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 ate some swallowed some razor crushing chest pain after snorting that last 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… 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.


i pray that justice will be served.


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.


mrs. r

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