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...

http://www.kennedykrieger.org/patient-care/faculty-staff/lee-wachtel

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

Public Comments for IACC

october 8^th 2013

good afternoon

my name is jill rubolino and i am the mother of a ten year old son who is recovered from autism. i am here today to speak to you as a parent, a health care professional, and a patient advocate.

while i am fully aware of the time constraints regarding public comments, i ask you for some leeway. last meeting we tolerated upwards of 45 minutes listening to the most painfully inappropriate and inaccurate description of “catatonia” i care to ever witness. i had to endure a description of children who clearly suffered in some way and who were obviously demonstrating the need for medical intervention, but would receive none. instead, they would receive a label of “catatonia”.  the fact that committee members thought that presentation was a valuable addition and appropriate use of time and resource is overshadowed only by the painful realization that autistic children were being medically neglected under the guise of research. i could have thought of a hundred better uses of that time, and this audience. in addition, i cannot go forward without mentioning the outrageous suggestion that autistic children wear a flotation device around their necks, and subsequently their airway, on a continual basis so their lives would be spared from the drowning that may occur if they should elope from their home and enter a body of water. i don’t mean this comment to be facetious as drowning deaths are tragically the number one cause of death for autistic children that wander. i say this to demonstrate the absurdity that this committee, a federally funded committee, charged with making recommendations about important issues affecting the autism community, would not look at that suggestion and take pause.  thousands of parents are out there, struggling every single day to keep their children safe.  i’m sure they were all appalled, as was i, by the ridiculous and repeated suggestion of something so absurd. it begs to question the validity of the participant’s qualifications and undermines the entire format which should focus on real world, real time issues and needs with appropriate, well thought out, mature suggestions. i do not need an interagency committee for a suggestion of this caliber. that comment was an insult, and a mockery of the seriousness with which the death of an autistic child should be discussed.

autism statistically outnumbers all other pediatric illnesses and continues to do so. this problem is of a magnitude that is almost unbelievable. where do we go for help? this committee makes recommendations and determines what issues get attention and funding in the coming years. while there are huge medical associations, organizations and entire hospitals devoted to other pediatric populations,  autism has a committee with no oversight and no accountability, that meets four times a year to address the needs of over  1.5 million children and adults. the response certainly doesn’t match the need. there should be and entire staff devoted solely to autism and huge medical centers across this country with multispecialty clinics that are treating patients and doing constant research, but there isn’t.

certainly, we are not the first set of parents to endure this neglect. while you expect us to accept this as an appropriate response, these former parents, called “refrigerator mothers”, had to endure far worse. not only exclusion, and discrimination, but oppression by a medical community that’s very existence is meant to serve the patient and family. a disgraceful, epic failure of humanity and abuse of power, influence and discrimination by physicians.  in the extraordinary film “refrigerator mothers”, dorothy groomer, an african american mother of an adult son with severe autism talks about her experience with physicians diagnosing her son as “emotionally disturbed”.  he was excluded from the diagnosis of autism because, as she stated, “we did not fit the classic mold for autism”, which at the time, was children of white, upper middle class, educated parents. her doctors told her that her son, stephen, could not be autistic because he was not white, and they assumed she was not educated, and therefore he was diagnosed as “emotionally disturbed” instead. unfortunately, we haven’t come very far. while parents continue to ask their doctors to investigate their child’s physical symptoms, they are repeatedly told those can only be attributed to their child’s autism and medical diagnostic testing and treatment are withheld. just as we look back at that time and see the response as barbaric, we will look back on this time in the same light.

while other parents of chronically ill children are able to access health care, comprehensive teams and assistance, our parents have to go it alone. policies to discriminate against our children are in place. while many parents, like me, know that their children have adverse reactions to vaccinations, pediatrician practices across our nation have created policies to discriminate against parents who choose to not vaccinate or not vaccinate according the recommended schedule. texas children’s pediatrics association has 48 locations in the houston area and is one of the largest pediatric practices in the nation. several of their office locations have “office policies” that state they will not take any patients whose parents choose not to vaccinate or not to vaccinate according to the recommended schedule regardless of the reason including both religious exemption and medical contraindication. they refused to accept my child as a patient and in calling multiple locations as well as texas children’s hospital both patient relations and their legal department, i could not be provided with a written policy, an explanation, or any legal framework to support this discriminatory policy, and yet it continues. in almost twenty years of bedside nursing i have never witnessed another patient population being denied healthcare based on their vaccination status. in fact, a large majority of patients are noncompliant with their plan of care and yet still receive immediate, comprehensive care. denying children access to health care based on vaccination status is akin to not seeing a diabetic patient because they don’t follow their diet or a renal patient who misses dialysis. furthermore, denying any child access to a medical home pediatrician based on vaccination status related to religious exemption is, in fact, religious discrimination.

the discrimination against this patient population by pediatricians at the local level, physician organizations at the national level, and agencies responsible for determining the response at the federal level will have the same legal accountability as other health care discrimination. for these reasons, we request a recommendation for a fully funded legal assistance network to ensure these children receive appropriate care, recommendations for mandatory investigation of discriminatory practices of any health care organizations receiving federal funds through medicaid programs, and an immediate intervention by this committee to formulate a plan to evaluate your own lack of response to this very serious medical neglect of an entire pediatric patient population.

from a clinical perspective this leaves a large group of medically complex children without basic medical care, without referrals to specialists, and the task of coordination of care resting solely on the parents. in addition to lack of access, those children that do enter into the healthcare system, rarely get diagnostic testing and certainly are not offered the same services as other pediatric patients with chronic illness including but not limited to autism specialists, child life services, pediatric  subspecialties, therapy services, social work, case management, nutrition and parent support groups. here is a list of just a few of the things autism parents are faced with instead:

lack of informed consent

violation of patient rights

unlawful notification of child protective services

failure to treat

failure to diagnose

unlawful seclusion, restraint and sedation

failure to meet federal mandates in regards to disability and communication accommodation

discrimination against a disabled population

failure to keep the patient safe from harm

failure to assess and treat pain

not investigating physical symptoms that occur in any patient, regardless of their autism diagnosis, is always medical neglect. whether the practitioner regards autism as a psychiatric diagnosis, a medical diagnosis or holds the opinion that autism is psychological with medical comorbidities does nothing to change that. if a patient presents to the emergency room with abdominal pain, diarrhea and vomiting, the process of diagnostic investigation begins the same way whether that patient is neurotypical, autistic, schizophrenic, alcoholic, an iv drug user, morbidly obese, diabetic, hiv, renal failure, man, woman, child, even a federal agency employee…….it all begins with the first step….perform a physical assessment and diagnostic work up. when a practitioner fails to address the patient’s symptoms based on their disability, it’s called discrimination.

 no other case of medical neglect, malpractice and discrimination illuminates my point better than the case of alex spourdalakis. alex was a 14 year old boy who suffered from severe autism and was hospitalized several times for an acute change in status related to aggression and gastrointestinal symptoms. he was kept in four point restraints for 22 consecutive days without an appropriate doctor’s order. he was given a cocktail of psychotropic drugs that was ever changing and ineffective. he had gastrointestinal disease that was never investigated. he was discharged home from advocate lutheran general hospital, in park ridge, illinois and nine days later was found dead after an apparent murder-suicide attempt. his mother, dorothy, and godmother found unconscious at the scene are currently incarcerated in illinois. i caution you to make a rebuttal comment about the impression that anyone in our community perpetuates the idea that taking your child’s life is ever acceptable no matter how difficult your road. a pristine example of everlasting devotion, dedication and meticulous care given to her child is michelle guppy and her son brandon, now 19, who at age 18 months experienced a vaccine injury and now suffers from relentless seizures and severe autism.  although she and i live in houston, the location of the largest medical center in the world, she cannot get adequate health care for her child. it is only because of her devotion to him, her faith in God and his warrior spirit, that he is alive today. this is the path we endorse, as difficult as it is.  dorothy did not follow the same path.  and before you speak out about calling for a hate crime, i suggest you check your email inbox. were you contacted to help this child, and didn’t? you see, this child was not hidden away from everyone; he was right up in our faces. he had been in and out of the hospital for months with countless requests by his mother for investigation of his medical problems and repeated reference to his gastrointestinal symptoms in his medical record, all going un-investigated. his patient rights were violated, his civil rights were violated, his disability rights were violated and he was a victim of medical neglect and malpractice. every local, state and federal agency was notified. every resource was contacted. every single agency available knew about this child, and yet, he was sent out into the world with no support and discharged to home with his mother to care for him on her own. without ever receiving medical treatment. why aren’t any of the same organizations calling for a hate crime, asking the hospital how they could safely discharge that patient?  why isn’t the state agency that was supposed to be monitoring this child being investigated? because this mom is in jail for killing her child. that doesn’t change those facts. we know those facts, we have those facts, and i am here to tell you, we will never go away. you can’t change the truth, no matter how hard you try. alex suffered the same medical neglect that all of our kids do. his mother suffered the same fate, when trying to advocate for her child’s health, doctors called child protective services. and this is the fate of so many parents. no support, no real help, and everyone covering up their part in it; their part in contributing to thousands of children being sent out into the world with parents who cannot keep them safe, or healthy because there is absolutely no appropriate healthcare.  alex was hospitalized multiple times over a period of seven months and yet not once, did he receive a comprehensive diagnostic work up. he received copious amount of psychotropic drugs and unlawful restraint. and may i remind you that restraining a patient without a physician order, and continuing a restraint that is already in place without a doctors order is considered assault and battery, every instance,  every time. but those healthcare providers won’t be prosecuted, because alex’s mom is in jail. but we won’t forget. this was a polarizing event for our community. since alex’s death, there have been more children killed by their parents.  when will it be enough? when will it be enough devastation for this committee to stand up and make some real world recommendations that address our needs?

the last iacc meeting i attended was july 9^th.  dr. frye and dr. buie gave wonderful presentations covering the need for medical investigation and treatment for our children’s medical issues. both physicians stated in their presentations that some children show tremendous improvement and even completely recover with treatment. my child is one of those. what i can’t figure out is why wouldn’t you want that? why would you not want to institute a comprehensive plan to medically treat these children to improve their outcomes?  dr. perrin from the atn and president-elect of the american academy of pediatrics was also in attendance. he stated that within the aap there was a task force already in existence working on all things related to autism. he expressed interest in working with both doctors, yet still no work has been done. since that meeting, neither physician has been contacted by anyone from this committee, the aap or the task force.  lyn redwood stressed the importance of addressing our kids’ medical issues and suggested a working group; still no work has been done. parents have come here time and time again requesting the need for addressing medical issues; still no work has been done.

i bring to you today the stories of many children, who like thousands out there, have parents who brought them to the doctor and to the hospital looking for help, but received none.  you see their pictures up on the screen and their stories are in my comments.  i encourage you to read them. their children suffer from seizures, abdominal pain, diarrhea and constipation, self- injurious behavior, relentless fevers, metabolic and mitochondrial disorders, immunological disorders, ataxia, unidentified rashes and a whole host of other symptoms. they are suffering, and yet they receive no medical care. they are being discriminated against because of their disability. this will stop. we will make it stop.

i publicly request you make a recommendation to formulate a comprehensive plan, including a working group, to address the medical needs and medical neglect of all autistic patients, children and adults. i remind you that as members of this committee you have a moral, ethical, and legal obligation to utilize the resources available to you, including federal funding, to address this need on an emergent basis.  we will continue to advocate for this patient population and will seek assistance for funding and legal representation to ensure our children and adults with autism receive the same access to medical care as all other patient populations. failure to make this a priority for this committee is unacceptable.

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

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