The following article was originally published
in the Winter, 1996-1997 issue of Mass. CFIDS Update. It is
redistributed by and used here with the permission of the National CFIDS
Foundation.
Prologue to Mary
O'Connor's Article
by Charles W. Lapp, M.D.
As a pediatrician who specializes in persons
with CFS, I have been alarmed at the increasing number of families that have
been disrupted by well-intentioned but poorly informed state agencies. My
first case was from Australia where the State did not recognize the
diagnosis of CFIDS, and removed a child from the home, placed her in foster
care, and forced her to exercise and attend school. Of course she did very
poorly, having been pushed emotionally and physically far beyond her
abilities. All of this was instigated by unfeeling physicians who perceived
the girl as “lazy" and her parents as "too lenient." Ironically, the very
parents who loved and sought to protect their child were perceived by others
as neglectful, and they were persecuted under the aegis of “child
protection" laws.
In the accompanying article, Mary O'Connor
relates first hand a similar situation as it occurred to her family in the
United States, this time because a physician made a hasty and unsupported
diagnosis of "Munchausen Syndrome by Proxy" or MSBP. This diagnosis, like
"childhood neglect", is frequently considered when children do poorly in
school and have multiple medical problems, but in very few cases can the
diagnosis be supported by fact. MSBP is unique in that the child's illness
is caused and perpetuated by a parent, usually a mother, who derives some
secondary gain - some attention, some benefit - from that child's illness,
resulting in unnecessary examinations, treatments, or hospitalizations.
Mortality may be as high as 9%. Sadly, many physicians and social workers
mistake the loving care of a concerned parent for neurosis and neglect; and
many mistake chronic illness for a perverse illness career.
Not only does Mary's story make us painfully
aware of what can happen when professionals misunderstand, but it urges us
strongly to educate the professionals as to the symptoms of CFIDS and the
physical limits that it places on its victims.
Charles W. Lapp, MD
Hunter-Hopkins Center
Charlotte, NC
One Family's Nightmare
by Mary O'Connor
Our family is an ordinary middle-class
family. There is really nothing unusual about us. We attend church, vote,
watch television - a conventional family. We were unprepared for the
nightmare that happened to us. We tell our story in the hope that other
families will be spared from this experience.
Josie became ill with CFIDS on July 11,1992.
She was 11 years old. We had been on vacation and were on the way home. She
woke that day with symptoms typical of flu -headache, muscle aches, nausea,
and sore throat. After two weeks she began to have other symptoms -
difficulty sleeping, walking, and thinking; sensitivity to light and sound
and other neurological symptoms. Worse, her headaches and nausea
intensified.
Josie had been diagnosed with CFIDS for a
year when her pediatrician sent her to a neurologist for severe headaches.
He told us CFIDS was not a real illness and wrote in her chart unknown to
us, "Munchausen Syndrome by Proxy."
That is when our family's nightmare began.
Munchausen Syndrome by Proxy (MSBP) is a rare
psychological illness in which a parent fakes a child's illness. The parent
does horrible things to the child in order to gain attention. Although it is
an uncommon form of child abuse, it is suspected when a child who is
chronically ill but has "normal" exams does not readily respond to medical
treatment.
Having a child with CFIDS, we had experienced
suspicion. Specialists told us nothing was "seriously" wrong with Josie.
"Send her back to school. Treat her like normal. She'll be fine," they
advised. One said, "Don't you just want to shake her? I mean, if she were my
daughter, I think I would just have to shake her [from frustration]."
Doctors questioned whether she felt excessive pressure because of school.
Nurses treated her as if she had done something wrong.
However, we never expected they would accuse
us of child abuse and try to have her taken away!
Josie's pediatrician consulted with Dr. David
Bell and followed his advice. After this pediatrician became ill, our new
doctor dismissed Bell as "too conservative." She referred us to a local
internist, Dr. Cichon, saying he had a "special interest" in CFIDS.
Over the next two months Dr. Cichon gave
Josie IV gamma globulin, IV acyclovir and Zofran, Interferon injections, and
more than 20 different oral medications. As she got steadily worse, his
attitude changed. He noted in her chart that her pain was "possibly put on."
He said things to me like, "You focus too much on Josie's symptoms. Josie
gets too much attention. You are making things worse. Why don't you go back
to work, and get a babysitter to take care of Josie?"
I thought the suggestion that I hire a
babysitter to nurse my sick child while I went back to work as a nurse made no sense.
Because I was afraid to antagonize him, I avoided saying so. Inside, I was
upset, worried, and confused.
Josie's pain worsened. Dr. Cichon tried
injectable Demerol, then IV Demerol. When she became so nauseated that she
couldn't take fluids, he admitted her to the hospital.
Over the next days the staff made negative
Judgments about us. An example of this: because there was heavy traffic as
workmen renovated the unit, I kept Josie's door closed to keep her room
quiet. Later we found the staff had charted "Mom appears angry, keeps door
shut."
Four days after admission five of the
physicians involved, including Dr. Desai, a psychiatrist, and the medical
director of our HMO, had a meeting. They decided that Josie was toxic from
medications and should be put in ICU for "detoxification." There they would
"try to get rid of the protective family," and then would send her to a
psychiatric hospital "since there is no good objective data [to prove she is
sick]." We were not told of these decisions. Instead, Dr. Desai told us
Josie had an eating disorder and should be transferred to a psychiatric
hospital. We declined this recommendation.
The next day Dr. Cichon told David and me
that the staff had read a recent article in Redbook about Munchausen by
Proxy, and they now believed that was Josie's diagnosis. We couldn't believe
he was serious! We thought that Dr. Cichon concurred with Josie's CFIDS
diagnosis, that he understood and supported us.
But he didn't. I was "over-involved," he
maintained, and should no longer stay with Josie in the hospital. He wrote
later in her chart, "Patient still being overly mothered and protected by
mom. Can't get mom to accept her potential worsening of child's underlying
condition."
We had always stayed with Josie when she was
in the hospital, and for good reason. On previous admissions she had been
carelessly mistreated. For example, she had been left alone and helpless in
a wheelchair in a dark hallway late at night because staff was too busy to
take her back to her room after a test. We felt we had to be present to
protect her from these kinds of inappropriate actions. David and I took
turns staying with her at night, and I was there during the day when he was
at work.
Josie had been unable to eat for a month. Her
weight loss became critical. When the doctors decided on tube feeding, her
improved nutrition helped her nausea, she began to eat, and she grew
stronger and more animated. Her headache remained severe but she had more
energy to return home.
We began to hope she would soon be able to.
Meanwhile, however, physicians met again.
Three of them told us that Dr. Cichon could "no longer support a diagnosis
of chronic fatigue syndrome," and that Josie and I had a "symbiotic
relationship" and must be separated. They planned to permit us only two
hours of visitation daily, enroll Josie in school and have a teacher begin
classes in the hospital, require her to go to physical therapy, and require
her weight to be 80 pounds before she could be discharged from the hospital.
Then they left the room without discussion.
We requested a different psychiatrist to
examine Josie and review her records. He found no indicators of abuse or
eating disorder. This, and weight gain, secured Josie's discharge in spite
of the committee of physicians. At home her condition deteriorated. Our
pediatrician referred us to other doctors and to Children's Hospital in
Boston. No one had suggestions other than to stop all medications. Later,
when we tried to renew a medicine for pain, the pharmacist told us that he
had been "ordered" by the HMO not to fill any further prescriptions for us.
He added that "the HMO says they are turning the whole matter over to MRS."
This meant Health and Rehabilitative Services - the state agency that
investigates suspected child abuse.
We appealed to our pediatrician, who said
this HMO was like "the Gestapo." She suggested she re-admit Josie to the
hospital as this would "take care of MRS." She said this was all she could
offer. Anguished but with no other alternative, we agreed.
Josie was placed in ICU where the medical
director, Dr. Orlowski, ordered aspirin for Josie's pain and told us we
could visit her two hours a day only. If we did not agree, he would not
treat her. He also said he believed there were simple remedies for Josie's
problems. "You have to trust me," he said. We didn't trust him, but faced
with the HRS investigation and no other medical care for Josie, we felt
forced to accept his demands.
The next days were agonizing. Josie phoned us
constantly, crying pitifully, complaining of pain and nausea, asking for us
to bring her home, asking why we couldn't be there with her. We tried to
reassure her with what Dr. Orlowski said, that he would help her, that he
was trying to understand what was going on. Our words, which we did not
believe ourselves, sounded hollow and offered little comfort.
At one point a doctor took the phone away
from Josie and refused to allow her to call. When she cried she was told to
be quiet. At one point a nurse made fun of her by saying, "Josie's having a
cow," when she was sobbing with pain. She was given placebos for her
headaches.
After several days, Dr. Orlowski told us that
Josie's diagnosis was drug dependency. He said this was not our fault, as
"The doctors gave her the medications." At one time, he said, she did have
CFIDS, but she has been cured. "Everything they gave her in the fall would
have killed it," he claimed. "She is now suffering only from the drugs."
His treatment was a "contract" with Josie to
get her nausea "under control." If she ate, she would be allowed time with
us. He also told us that home schooling was the "wrong thing" for Josie, and
she should be sent back to school. At the end of our conversation, extremely
upset, I asked him to discharge Josie. He refused which meant we would have
to go against medical advice to take her home. Still facing investigation by
the HRS, we believed we had no choice but to acquiesce.
The next day an HRS investigator told us that
a complaint filed against us was "child abuse by substance misuse/abuse."
While we struggled to obtain Josie's medical records to refute this charge,
the investigator met with Dr. Orlowski and was told that Josie's medications
were "inconsistent with a diagnosis of CFIDS" and that her correct diagnosis
was Munchausen Syndrome by Proxy and anorexia/bulimia. Desai, the
psychiatrist who had insisted Josie's diagnosis was eating disorder, offered
the opinion that Josie was in "immediate danger" in our care. As a result
HRS petitioned the court to have Josie placed in foster care.
An emergency hearing was held the next
morning. The judge, unable to see clearly who was right, ruled that Josie be released to us
provided we follow "any and all" recommendations of Dr. Orlowski. Dr.
Orlowski then ordered Josie transferred to a psychiatric hospital. When we
refused, we were returned to court for not following his orders. This time
Dr. Orlowski hedged his testimony about Josie's diagnosis; and she was again
discharged to us; but we were still required to follow his orders.
Dr. Orlowski required Josie to see him each
week, be weighed at the hospital, keep a log of everything she ate, and have
random drug screens. She could have no medications of any kind. She had to
return to public school full time immediately. We were also to have
psychological evaluations and individual and family counseling at our
expense. An HRS case worker would make regular visits to ensure our
compliance with these rules. Josie returned home under the grave stress of
constant fear that she would be taken from us. For days she cried. For
months she had terrible nightmares. She had nothing to relieve her pain. She
was in bed except for the time she was in school and for the weekly hospital
trip. Because of headaches, nausea, and fatigue she often had to leave class
to go to the nurse's office.
After two months, Dr. Orlowski decided that
Josie had "classic depression." He ordered her to use an exercise machine
for 10 minutes each night as his treatment. After the first attempt Josie
collapsed. The next day she was too sick to go to school. After Josie was in
bed five days, Dr. Orlowski remanded her to a psychiatric facility - even
though Josie's counselor said she had no psychiatric condition and advised
him against it.
Meanwhile the psychologist who performed the
ordered evaluation had found no pathology in any of us and said MSBP was not
a correct diagnosis. He recommended that Josie's symptoms be relieved by the
use of medications, that home bound schooling be provided, and that we have
counseling to help us deal with the crises we had experienced. Dr. Bell
wrote a letter to the judge refuting the diagnosis of MSBP, and the
therapists arranged by Dr. Orlowski also told the judge there was no
psychopathology in our family. An additional psychiatric evaluation also
concluded that MSBP was an incorrect diagnosis and that there was no
evidence of family pathology.
Faced with this testimony and no evidence of
drug abuse, HRS reversed itself. The judge closed our case in May, nine
months after we saw the neurologist who wrote "Munchausen's Syndrome By
Proxy" in Josie's chart, three months after the first court hearing, and
after we spent some $30,000 in legal and medical fees.
However, we remain listed in the Central
Registry, a national computer bank which contains files of all people accused of child
abuse. This listing empowers HRS to place Josie in foster care immediately
if we are again accused of abusing her, justifying their actions on "past
case history." Josie herself says of these events: "I was frightened all the
time. Everything was equally horrible - the ICU, school, the psychiatric
hospital. I don't remember how I coped. I felt betrayed by the doctors, and
I was confused about what was happening to me. I didn't understand all the
different diagnoses they gave me, why they were withholding medications from
me, why they sent me back to school, why they didn't believe me."
Since these events Josie has been severely
ill. It is our belief that the terror and agony she endured at the hands of
Drs. Cichon and Orlowski worsened her condition. Our lawyers said we could not sue for malpractice because
there is no "proof" that they harmed her. They also inferred that bringing
suit would put us at risk for another custody fight. Because physicians and
insurance companies have more political power and financial resources than
we do, we were unable to press our case.
[Editor’s note: Mary’s case is not an
isolated story. Similar stories are still happening in the United States and
in other countries.]