"Suffering the Slings and Arrows of Outrageous Fortune"

Although most people, when they familiarize themselves with the facts of the Justina Pelletier case, quickly grasp the wrong being done to an innocent family by the State, there are still a few people who insist there must be a good reason DCF took Justina away from her parents. There are people who believe the doctor is always right, the government couldn’t possibly be wrong and that anyone who supports the Pelletiers is facilitating child abuse. There is a new article from Slate that is, while admittedly an attempt to be fair, pretty offensive and short sighted in addressing the real issues. This post is a rebuttal of sorts of that article.

For the doubters, the curious or anyone else who may be genuinely seeking information about this case or trying to find the illusive ‘catch’ that makes the Pelletier’s guilty and Massachusetts right – here are my reasons for believing Justina has Mito, rejecting the diagnosis of Somatoform Disorder and  supporting the Pelletiers 100%:

The Basic Facts of the Case

A quick look at this case reveals that there is someone crazy involved and that the crazy one is not Justina! Unfortunately, a quick look also raises many questions that need to be answered and you will learn things about the system that will shock you:

  • She went to BCH specifically to see her GI doctor – never saw him, the neurologist she saw in the ER admitted her to the neurology floor instead of the GI floor. Does that make any sense?
  • Her Mito diagnosis which had stood for a year and a half, was overturned in hours and replaced with Somatoform. Somatoform takes weeks, months, if not, LITERALLY, years to diagnose. Not 12 hours. That is crazy. Why would this happen?
  • A simple disagreement between physicians can easily be worked out, so there has to be something else. Why was Justina’s mito doc not brought into discussions of her diagnosis and treatment? (Go read the Boston Globe articles part 1 and part 2 to see Dr. Korson’s view point.)
  • Parents have the right (and I would argue the DUTY) to choose the doctors who treat their child. A hospital should not be able to take a child simply because parents disagree with the proposed treatment plan in favor of following one from another, reputable doctor. Disagreeing isn’t abuse, is it? Would you sign away your parent right to get a second opinion?
  • Justina is one of many who have experienced this BCH specialty called a parent-ectomy (this is a term coined at BCH, by the child abuse team, not me). At the same time Justina was there, a 5 year old girl, with Mito was taken from her mother after being diagnosed with, you guessed it, Somatoform and placed on Bader 5. She was 5 years old. Not long before Justina was admitted, Elizabeth Wray had finally been returned to her family after 7 months because the hospital refused to treat her for PANDAS and, instead, locked her in Bader 5. There are too many others for me to go into detail on in this post. There is a clear pattern here, Justina is just the latest. To me, this is the most damning fact of all…
  • Even if we assume for the purposes of argument that Justina has Somatoform, the treatment for it is NOT separating the patient from the people and things she holds dear. Locking her in a Psych ward, meant as a temporary stop for children who are a danger to themselves or others, is not proper treatment for Somatoform. People with Somatoform have real pain and their treatment it complicated but it does not involve a year long incarceration. Read Part 1 to learn about the utter corruption in the field of psychiatry.

Personal Experience

No, I have never had my child taken away but I do have a child with a rare genetic condition – actually, she has several rare conditions that are all related – some of which Justina experiences. Frankly, she is a walking conundrum and I think even her geneticist gets overwhelmed by her issues at times. Now, someone looking from the outside might think  it statistically  impossible to have so many rare conditions in one child. But, as Hickam’s Dictum, the anti- Occam perspective, states so eloquently ‘patients can have as many diseases as they damn well please.’

Just because a condition is rare, does not mean it doesn’t exist. Too many actually ill people are told ‘I don’t think you have that, it’s too rare.’ Too often doctors look for a horse and ignore the zebra in front of them, to the detriment of the patient. Did you know that it takes something like 10 years and more than 10 specialists for most chronically ill patients to get their diagnosis? Doesn’t that seem nuts to you? This is what the chronically ill are up against. If you do not live this life, you cannot fathom what it is like.

We personally have had mostly good (but certainly not all good) experiences with our doctors, but that is mainly because we have the luxury of seeing doctors who actually know EDS backwards and forwards. The horror stories of those who have seen non-EDS experts are common and scary – these experiences often include references to some form of It’s All in Your Head.  We personally have been shunted from doctor to doctor, looking for answers – and I know that, even though we were sent by a doctor, it could look like doctor shopping.  We have fired doctors who were beyond horrible and who whose treatment plans were actually dangerous and replaced them with decent doctors who listen. We have been put through the ringer, having blood work and diagnostic procedures that uncovered nothing. We still have to spell E-h-l-e-r-s D-a-n-l-o-s for new doctors – have you ever been treated by a doctor who didn’t know even how to spell or pronounce your condition?

So, yes, we know what it is like to live with a rare disease – much of what the Pelletier’s describe is every day reality for millions of people. Long before I had ever heard of Justina, years before in fact, I was warned to be careful about disagreeing with doctors at any Children’s hospital. Parents of chronically ill children whisper out of ear shot of their children about horror stories from DCF. This is our reality and one reason I believe the Pelletiers completely.

The Spector of Somatoform/Somatic Symptom Disorder

I remember the release of the DSM V being a Very Big Deal last year. If you do not live with a chronic illness, that event probably didn’t cross your radar. But, among support groups and patient advocacy groups, it was a very big deal. Why? Because of the shiney new, horrifying definition of  It’s All in Your Head. The newest definition was going to be a net cast very wide and would undoubtedly catch up innocent people who were actually ill. The prediction that the chronically ill would be labeled ‘crazy’ and their illness ignored, has come true, sadly – Justina is now the poster child for this dangerous practice.

People who are ill deserve to have their medical conditions treated. They should not be treated as if they are crazy because a doctor is too ignorant or uneducated to understand their symptoms. Believe me, this happens. ALL THE TIME. Ask any person with a chronic illness if they have been belittled by a doctor, who either implies they are crazy or flat out says so – be prepared for an education if you ask.

There actually is an epidemics of sort of rare, chronic, invisible illnesses. The estimate is 50% of the population will have some type of chronic illness and, if you are one of the afflicted, it will most likely be an invisible condition you get hit with – in other words, nobody will be able to tell you are sick just by looking at you, including your doctor. Children are not immune to chronic illness – up to 50% of children will experience a chronic condition before they are 18, depending on what is included in the list. We could speculate why that is; there are many culprits most likely – we could argue diet or vaccinations or gluten or pesticides or other environmental factors. But, certainly, medicine is understanding and identifying rare conditions more and more because of the advancements of science .

It is rather unbelievable that there is a sudden upsurge in the frequency of psychosomatic symptoms that just happen to coincide with the broadening of the DSM definition – It’s All in Your Head is not an epidemic. Remember that typical 10 year wait before a rare disease gets diagnosed? Wouldn’t you feel pretty stupid if you were the doctor who declared a patient to have It’s All in Your Head, only to eventually find out that it was Cancer, MS, Mito, EDS, Lyme Disease, Lupus, POTS… The list is nearly endless and patients can and do  DIE when misdiagnosed. The likelihood of an patient claiming unexplainable symptoms having It’s All in Your Head is much less than them having a real, explainable disease that simply takes time and expertise to diagnose.

Mito is Real

While we are on the subject of real, explainable diseases, Mitochondrial Disease is real, folks. It is verifiable by science, although the tests are not 100% accurate yet. People die from it every day. Children, lives unceremoniously snuffed out. Teenagers, fading away before they have a chance to live. Adults, ripped away from their families. These are real people who are taken from their loved ones by an insidious disease. It is a tragedy – not only that the disease kills, but that ignorant doctors claim it isn’t real.

If, as Jurriaan Peters, the neurologist who set in motion Justina’s Somatoform diagnosis, believes,  Mito isn’t real, why then do prestigious institutions like Tufts, the Mayo Clinic and the Cleveland Clinc have doctors devoting their lives to the treatment of it and research to understand it? Why then does Boston Children’s Hospital have a Mito department? If Dr. Peters wants to claim Mito isn’t real, that is his prerogative, but he shouldn’t be able to punish an innocent child for his own ignorance.

In the big scheme of things, it wasn’t that long ago that doctors would have laughed if you told them that microscopic things make people sick instead of ‘miasma’ or bad air. Not that long ago, doctors thought bleeding patients with leeches would cure about anything. Medicine moves on and doctors must move on with it. We know how important mitochondria are, we know what happens when they don’t work. We just don’t know how to fix them. Thank God some doctors care enough to try to figure it out.

Follow the Money

This is one of the biggest reasons I believe the claim the Pelletiers make: The money trail. When you follow the money, you find some very disturbing facts.

Per Federal law, DCF gets financial incentives (bonuses) for every child they place in foster care, adopt out of foster care or place in institutional care. Where has Justina spent the last year? In institutional care and they have tried to place her in foster care. There are big incentives to take children and place them into the system. Once there, it is nearly impossible to escape the system. Again, Justina is not the first child this has been done to. DCF is not an impartial entity who finds itself caught up in a conundrum – they are a player in the parent-ectomy procedure. Read my post about DCF to educate yourself on why and how we have come to a place where DCF views children as commodities.

Boston Children’s Hospital is a research hospital. Their own documents state that wards of the state can be used as research subjects. They get grants (read: MONEY) for research. People are profiting from taking these children from their parents and it is sick. The doctors involved in separating Justina from her family in such a rapid manner have a vested interest in the diagnosis they slapped on her. There is gain – personal, professional and institutional – to be had for these doctors, at the expense of the child and family. Again, read my post about the role of BCH in this case to understand how and why this can happen.

Furthermore, Massachusetts DCF has no ability to do an independent medical evaluation. They depend on the doctors at BCH to help them with the determination of child abuse – the same doctors who accused the parents in the first place. That is a huge conflict of interest. When you consider everyone involved is profiting big-time, the picture suddenly comes in focus.

 

I stand by the Pelletiers 100% and will stand with them until Justina is safely home and there is a law preventing this from ever happening again. If you are on the fence, please, look into the facts and make an informed decision. There is nothing wrong with doubting or searching for answers but, remember, it could be your child next…

 

 

 

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Comments on: "Why I Believe the Pelletiers #FreeJustina" (2)

  1. Matthew said:

    My wife has a rare chronic autoimmune disease. Like mito, her condition is diagnosed by process of elimination. Back in the 90s she had a case of Lyme disease that she now thinks either triggered the autoimmune or was the autoimmune’s first occurrence.

    Back then her GP dismissed Lyme, despite the rash, and said it was the flu before finally saying it was all in her head. The psychiatrist he referred her said “you’re sick” and referred her to a different GP.

    Yes, i believe the Pelletiers as well. Whether it’s money or hubris that’s motivating BCH and DCF, they need to give up and let Justina get the medical help she needs.

    • So many people in the Ehlers Danlos (the condition my daughter has) community have been told they are crazy and sent to a psychiatrist – it unfortunately is almost the norm. The good ones say, you aren’t crazy, you’re sick and need medical treatment. The bad ones… well, they are parasites.

      I hope your wife is getting treated properly by her doctors! Thank God the psychiatrist she saw was a good one!

      Thank you for caring about Justina and thank you for reading and commenting!

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