Tuesday, September 4, 2018

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.


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.


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.


  1. I HATE THAT YOU NEED BIG-GIRL PANTIES! And I hate that there is no big brass band that plays while Idris Elba presents you with a plaque made of platinum and a check for $1,000,000.00 for being right. I hate that the system is so fucked up and that you are the one who continually stokes the fire beneath these "professionals'" asses and that, in the meantime, Sophie is struggling and you are traumatized over and over again. Fuck fuckity fuck. Fuck them all. Sending you love and light and permission to tear off those panties and mail them to the insurance company after they finally get done messing around.

    1. This. It makes me sad and angry beyond words that you need to deal with this. F*cked up system, indeed.

  2. Well, as they would say on Trailer Park Boys, "Oh my fuck."
    Woman, you are hereby awarded BEST AND WISEST AND STRONGEST MOTHER IN THE ETERNAL HISTORY OF THE UNIVERSE AWARD and you may use that title in all future dealings with insurance companies. Of course this will not help one bit but still, it is true and you are.

  3. Ugh. Insurance companies seem to ALWAYS deny IVIg REGARDLESS of doctor's orders, efficacy, and lower cost when administered at home. I mean almost ALWAYS. We got lucky when my girl needed it, AND needed it to be given over 20 hours which meant overnight in the hospital. I don't know why our insurance never denied us...but I can count many times others have had to petition 2 and 3 times. AND the fact that you are still STANDING, maybe wobbly and tired, but each bout you get back on your feet, is really a combination of love, routine and spirit. What else are we going to do? But your humor, now THAT, and your incredible way with words, is a saving grace. So many kudos and hugs to you.

  4. Holy Mother of Gawd. What an extreme shit show. Sophie -- the dearest young woman who deserves every good thing that comes her way now and in the future (not to mention the past) -- gets shortchanged once again by the ineptitude of the medical/health/insurance complex. I'm so sorry, Elizabeth.

  5. goddam, Elizabeth, hard to respond without a huge measure of anger, frustration, grief, some hefty swears- my god!If love is any measure you are receiving loads, as well an admiration- I would have buckled long ago , You are mighty indeed you are. To say "sorry for this" is way too shallow and pat sounding, but I am, SO sorry for this.

  6. Oh heavens above. This is cruelty. I am so sorry you have to live through this.

  7. Oh heavens above. This is cruelty. I am so sorry you have to live through this.

  8. With you. So pissed. You’ve made good use of one magic phrase, “Let’s just go to the hospital where a bed costs several thousand dollars a day.” The other one is, of course, my current favorite with social services, “So who’s liable?”

  9. Hate this!!!!! The threat of hospitalization generally works! The system is so f#$%ed it's set uo to play for more treatments IN the hospital along with the exorbitant hospital charges for room board and all else. I have no doubt you will prevail but at what cost and that's what makes me so pissed off.

  10. Shit. I'm so sorry this is happening. Your big girl panties are bigger and stronger than their big girl panties.

  11. Those big girl panties must have special powers. That you can relate all this so succinctly and keep your sanity all these years speaks of the strength of your mother mind. Wish I could send you some. Much love and please may Sophie get what she needs quickly. Our so called healthcare system is indeed cruel and inhumane.

  12. I have to say this, the health care system in the US is broken. To allow insurance companies, companies that are in the business of making money, to decide what treatment is and isn't allowed is incomprehensible.

    And you have PTSD from having to deal with said broken system.

    I'm so sorry Elizabeth. What a fucking shit show. It's a good thing you're a mama bear:)

  13. What the actual fuck? This is unbelievable. It’s abuse, plain and simple. The all mighty dollar and fucking assholes win this round. Fuck all the pieces of shit involved in the process of this denial. Fuck trump while I am at it.

  14. i have my usual reaction: you are an amazing woman and mother. that you can control the dialogue in these interactions is extraordinary, and of course the result of years and years of practice. but still. you are incredible. otherwise, i basically double-down on and support to the highest power every word of your friend Birdie, above.

  15. Your portraits of Sophie combine love and pain in an extraordinary way.

    Sending much love to you and all the mothers and fathers who have kept their children alive and sometimes thriving despite all odds against them as they try to work with an anti-health system that fails so many at so great a cost. Our efforts may not have changed that system or any other broken system in any great way and yet we continue to make those efforts. We cannot more than we can do. It is enough.

  16. Heart hurts for you and for Sophie, too. I'm so sorry.

  17. It is indeed exhausting to be in the Ring for years upon years of Rounds... even those Rounds we 'Win' leave us battle scarred... those we 'Lose' and have to do rematches on are more the norm... there are times when wearing them down with Appeals wears Caregiver me down to a nub. May you and Sophie WIN the next Round, her very Life depends upon the Victory! Big Virtual Hugs and know that we are in your Corner!!!

  18. Congratulations in making it two decades into this battle. I too live this daily for 10 years. Dark humor, faith, counseling for PTSD and my family and friends keep me going.

  19. So this is the THIRD time that Sophie has been diagnosed with ESES? Good grief, you should get a special commendation for your persistence and patience. I'm so sorry, as always, that you have to go through all this grief.



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