Sandy

When I read Arnie’s story that you can read in full at the link I’ve provided below on ProHealth.com, I was astonished once again at how the medical community has turned its back on CFS patients and this story is particularly sad.  ME/CFS takes so much from people’s lives and in Arnie’s case it not only took his health but it also took away the safe refuge of his home life…and all because his doctor didn’t believe ME/CFS was real.   Here are some excerpts from the story…

Every year, parents in this country and abroad face court hearings before judges and juries in which they are subsequently found guilty or innocent of intentionally harming their child due to Munchausen’s syndrome by proxy.

Depending on the circumstances, the prosecutor, representing the state, may add fraud to the charges. Usually, the mother’s psychological competence becomes an issue of enormous significance in such a trial. If a child has been judged to have Munchausen’s syndrome by proxy by a psychiatrist serving as the state’s expert witness, the mother may face the removal of her child from her household, usually into foster care, as well as criminal charges.

The notion of a mother deliberately hurting her child is difficult for most of us to comprehend. Nevertheless, for some years now, Munchausen’s syndrome by proxy has been accepted by the medical profession as bona fide, if somewhat baffling. And there is no question that it occurs. Hidden videotapes in hospital rooms show parents either injuring their children, or doing things that make it appear that a child is ill. What a world….

But, because this does occur, physicians have grown suspicious, particularly when confused by symptoms in the patient they treat.

With this in mind, imagine what might happen when a mother whose child suffers from an extremely complex, misunderstood – even overlooked – chronic disease, becomes an outspoken advocate for that child, struggling to explain her son’s illness to unsympathetic doctors and suspicious school officials.

Imagine the situation from the perspective of the sick child, who can barely articulate to his friends, much less to an attorney or a psychiatrist, what ails him. Imagine how, over time, these quiet struggles can escalate, thrusting mother and child into a firestorm of accusations by authorities of all stripes, as they attempt to salvage their dignity and even their right to remain a family.

A chronic disease robs children of many things, but it should never destroy the life-affirming refuge children find in their home, as it did with a boy named Arnie.

Arnie was 10 years old when he first experienced the onset of ME/CFS but he had been sick most of his life with endless sore throats, headaches, allergies, stomach problems and colds.  But, like with most of us with CFS, the doctors weren’t able to connect the dots with all of these symptoms over the years and his symptoms continued to escalate.   Instead of being taken seriously, his symptoms were attributed to an “over-anxious” parent who was worried about trivial illness. 

Arnie’s symptoms continued to escalate to where his exhaustion left him unable to attend school and he was confined to bed.  His mother continued to press on to try to find an answer for her son’s illness but the doctor was unable to explain Arnie’s incapacitating fatigue. 

Months passed, a period during which Arnie failed to receive either a diagnosis, or an education. By law, school systems are required to provide home tutoring to students who are too sick to come to school, but school systems also require that the child carry a diagnosis before they hire a private tutor using state dollars. Arnie had no diagnosis.

The school year ended, and another began.

Arnie was still house-bound because of the exhaustion. In every respect, he was absolutely typical of a child with CFS.

• He suffered from sore throats, headaches, sensitivity to light and blurred vision, pain in his muscles, joints, and lymph nodes.

• His ability to learn was diminished because of difficulties with memory and attention.

• He could not remember what he had read.

• His attempts to exert himself physically uniformly resulted in relapse, or worsening of his fatigue.

Eventually, doctors ruled out thyroid disease, lupus, multiple sclerosis, rheumatoid arthritis, HIV disease and hepatitis.

Some of these doctors did find immune abnormalities that suggested that Arnie was suffering from an on-going viral infection.

But the doctors believed that the abnormalities failed to fit a pattern associated with any particular disease � at least, any disease with which they happened to be familiar.

• Neurological tests revealed that Arnie suffered from vertigo and lacked the kind of fine motor control in his hands that might be expected of a boy his age.

• Other tests of intellectual capability demonstrated that Arnie’s short term memory and concentration skills were impaired.

All in all, everything about Arnie – his long history of illness, his physical exam, his laboratory tests – were typical of CFS, a disease his doctor did not believe existed.

Then Arnie’s father started believing that his son was not ill as well and was tired of paying for all of the medical exams and tests that came up with no answers. His wife, however, continued to seek out treatments and help wherever she could find it: naturopaths, ecologists, acupuncturists, etc.  Each of these types of specialists believed there was something wrong with Arnie but they all had different theories as to what the diagnosis may be. 

Now Arnie found himself in the middle of  a battle between his parents.  Arnie felt guilty for the problems between his parents and he would try hard to feel better in order to keep peace between his parents but we all know how CFS wins – it’s a disease we can’t fight.  Arnie’s parents split up and he blamed himself for it. 

When his illness continued, in spite of his best efforts, he became withdrawn. And when Arnie’s father moved out of the house, Arnie assumed he had caused the break up.

A child sees the world from a simplistic, egocentric point of view. By the age of ten, children are better able to assess the relationship between cause and effect than they were at five, but the tendency to believe in a magical connection between one’s own actions and unrelated events has yet to vanish entirely at Arnie’s age.

Arnie’s parents made a mistake, too. They were unable to separate their private conflicts from their son’s illness, leaving him caught in the crossfire. What followed was probably inevitable: a kind of chain reaction in which a sick child became a battleground, fought over not only by his parents, but by the local school system, and, eventually, the state of New York.

As far as Arnie’s pediatrician and his teachers were concerned, the issues were clear.

Arnie seemed to be incapacitated with a slew of mysterious symptoms, just as his parents were in the process of divorce. These authorities believed Arnie was suffering a kind of psychiatric meltdown because of his parents’ acrimony.

According to the law of the land, if parents are causing a child’s illness – whether psychiatric or medical – then the parents are guilty of child abuse. In such cases, the law decrees that the appropriate social institutions intervene on behalf of the child, even removing the child from the destructive environment if necessary. In Arnie’s case, the vultures were beginning to swarm.

The principal of his school made several visits to the boy’s house during the first year he was absent, acutely aware that neither his parents nor his doctors had been able to offer the school a diagnosis. Each time she visited, Arnie was in the living room, seated, and watching television. He did not look sick to her.

The principal assigned a truant officer to the case.

The officer saw Arnie in his back yard one spring day, resting in a lawn chair, sipping lemonade. Finally, the school filed a truancy petition with the local court in order to force Arnie to return to classes. In addition, the local social services department launched an investigation of Arnie’s parents to determine if they were guilty of child abuse.

At the court hearing on the matter of truancy, the judge listened to the attorney representing the school argue that Arnie had been absent without good cause.

Arnie’s mother, representing herself, told the judge about her son’s medical condition. She called it chronic fatigue syndrome. She also described the holistic-style therapy of vitamins and herbs and acupuncture she had embarked upon to cure her son.

In turn, the impassive judge inquired about the impending divorce, as well as the custody hearing. Arnie’s parents had begun arguing about which one of them would raise their son after the divorce.

Not surprisingly, the judge, who knew of CFS only as the rather flaky sounding “yuppie flu,” concluded the hearing by ordering a psychiatric evaluation of Arnie. He also ordered Arnie to return to school.

The next day, two things happened, both of which ended in disaster: Arnie went to school, and his mother hired an expensive attorney.

Arnie’s physical illness had now become, in the eyes of the law, a psychiatric problem because of the pending divorce.  School was a nightmare:  the kids believed he was “faking it” and his gym teacher forced him to exercise, as she thought it would do him good.  On the third day, he was too weak to get out of bed. 

In the meantime, the lawyer hired by his mother had obtained Arnie’s medical records and had read them closely, paying special attention to the variety of opinions from specialists suggesting Arnie’s problem was psychosomatic.

The attorney made a unilateral decision: Assuming the doctors were correct that family turmoil had caused Arnie’s psychiatric problem, she decided to put her energy into helping Arnie’s parents obtain their divorce.

At the court-ordered psychiatric evaluation, the doctor began by interviewing Arnie and his mother together. Arnie was dizzy, exhausted, and found it difficult to concentrate on the psychiatrist’s questions. His mother recognized her son’s distress, and consequently did most of the talking in order to help conserve his limited energy. Afterward, the psychiatrist asked to talk to Arnie without his mother present.

The exhausted child was slumped in his chair. It was flagrantly apparent to Arnie that the psychiatrist had believed very little his mother said, and, after her departure from the room, he became even more withdrawn, even hostile. He responded to the doctor’s queries in monosyllables. Finally, the psychiatrist talked to Arnie’s mother privately.

The woman tried to “explain” chronic fatigue syndrome to the psychiatrist, who eyed her warily.

Struggling to suppress her own feelings of despair, she spoke as enthusiastically as possible about the alternative medical treatments she was continuing to explore. She wanted the doctor to know just how hard she was trying to help her son get well. The psychiatrist concluded the interview eventually, leaving Arnie’s mother feeling uneasy.

Afterward, the doctor called her husband, who took the opportunity to tell the psychiatrist that his boy was fine. His wife was the sick one, he added.

A week later, the psychiatrist submitted his report to the court. At the end of a lengthy discussion, he unveiled his diagnosis: Munchausen’s syndrome by proxy.

Arnie ‘looked well’, the doctor had argued in his report.

Arnie was removed from his mother’s care and was placed in a foster home because the psychiatrist said that Arnie’s problems were due to depression and the divorce and that his mother seemed enthusiastic and cheerful when speaking about his illness.  The psychiatrist said teh mother had “created an environment of oppressive neediness that had driven Arnie to feign illness, and her subsequent over-involvement with her child’s illness stemmed from this deviant desire to be needed.”

Arnie was again told to return to school and his final custody determination would be made at the custody hearing.  Arnie was also ordered to receive psychiatric counseling twice a week.  The judge did allow Arnie to be excused from gym class.  A week later, Arnie swallowed a handful of aspirin and sleeping pills and he was admitted to a psychiatric hospital immediately afterward.  This naturally fed right into the court’s belief that Arnie had a psychiatric illness and not a physical illness.

Arnie’s incarceration and resulting isolation would have been considerably less had he robbed the corner grocery store.

• The psychiatric hospital administrators forbade his mother to visit him; after all, she had fostered the imaginary illness in her son, then encouraged his belief in it.

• Hospital doctors ordered him to submit to counseling sessions, sessions during which he found it hard to avoid confessing his depression. Such confessions only served to strengthen the prevailing view that his bizarre “illness” was psychiatric in origin.

• Arnie was given large daily doses of tricyclic antidepressant medications, a class of drugs that often increase fatigue in CFS sufferers. When Arnie complained that the drugs made him feel worse, staff at the hospital simply ignored the complaints.

• They further demanded that he participate in all the ward activities. Arnie followed the path of least resistance, dragging himself from project to project without comment, but he felt as if he was dying a slow death.

In short, Arnie was snared in a trap worthy of Franz Kafka’s imagination.

He would remain incarcerated and drugged until he was successfully rehabilitated, which chiefly meant renouncing his absurd belief that he was sick.

Where is Arnie today? Arnie is now 19 years old and he remains disabled by ME/CFS.  His incarceration in the psychiatric institution lasted six months, after which he lived in foster care for another several years. He has reunited with his mother, and is at last receiving basic symptomatic care for his illness.

As Dr. Bell notes his article, Arnie’s story is unfortunately not uncommon.  He says that more and more children with ME/CFS are being diagnosed with Munchausen’s syndrome by proxy because of the increase in cases of ME/CFS in children.  The courts are remanding these children to foster homes and it the children are being doubly punished for being sick.

Arnie’s attempted suicide attempt, under such conditions, is hardly uncommon, either. Too often, children with CFS who have been taken from their homes, told they are imagining their illness, and sent to live in strange homes with adults who refuse to acknowledge their symptoms and disability, find death to be a better option.

Like Arnie, these sick children frequently end up in psychiatric institutions, deprived of the comfort of the parent, or parents, who may be the only people who understand they are ill.

Failure to diagnose an illness is, in some circumstances, malpractice. Failure to properly diagnose Arnie resulted in a forced separation from his mother – his only advocate – and his subsequent suicide attempt and incarceration. For Arnie, failure to diagnose had serious consequences.

The existence of CFS has been confirmed by the National Institutes of Health and the Centers for Disease Control. There continues to be legitimate debate as to what causes the illness, but to deny its existence because of a collective failure to understand its cause is inexcusable.

The American Academy of Pediatrics has stated that at least one part of its mission is to act as advocates for children. On the contentious matter of CFS, which afflicts thousands of children and adolescents, however, the Academy has remained silent. I believe the Academy’s silence is equivalent to child abuse. Our court systems have an obligation to protect the young and the helpless. Our courts, however, take their advice from the medical profession.

There are many forms of child abuse: neglect, physical abuse, sexual abuse… I would like to suggest that the term “medical abuse” be used when children are directly hurt by apathy or ignorance of health care providers.

Source: “Arnie’s Story”: A Child’s CFS, Misdiagnosed as Munchausen’s by Proxy