Showing posts with label legal. Show all posts
Showing posts with label legal. Show all posts

Monday, February 24, 2014

Mito Madness


dear bch,

your name is eerily similar to bcw, but alas, you are a beast of a different color. you both steal children, but you seek to do it right out in the open. bcw is a sneaky evil bitch. if i had my way, you would both be six feet under, back from whence you came. the laws, the very ones you violate without consequence to you, prevent me from furthering my wishes into a makeshift plan. aaaaaaaaand....that’s not my style. i’d rather inflict the same seething misery you inflict, unto you, over a much longer period of time while i watch you suffer. think the movie seven.

let’s review. teenage girl has already been diagnosed with mitochondrial disorder, under the care of one of the world’s leading specialists for said disorder, dr. mark korson, from tufts medical center. you don’t need a link, he really is that well known.

chief of the program, director of the clinic, this leading physician had already diagnosed this girl’s sister and was treating both of them for mitochondrial disorder. girl becomes ill and is brought to your emergency room by parents seeking health care for her. they went to your facility at the request of one of her other physicians who recently had moved to your health care institution (light on the health care, heavy on the institution.) while there, she was not examined by that physician, and subsequently removed from parental custody and diagnosed with a psychological disorder. her treatments for mitochondrial disease, including a gastrointestinal intervention and her “vitamin cocktail” were discontinued. i put the vitamin cocktail in quotations as it has been presented, however, any parent with a kiddo on the spectrum or with mito, in the free world, knows that it is the standard of practice for treating mitochondrial disease. google it. not brain surgery. i digress. child is removed from parental custody, placed in a locked psych ward with extremely restricted visitation by parents and left there for.....wait for it.....a year. twelve months. during which time, child protective services has not appointed a child advocate to her case. multiple court dates, the patient’s own diagnosing physician testifies in court, and yet, the child remains in custody of the state. judge orders a child advocate. sure, because that’s really helpful now. child’s condition deteriorates as she is not receiving treatment for her already diagnosed complex multi-system disease, and therefore is suffering, decompensating and her life is in danger. we don’t know what psychotropic medications the physicians “overseeing” her care are prescribing, so they may be contraindicated for her with her metabolic insufficiency and actually adding to her already tenuous health status. in other words, they could be killing her. now, to complicate matters, the judge seeks to put a gag order on the parents just as this case starts to get some press. (hmmmm.....interesting. because i’m pretty sure if you stole my child and then tried to kill him, me talking about it would be the least of your worries, however, her parents are much better citizens than i.)

now...i have to say it. blessed be the child’s parents who have not already sold every last possession in order to raise enough money to hire some black ops style recon crew to bust their child out of there and then escape with their family to another country, killing the physicians and cps workers with stray bullets, on accident in the process. however, if that’s the plan, there’s a few overtime shifts with my name on them and a modest size donation. but because her parents aren’t murderous lunatics, like yourselves, they have chosen the righteous path. they have complied with every cockamamie stipulation put unto them. right up until the point where her dad spoke on a national news channel violating a gag order that was based on some law made up in your own head that removes a person’s freedom of speech if said freedom of speech discloses the kidnapping, drugging and violation of civil rights, and criminal activity that you, and the judge, sanctioned. but....only in that case....otherwise,speak away.

now, i thought of including the diagnostic criteria here for the psych disorder you picked, somatoform disorder, but really what difference does it make. we both know it’s bullshit. if you look it up for yourself you can clearly see that in order to meet the criteria the patient would have to be void of any other known medical condition that could cause the same symptoms. this child went to the emergency room for fluid resuscitation during a flu-like illness, a very expected treatment for a child with mitochondrial disease, and was kidnapped, locked against her will, denied medical treatment, and drugged. locked in seclusion. this case alone, violates so many rights and laws meant to protect not only patients, but people in general i am bewildered as to how it could go on for so long. i know we all are. and yet it did and it does. here’s the even bigger implication. after this case, what parent, in their right mind, would willingly take their child to the emergency room for treatment of mito symptoms from now on? bch has single-handedly denied medical care, based solely on fear, to thousands of children across this country. this was not some obscure disease with only one physician from some unknown hospital or private practice physician with his own ideas. this was a well-known, well documented, previously diagnosed disease by a leading physician in our country from a well-established big name medical center and university. what could you possibly tell a parent, now, to convince them that their child will not suffer the same fate? what‘s the outcome of that? a mitochondrial crisis during illness can be fatal. how can we, as parents, be asked to be in that position? take your child to the hospital to save his life, but risk losing him and having treatment withheld and possibly end his life because of it?

if i went out tonight and drank and smoked some crack and robbed a gas station and on the way to jail told the police i was having chest pain, they would take me to the emergency room. and i would get a chest pain “work up” to make sure my sorry ass wasn’t having a heart attack. and if i was, i would get treated. but at no point would they lock me in a psych ward and drug me. although it sounds goofy, it really does happen. because criminals, and drug addicts know the two complaints that will buy them a trip to the er and quite possibly an admission. chest pain and abdominal pain. swallowed some batteries...er. ate some glass...er. swallowed some razor blades...er. crushing chest pain after snorting that last line...er. so, i mention this to demonstrate two things. one, crack heads get great health care and kids with mito don’t. and two, some people just know how to work the system.

wadda mean?

well, just after i got done thinking to myself, why would bch do such an egregious thing? i mean, we all know we (parents with kids who have made up medical diagnosis) won’ t stop until there are criminal charges filed and someone’s sorry ass is in jail where they may or may not fall on a knife. then i saw this...

“children who are wards of the state may be included in research that presents minimal risk…or greater than minimal risk with a prospect of direct benefit.”

...posted on the blaze. and i started to think. because, probably, this policy is present at many, many institutions and it’s just being publicized because of this case. but it reminded me of this frickin douchebag, tool...


and how part of her research includes denying children who are autistic and have severe health problems, adequate health care and re-naming it “catatonia” so it can fit into her research protocol where kids who clearly have gastrointestinal disease get shocked with electroconvulsive therapy instead of getting treatment...

dr. wachtel is also pursuing -- with colleagues at kennedy krieger institute -- the combined usage of psychopharmacological and behavioral treatment modalities in the resolution of severe problem behaviors, such as self-injury and aggression, in children and adults with various forms of developmental disabilities.

(note to self…..to avoid incarceration in a federal prison do not ride an elevator with this woman where there are no cameras)


and then it occurred to me that possibly there’s a research protocol going on that we just don’t know about. hence the long hospitalization. only recently has this child been moved to another facility, which is strictly for psych treatment. and in order for her participation in the research protocol to be completed (we,as autism parents know about how if you pull your kid out of the research protocol half way through, they can’t use your shit...we’re just smart like that), she had to be kept inpatient for that long. because, honestly, does anyone stay inpatient in acute psych for a year? no. we all know that doesn’t really happen. they would have looked for someplace for her much sooner...ya know...if her parents didn’t have a problem with all the illegal stuff, and abusive nature of the program and all.

so what do we do now? how do we reconcile this most unbelievable and tragic chain of events that started with parents bringing their sick child to the emergency room for emergency treatment? well...there is only one thing we can do. pray.

i pray that this child remains stable enough until her parents can rescue her from the oppressive violation of her being, perpetrated, willfully by individuals employed by your healthcare organization.

i pray that the judge sees that he has done nothing to help this child and is risking her life by keeping her from her parents and her doctors.

i pray when those physicians and psychiatrists lay their heads down at night that they wake up in the depths of hell, suffering every moment for all of eternity. nothing they could ever do good, can undo the bad they have already done.

i pray that all those parents scared to bring their sick kids to the doctor and to the emergency room, overcome their fear and know that not all doctors are bad, and some really do care. because the alternative, can be devastating.

i pray that Jesus will watch over this child and keep her safe until she can be saved.

i pray that other families come forward and tell their stories of their children so that one more child can be saved from this travesty.

i pray that every person that reads this horrendous writing will say a prayer for this child, and maybe pick up the phone and make a call, or sign a petition, or make a donation to help this child.

lastly

i pray that justice will be served.

amen.

bch, you may not violate every patient right, parental right, civil right, and human right because you feel like it. because you have a big name, or a judge, or cps, or a research protocol. these are people, this is a child. and you have a legal and ethical obligation to treat her medical conditions, preserve her rights, and her parent’s rights.

you will be held accountable.

regards,

mrs. r

Wednesday, July 17, 2013

alex and patient rights



in healthcare, pain is subjective. even if you don’t think the patient is in pain, it’s not up to you. that’s the meaning of subjective and all ethical treatment of patients includes assessment and treatment of pain...period. unless you are autistic and nonverbal. then, by all means your pain is impossible to assess and doesn’t need to be treated. that’s just what happened to alex spourdalakis for 22 consecutive days as he lay on an er cart or in a bed in four point locked restraints (a whole notha story). so how does this happen? if you are what is better known in the medical community as a “frequent flyer” and you come into the hospital and demand that your pain is medicated, you get it. if your pain is assessed and you report it as 10 out of 10 while you talk on the phone, paint your nails and watch tv from your hospital bed...guess what...you get medicated. if that medication allows you enough pain relief to leave your hospital room, walk down to the lobby and outside to smoke a cigarette...or whatever...guess what? ethically, realistically, legally, and as a matter of protocol...your pain is assessed and medicated. now...if you’re a sick, nonverbal, autistic child covered in a rash, with abdominal distension, vomiting, and you are banging your head and ripping at your clothes...by all means there is no way those same healthcare providers can be expected to assess your pain.

here are some of the patients whose pain can be assessed with standardized pain assessment tools specially designed just for them:

newborn infants (they can’t talk either, sometimes they are on ventilators)

patients in a coma (can’t talk, most have a breathing tube down their trachea)

patients on hospice and so close to death that they are unresponsive (we can still assess their pain but no, generally, they can’t talk)

patients who suffer from burns (we can just go ahead and assume they are in pain)

patients with brain injuries (sometimes can talk, lots of times are confused)

patients that had some oral maxillofacial surgery (mostly, can’t talk, especially if their jaw is wired shut)


i mean, i can go on for days. there is an endless amount of examples of patients who have limited or altered cognitive, communicative and physical ability to express their pain and yet we, as healthcare providers, are not exempt from assessing their pain and treating it. this is why pain is the fifth vital sign. this is why there are all different assessment tools to utilize based on the patient population and their ability or inability to express pain.

why then, would this child, clearly having some type of issue, be denied the same basic right as all other patients based solely on his ability or inability to verbally express his pain? that inability to verbally express his pain directly related to his disability of autism makes this lack of assessment and treatment a discrimination against a disabled individual. and furthermore, the widespread practice across this nation in all healthcare settings, including the pediatricians’ offices, to not assess these individuals’ pain utilizing one of the many standardized assessment tools available to them and recommended for use, is nothing more than discrimination and a violation of the patient rights and civil rights of each and every single individual, each and every occurrence.  in addition to being unethical and guilty of malpractice, each healthcare provider that does not utilize an appropriate pain assessment tool to determine these kids’ level of pain, negates the need to utilize this symptom...pain...to determine the next diagnostic step. avoiding the subsequent investigation of that pain, findings, and treatment plan based on that symptom kind of eliminates the need for... ya know...the basic practice of medicine. deviation from this method used to determine a patient’s treatment—--patient presents with symptom, physical assessment performed, diagnostic tests performed as indicated, diagnosis is made, treatment is determined, follow up to see if problem is resolved or resolving—--is called malpractice. because anyone can just guess. so if these doctors and other practitioners want us not to think they are just idiots then they must display some type of behavior that indicates that they did attend medical school and a residency program and they do have some form of specialized training. because we can guess all by ourselves.  this may sound like a lot of jibber jabber to a HCPBBP (health care provider blinded by pharma) so here are  two scenarios that illuminate my point for those that may or may not have lingered around after reading the last post.

hypothetical patient one

patient enters the hospital through the emergency room with a diagnosis of abdominal pain. he was found down in an alley, obviously homeless, covered in bloody stool. incoherent, he is unable to communicate his needs including his pain. not sure how his diagnosis for pain was determined but thinking it was the most appropriate coding arrived at by the er physician?  i mean, the guy had bloody stool we can assume he was having some abdominal pain, right? so he is cleaned up, medicated, and scoped by gi (after their consult of course) and social work is gonna see him for help with a shelter and what not. he’s got a million other health problems that are addressed while he’s hospitalized, because he’s probably not gonna be following up with his primary physician, seeing how he’s homeless and all. easy peasy lemon squeezy.

hypothetical patient two

fourteen year old severely autistic, nonverbal child is brought in to the emergency room by his parent specifically for help with his gastrointestinal symptoms of abdominal distension, vomiting, decreased food intake, and increased aggression and agitation secondary to pain. these behaviors are new onset and he has not had any investigation of his gi system as of yet. diagnosis is made of aggression, not abdominal pain, because i’m sure that’s the most appropriate coding arrived at by the er physician? the child is kept in locked restraints for days on end without appropriate assessment or any assessment of or medication for pain at all. that’s okay..right?


even though all research says this……

“if the gastrointestinal disorder is recognized and

medical treatment is effective, the problem

behaviours may diminish. when abdominal pain or

discomfort is a setting event, psychotropic

medications are likely to be ineffective and may

even aggravate the problem if they have adverse

gastrointestinal effects.”

consensus report, american association of pediatrics -

buie et al., 2010

 

 and the aap says this…..

the most common gi diagnoses identified in children with asds include constipation, diarrhea, and gastroesophageal reflux, and these are usually treated in a standard manner.9,10 children with asds may not present with the typical symptoms of a gi disorder, however, and an alteration of their baseline behavior may be the only indicator of its existence. there is a serious dearth of adequately designed studies on treatments for documented gi disorders and their outcomes, including behavioral changes, in children with asds.


 

and this…..

individuals with asds who present with gastrointestinal symptoms warrant a thorough evaluation, as would be undertaken for individuals without asds who have the same symptoms or signs. evidence-based algorithms for the assessment of abdominal pain, constipation, chronic diarrhea, and gastroesophageal reflux disease (gerd) should be developed.

individuals with asds deserve the same thorough diagnostic workup for gastrointestinal symptoms as should occur for other patients. there is no evidence for pathogenic mechanisms specific to asds that warrant a distinct diagnostic approach. guidelines for the evaluation of common gastrointestinal symptoms have been developed by medical societies, medical centers, and managed care practices.9–12 few, if any, published documents have addressed modifications in the diagnostic evaluation on the basis of the needs of persons with disabilities such as impaired language. an evidence base is needed to guide evaluation and therapy, but until appropriate studies are conducted, guidelines must be based on expert opinion.


 

and this!!!!!

 

table 2

behaviors that may be markers of abdominal pain or discomfort in individuals with asds


vocal behaviors
  motor behaviors
changes in overall state

 

 

 

frequent clearing of throat, swallowing, tics, etc

facial grimacing

sleep disturbances: difficulty getting to sleep, difficulty staying asleep
 

screaming

gritting teeth

increased irritability (exaggerated responses to stimulation)
 

sobbing “for no     
reason at all”

wincing

noncompliance with demands that typically elicit an appropriate response (oppositional behavior)

sighing, whining

constant eating/drinking/swallowing

(“grazing” behavior)

moaning, groaning

mouthing behaviors: chewing on clothes (shirt sleeve cuff, neck of shirt, etc), pica
 

delayed echolalia that

includes reference to pain or stomach (eg, child says, “does your tummy hurt?” echoing what mother may have said to child in the past)
 

application of pressure to abdomen: leaning abdomen against or over furniture or kitchen sink, pressing hands into abdomen, rubbing abdomen

direct verbalizations (eg, child says “tummy hurts” or says “ouch,” “ow,” “hurts,” or “bad” while pointing to abdomen)

tapping behavior: finger tapping on throat

any unusual posturing, which may appear as individual postures or in various combinations: jaw thrust, neck torsion, arching of back, odd arm positioning, rotational distortions of torso/trunk, sensitivity to being touched in abdominal area/flinching

agitation: pacing, jumping up and down
 

unexplained increase in repetitive behaviors
 

self-injurious behaviors: biting, hits/slaps face, head-banging, unexplained increase in self-injury.
 

aggression: onset of, or increase in,

aggressive behavior

     

and the joint commission says this…..

you have a right to have your pain addressed

you have the right to care that is free from discrimination.

this means you should not be treated differently

because of:
age
race
ethnicity
religion
culture
language
physical or mental disability
socioeconomic status
sex
sexual orientation
gender identity or expression

http://www.jointcommission.org/assets/1/6/know_your_rights_brochure.pdf

 

but..

these kids are just psych. so we “snow him” with psych meds and don’t investigate his pain or gi symptoms and lock him away as soon as we possibly can. oh, wadda mean? no psych place will take him...well wtf? why not? because he has too many medical problems? well i thought we cleared him medically? let’s just let the kid sit there, locked down, in pain while we argue about it for 25 or so days. in the end we’ll dump him out because insurance isn’t gonna pay any more days and we can’t find anywhere to take him. even though it’s our job to ensure a safe discharge, and we didn’t, and his mom killed him nine days later, don’t worry because no press outlets will say our name anyway and the mom is in jail so nobody will be coming after us, let alone some other crazy ass autism mom who has over 700 emails about this kid, including internal hospital emails stating we never intended to treat this child to begin with....i digress

now, i don’t want any haters saying i don’t think the homeless guy should get treated. in fact, i have bathed, fed, and medicated more homeless guys than all of you added together so shut that shit right up. what i am saying, is do you think our kids could receive the same care as everyone else? just that, nothing more, nothing less, just the same?

i think so. but i don’t think it’s gonna happen until it becomes logistically, financially and legally painful for some HCPBBP not to do it. and that’s where we come in. enter left.....a couple thousand autism parents that carve out 15 minutes a day reading time to focus on their legal rights related to health care and what to do about them when they are violated.

let’s just go there together. ready? close your eyes and take a deep breath.

we are in the emergency room together. your kid has a high fever and he is posturing like no tomorrow, covered in a rash, he just puked all over the car on the way...ya know...a typical saturday. what, you say?!? you don’t have an ipad with an app for my child to use to communicate with you? you don’t have any pecs? you can’t provide him a means to communicate in the way he is accustomed to?  ya know...like the federal mandate of the americans with disabilities act says you should? ya know...like the joint commission says he has a right to?! like.......o m geeee , well how are you gonna assess his pain? what standardized pain assessment tool are you gonna use? you’re not following the aap guidelines which are considered standard of practice? you’re gonna deviate from standard of practice and open yourself up to that whole legal liability...hell...what if my kid has a small bowel obstruction that perforates? what if he’s having an appendicitis? can you tell he’s not just by looking at him? wow...do you have x-ray vision?

tell you what, lemme give you the name of my attorney and we’ll just wait here while you find someone who knows what the fuck they’re doing

ahhhhhhhh.....come on back, now

doesn’t that feel better?

(long sip of wine)

here’s a few phrases i want to leave you with as you ponder the possibilities. just think about it. all of us. together.

1.5 million kids with autism

patient rights

civil rights

health care discrimination

class action

insurance companies

malpractice claims

insurance premiums

failure to diagnose

failure to treat

exacerbation of underlying condition


peace out

rubolino