Showing posts with label autism. Show all posts
Showing posts with label autism. 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, August 7, 2013

iacc and medical discrimination


 

our kids’ count.i know i lack basic writing skills so you probably overlooked that meaning. i really wanted our kids’ count. how many are we? well, let me look, 1 in 50. so how many is that? it says 1 in 50 “school kids” so i’m assuming that means school age children between the ages of 5 and 18? whatev, that’s a lot of kiddos. it’s two percent.  i looked up the latest population stats and two percent is really about 1.3 million kids. okay. hang tight. then i saw these reports…

“one in fifty kids is diagnosed with cancer”

“one in fifty kids has diabetes”

“one in fifty kids is diagnosed with hiv.”

oh wait, no i didn’t. because it’s not happening. it’s just our kids with autism. omg!!! did she just compare autism to hiv?!?! damn straight i did. if your kid has hiv, they actually know what’s going on. if your kid has autism, ninety-nine percent of mainstream medicine has no idea what’s going on with your kid.  but that’s not why i bring it up….totally. what if your kid has autism and hiv? you’d never know it because your kid, by design, does not get any medical diagnostic testing, how about autism and a brain tumor? nope. i mean they both have a neurologic symptom but autism doesn’t get checked out so if your kid has the world’s worst evil luck and they have both, that brain tumor is gonna go undetected. (actually happened, true story)   why do they do that, you say? because they can. who’s stopping them?

is it negligence that over one million children have autism and somehow nobody knows what causes it? really? how much common sense does that make? if you work in medicine, you know what i’m talking about. if you can breathe, you know what i’m talking about. let’s think of all the medical advances we have. nanotechnology, minimally invasive surgery, robotics, vaccines in a chip, but autism, frickin mystery. can you name one other disease, syndrome, whatever you like to call it, lump them all together, can you name one other “thing” that has a ratio of 5:1 gender bias that scientists cannot figure out? not me. okay, let’s go here…..there’s no biomarker. right. well let’s just close down the factory because lord knows there’s not a whole bunch of other shit that is diagnosed by exclusionary criteria. and truth be told, most of us didn’t even get a simple frickin blood test. wtf?  ok, enough about that. get to the point.

dear medical complex

it’s over

your long run of “we will ignore the medical side so that we won’t do any simple basic medical testing so that we won’t find the basic answer which we already know has to do with vaccines and immunological dysfunction and toxic load and all that other shit and we’ll lock them out of the system altogether”…..days are over. over!!!!!!!!!!!!!!

here’s why. you are so stupid that you let our numbers get so big that now we are actually a large separate population. and one that has a child with a disability…..and rights, disability rights….and votes…..and lawyers. you’ve made it so difficult for us to access healthcare for our kids that we have gone to great lengths outside of your system, to try to get them well. and that has cost us money, jobs, homes, marriages, family, friends, our own health. it has devastated us as a community. what happened, simple sociology here, simple math. we hooked up. yep. somehow in this fucked up mess baby jesus put people together like me and kelly peters…..can you say swear off? how about jeanna reed and amanda lochbaum? better get your game face on that mandee looks all sweet but she will cut you and jeanna will record that shit for later. lj goes and dawn loughborough…….umm…..they come with a complimentary small pack of tissue so you can clean yourself up off the floor. and thousands of other “autism hook ups” that really make us all just one big population of fearless people who would die for their kid, have nothing to lose, and are as angry as hell. good job einsteins.

so why do other parents with sick kids get to take their kids to a doctor that’s covered by insurance? when they go to the hospital, they get tests. and if their child is chronically ill, they get a social worker, and a case manager, and a child life specialist, countless specialty physicians, all the nurses are thoughtful and caring and supportive. why not us?

because we have not yet flexed our ‘patient rights’ muscle. if you’re not sure if you have one, scrape the crusted almond flour off your sleeve, we know you haven’t showered today, and check it………it’s there. probably extremely underdeveloped, it may be covered by your large poopisode muscle. well, i am here today to tell you, we are one. one big patient rights organization. we are patients…….we have rights…….and we are fairly organized. we are already there people.

let’s get down to business. do you know your patient rights? if not….check them out here


do you know your disability rights related to health care? if not check them out here




and when was the last time you took your disabled child to a health care provider who attempted to communicate with him/her in the manner they are accustomed to? no?! did you know that was a violation of their civil rights? well it is. this is from the national association of the deaf. but our kids aren’t deaf!!  i know, i know. check out title ii and iii below it.

 


 

doctors, nurses, dentists, specialists, therapists, and other health care providers must communicate effectively to provide appropriate, effective, quality health care services.

federal disability discrimination laws mandate equal access to and an equal opportunity to participate in and benefit from health care services, and effective communication with individuals who are deaf or hard of hearing. these laws include:

o    section 504 of the rehabilitation act of 1973 – applies to federal health care services and facilities; and health care providers who are also recipients of federal financial assistance, usually provided by direct funding (such as federal medicaid funds) or by grants (such as a federal research grant).

o    title ii of the americans with disabilities act – applies to all public (state and local) health care providers.

o    title iii of the americans with disabilities act – applies to all private health care providers.

title iii of the americans with disabilities act (ada) prohibits discrimination against individuals with disabilities by places of public accommodation. 42 u.s.c. §§ 12181 - 12189. private health care providers are considered places of public accommodation. the u.s. department of justice issued regulations under title iii of the ada at 28 c.f.r. part 36. the department’s analysis to this regulation is at 56 fed. reg. 35544 (july 26, 1991).

 

title ii highlights


 

vi. communications

state and local governments must ensure effective communication with individuals with disabilities.

where necessary to ensure that communications with individuals with hearing, vision, or speech impairments are as effective as communications with others, the public entity must provide appropriate auxiliary aids.

"auxiliary aids" include such services or devices as qualified interpreters, assistive listening headsets, television captioning and decoders, telecommunications devices for deaf persons (tdd's), videotext displays, readers, taped texts, brailled materials, and large print materials.

a public entity may not charge an individual with a disability for the use of an auxiliary aid.

telephone emergency services, including 911 services, must provide direct access to individuals with speech or hearing impairments.

public entities are not required to provide auxiliary aids that would result in a fundamental alteration in the nature of a service, program, or activity or in undue financial and administrative burdens. however, public entities must still furnish another auxiliary aid, if available, that does not result in a fundamental alteration or undue burdens.

 

title iii highlights

vi. auxiliary aids

a public accommodation must provide auxiliary aids and services when they are necessary to ensure effective communication with individuals with hearing, vision, or speech impairments.

"auxiliary aids" include such services or devices as qualified interpreters, assistive listening headsets, television captioning and decoders, telecommunications devices for deaf persons (tdd's), videotext displays, readers, taped texts, brailled materials, and large print materials.

the auxiliary aid requirement is flexible. for example, a brailled menu is not required, if waiters are instructed to read the menu to blind customers.

auxiliary aids that would result in an undue burden, (i.e., "significant difficulty or expense") or in a fundamental alteration in the nature of the goods or services are not required by the regulation. however, a public accommodation must still furnish another auxiliary aid, if available, that does not result in a fundamental alteration or an undue burden.

 

how many places have you taken your child where you arrived and they had a whole policy in place, or protocol to follow so your child’s disability is accommodated? none? remember alex spourdalakis. i asked loyola several times what their policies and protocols were regarding caring for autistic patients. so did fox news chicago. here’s what i got. love the “re: your other question”. after speaking with me on the phone i think she felt that when dealing with me, the less words, the better. i’m not sure though. you could always call and ask her.

jill,

here (attached below) is the statement we provided to the media.

re: your other question:

our approach to patient care is based on the needs of the patient.


anne

anne dillon
director of pr/media relations loyola university health system
708-216-8232 desk

708-441-7651 mobile
708-216-7981 fax
adillon@lumc.edu

 

and in regards to his treatment at their facility ……..according to them, this explains everything:

 

loyola university health system statement

june 10, 2013

patient safety and privacy in police investigations

 

one of our highest priorities as a health system is to ensure that our patients are safe and that their privacy is protected in accordance with federal hipaa laws and the wishes of the patient.  we cannot speak to a specific patient situation without the patient’s permission. in circumstances that involve police investigations, we work collaboratively with law enforcement and other state and federal agencies to help support these inquiries.

 

really? because i was doing some reading and i found this under title iii

ii. overview of requirements

public accommodations must --

provide goods and services in an integrated setting, unless separate or different measures are necessary to ensure equal opportunity.

eliminate unnecessary eligibility standards or rules that deny individuals with disabilities an equal opportunity to enjoy the goods and services of a place of public accommodation.

make reasonable modifications in policies, practices, and procedures that deny equal access to individuals with disabilities, unless a fundamental alteration would result in the nature of the goods and services provided.


furnish auxiliary aids when necessary to ensure effective communication, unless an undue burden or fundamental alteration would result.

remove architectural and structural communication barriers in existing facilities where readily achievable.

provide readily achievable alternative measures when removal of barriers is not readily achievable.

provide equivalent transportation services and purchase accessible vehicles in certain circumstances.

maintain accessible features of facilities and equipment.

 

so. what does all this mean for us? well, it means that everything to provide our children with comprehensive medical care covered by insurance is already in place. it means that our kids deserve the same treatment as all other patient populations. we deserve the same accommodations, multidisciplinary teams, support services, and treatment with respect. it means that a committee like the iacc, who uses funding to meet for one day four times a year cannot do anything productive for a patient population of 1.3 million children. especially since they only decided just this year to ask a few doctors to attend. their responsibility is to make recommendations. why don’t they recommend we stop being discriminated against? why don’t they recommend that a medical standard of care be developed?  it really means it’s up to us. yes. yet another frickin thing on our long list of shit we have to take care of. but the great thing is now we have our “hook up”. and here’s how we are gonna roll.

step one

realize we are not gonna change the painfully obvious avoidance of the real issues our kids face without making our presence known. every fucking time. i’ll use the same theory i use with my husband. i’m in it for distance and irritation. go to the iacc meeting if you can. once you’re there, you realize you really need to be there. these are our kids they’re talking about. if not…..send your child. that’s right. send your kid to iacc. to see how….go to step two.

step two

send me a two page letter explaining how your child is sick, and they didn’t get the medical care that they needed. please don’t send more than two pages or i won’t be able to include it. realize, i will be using this information for more than just the iacc meeting so do not include any personal information that you are not comfortable with sharing. that doesn’t mean i’ll post it on facebook, it just means if i get an elevator ride with an attorney, you better damn bet i’m pressing that emergency stop button and whipping those bad boys out to show him. and if i should happen to be speaking with one of the student organizations at south texas law school, i will want to use your stories to make my point. and if i just happen to be in dc for a congressional hearing and someone in congress is within my perimeter……you guessed it….distance and irritation. so if you’re reading this blog, this will serve as my disclaimer. on the flipside, your kid’s story will go to iacc. because all of our kids count. every last one.

please send your two page story with picture, if you like, to bringourkidstoiacc@gmail.com

i will not be able to return them. but i promise i will make them count. promise.

now……you should also submit them to written public comment to get them into the public record. it’s very very very very very easy. all you need to do is send it in an email to iaccpublicinquiries@mail.nih.gov.


 

step three

take my survey. please. do it. the results will accompany our information and help demonstrate our need for appropriate access to healthcare. it's 23 yes or no questions.


that’s it. now……bitches

let’s ride

peace out

jill

Sunday, July 14, 2013

iacc......ick


maiden voyage....our trip to give a whopping three minutes of public comment at this past iacc meeting. as usual, we mistakenly thought we should be nervous, until we got there. then we quickly realized, pretty much nothing to be nervous about except maybe the possibility of jumping across the table and throat punching someone until her airway collapsed. alas, we are not murderers like some people in the room. pathetic was the response to the public comments, some of them pleading for help. I think the fabulous Kelly Peters sums it up with this fb post:

Let's objectively look at objectives. Let's plan a meeting to plan the plan about the plans. Let's regroup and recap and examine the reviewed data in four months. Let's schedule a committee review about the separate meeting of the committee subgroups. Let's re-evaluate the same shit we have blathered about for the past few years and did nothing about.....

Let's gather again and blow some more smoke up America’s ass....

two rays of light...Wendy Fournier and Lyn Redwood...thank you for making us feel like, for a second, we weren’t sitting in the third ring of hell by injecting some much needed reality into the day...and for your tireless work. i couldn’t move forward without recognizing the unbelievable display of restraint you both demonstrate and, in retrospect, the realization that all along you have endured this gross display negligence while keeping your commitment to the truth....and to our children....who are suffering. all i can offer is my deepest thanks. and i’m sure there are some warriors out there that are rolling their eyes right now mumbling the proverbial ‘this is just a normal tuesday for us’ and looking down at our disgust for the status quo with a judging ‘don’t you think we would have fixed this by now!?’ attitude. oh well. if you wanna be a hater, stand in line bitches. if I lose any sleep over your opinion of me, i’ll be sure to send you a frickin memo. until then, realize that the travesty of justice is big enough for all of us. that whole posturing within our community bullshit is just that, bullshit. spending my life working with physicians whose egos were bigger than their frontal lobes enables me to see past those who talk the talk but can’t walk the walk. look around...at 1.5 million kids with autism, there’s enough more important shit to talk about. hence, i digress.

what can i say about Dr. Buie or Dr. Frye. please, for the love of God, watch their presentations. for your own sake and the sake of your children. they pretty much laid it out for everyone. our kids are sick and they require medical treatment.if they get treated, they can and do get better. not sure anyone was listening as they kept leaning over whispering to each other about time, and how far behind the schedule was. we sat right behind insel not on purpose but it turned out to be enlightening. especially when he would lean over and make little comments like “she’s smart” or “makes sense” like he was an actor in a pr campaign and it was the first time he’s ever heard of this shit.  i thought Jeanna was gonna unleash her rugby playing self on his ass at any moment but thankfully she kept it to a minimum and we spent the time texting each other how much we hated them and writing notes on each other’s notepads.

“which one is she?”

“next to devil?”

“she’s a crack smoker”

my favorite…

“eat shit..AS..B..were just smirking”

the chic that talked about ect and catatonia....please return to your hole in the universe. while i was forced to listen to your disgusting presentation that took up way too much valuable time, we could have been talking about children who suffer every minute of their lives in pain and what to do about it. when you were asked a question and you went way over  your time limit with your answer insisting on explaining in even greater detail how important and pertinent your information was and why you used pictures of children from a hundred years ago in your power point, i wanted to stab myself in the iris to relieve the pain of listening to someone as removed from reality as yourself. some kids just don’t want to eat because they don’t want to and there’s nothing wrong with their gastrointestinal systems? electroconvulsive therapy is not as barbaric as it used to be? are you aware you are sitting next to Dr. Frye? the world’s leading neurologist in treating autism? and across from Dr. Buie? who just gave an extraordinary presentation on severe gastrointestinal  disease in autism? just how stupid does a person need to be to get money for research? please baby Jesus do not allow this vermin to procreate. ect?……ECT!?!?!?!  don’t even look at me, bitch, or i will fly across this table and rip your scalp off.

at one point, after arriving late, insel left early because his daughter just had her third baby. last i checked, grandpa doesn’t lactate so immediate duties would probably just include indoctrination into the inner circle of evil. that poor kid, just can’t choose what family you get stuck being born into. bottom line, the whole thing was surreal. three minutes? wtf? but then again, that’s plenty of time to say these words...”we’ve filed a petition in federal court”...or something similar. i’m sure that’s not legally correct for those haters previously referred to...aaaaaaand that’s because i’m not an attorney. aaaaand my education wasn’t well rounded ivy league it was degenerate community college. what i said in my three minutes i really meant. but you know how after an argument with someone is over you think of really cool shit to say but you can’t go back? here are mine...

everyone on this bullshit committee knows vaccines cause autism and that these kids are sick and you are all going to burn in hell for all of eternity because you’re not doing a fucking thing about it

if you are small enough to fit in my bag and have a history of corruption and genocide against the children of this nation, probably not a good idea to ride the elevator with me during lunch break

yes we just found out we could give public comment and you better believe we will be back every time from now on to make your disgusting existence as painful as possible for those 3 measly minutes

we can read so we will eventually figure out how to sue you or put you in jail or make your life miserable trying to do both

our recovered, very capable kids will get older and be extremely pissed off at you. they also have siblings that were neglected so good luck with that

nothing you do, say, don’t do, don’t say, changes the fact that our kids are being denied access to the same health care as everyone else. that’s called discrimination. and it’s discrimination against disabled individuals. and that, my friends, is illegal.

next stop, congressional hearing

i’m out

rubolino

Thursday, July 11, 2013



brand new....right out the box

you better hope you’re on the right side of truth if you see your name in here

peace out

rubolino