Deli Healthcare and My 911 List

I took my baby boy Oliver to an appointment today at Kaiser Permanente. Most of you probably already know that this is an HMO and that Oliver is not a baby. He will, in fact, be 18 years old in May. Good god almighty. We have not been in an HMO in twenty-five years, but this year I downgraded his and my health insurance policies because I just could not afford another 35% increase in premium for the PPO that we were on with Sophie. Sophie stays on her Cadillac plan with MediCal as a secondary policy. 

Anyway.

Kaiser Permanente proved to be exceptionally -- dare I say -- efficient. We really, really liked the doctor we "picked." It was amazing, honestly, how easily everything worked -- a one-stop shop. We visited the doctor, moved to another floor and barely waited to get blood work and then another to pick up a prescription. We were out of there in less than two hours, and the co-pays were minimal. Honestly, if Sophie didn't require such specialized care, I'd be all over Kaiser for her care, too. I've always been terrified of managed care, but let's face it. We're all managed every single moment by the Powers That Be. When we went to the lab for bloodwork, we had to get a ticket with a number on it, one of those little scraps that you get in the deli department at the grocery store. That was maybe the only moment where I felt annoyed, but I let it go. So, after just one visit, I'm going to recommend Kaiser Permanente for routine healthcare -- my god, in comparison to literally ALL the other places we've sought healthcare (UCLA, NYU, Columbia, USC, Children's and Cedars-Sinai), it was the best experience. I'll keep you posted on my own physician visit which is coming up soon.

Now, let's talk about 911. We just dropped another Who Lives Like This?! podcast. This week, Jason and I had Dr. Rita Eichenstein on the show. She is a neuropsychologist and the author of a really great book. Not What I Expected: Help and Hope for Parents of Aytpical Children. Even if you aren't the parent of an "atypical" child (and this category includes children with mental health disorders like anxiety and depression, as well as diagnoses of ADHD), I think you'll find a lot of value in our discussion. What really stood out for me was some advice she gave to those parents with newly diagnosed children. Among many helpful tips, she suggested compiling a 911 list of people you can call when you need help and support. After listing these people, she suggests calling each of them and asking whether they'd be willing to be on your 911 list. I know some of you are thinking, well, duh, of course you'd already know who to call or who wouldn't say yes to being on the 911 call list? I'm here to tell you that, at least for me, it's hard to call people, to ask for help, to vent, to cry, to share grief and exhaustion. Especially when it's done, over and over. I think it would have been tremendously helpful for me to have made such a list early on in The Troubles and communicated what I was doing with those people I trusted to be on it. Does that make sense? I feel guilty when I call my friends with my latest woes, especially regarding caregiving. I actually don't even do it that much anymore and feel isolated (of my own making, I know) as a result. I do see a therapist regularly, and that is enormously helpful, but it'd be great knowing that certain friends had taken on the responsibility of being on call for me, beforehand. I know for a fact that many of us struggle with asking for help. This seems like a simple -- yet almost formal -- way to connect with others and to "allow" them or give them the opportunity to help us. 

What do you think?

My Response to The NY Times Epilepsy Story

So many people sent me the recent — let’s call it crowd-sourcing — article detailing a young girl’s hideous epilepsy story and asking for the public’s help, that I’ve lost count. That we live in a period where literally everything is a reality show makes me ill. Crowd-sourcing medicine? Give me a break. This is my response to the parents via the New York Times and the f’d-up medical business community that pretends to Science:

Don’t cut out your child’s brain until you’ve tried cannabis medicine. “Fixing” your child is the hardest, most fruitless journey you will embark upon. The opposite of that is not acceptance. There is healing in the legion of people who know your suffering. Healing and curing are entirely different things.

Sophie B. vs The Great American Healthcare System, Part 1,000,000, ROUND 1

July 4, 2018
Ambulatory EEG

Let's make this a series.

ROUND ONE TIMELINE:


July 3, 2018

Sophie B. (Plaintiff) was "hooked up" to an ambulatory EEG in Neurologist's office.  Plaintiff went home with hook-up and video camera for overnight observation of brainwave activity.

July 4, 2018

Mother/Conservator Elizabeth A. removed electrodes from Plaintiff's head and returned "black box" to Neurologist office. Because it was a holiday, Mother/Conservator had no expectation for quick reading. Mother/Conservator reports that after two decades, she has no expectations at all.

August 23, 2018, 3:00 pm

Mother/Conservator picks up Plaintiff from adult day program and notes Plaintiff's difficulty breathing. Day program assistant reports Plaintiff had difficulty eating lunch and swallowing. Plaintiff's lips are slightly dusky in color. During entire ride home in Los Angeles traffic, Mother/Conservator pounds back of Plaintiff and encourages coughing and swallowing. Mother/Conservator contemplates bringing Plaintiff to emergency room but is persuaded by own inner compass and more than two decades of experience that no good will come of entering hospital emergency room. Instead, Mother/Conservator makes another of what has been multiple calls to Neurologist office for nearly two months regarding July 3, 2018 ambulatory EEG reading. Mother/Conservator has heated discussion with nurse at Neurologist's office demanding that she should get the EEG reading, that Plaintiff is suffering, that something is wrong. Neurologist gets on phone, admits that July got away from us and assures Plaintiff (whose tiny little mother mind™ wonders if August got away from them, too?) that EEG will be read that afternoon and that he will call Mother/Conservator that night. See Appendix A.

August 23, 2018 4:00 pm

Mother/Conservator arrives home with Plaintiff and proceeds to remedy problem of excess mucous and choking. She is helped by Caregiver and stabilizeS Plaintiff who falls asleep.

August 23, 2018 8:00 pm

Mother/Conservator receives phone call from Neurologist who expresses shock that Mother/Conservator was "right," that Plaintiff is indeed having recurrence of ESES, a rare epileptic syndrome that Mother/Conservator has suspected Plaintiff of having but has been repeatedly told by several Neurologists over two years that its recurrence is unlikely. Mother/Conservator goes into full dissociative mode while on telephone and intelligently discusses former incidences of ESES, the treatments for said incidences and otherwise directs Neurologist to treatment modality that was successful previously. See Appendix B and Appendix C.

Dissociative mode gives way to extreme distress and mental suffering of Mother/Conservator, attributed to decades of experience dealing with this shit, grief over Plaintiff's ongoing struggle and suffering and anticipation of forthcoming battle to get treatment for Plaintiff. Given experience, strength, history of mindfulness meditation and love and support from immediate family members, Mother/Conservator puts on big girl underwear, girds her loins and otherwise readies herself for the fight.

August 31, 2018

After multiple calls with Neurologist office to "check" on status of IVIG treatment (see Appendices A and B for clarification), Mother/Conservator is directed to Home Health Agency nurse who says that "this is not approved by the FDA as a treatment for epilepsy, so insurance will deny it." Mother/Conservator corrects Home Health Agency Nurse that the treatment is actually FDA-approved but is considered "off-label" for ESES treatment and that she is aware of possible denial. Mother/Conservator informs Nurse that treatment has "worked" for Plaintiff twice before and was partially covered by Insurance Company after some "wrangling." Nurse agrees to "write up" notes as dictated by Mother/Conservator about past history of treatment with IVIG. Nurse tells Mother/Conservator that she will "get back" to her after the holiday.

September 3, 2018 10:00 AM

Home Health Agency Nurse calls Mother/Conservator on telephone while mother is riding in car after dropping Plaintiff off at adult day program. Health Agency Nurse asks whether you might want to be more comfortable at home receiving information. Mother/Conservator tells Home Health Agency Nurse that she is fine using the Bluetooth option on her telephone in the car. Mother/Conservator wonders in her tiny little mother mind™ whether the Health Agency Nurse thinks she might have an accident when she "receives the news." Mother/Conservator finds this humorous and assures Home Health Agency Nurse that she can take it. Health Agency Nurse says that Insurance Company has declined the doctor's prescribed IVIG treatment for Plaintiff for what Mother/Conservator hears as blah, blah, blah, blah, blah. Health Agency Nurse states that an appeal will begin with Neurologist perhaps joining the appeal and personally speaking to Insurance Company chief doctor who has made this decision. Mother/Conservator listens carefully and says indeed. She can't recall whether she said, of course! or is there anything I can do to expedite this process so that my daughter can get treated for her ESES? Her tiny little mother mind™ wonders how many people are employed for this tomfoolery and thinks of some suitable imprecations, directed today toward Supreme Court Justice nominee Kavanaugh who, if confirmed, will most surely make Plaintiff's life and millions of others more miserable, particularly in regards to healthcare. Mother/Conservator doesn't share the inner workings of her tiny little mother mind™but rather reminds Home Health Agency Nurse of Plaintiff's secondary Medi-Cal insurance. Home Health Agency Nurse reports that the Medi-Cal office worker in Home Health Agency will begin to look into Medi-Cal coverage, now that Insurance Company has issued a DENIAL. Mother/Conservator finishes conversation pleasantly by remarking how frustrating this all is for everyone, even though inside she is dying, her tiny little mother mind™ shrunken, her girded loins gaping, her big girl underpants riven.

ROUND ONE:

Sophie B vs. The Great American Healthcare System

WINNER: The Great American Healthcare System
LOSER:    Sophie B.

Appendix A:

Mother/Conservator reports that Neurologist is wonderful in every respect, so while she is frustrated and upset over the delay in the reporting of the EEG results, after more than two decades of dealing with this shit, she is cognizant of Neurologist's time constraints and being stretched too thin. She assures Court that she'd rather deal with a Nice Neurologist Who Works With Her than an Asshole Neurologist, the latter being the norm and with whom she has had plenty of experience. Mother/Conservator also assures the Court that she is well aware of The System and its shortcomings, that she has worked most of her adult life in it and to improve it, that her efforts haven't amounted to much of anything but that she has virtually kept her daughter alive and sometimes thriving in spite of it.

Appendix B:

2005: Parents of Plaintiff (not yet Conservators because Plaintiff is a minor) are given "three choices" of treatment when Plaintiff is diagnosed with rare syndrome ESES (diagnosed only after Mother insists on hospitalization of said Plaintiff, given drastic decline in Plaintiff's physical abilities with no urgency to attend to this decline by Neurologist at time). Choices will be designated "Door Number One, Door Number Two, and Door Number Three" in keeping with Mother's dark, albeit sustaining, sense of humor.

Door Number One: High dosage steroids
Door Number Two: Valium
Door Number Three: Intravenous immunoglobulin (IvIG)

Mother chooses "Door Number Three" and treatment commences in hospital. After some "wrangling," private insurance company agrees to partially pay for ongoing treatments over the next six months in Plaintiff's home. "Wrangling" should be noted as "understatement" as Mother is left depleted and experiences considerable signs of post-traumatic stress syndrome, triggered by repeated "wrangling" in previous decade.

"Door Number Three" treatment of IvIg restores Plaintiff's brainwave activity to previous "normal" dysfunction and Plaintiff recovers.


Appendix C:

2011: Plaintiff has occurrence of ESES and is prescribed "Door Number Three" again, given its success in treating previous incident of ESES. Insurance company denies treatment but is eventually warned down by repeated calls from Mother, one of which includes a threat to hospitalize Plaintiff so that treatment can be initiated in hospital, requiring Insurance Company to pay. Insurance company agrees to pay for treatment, treatment is administered and Plaintiff recovers.

The Tiny Little Mother MInd™ and the FDA and Epidiolex

Today, the FDA announced its approval of GW Pharmaceuticals' Epidiolex, a cannabis-based medicine for epilepsy. As I've written countless times here on this blog, I do not begrudge those who want to try this concoction a fair chance to try it. If it works, fantastic. If it doesn't, you know where to go and what to do. What is that? You will probably need to jiggle around your CBD and add THC or one or more of the other cannabinoids. You will embark on a twisty path to healing. I believe this with all of my heart, but it's not a religion. It's fact and science and experience-based.

The reason the tiny little mother mind™ is writing this update is because of the following announcement by the FDA that accompanied their approval:

FDA is deeply concerned about the proliferation of unapproved CBD drug products marketed using unproven medical claims to diagnose, cure, mitigate, treat or prevent serious conditions and we’ll continue to take action against such products.

Cue the revolution. That's right. If the FDA or Big Pharma takes away our freedom to make, use, buy or otherwise give our cannabis medicine to our children or ourselves, there will be a revolution.

Epidiolex will cost between $2,000-$6,000 a month. If you have any experience with manufacturers and insurance companies and how drugs are priced, go figure that shit out. Contemplate that. Read my post from a few weeks ago where I discuss the difference between Epidiolex and the cannabis meds that many of us currently use.

My tiny little mother mind™has said it before over the five years that I and my compadres have been doing this, that there's a swimming pool here and plenty of lanes. Initially, we told the docs and anyone who would listen that they should get on the train because it was leaving the station. We were mocked and humiliated -- literally -- but we didn't give a flying foo and proceeded to save each other's children. We were told that we couldn't discuss cannabis medicine with our neurologists. We were reported to Child's Protective Services. We were obstructed over and over. That did not stop us.

Now, I'm telling you that Big Pharma should use their lane and not infringe on ours or take over the entire pool. 

I mean it.













*This has been a Public Service Announcement

Rules for Caregiving Post "Wisdom"* Teeth Surgery

1. Wake to the sound of a seizure at 5 am, a guttural moan and rattling, and run/hobble to patient's bedroom to assess situation
2. Administer large dose of CBD and CBDa via new protocol
3. Think who lives like this? while making sure patient is comfortable. Question pertains both to patient and caregiver
4. Turn on light (essential rule for those who struggle with psychosis in early morning hours)
5. Drop essential oil Frankincense into palms of hands, cup patient's nose for several seconds, caregiver's nose and then massage patient's feet
6. Recite secular prayers and pretend to administer Reiki
7. Note that second seizure does not happen, a small improvement from previous days
8. Change diaper and notice that hydration might be necessary
9. Worry and wonder 
10. Contemplate whether hydration might be necessary in hospital as patient slept most of previous day, having been drugged into oblivion because of too many seizures
11. Think who lives like this? as pertaining to patient. Curse wisdom teeth, so ridiculously named.
12. Text friend from East Coast who emphasizes importance of hydration.
13. Contemplate which hospital to take patient to for hydration, drawing upon 23 years of experience in caregiving
14. Contemplate waking College Boy or Brother to drive patient and caregiver to hospital
15. Contemplate the various pros and cons of hospital admittance
16. Read text from friend: Take her in
17. Continue contemplation of big city hospitals, private insurance and who takes MediCal as secondary
18. Curse the American health care system to ward off financial fears
19. Retrieve large syringe used to administer pharmaceuticals, bottle of cold Pedialyte from fridge and towel
20. Sit at patient's bedside and carefully syringe 5 ml of liquid into patient's mouth until 8 oz is down the hatch.
21. Help patient to cough up mucous with newly purchased $369 portable home suction machine
22. Think who lives like this? pertaining to both patient and caregiver throughout home hydration
23.  Lie next to patient and gradually realize that patient is not seizing like she had in previous days, has drunk an appropriate amount of electrolyte-balanced liquid and is resting peacefully
24. Rest peacefully next to patient while College Boy and Brother sleep unaware of caregiver and patient drama on other side of wall
25. Rise from patient's bed at 7:00 am, make coffee for caregiver and oatmeal for patient to hopefully eat later. Sip coffee and contemplate the universe
26. Bring patient 8:00 medication and coax another 8 oz of liquid into patient's mouth. 
27. Note, again, that no seizures have occurred
28. Think who lives like this? while planning a trip down to Santa Ana to visit a dispensary that has a good stock of CBDa. It's called Fiddlers Greens.

This has been a Public Service Announcement.

* The "wisdom" teeth are so-called because one is presumably wiser when they appear in late childhood, early adulthood. I call bullshit.

The United States Medical System, Part Three in an Infinite Series told partially through photos

A friend of mine in the epilepsy community contacted me this morning from Canada. She had just learned that the drug Frisium (same drug as Onfi, a benzodiazepine that I've written about millions of times over the years as it's a hideous pharmaceutical with little efficacy for controlling seizures but is intensely difficult, if not impossible, to wean) is being discontinued. She wondered if the same stuff was going down here in the Disunited States.

Here's the announcement that the Epilepsy Toronto organization published:

Medication Alert: Discontinuation of Frisium Tablets in Canada

"Lundbeck has decided to discontinue the manufacturing of Frisium (clobazam) Tablets in Canada. They expect the current inventory to be depleted by the end of 2018.
This decision was not triggered by a safety issue, but rather is based on the numerous alternatives available in Canada. The decision was not triggered by a safety issue, but rather is based on the numerous alternatives available in Canada. Lundbeck is communicating this change well in advance in order to give healthcare professionals, patients and families as much advance notice as possible so that Frisium patients have ample time to successfully shift to an acceptable alternative."

My friend told me that she tried to get to the bottom of this issue by speaking with the company and then the pharmacist. Lundbeck told her that they "don't normally talk to the general public" and that she should speak to her pharmacist. The pharmacist knew nothing and said, "You should just call your doctor and they will prescribe something else." That evoked a little -- ok, a lot -- of sarcasm, because anyone who knows anything about Onfi/Frisium/clobazam knows that it's nearly impossible to wean it once you've been on it for more than a few weeks, AND there actually are no substitutes except for, maybe, Klonopin, which has its own set of horrors. I felt some small comfort in knowing that even in Canada, big pharmaceutical companies and pharmacies are as obtuse and insensitive as they are here. Canadians just don't have to pay for the bullshit, I guess.

See the ticket price of a 24-day supply of the drug Onfi that I picked up for Sophie just the other day. It's written very, very small up there in the right-hand corner. Sophie's been taking this drug in all of its iterations (Frisium, Onfi, tablet Onfi and liquid Onfi, non-FDA approved and FDA-approved) for nearly ten years. The cost for us has ranged from $550 a month to $70 a month over the course of years, and I've drug-muled it from Canada (you can find those posts if you go to the search bar and put in drug mule), gotten it from pharmacies in Germany and England, been reimbursed by non-profit foundations that are underwritten by Lundbeck (what a racket) and just plain coughed it up (the money, that is). Today, I can only get a 24-day supply because of the tight regulation of opiods and benzos, and since we use the liquid form (more expensive) and the pharmacy can't open a bottle to give a partial amount, we are stuck paying the co-pay every 24 days instead of once a month. Less drug, more money paid by us. Less drug given, more money made by insurance company, pharmacy and pharmaceutical company, I guess.

We have, above all, always been a slave to this drug and the cockamamie system because of its potency and powerful addictive characteristics. The drug has absolutely never really controlled Sophie's seizures. She was given her first benzodiazepine Nitrazepam at THREE MONTHS OF AGE on what was termed compassionate protocol because it was not FDA-approved. She was also given Ativan, Tranxene and Klonopin, none of which helped her and all of which were a bitch to withdraw. My tiny little mother mind™ wants to sit here and dwell on the fact that all of these drugs were and continue to be prescribed and given to little babies without any real knowledge of their long-term effects, but what's the sense of dwelling on The Great Unknown?

Exhibit A

It enrages me in the way that those of us who do this thing are enraged. We function quite well at a slow simmer.

Anywho.*

After my friend contacted me, I put on my Pharmaceutical Sleuthing Hat (see above).

I read about the Canadian shortage here. I called Lundbeck here in the Disunited States and spoke to a very chipper man who claimed to not know about the issues in Canada. He assured me that the drug Onfi had no manufacturing problems but that there was some rumbling about contracts with a certain distributor, Amerisource Bergen. There are, evidently, problems in the wholesale distribution area -- particularly with some pharmacies. Lundbeck is working on the problem but does not foresee any stoppage in manufacture of the drug. I wondered why the same drug, manufactured by the same company under two different names, was being discontinued in one country but not the other. The Chipper Pharmaceutical Dude had no answer for that. There was a point where he said that he'd speak with a supervisor about what was going on in Canada, and when I told him that I already had that information, he kept talking and talking over me, saying the same thing and for a split second that might have stretched on into eternity, I wondered if he was a real person or some kind of robot endowed with pharmaceutical intelligence. The chippery at that point gave me the creeps, so I refrained from asking him why my current supply costs $1584.65. I refrained from asking him what sort of collusion Lundbeck and CVS and Blue Shield have that they can't give me a third bottle to cover Sophie for more than 30 days so that I don't have to make a co-pay twice a month instead of once.

So it goes, as Vonnegut said so pithily.

I wonder what it would be like if Vonnegut were the Chipper Pharmaceutical Dude. My mind goes hither and thither, thither and hither. That would be Joyce.













* I use this word facetiously as I despise it. If you're a New Reader, know that. It belies the intensity of the situation described.

VNS: Very Nerve-Wracking Shit or Virtually No Science*

Blind belief in authority is the greatest enemy of truth.

Albert Einstein

Back in the dark days of the last century -- let's say, 1999.

Sophie attended a wonderful preschool over at UCLA. There were two kids in her class who also suffered from refractory seizures. The two kids were just a couple of years older than Sophie, and their mamas were rocking brave and powerful. When they heard about a new medical implant device called the Vagal Nerve Stimulator, or VNS, they researched it and talked to their neurologists about it and ended up flying to Ohio, I recall, where the company that had created the device, Cyberonics, was implanting it. I remember that not many children had gotten the device yet, but it looked promising, and we in the Refractory Epilepsy World were  quite used to having treatments thrown at us that were, if not experimental, than approved for use in adults or whose mechanism of action is unknown. I'm only telling you this part because I want you to know how long I've known about the VNS -- since its earliest use, even -- and how this whole thing that we call the treatment of refractory epilepsy works.

We are strong and brave and desperate people.

I learned over the years that while the VNS could be helpful, the efficacy rate wasn't that great (the usual 33% noting "improvement" statistic) and, combined with the possible side effects, I never felt any compelling reason to try it on Sophie. I think I was quite sick of the whole shebang by the time it came around, but not quite at the point where I vowed to never try a new drug unless Jesus Christ offered it to me.  I never had a good feeling about the device, never really spoke to anyone who had gotten it (and I knew A LOT of people who got it) and was glad to have done so. I was probably also overwhelmed and lazy about it, too. I heard some horror stories, but there are horror stories for literally every single epilepsy treatment, including the ketogenic diet (which was a horror story for us, too).

Oh, wait.

There is one epilepsy treatment that I've never heard a horror story about, and that's cannabis, but that's another post.

Not a single neurology appointment passed without mention of the VNS. I'm dead serious. I laughed off or declined the VNS suggestion every single time it was trundled out by both beloved and barely tolerated neurologists over the twenty or so years that device had been around. Most recently, I learned that Sophie's old neurologist, whom I used to call The Neurologist before I fired her, has been paid by the company that manufactures the VNS which was an explanation, I guess, for why she suggested it in every single appointment we had with her. Honestly, if you go over to the right side bar and search for the VNS, it'll come up numerous times as part of my conversation with The Neurologist.

These folks are throwing darts.

Try this.

Try this.

Try this.

Where am I headed?

I was also going to tell you about my oft-irrational but actually hard-won and some would say earned distrust of the Medical Industry (emphasis on the word industry, so don't jump in here with your exclamations of all the good and wonderful caregivers in the medical world), particularly when it comes to the authority of the CDC, the almighty FDA and other Powers That Be. I had a bit of a tiff over on Facebook (like a fly to shit) about the flu vaccine. I object to the mainstream media pushing vaccination policy as a morality play. You know what I'm talking about, and I'm not going to belabor it here. Some woman with whom I was engaged in this ridiculous Facebook discussion finally had the last word with a patronizing Okey Dokey, and I let it go. Because, you know, Science is infallible and The Powers That Be are to be trusted, and if you don't you're anti-science and a crazy person.

Wait. Where was I headed? I'm off track.

So, this is where I was headed:

Are Implanted Medical Devices Creating 'A Danger Within Us'?

If you can't listen to the whole segment, read or at least skim the transcript because it's mind-blowing.

Especially the VNS and epilepsy part.











* or the Vagal Nerve Stimulator

The United States Medical System, Part Two in a Series Through Photos

23 years, beginning in infancy, four different benzos (Nitrazepam, Ativan, Klonopin and Clobazam),
zero seizure control,
high dependency, still being prescribed to babies and young children
despite little to no evidence of efficacy
THE REAL TIGER MOTHERS take charge

The Price of Addiction
(deductible finally met in November because of MRI, etc., catalogued in The United States Medical System, Part One in a Series Through Photos
co-pay for drug over eight years has ranged from $0 to $780 according to the whims
of the United States Capitalist Medical System
where patients are consumers and the HHS Secretary is Big Pharma

Never Go Backwards
(went backwards at behest of Neurology BigWigs one year ago, a seriously fucked up decision)
backwards means once you start to wean, don't jack up the dose
backwards means after weaning 80% over three years, you jack up the dose to a larger amount than four years previously
#nogood
#neveragain
#tigermothersknowbest
#trustyourgut

The United States Medical System, Part One in a Series Through Photos

October 5, 2017
MRI of the brain with anesthesia
Cedars Sinai Medical Center
Sophie, 22 year old woman
refractory epilepsy patient

Hospital Thoughts - Day Five

It's all Dr House over here with a clusterfuck of neurologists and dermatologists and possibly allergists and rheumatologists all trying to figure out the Great Hive Seizure Mystery. Great minds don't think alike, at all, and everyone has a different suggestion for what ails Sophie. There will be more tests, and I'm getting just a teensy tinesy bit sick of all of it. Sophie has acquired a urinary tract infection while here which all conceded was hospital-borne. Charming.She is now on an antibiotic for that. She isn't getting any more Vimpat, so I guess at the very least we shall be skipping out of here on only one anticonvulsant in over eight years. That the one anticonvulsant is the benzo Onfi that we rather laboriously weaned her partially is a major bummer, but I'm not going to complain. There's still the hive thing, and the dermatologist who was literally the only physician that's appeared who's older than I am suggested that it was probably coincidence, I sighed and felt that momentary panic that is probably PTSD but has some validity as the real terror that once again, no one knows. Methusaleh had a six-pack of residents and students who were terribly sweet and earnest. One even asked me if I'd read Ann Fadiman's When The Spirit Catches You, and I almost told her that I read it probably before she was born and that despite its reputation for being culturally competent before that PC expression was even invented, I still feel it was biased toward the almighty Western medical system. Instead I told her that it's a beautiful book and smiled. Methusaleh talked about all kinds of things that hives can come from, and, frankly, I started to get a little nervous because it's all so --  well -- tentative and hypothetical. All suggestions are floated to me, sitting like some kind of dowager or dragon queen in a putty-colored fabric chair with a magnificent view of the mountains to my right, out of reach.I'm a dragon queen with a Bachelor of Arts degree in both English and French literature. I'm trying to finish a Norwegian novel called The Birds by Tarjei Vesaas but have felt so distracted the last few days that it's all I can do to ask why the food services department doesn't carry fresh fruit and only canned. My tail is curled up under the chair and a copy of Real Simple lies open on the purple plastic footstool to a recipe of Polenta Bake with Shrimp. But that's only a decoy as I'm actually plotting an aerial escape out the window with Sophie under my arm. Our cave is glinting there, under the setting sun and that long, purple cloud.

Fight the Power as an Italian or at Least Wander Around It*

Italian anti-Fascist fighters, November 1944

Oh dear Lord. Please no one ask me what I think of the woman who identifies as a black person when, in fact, she's a white person. I just don't have it in me to join the discussion and will leave it to less exhausted finer minds than mine to figure it all out. I'm generally fascinated by these kinds of things, but lately I've felt nearly comatose and even bored when the newest wild story comes out. I know that says more about me than anyone else and is probably indicative of mild depression or at least a dissociative disorder, but it's the truth. I'm having a hard time not saying I don't care when people ask me what I think about anything these days. Ironically, one of the things I'll be working on beginning next week when I leave for my residency at Hedgebrook involves my own wrestling with identity -- both mine and my daughter's. Hopefully, I'll be out of this funk and able to organize my thoughts and care.

As I drove around the shitty this afternoon, listening to the interminable talk about the woman who identified as black but who was really white, I did think about my own ethnic identity -- how I'm one-half Italian, one-quarter Syrian and one-quarter Scotch English. If people ask me what I am, I tend to say Italian because I definitely identify more with my Italian ancestry than the Middle Eastern or northern European. I can't tell you why exactly, but I feel Italian. Yesterday's post provoked some really great comments, including Mary Moon stating that she'd heard Italians don't believe in God so much as God's mother. Ha! That's true of me!




I was also thinking about The Powers That Be today, mainly because I got a letter in the mail informing me that our insurance company, Assurant, will no longer be in the health insurance marketplace as of January 2016 so we'll have to start looking for a new individual plan in November during that open season which sounds like we're all going hunting (and wouldn't you love to hunt down an insurance company and hang it, stuffed on your wall?) but actually means you're allowed to enroll in a certain window. Insurance companies and the whole healthcare system in this joint are kind of fascist, don't you think? God, I wish I could say that I don't care, but I'm going to have to care and scurry around and do all the stuff that needs to be done, including making sure that Sophie's Providers are covered and that her drugs are covered and that we can afford the premium and it's all so exhausting and I just don't care.

On the other hand, I've been engaged with one of my favorite Realm of Caring people, Heather, on Facebook who has done an incredible amount of work with this medical marijuana thing. She's one of my heroes, to tell you the truth, and just a pleasure to know as a person. She's indefatigable -- probably not unlike one of those Italian anti-Fascist fighters even if she doesn't exactly identify as one. She shared my recent blog post titled Access Public Service Announcement where I took to task the head of the American Epilepsy Society who was just so dooooooown on that recent Dateline special. It turns out that I did a radio show back in April, and the doctor with whom I spoke was the very same one! You can listen to it here. She was equally as dooooooooown on the radio show, too, and Heather and I can't figure out why these people aren't more excited by our stories (Heather's son has been seizure-free with CBD for nearly two years!). I said would it kill them to express some enthusiasm and marvel a bit because they've been stymied so long? Then again, maybe they just don't care, and lord (or given my Italian identity should I say Mary) knows, I understand that.








*This post is a ramble, a wander and it might make no sense. Read at your leisure.

Fycompa, Blue Person Syndrome and Homicidal Ideation

So, I didn't tell ya'll about the conversation I had with The Neurologist the other day when I took Sophie to a routine appointment there. We talked about arranging an ambulatory EEG, and somewhere in the discussion I asked her what the new drugs in the pipeline were looking like. I asked her about that drug that makes your lips blue and she laughed, ruefully. It's obviously a hard sell, she said. I still remember the titters that followed a discussion of this drug, Potiga, by an eminent Neurologist From the East Coast at last June's Epilepsy Pipeline Conference. They made me sick. That side effect is called Blue Person Syndrome. I'm not making this up. If you're one of those folks who believe in Science As It's Practiced in The Greatest Country On Earth, read about it here. If you're like me and believe yourself to be a part of a lifelong Monty Python skit, take my word and read on.

Anyhoo.

Evidently, there's another drug that The Neurologist is going to try on a few patients. It's called Fycompa. Some of you long-time readers or epilepsy drug enthusiasts might remember that I wrote about this drug a few years ago when it was newly approved by the Almighty FDA. In fact, it was over two years ago that I wrote that post. Please click on it and read it, particularly the end because -- well -- because I told you to.

Are you finished?

Remember that I wrote that in 2012. Sophie was 17. Back then,The Pediatric Neurologist and I batted around the idea of trying it for a bit, but I just couldn't do it. It had become my philosophy to decline all new drugs for Sophie's seizures unless Jesus Himself offered it to us. Cannabis was not even a twinkle in the eye of -- well -- no one I knew back then.

Are you still with me?

So yesterday, February 10th, 2015, The Neurologist brought Fycompa up but also shared with me that THEY (always capitalize the word THEY when you're referring to The Medical Powers That Be, The FDA, The CDC, etc.) have learned that the drug can cause homicidal ideation or rage. Before we start wondering how, exactly, THEY figured that out, let's look at the website for the drug (the banner at the top of the website is reproduced above without the words because apparently THEY don't like you copying THEIR pictures). If you did your due diligence, my post from 2012 highlighted the following side effects of Fycompa:

The drug does have some known adverse effects associated with this drug. The most common ones are anxiety, confusion, imbalance, double vision, dizziness, gastrointestinal distress or nausea, imbalance – some of which may lead to falls on some occasions, and increased weight. The effects of Perampanel on tasks involving alertness and vigilance, such as driving, were additive to the effects of alcohol itself. Multiple doses of Perampanel increased levels of anger, confusion, and depression, particularly when taken with alcohol. Fycompa may lead to euphoria and other similar feelings in some patients. Thus, the drug will be scheduled in the United States. Final labeling and information is not yet available.

As you can see, euphoria is enlarged by me because it's sort of an operative word. 

Now go back and look at the Fycompa website today and notice the new BLACK BOX warning:

WARNING: SERIOUS PSYCHIATRIC AND BEHAVIORAL REACTIONS

• Serious or life-threatening psychiatric and behavioral adverse reactions including aggression, hostility, irritability, anger, and homicidal ideation and threats have been reported in patients taking FYCOMPA
• These reactions occurred in patients with and without prior psychiatric history, prior aggressive behavior, or concomitant use of medications associated with hostility and aggression
• Advise patients and caregivers to contact a healthcare provider immediately if any of these reactions or changes in mood, behavior, or personality that are not typical for the patient are observed while taking FYCOMPA or after discontinuing FYCOMPA
• Closely monitor patients particularly during the titration period and at higher doses
• FYCOMPA should be reduced if these symptoms occur and should be discontinued immediately if symptoms are severe or are worsening

Keep reading about suicidal ideation which THEY make pains to attribute also to epilepsy itself. The cynic in me or maybe just the batshit crazy person in me believes that THEY are covering their asses. Basically, epilepsy and depression are roommates, so if you up and kill yourself one day while on Fycompa, I imagine THEY will point out that you might have anyway, without the drug.  Notice as well that this drug is a Schedule III drug and remember that it is being prescribed for children and adults aged 12 and up. Remember that Marijuana is a Schedule I drug and that many in The Neurology World have denied many children who suffer from refractory epilepsy their blessing to try it and are only slowly coming round to even calling for studies, and that's only because families like mine are on the train that's left the station and THEY are trying to catch up.

But I digress.

My other favorite statement on the website is this: Anyone considering prescribing FYCOMPA or any other AED must balance the risk of suicidal thoughts or behavior with the risk of untreated illness.

Fycompa basically went -- in two years -- from being a drug that can cause Euphoria And Other Similar Feelings to one that can cause a person taking it to fly into a murderous rage. Oh, and you can take the drug if you're twelve years old.

You'd know what was up, basically, if I decided to try this drug on Sophie. Go ahead and kill me now, I'd say as I gazed into her big, dark eyes.

I can't count the number of times over the last couple of weeks I've read the words of citizen scientists, of scientists, of doctors and journalists and mommies and daddies and presidents and Oprahs and Willy Wonka himself blathering on about their trust in THE DATA AND THE EXPERTS.

What's my point? I think you know it. This is my experience, and I'd venture to say that it's tens of thousands of other people's as well. These are the facts. This is the world I interface with every single day and have done so for two decades, and it's insane.

The House That Jack Built, Part Two***

illustration by Collette J Ellis

This one is a prose poem, sent to me by the clerk from the company who took the paper from the doctor who ordered the EEG for the girl whose brain loves to seize. I told her last week that the company needs another paper from the company who took the paper from the doctor who ordered the EEG for the girl whose brain loves to seize.

Elizabeth Aquino

I called the phone# you gave me and after a 30 minute wait I spoke with Brandi.  She said I needed to speak with the group and told me to call 800-522-0088.   The interactive voice system told me there was a 49 minute wait!    I will try again in the morning when they first open to see if I can get through then.

Thank you for your attention to this matter.  

Please notice that this is all completely out of the doctor's hands, the doctor who ordered the EEG for the girl whose brain loves to seize, a situation which underscores how utterly laughable the conservative's complaint is that "I don't want no government coming between me and my doctor." Because we all know how efficient the private insurance system is -- efficient to an extreme when it comes to collecting your monthly premium and cancelling your coverage if you're late, but otherwise -- well -- that's another story altogethe, perhaps more in keeping with Grimm or even the Marquis de Sade. I've also got to keep you updated on the convoluted Case of the Missing Wheelchair, the latest Nancy Drew installment. Stay tuned.




***Part One is here, in case you missed it.

Dispatch from the Revolution: Cannabis Update

Sophie continues to do remarkably well after nearly four months on Charlotte's Web. She goes weeks without any truly discernible seizures (she used to have from 1-5 tonic-clonic episodes and many partial complex/absence a day), and the breakthrough ones are mild and short. She has no more clusters of myoclonic seizures (they used to happen several times a day and lasted, sometimes, for 45 minutes or more). We have done three weans of her Onfi, the benzo that she's been on for six years. We've reduced the drug very slowly, about 33%, and the difficulties she had formerly, whenever we weaned a benzo, have just not happened. Yes, she's had some "bad" days when she appears uncomfortable and agitated. She has had some mild withdrawal seizures on around the tenth day of the wean, but for the most part she is good, and I attribute that good to the presence of cannabis in her system.

I listened to a podcast the other day of Dr. Orrin Devinsky from NYU. He was quite positive about cannabis and epilepsy, albeit cautious, and seemed far more understanding of families' desperation and desire to obtain the medicine for their children with refractory seizures than he was a few months ago when he wrote an Op-Ed in The New York Times. He even went so far as to state how "promising" the treatment looked. The Epilepsy Foundation of America has been surprisingly supportive of families (part of its charter and mission, after all), so I feel hopeful, too, about that. I type all of this, though, with reservation, because I also sense a growing rift between neurologists (The American Epilepsy Society), who remain obdurate and arrogant, and families, and this rift is sensed as a rumble, a muttering, an antagonism inherent, it seems, in the industry (because let's face it, medicine as it's practiced in this country is as much if not more an industry than a healing art), despite all the efforts for "family-centered care." I've heard of neurologists, still, completely disdainful of this therapy, towing the party line of testing, testing, testing, with a couple arrogant dismissals of "anecdotal" evidence.  And I've heard from several people whose neurologists are downright abusive, going so far as to call some parents uncompliant and reporting them to "authorities," making it difficult to get traditional medications for their daughter and other horror stories.

Anywho.

Here's Sophie's story -- call it anecdotal or call it Truth. It makes no difference to me what you think, what they think.

I know it's truth.

Sophie never had a day free of multiple seizures for the first nineteen years of her life and was subject to all manner of approved double-blind tested placebo controlled and studied drugs. Many of these drugs were not approved for use in children under the age of seventeen and most were not studied for long term use in combination with multiple other drugs. She was on nineteen different medications, was evaluated for surgery, had two six month trials of the ketogenic diet. She suffered from serious side effects from nearly every medication and endured considerable suffering when medications were withdrawn because of inefficacy (including one rare complication called pseudo-tumor cerebri -- look it up, not for the faint of heart). She took medications to mitigate side effects, went through several periods of anorexia and sat for hundreds of hours with an IV drip of immunoglobulin. She began taking Charlotte's Web in late December of 2014 and within a few weeks of treatment had periods of seizure free days for the first time in her life. Side effects noted were smiling, alertness and relaxation. When we knew things were looking "up," we began a slow process of weaning her from one of the two powerful anti-epileptic drugs that she's been on for years (and only on for years because we were afraid to withdraw them and put her through that shit). So far, she's off more than 30% of a powerful narcotic and continues to have large stretches of time free of debilitating tonic-clonic seizures, partial complex seizures and myoclonic clusters. We have not used Diastat, the Big Gun, in months. We will continue to slowly withdraw the benzo and then, hopefully, the Vimpat. If she continues to do well, the world is our oyster, no? Or is it the pearl?

How's that for anecdote?

Favorite Comment of the Week from a Blog Post

The other day, I asked you readers what you felt insane and bitter about, and the replies I got were fantastic, but the one received today said it all:

I am laughing bitterly at the fact that I could easily get the kind of pot that spikes my seizures in the next half hour from Brian, the dude down the hall in my dorm that my friends and I have affectionately nicknamed "Salty Jesus," due to his hair's continual beach-swept, biblical appearance. But after more than 10 medications, a diet and brain surgery, I can't legally get the marijuana that could help my epilepsy. All hail the American medical system. 

Yes, Anonymous:  all hail the American medical system. I don't appear to be any closer to getting the CBD for Sophie despite having researched myself into near-expert knowledge. I guess the only thing to do at this point is wait.

I'm waiting.