Making Sense of #FreeJustina Part 1

Now that Justina is home, reunited with her family, friends and pets, I am looking back over the whole sad saga of her 16 month imprisonment.

 

 

 

I have already asked What was the Point? in a previous post and, while I don’t necessarily want to just rehash that sentiment, I am still incredibly frustrated that there is no good answer to that question. Furthermore, Justina’s situation today is essentially the same as it was when she was taken by ambulance to Boston Children’s Hospital on February 10, 2013:

She is ill. Dr. Korson, at Tufts, is her doctor. Her parents have custody of her.

What improved for Justina over the course of the past 16 months?

Nothing at all, as far as I can see. The somatoform diagnosis has apparently been tossed aside and everyone now agrees that her symptoms are from her mitochondrial disease. Her parents, although doing nothing really different today than they were 3 months ago when Judge Johnston wrote his scathing ruling accusing them of cursing, name calling, threatening, and generally being ‘difficult’ to get along with and therefore not qualified to have custody of their youngest daughter, now have been deemed qualified by the judge to have custody of Justina. I shouldn’t complain since she is home, but, I can’t help but think: What???

Let’s see: 16 months ago the Pelletiers said Justina had Mito. They wanted her own doctors – Flores and Korson – to provide her care. Flores happened to be at BCH but when the disagreement arose,  Tufts was where Lou and Linda wanted to take Justina. The Pelletiers said every medical intervention done to Justina was needed and that they were not abusing her in any way, so there was no reason for MA DCF to take custody. They said they would sue everybody who was involved in the medical kidnapping of their daughter.

Today, their position is precisely the same as it was when all his started. They broke the gag order and have never shut up; the media attention on Justina has only grown since November when Lou spoke to Glenn Beck.

So, what changed that made it possible for Justina to go home?

DCF, for starters. They were dragged into this mess by Boston Children’s Hospital – certainly not kicking and screaming, but willingly and because of their own negligence, so they do not get a pass on their own culpability, but they have at least had the sense to allow it to end.  Hopefully, they will think twice before ever doing this to another child – I hope and pray, that when faced with a similar situation in the future, the nasty burn they got from holding on to Justina is still very painful.

The controversy and media storm was never, ever going to go away; not until Justina went home and DCF was out of the lives of the Pelletier family. Somebody had to blink and, while conventional wisdom would say DCF was the party with the power, the Pelletiers were never, ever going to be the ones to blink. So, somebody had to resolve it. Secretary Polanowicz at HHS intervened in such a way to bring it to a close. I would say he had to set it up to look like the Pelletiers were giving in, when in reality it was DCF who was giving in. Bless him for doing so, but, it never, ever should have taken 16 months to resolve this. Period.

Today, the joy I feel as I watched Justina return home, to her loving family and adoring dogs, is tainted a bit by anger. I look back over the months that Justina was isolated and removed from life as she knew it…for no reason. Everything she knew and loved and held dear was taken from her…for no reason. Her voice was silenced, her wishes and independence and autonomy squashed;  her development and health imperiled… FOR NO REASON.

They said it was for her own good, but how can that be the case when nothing at all has changed from the time they took her? I look back and just see the seconds ticking into minutes, the minutes into days, the days into weeks, the weeks into months and the months into more than a year… as the tears and the longing and loneliness and fear and rage went on and on.

Why can’t I just be grateful that she is home?

For any human being, our greatest treasure on earth is time, for it is with the time we are given that we live. We manage our time, know that time is money and regret wasted time because we keenly understand that time lost cannot be found again. We bless others with our time – it is a manifestation of love and value and esteem. We cherish our time with loved ones who have their own finite resource of moments on this earth, because really, in the end, time is all we have. For people with chronic, rare, debilitating and progressive conditions, time is everything. At this time of celebration, I cannot help but grieve the unforgivable amount of time that was stolen from Justina. Her release is bittersweet to say the least…

So much has been taken, forcefully and wrongly, from this brave young lady but it is the time that was stolen, wasted, and callously tossed aside that is an irrevocable loss: the  16 months – 489 days – of her life that have been stolen by the powers-that-be are utterly irreplaceable. Nothing and no one can return her lost time with her elderly grandmother, with her sisters, with her parents, with her friends, with her pets.

Where do we go from here?

It is infuriating to think of this crime being swept away as if it were nothing because the DCF finally caved and because the Judge deigned to sign the order allowing her to go home: “Golly, Justina. Looks like we made a mistake. Ha Ha! Sorry about that! You weren’t crazy after all… well, have a good life!” Despicable doesn’t begin to describe this…

16 months ago, Lou and Linda weren’t allowed to get a second opinion from Tufts because Dr. Korson had ‘allowed’ himself to be hoodwinked by Linda into providing unnecessary medical treatment, but the court ordered Justina’s care be returned to Tufts and Korson, tacitly admitting BCH screwed up.

Lou and Linda were steadfast in saying they had done nothing wrong, that their daughter belonged with them and, after 16 months of disagreement,  the court agreed – at least that Justina belonged with them and the lack of criminal charges certainly lends credence to the idea that they are not just ‘not guilty’ but innocent.

They were devastated that their visitation was limited to one supervised hour per week. But, the court cited their visiting Justina everyday at the placement in CT as evidence of them cooperating…As if they wouldn’t have visited her every single day for the previous 15 months if they had been allowed? Who’s fault was it Justina didn’t see her parents everyday!

After 16 months, the case against the Pelletiers has been dropped and Justina was sent home with no strings attached.

I am overjoyed that Justina is home but the insanity and pointlessness of the past 16 months could just make my head explode….if wasn’t able to see the good that will come from this. Thank God, there is good coming from Justina’s suffering because I really need it to mean something...I will talk about that in Part 2.

Home #JustinaisFree

As they say, a picture is worth a thousand words…  On a day such as this, a million of my words could never do justice to the joy and relief felt by the Pelletier family. Perhaps tomorrow I will try to find the words to sum up this whole saga, but today I just don’t have the words. So, here are a few pictures worth many thousand words to describe a day we have all been waiting so anxiously for:

A ‘Welcome Home’ sign written in chalk on Justina’s street

 

 

Rev. Mahoney with a very happy Justina

Linda shortly after hearing that Justina was coming home the next day

Justina, packed and waiting to head home.

Linda and Jennifer at the press conference

The media covering Justina’s departure.

Justina, all smiles, driving out of the Susan Wayne Facility

Heading for home!

Smiling at the media on the way out.

Roxie, the faithful dog waiting patiently for Justina to come home.

Roxie loving on Justina

 

Lou carrying Justina into her house upon her release.

 

“It’s crazy to be home.” Justina Pelletier

 

 

*Pictures from Rev. Mahoney @Revmahoney and Beau Berman @BeauBermanFOXCT via Twitter

Finally #JustinaisFree

Justina is going home. The judge has finally released her and she is going home. After 16 long months in the custody of Massachusetts DCF, Justina will finally be sleeping in her own bed come Wednesday night.

 

I usually have words, words and more words… But, today, all I can think is ‘thank God she is finally going home!’

Rev. Patrick Mahoney ‏@revmahoney Why is Justina smiling so big! She just found out she’s going home tomorrow!!! Details to come! #justinaisfreed pic.twitter.com/ZbERlaQmfs

The Saving of Many Lives #FreeJustina

For anyone familiar with the Justina Pelletier case, things are happening – hopeful things.

I am a believer: I believe in the promise of Romans 8:28, that God works in all things to bring about good. And I stand confidently on the promise stated by Joseph in Genesis 50:20: “You  intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.” Justina’s experience, and that of the other children who lived the same nightmare on Boston Children’s Hospital’s Bader 5, will lead to the saving of many lives, mark my words.

Last week, a suit was filed on behalf of a girl who had her working diagnosis ignored in favor of a somatic disorder and was confined for more than a year on Bader 5 against her parents wishes. The parents were threatened with losing their daughter if they did not cooperate, so they cooperated (under severe threat, so absolutely no judgement here) while their daughter was subjected to isolation, restraints, and lack of proper medical care for her real medical condition as her health severely deteriorated.

No, that girl is not Justina, but the cases sound remarkably similar, don’t they? The major differences I can see are  that A) the young lady at the heart of this suit was eventually discharged (read: tossed aside) when her condition deteriorated so badly she was not making any progress, while Justina is still in custody of DCF and B) the parents of this girl cooperated as opposed to fighting DCF like the Pelletiers. The latter seems to explain why she was tossed aside when they were done with her and Justina remains in custody. For anyone who wants to criticize the Pelletiers, this case obviously shows that NOT fighting is not a great solution either.

This federal suit is accusing DCF of doing the bidding of doctors at BCH instead of properly investigating the medical child abuse allegations. The MA Attorney General, Martha Coakley is also named in the suit. With any luck, Bader 5 and the administration of BCH will have some questions to answer so they can change the policies that allowed this to happen in the first place.

“The basic request is for a federal court to apply the constitution to say parents have the right to take care of their children without 
undue interference from a state agency,” said Barry Pollack, the lawyer who is representing the family. The suit states: “DCF has not established any rules or regulations concerning ‘medical child abuse’ or ‘doctor shopping’ but has taken action against parents, such as the mother and father, for consulting with and seeking care for their children from multiple doctors or specialists at different facilities” and goes on to name names of the infamous Bader 5’s staff.

This is very, very good news for all children who may need the services of Boston Children’s Hospital and for the parents who walk through the doors with the knowledge that they are one doctor away from losing their child. This suit shines a light directly on the scary and subjective category of medical child abuse. DCF, in Massachusetts and elsewhere, must define the term clearly and balance the rare cases of such behavior that might put children in jeopardy with the many, many cases of kids who have rare diseases and whose parents are just trying to provide the best care possible. They need to come up with clear rules to deal with the subjective labels of ‘doctor shopping’ and all of the other red flags that get parents into a mess at BCH: this suit is forcing their hand.

While they are at it, they could come up with some ideas for parents who fall into some gray area of obviously not abusing their child but who could benefit from genuine support in the face of the extraordinary challenges families living with rare diseases face. And, since we are making changes, let’s just rework the whole definition of psychosomatic illness in the DSM V. (I know, that one is a pipe dream but a gal can dream, can’t she?)

It all boils down to this: DCF needs rebuilt from the ground up and this suit will help ensure protections for kids with rare diseases are part of the new framework.

Back to Bader 5 for a minute, here is a pretty damning letter from Barry Pollack regarding Bader 5 – he unequivocally says it needs to be shut down, referring to the fact that the ‘anti-parent approach at Bader 5 fails to respect the time-honored importance of the parental relationship, at the expense of children and families’ and stating that ‘Children in Bader 5 can be blocked from the outside world and even at times daylight. For those children, like all victimized children, an important step in recovery can be an acknowledgement of wrongdoing by an institution that has failed them. Bader 5 has clearly failed and hurt many of its patients and their families.’

As for Justina, thankfully she is no longer incarcerated on Bader 5. We are very hopeful she is going home soon. This past Friday, lawyers for the family filed a motion for Justina to be released since the requirements of the reunification plan have all been met and on Monday the family spokesman met with Health and Human Services Secretary Polanowicz, who stated his people were looking into their own motion to release Justina asap. Furthermore, DCF has now stated publicly that they will not object to the motion filed by the family and ‘shortly’ will  file asking the judge to dismiss the case. We will just assume when they say ‘shortly’ that it means what we take it to mean and that Justina will be sleeping in her own bed before the scheduled June 20th court date.

I previously asked “What was the Point?” and I stand by my firm belief that Justina and her family were wronged. Heinously wronged. This whole situation is wrong in every possible way.

However, the flip side of that is that there will be good brought of the wrong that has been done. Changes are coming, probably in different venues, in different ways – this law suit will force needed change upon DCF,  there will be some version of Justina’s Law down the road and there will undoubtedly be other changes in various places. But the bottom line is that Justina (and Elizabeth Wray and this nameless child who Barry Pollack is seeking justice for and all of the other unnamed children who have suffered on Bader 5) will have not suffered for no reason: reform will come and it will change business as usual at DCF and BCH. What was meant for evil is being taken and used for good. God bless each of the children who have suffered at the hands of the arrogant doctors at BCH and from the appalling misbehavior of DCF.

 

Here is a Boston Herald article about the suit

Here is a blog post about the suit and Bader 5

 

What was the point? #FreeJustina

Saturday, May 24th, Justina Pelletier turned 16:

She is still in Massachusetts DCF custody, although the Connecticut facility she was moved to is working on reuniting her with her family. On the 24th, there was a birthday party for Justina which her family attended. Also on the 24th, in Boston, was a huge rally in her honor. The media is estimating thousands were in attendance – initial reports said 2,000, later reports estimated 4,000.

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As I look at the pictures and videos from Justina’s birthday party and the rally, serious questions overshadow the joy I feel – joy that Justina is in a better situation, that she had a lovely party with her family and friends, that thousands of people across the country care so much for her.

And I wonder, what was the point of all the separation, the pain, the suffering, the conflict, the lines drawn in the sand? What has been gained?

DCF and the powers-that-be in Massachusetts are clearly trying to extricate themselves from an unpleasant situation. After months of Governor Patrick saying he could do nothing, the HHS secretary comes up with a soft ball plan that creates swift movement towards resolution. The Susan Wayne Center in Connecticut is clearly playing the good cop and moving the situation towards reunification after 14 long, contentious months of zero progress in Massachusetts.

The Pelletiers finally have a way out (hopefully) of this nightmare, although that way should have been provided months ago. They are going along with the reunification plan offered by HHS – they have to visit Justina (duh, as if that is a problem), they have to attend family therapy (they report this has happened), they have  to meet with DCF to discuss the ‘progress’ they are making (like they could avoid this?).  After some complaints from the family regarding how long it was taking to schedule it, they will be fulfilling the requirement to meet with Tufts  on the 30th to discuss Justina’s medical plan going forward and it looks like she could be home not long after that meeting, according to Rev. Mahoney.

Beyond the plan and the new placement and the tantalizing whispers of ‘home’, I still have to ask, what was the point of all of this?

Let’s assume for the sake of argument  that Justina does have somatic symptoms. Let’s assume Linda and Lou have been medically abusing Justina: Ok, they clearly do not fit into the extreme category of Munchausens by Proxy (where a parent takes actions that makes their child sick: i.e. poisons, smothers, etc) …maybe they could be classified as having Factitious Disorder – a broad category in which parents ‘gain’ to some degree from having an ill child or perhaps they just meet the overly broad criteria for Medical Child Abuse.

Mind you, I don’t believe this to be true and do not concede this is what is happening, nor do I remotely buy the concept that these diagnoses are commonplace. Just bear with me for a moment as we ponder this situation…

Assuming that this is a family who is struggling with dealing with a serious chronic illness and assuming they had less-than-optimal responses to said chronic illness…what was gained from this traumatic 15 month intervention by BCH and DCF?

If Justina has somatic symptoms in addition to mitochondrial disease, how has she been ‘helped’ in any way by being separated from her family for 15 months? By being kept in the most restrictive environment – housed in a series of psych facilities with seriously mentally ill youth? By being kept away from her normal life: from her school, from her church, from her friends, from her pets? How has any of this helped Justina get better?

The treatment for psychosomatic symptoms is not anything resembling what they have done to this child. If anything, they have created worse issues than she had before. If she had stress and a crazy family that led to her physical symptoms worsening, she now has FAR MORE stress and a FAR CRAZIER family by virtue of the hostile actions of BCH and DCF. She will live the rest of her life healing from this experience. It will affect her whole life – who she can trust, how she interacts with the medical community, how she views her self. Was the need to intervene worth all the irreparable damage?

If Linda (let’s be honest, this is who the finger is being pointed at here, because moms of medically complex children have a great big target on their backs) ‘has’ this factitious disorder, which is, from a chronic illness perspective, truly one of the most asinine diagnoses conceived of by psychiatry,  and has gained from her daughter’s illness in some way – attention, acclaim, fame, sympathy, whatever – how has this experience helped her problems diminish? Would this type of experience not feed her alleged issues by reinforcing that negative behavior? Have they offered any method of helping Linda cope better?  Have they offered her any kind of support services?

If Linda was not ‘coping well’ with the stress of having ill children, how could having her youngest taken away in such a traumatic way possibly help her cope better? If the family dynamics were less than ideal, how has throwing them into this impossible situation HELPED them improve? This family has been harmed, not helped, by the do-gooders in Massachusetts. They will spend the rest of their lives picking up the pieces.

I am appalled that officials at every level of this debacle are more concerned with their policies, political aspirations and exit strategies than the health and well-being of this child and family. If they actually cared about this child and her family and thought there was a problem, they could have helped instead of taking the actions they took. If we are to believe what BCH and DCF says about Justina and Linda and the Pelletiers is true, it then becomes obvious that they have failed the entire Pelletier family miserably and the entire rare disease and chronic illness population by extension.

Which is worse: that they are wrong about this family and made a grievous mistake or that they are right and, in their self-righteousness, utterly failed the family in every possible way? I think the latter might be worse – I could forgive an honest mistake, if apologies and restitution were given and changes were made to prevent it from happening again. I have a harder time forgiving utter failure from self-appointed, self-righteous experts, ‘omnipotent moral busybodies’ as C.S. Lewis calls them, who claim to know it all and whose policies harm rather than help.

After all is said and done, I end up in the same place I began in February:

Psychiatry needs to clean up its act: drastic changes need to be made to the DSM and to the way the field approaches families in need. They need to stop labeling chronically ill people with somatic symptom disorder and climb out of bed with the pharmaceutical companies. They could also stop being surprised that people do not trust them when they behave in such morally reprehensible ways.

Boston Children’s Hospital bears a huge responsibility for pulling the 51A trigger instead of offering help and support if they believed this family needed intervention. Do they have no ability to offer help to families who are rightfully struggling with the challenges and stigma of chronic illness beyond ripping kids away and locking them on Bader 5? (And, by the way, close down Bader 5 – it is irredeemably toxic.) How about training your people on how to interact with families living with chronic illness and come up with ways to HELP THEM instead of taking their children. Change your pro parent-ectomy climate to a pro family one and maybe you have a shot at people trusting you again.

DCF needs to get itself a medical director and implement well reasoned policies that protect families living with rare diseases. There are ways – good ways, effective ways – this issue can be dealt with from an official point of view. Removal of the child can only be a last resort and when it is necessary, offer real solutions towards reunification. Inject some common sense into the department and see how it frees you up to take care of the kids who need your protection.

When all is said and done, I am disgusted. Disgusted at the waste: waste of money, of resources, of precious time, and, most of all, of a child’s humanity and dignity.

And I still do not know what the point of all this was. I wonder if anyone really does…

 

One Step Closer #FreeJustina

 

The Connecticut facility Justina has been transferred to.

Yesterday, after 15 months in DCF custody, Justina Pelletier was transferred from Wayside in Massachusetts to the Susan Wayne Center for Excellence in Connecticut per the reunification plan developed by Massachusetts HHS Secretary Polanowicz. The plan was received with some skepticism and a very reasonable request by the family for clarification. Justina was moved to the new facility, still a hour and fifteen minute drive from the Pelletier home, amid serious concern from the family because they yet again had no say in where their child was being placed. The fact that Justina was not allowed to spend Mother’s Day with her mom did not help the general attitude of the family and supporters about the impending transfer.

Justina arriving in the ambulance…

However, as the day of the move progressed, we heard that the family was going to be allowed to be at the facility to greet Justina as she arrived. Which seemed like a good thing. Then, we heard that the Pelletiers were very positive after meeting with the center’s head. Which seemed almost too good to be true. Lou said there is a light at the end of the tunnel, which is really the most positive I have heard so far from him. Later, I heard him say they went into this situation skeptical but they were impressed by what they saw and heard. (I don’t think Lou is easily impressed these days, which makes it all the more meaningful that he was!)

Lou and the Reverend meeting with the press after a very positive meeting at the new facility.

 

Perhaps even better, we also learned that the Pelletiers will be able to have not only more frequent visits (as in, daily visits) with Justina, but unsupervised visitation. What a change from the normal one hour per week, highly supervised visits they have been permitted for most of the past 15 months. Truly, that shift is an answer to prayer. As far as I know, the Pelletiers were never allowed to visit Justina at Wayside. I don’t believe they were ever in the building (although I could be wrong about that), so the fact that they are able to visit Justina at the facility is a huge step in the right direction.  The family feels that they now have an ally who wants to help them get Justina home. I think what has happened is they are now being treated like parents rather than the enemy. What a novel idea! Too bad Massachusetts DCF didn’t think of that tactic sooner.

The obvious question is raised by this sudden reversal of fortune is…Why?

Why was Justina not allowed to see her mom on Mother’s Day, but 24 hours later, will be able to see her every day? Why, if these parents are so awful and abusive that their daughter had to be removed from their custody for her own safety, are they now, after all this time in which they had to be closely supervised during their brief visits, suddenly allowed to have unsupervised visitation? Why, if the mito expert, Dr. Korson, was so wrong in diagnosing mito to the point of ordering unnecessary treatments, has Justina’s medical care been returned to him and Tufts? Why did Massachusetts governor Deval Patrick bring in the dept of HHS to resolve the case after months of claiming his hands were tied by the court ruling?

So many questions but I think the answer is simple… Massachusetts is desperately wanting to get rid of this case. Desperately. Preferably with a face saving solution (like a transfer to a facility in Connecticut where everything the Pelletiers wanted and were denied in MA is allowed) while still hiding behind the court system and attempting to salvage the ruins of DCF.

While this is a good step forward, much remains to be seen. DCF retains custody of Justina until at least June 20th or so, when they return to Judge Johnston’s courtroom and appeal the custody decision.  My thought is that the reunification plan was vague so that it would be easy for the family to  meet the requirements and allow Massachusetts to (gracefully) rid itself of the Pelletiers. Theoretically, based on the general positivity of the family and the statements made by the facility and the HHS Secretary, Justina will be integrating back into her community, which could mean that she could be making visits home fairly soon, even before the court date. It also means  that Justina could go home, for real, soon after the court date.

Time will tell. At the moment, the move back to Connecticut seems to be a positive one. Today, we are just happy that Justina seems to be in a better place than she has been in and that her family is optimistic about the transfer. Hopefully this change of scenery and the accompanying change of heart indicates real movement towards getting Justina home. The future holds lawsuits and holding people accountable and changing laws. Today, though, we are just enjoying what seems to be  Justina being one step closer to home. We will not be content until she is home and the system is changed, but we are thrilled to finally have some good news…

The Pelletier family was able to meet with Justina as she arrived and comfort her as she settled in.

Justina and Rev. Mahoney after she arrived at the new facility.

 

Justina, Jennifer and Julia.

 

 

 

Things That [Should] Make You Say Hmmm… #FreeJustina

The question lingers, ‘why would a renowned hospital like Boston Children’s Hospital wrongly kidnap a child?’ In my opinion, the answer lies in their frightening emphasis on somatic illness. From bottom to top, it seems there is a disturbing focus on somatoform in the psychiatry department and, from what I can see, the interest in somatoform is not casual.

The head of the Psychiatry department, BCH Psychiatrist-in-Chief, David Demaso, has co-authored a textbook on pediatric psychosomatic medicine. If you go to his page on the BCH web site, scroll down and click on ‘specialties’ you will see he lists physically ill children, Pediatric Psychosomatic Medicine and Child Mental Health Advocacy. I guess you could say he literally wrote the book on the subject.

 

 

The psychologist who ‘diagnosed’ Justina with Somatoform, Simona Bujoreanu, after a mere 25 minute visit, has apparently written several papers on the topic so her interest in the topic is rather obvious. One is entitled Approach to Psychosomatic Illness in Adolescents. Here is the abstract for it, which contains a couple gems that are illuminating:

Due to the increased prevalence of psychosomatic presentations and the difficulty of managing such patients, this article summarizes the latest findings for identifying individual and family risk factors, and new trends in the evaluation and management of pediatric patients with psychosomatic illness.

Up to 50% of patients in pediatric care will complain of medically unexplained symptoms with significant functional and emotional impairment. Such patients place heavy burdens on the healthcare system (frequent utilization of health resources and hospitalizations, specialist consultations, unnecessary investigations, and treatments).

Somatoform disorders in pediatric care are associated with risks for psychiatric co-morbidity (anxiety and depressive disorders), family conflict, parent-perceived ill health, and school problems/absenteeism.

Gaining expertise in addressing pediatric psychosomatic illness can make a great difference in patients’ life and in physicians’ professional satisfaction. Effective treatment approaches involve a multidisciplinary approach to consolidate care and facilitate communication, target the patient/family’s understanding of the mind-body relationship and their acceptance of the bio-psycho-social formulation and treatment, and utilize functional rehabilitation and cognitive behavioral therapy for the individual and family and management guidance for schools.

(I will have to address this abstract in full in a post of its own. Truly, some hidden gems there.)

Simona’s co-author on that paper is Patricia Ibeziako, who, according to her page on the BCH website, is director of  Pediatric Psychiatry Consultation Services.  If you go to her page, scroll down and click on ‘speciality’ you will see two items: Physically Ill Children and, drum roll, please…Somatoform Illness. Fascinating. What is it they say…once is an event, twice is a coincidence and three (or more) is a pattern.

In the ‘or more’ category is Robert Kitts, on the Pediatric Psychiatry Consultation Services team, who also lists Somatoform Disorders as one of several of his specialties. (you know the drill: go, scroll and click. I am not including his pic because he doesn’t necessarily have anything to do with the Pelletier case. Although, all of these photos are available with a simple online search, so it isn’t like these people are not visible to the public.)

Compare the finding of 4 individuals who flat out acknowledge their specific interest in somatoform or psychosomatic disorders at Boston Children’s Hospital to the finding of 0 at Cincinnati Children’s Hospital. I looked at the listed specialties of the Psychiatry and Psychology team members at Cincinnati Children’s, actually a far larger number than listed at BCH, and found not one who claimed somatoform as a specialty. There were several who listed mood disorders, which could include somatoform, but not one of them listed psychosomatic or somatoform disorders as their specialty. I would be interested in comparing other Children’s Hospitals around the country to this pattern, but not motivated enough to do so today!

Is it a coincidence that a hospital housing so many who view somatoform disorders as their specialty, would also be a hospital specializing in parent-ectomies  and locking up kids after overturning their medical diagnoses for somatoform?  You can be the judge of that.

There may be another smoking gun hiding in plain sight, right on their web site:

Our team members’ research

Boston Children’s Department of Psychiatry is recognized worldwide for its advances in child and adolescent mental health research. Researchers on our Psychiatry Consultation Service team are engaged in several significant projects in the areas of prevention, diagnosis and treatment.

Learn more about our team members and their latest research projects:

• I. Simona Bujoreanu, PhD, is a staff psychologist at Children’s. She is currently collaborating on a National Institute of Mental Health-funded study that is examining the effects of a cognitive behavioral intervention for children and adolescents with inflammatory bowel disease and depression.

So, Simona is working on cognitive behavioral intervention for kids with inflammatory bowel disease and depression. Justina is rolled into the ER at BCH with gastro complications from the flu. She never sees her GI doctor when she was supposed to be directly admitted to his care, but rather her care is taken over by a neurologist who calls Simona. Simona promptly, and I do mean promptly, says ‘it isn’t mito, it is somatoform’ and Justina is taken from her parents and eventually locked on Bader 5, the infamous BCH psych unit.

In the  BCH Clinical Investigation Policy and Procedure Manual the policy for research on wards of the state is detailed. Namely, that “Children who are Wards of the state may be included in research that presents minimal risk 46.404 (50.51) or greater than minimal risk with a prospect of direct benefit”. Minus parents to object, dicey research is a lot simpler.

No, this study isn’t exactly about somatoform and Justina apparently doesn’t have inflammatory bowel disease, but it is still suspicious, particularly when you see in the abstract above that:

Somatoform disorders in pediatric care are associated with risks for psychiatric co-morbidity (anxiety and depressive disorders)

So, if Justina has GI issues resulting from Somatoform, then she would be at risk for developing anxiety and depressive disorders which could be the path into this or other studies. I don’t see that as a huge leap, although this may or may not be the smoking gun.

Whether it is or isn’t, there is clearly something at play at Boston Children’s Hospital. You would think, that they would run as far from this association as possible. But, they have been pretty clear that they are looking at Somatoform as the answer to 50% of cases that come through their doors.

From a chronic illness stand point, I suspect what is happening here is this: There is an epidemic of chronic illness which affects younger and younger patients. Chronic illness is messy. It is often hard to diagnose and even harder to treat. Many doctors dislike to treat chronically ill patients because they take a lot of time and they never get better. So, what better way to deal with it, than to say, it’s all in your head. The doctor no longer has to try and figure out what is wrong with them and passes them over to psych. And now, that person is a conduit for money (via the pharmaceutical companies) and grants (via NIH funding) and acclaim (because you can study them and publish a paper). It is a win for them, a horrific loss for the patient. A mercenary way to approach medicine.

It is a sick game and the rare disease/ chronic illness community needs to be aware of this trend. How many has it snared already? Well, one, for sure…

The Impact of #FreeJustina on the Chronically Ill

Justina and her mom, Linda, at a recent visit.

It is no secret that Justina Pelletier’s sad story is being taken as a very real threat by the chronically ill – particularly those chronically ill with rare and misunderstood diseases. Mito is one; EDS is another among so many more conditions that medicine just does not understand. It is ridiculous and appalling that a doctor in an ER can say, ‘I just don’t believe (Fill in the blank) is real and even if it was, you don’t have it.’, overturning or at least questioning the diagnosis of a genuine expert on (Fill in the blank).

Yet it happens ALL THE TIME.

Justina’s plight simply reinforces what we already know of medicine. And what we already know is not good.

Physicians are supposed to ‘First, do no harm‘. Setting aside Justina’s specific situation (we KNOW they have done enormous harm to her and I don’t need to make that case in this post), I would argue that great harm has been done beyond Justina and her family: enormous and, perhaps irreparable, harm has been done to the precious and essential  trust and faith patients have in their doctors.

Sadly, the people who are the most vulnerable, the most medically needy and most need to trust the medical community are the very people who will be hit the hardest by the betrayal of Justina’s Boston Children’s doctors. How can any parent of an ill child walk into a hospital and trust the professionals they encounter? How can the fear of losing their child to a doctor’s ego or financial agenda not be a poison in the minds of every parent when they walk into a ER?

Even in the year 2014, in an era of amazing medical  discoveries, people are still suspicious of doctors and medicine in general. And now, they have been given a very good reason to be suspicious. There will be people who hear about Justina and refuse to take their child or themselves or their spouse or their mom to a physician even when it is absolutely needed.

I predict that someone, probably more than one someone, will die – directly or indirectly – because of the fear engendered by this case. The good doctors are going to have to work twice as hard to earn trust and parents are going to be rightfully suspicious for a long time to come. That is directly on the heads of the people who are incarcerated Justina.

Beyond that, the harm done to the mental health field is dangerous – as if the stigma of mental illness isn’t already enough to dissuade people from seeking treatment. I have had my eyes opened WIDE to the abuses and corruption in the field, yet, I still see that it is needed. There are people who actually have treatable illnesses – who need the treatments and medications that are given by knowledgeable professionals.

Remember Sidney Freedman, from M*A*S*H? My favorite psychiatrist, he was always good from some down-to-earth advice and he never acted like he was God.

And there are some good ones who are not succumbing to the lure of payoffs and what are essentially bribes, who are intellectually honest about the foibles of their profession.

But, the public, who is even more suspicious of psychiatrists than they are of physicians, won’t notice the good ones, will rightly see the bad ones as witch doctors who are lining their pockets through the torture of the innocent, and will eschew any and all forms of mental health treatment.

In my opinion, this is a critical crossroads for the chronically ill. Not only are they going to be far more suspicious of their doctors – from the lowly GP to the exalted specialist, but any suggestion of seeing a mental health professional will be seen as a threat.

Let’s be honest, most people living with chronic illness could use a good therapist. It is hard and stressful and unpleasant to live with chronic illness; depression and anxiety are part of the package. If you are are living with a chronic condition, you are not sick because you are depressed, you are depressed BECAUSE you are sick! If ever there were people who could benefit from appropriate mental health treatment, it is the chronically ill.  A good therapist and perhaps anti-depressants and cognitive behavior training could come in pretty handy…

Yet, I am less inclined to trust a therapist or psychologist now than I was before, and that, frankly, wasn’t much. Without a doubt, I am not the only with that opinion. This poses a real risk for the chronically ill and, again, they are the ones who will pay the price of the Pelletier case for a long time to come.

We know the doctors and institutions involved in Justina’s case and others like it are benefiting in almost every way – financially, professionally and personally. We know the flow of money is absolutely obscene and that ‘wards of the state’ are used as commodities at Boston Children’s Hospital: resources to use up and send home when there is no more benefit to be gained from them – either in a coffin or emotionally broken.

We know who is being harmed by this: the vulnerable, the medically needy, the hurting and the weak. The ones who need the best medical care will be less likely to seek it and will suffer for the fear engendered by Justina’s case.

So, the weak and the ill are damaged, scarred and victimized while the dishonest medical professionals rake in the money.

What ever happened to ‘do no harm’?

Is the harm done to the chronically ill worth the financial gain they accrue? Is the damage to the medical profession in general worth the money lining their pockets? Is the destruction of the precious doctor-patient relationship worth the so called good they think they do?

Sadly, the evidence indicates they absolutely think it is worth it. I just don’t know how they live with themselves.

 

If it was my kid… #FreeJustina

The Pelletiers: Jessica, Lou, Linda, Jennifer and Julia. Justina, of course, is absent.

One thing I keep seeing online and hearing in conversations about Justina Pelletier is something to the effect of ‘Well, if it were my kid, the people who stole her would be dead and I’d be in jail” or “That Lou is a saint, I would have lost it if I were in his place“.

Honestly, this has become my new pet peeve. I try to be patient because it is just a real human reaction in the face of an impossible situation – but, no matter how hard I try to be understanding, it gets under my skin and drives me nuts.

The maddening, insanity-inducing, gut-wrenching reality is that if any of us were in Lou Pelletier’s place, we would be constrained by the same nightmarish shackles: Play nice and risk your kid dying or break the gag order and roll the dice. If we were in Linda Pelletier’s shoes, we would not have the luxury of going ‘postal’, like she undoubtedly is tempted to do, because, if we did, we would be rotting in jail and would never see our child again. There is no special ops team that can go get Justina because ‘rescuing’ her would mean she would have to spend the rest of her life in hiding and would not be able to get the medical care she needs.

This is who they are fighting for…

If they lose it, Justina will have NO one to fight for her. So, for Justina’s sake, they suck it up and act like  grown ups.

No, just like them, we would get up every morning with a sob, dry our tears, fight like hell all day, and go to bed each night wondering how our child is, knowing there is nothing we can do but fight the good fight through the system that is stacked against us.

And, just like them, we would get up the next morning and do it all over again.

The Pelletiers have had 418 days of that existence. It is the harsh reality of being  in an absolutely impossible circumstance that you have no control of. In a sense, it is similar to everyday life with chronic illness – you have no choice but to be strong; stronger than you ever thought you could be.

Whatever you do, do not mistake the lack of violence or insane ranting for saintly behavior or lack of passion on the part of the Pelletiers. What you see in the eyes of Lou, Linda, Jennifer, Jessica and Julia Pelletier is a steely-eyed, grim determination revealing their undying committment to bring Justina home and to bring those responsible for her kidnapping to account. That will be far more effective in the long run than giving into the impulse to lose it and ending up in jail. They have mastered the ability to reign in their emotions so that they can see their unasked-for mission through: seeking that justice be done for Justina.

Tempered Steel

What is happening to them is similar to  the tempering process of steel – through heating to a critical temperature and shaping and hammering and rapid cooling and more heating and hammering and cooling, a blade that is strong and sharp and resilient is born.

The Pelletiers are becoming swords.

The people who have taken Justina should fear – not violence, but the justice they so richly deserve.

So often tyrants create, through their own oppressive conduct,  the one weapon that can bring them down and end their tyrannical reign. So it is with Boston Children’s Hospital and the Massachusetts Department of Children and Families. It is by their own hand they have created the sword than can bring them down.

 
May justice be done.

 

 

Why I Believe the Pelletiers #FreeJustina

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…