'm going to tell everyone that he made short films with Oliver in my little bungalow long ago.

Make it full screen, turn up the volume and be wowed:

Tuesday, July 18, 2017


Are you thinking jesus! When's this woman going to express her gratitude for the deep blue sea and the great blue whales? Here it is, my gratitude for the deep blue sea, for the coast of California and the planet's largest mammals that swim in the waters.

I saw five blue whales a week or so ago, not one or two or even three but five. Their bodies are sleek and shone in the sun. Vast.

Here it is. My gratitude for dolphins, for the thousands of them raced us, my efforts to not anthropomorphize so difficult because surely they smile and play and love?

Here it is. My gratitude for the island fox

for a dusty hot day

for a rocky beach where I lay with a book on a blanket, a stone under my head and in the small of my back

for a painted cave that smelled of damp and green. Lichen, the word

For white flowers that grew out of rock

for red crabs busy in clear water

for pelicans overhead

for this man for us

Monday, July 17, 2017

How to Keep Sane During Phone Calls Related to "The Systems of Care"

 A dear online friend mentioned my "fuck you stare" yesterday, which I was completely unaware that I possess. Another dear online friend private messaged me that I did not possess a "fuck you stare" but had "beautiful black eyes" and "the weight of the world." She also told me that I had plenty of "fuck you" writing. I sent the former the photo above and the latter a message saying that the former meant no harm and that lately a "fuck you" stare at men in general was very much in order. I'm talking about YOU, John McCain and that clot behind your eye that you're dealing with by using the "best healthcare system in the world" that we provide for you, and YOU, Mitch McConnell and your bullshit healthcare bill that you've deferred yet again. The weight I carry, though, is far less than others' in this world, and I'm not talking poundage. I'm thinking we should all join together, find a good ambulance-chaser attorney and file suit for emotional distress related to the healthcare shenanigans in our congress.

This morning, I spent the better part of two hours on the phone using my tiny little mother mind™ to navigate the various Systems of Care. That's a euphemistic phrase for The Neurologist's Office, The MediCal, The Blue Shield, the Social Security Administration, and the Wheelchair Company. With the exception of a successful refill for The Drug That Doesn't Work But That Sophie Is Horribly Addicted To, the rest of the calls were unproductive fools' errands. I've been throwing around the term fool's errand a lot lately. It captures quite perfectly what dealing with the Systems of Care is like on some days. Most days. I won't regale you with details because I'd feel responsible if you felt violent as a result, and I don't have a way to dispense Tootsie Roll pops to mitigate any damages.


Today, I found myself unwrapping a Tootsie Roll pop and sucking it furiously while on hold. About when the insurance company's Automaton/human came on, I'd gotten to the sticky tootsie roll part and enthusiastically crunched the candy into the chocolate while dictating social security numbers and case numbers and weight and marital status and my feelings about John McCain's eye clot.* Just kidding on the last three. See below for thoughts on the last. Where I ended up after said conversations was Brazil,** where I was given a list of different numbers to call for seemingly intractable problems and issues. I placed those numbers in a little pile on the hot pink plastic file bin on the top of my desk, right under the Shrine of Doodads and Tchotchkes.

The Tootsie Roll pop helped which probably means I have some kind of oral fixation issues.

Actually, it helps to curb invective so I can work on my "fuck you stare."

What also helps is to surrender and call it a day even though it's before noon.

What are ya'll doing today?

* I know I'm not alone in remarking on the irony of the estimable Senator McCain who suffers from a clot above his eye and who is currently getting excellent (The Greatest Healthcare System on the Planet) healthcare, gratis (thanks to his bosses, US), which has pushed the "healthcare" vote off yet again (because his vote is said to be a resounding YES). Imagine my "fuck you stare" here.

** I can still conjure the feeling I had after seeing the movie Brazil, not only because my tiny little mother mind™ has a memory like a steel trap, but because the events of my life mimic them nearly every day.

Wednesday, July 12, 2017

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 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.


Elizabeth Aquino


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