--Demitri and Janice Papolos
Every day we receive numerous emails
from parents who have read our book or who have come to our site for information.
Sadly, and all too frequently, their questions and comments are interlaced with
some mention of the guilt or self-blame they feel about their children’s
behaviors and illness. Doctors, family members-- in addition to the greater
outside world-- have pointed out that they were not strict enough (or that they
were too strict), that they were not consistent, or that the family is dysfunctional
(or to use a family system’sphrase: "He is acting out the family pathology").
Mothers and fathers write that despite being veterans of multiple parenting
classes, they fear they have not provided the "right" environment
for their children, and that little has changed the behavior of their ill sons
and daughters.
So we thought it would be interesting
to take a look at a population of children who come from a completely pacifistic
society where anger or violence are never displayed,and where children are expected
to be well-behaved, submissive to authority, quiet, and non-intrusive around
adults. These children have never seen television, the nightly news or scary
or gory movies, and they have never played Nintendo. They also come from families
who have large sibships who tend to act as role models, and are surrounded by
cousins and peers who follow the traditions of the community closely and thus
provide additional role models.
Where do such children grow up?
In Lancaster, Pennsylvania in a community of Old Order Amish--people who dress
in plain clothes and who live much as they did when they came to America in
the eighteenth century. Dr. Janice Egeland has been studying this unique culture
for over 23 years collecting clinical,genetic and epidemiological data from
more than 30 family pedigrees who have been identified as carrying the gene(s)
for bipolar disorder (see Overcoming Depression, 3rd ed. pages 58-64).
Having access to all the records
of the families in the community who have or who are at risk for developing
bipolar disorder, Dr. Egeland and her colleagues recently turned their attention
to early records of bipolar adults in an attempt to determine possible childhood
predictors of the illness. The findings were reported in the October 2000 edition
of the Journal of the American Academy of Child and Adolescent Psychiatry and
they tell us many things. Not only do they highlight the early symptoms that
occur before the onset of the illness in this population, but they offer some
fascinating insights into how much of a bipolar childs’ behavior might
be internally driven versus how much might be culturally determined.
It must be said that the Amish
have no more bipolar disorder than the rest of the population, but in many ways
they provide a natural laboratory for genetic and clinical research. They are
an ultraconservative religious sect with a well-defined, closed population,
with little migration into or out of the community. They can trace their ancestry
back to 30 progenitors from Switzerland, and they maintain extensive genealogical
records. The community encourages a highbirth rate, so researchers can study
large families and sibships. Very important, this community prohibits the use
of alcohol and drugs, substances known to complicate diagnostic assessment,
and the Amish seek psychiatric treatment when necessary because they feel mental
illness interferes with a person’s relationship with God.
The Study
Dr. Egeland and her colleagues
designed the study to look at the social histories taken at the first admission
to a hospital for psychiatric evaluation and treatment. At the time of this
first admission, none of the 58 patients had been diagnosed, but all went on
to develop bipolar I disorder.
The objective of the study was
to unearth the narrative histories in these intake reports in search of prodromal
or early features of juvenile onset bipolar disorder. Three raters looked at
the record information individually using a semistructured coding "Log"
designed to note any mention of mood; any "objective"symptoms such
as appetite, sleep, and behavior; and any "subjective"symptoms such
as cognition and feelings. For each entry, the raters coded the age and/or developmental
stage at which the family said it occurred. In the instances where family informants
did not state a specific age for an early symptom or behavior, guidelines were
used based on the meaning of age-graded terms among the Amish. For example,
"school years" were coded as age 8, and "Amish vocational classes
and work" as age 14. Also, any evidence that a feature was episodic was
noted carefully.
Once the independent coding was
completed, the three Logs were compared to confirm accuracy.
Symptoms That Were Early Indicators
of Bipolar Disorder
The symptoms and behaviors with
the highest frequency were depressed mood (53%), increased energy (47%), decreased
energy/tired (38%), anger dyscontrol and//or quick temper and argumentative
(38%), and irritable mood(33%). The next most commonly reported symptoms included
bold/intrusive behaviors, excessive behaviors, and conduct problems(28-29%);
decreased sleep and cried (26%); and overly sensitive (24%). When depressed
mood, increased energy, decreased energy/tired, irritable mood and excessive
behaviors were examined, there was evidence that these symptoms and behaviors
were highly episodic.
Dr. Egeland’s group than
compared the sample by gender and found that both males and females had the
mood and energy symptoms, but that significant gender differences were found
when they compared several of the other items. For instance, the males had more
grandiosity, excessive behaviors, and lowered inhibitions; and the females were
more frequently cited as crying, having more obsessive-compulsive traits, and
as being more stubborn.
Because the researchers wanted
to examine the patterns of symptoms in early childhood and adolescence, they
then excluded 18 of the patients who had symptoms of the illness at an older
age and looked more closely at the 40 patients whose records indicated very
early signs.
The most frequently reported
symptoms were divided into four age epochs: 0-6 years; 7-10 years; 11-12years,
and 13-15 years.
In the youngest age group (0-6),
13 cases revealed that 23% reported "cried," 23% had early periods
of increased energy or were more active; and 23% were bold/demanding. Many of
these symptoms were episodic in nature. An admission record of a 15-year-old
boy revealed that the parents noted that by age 6 he had periods during which
he was noticeably different from other boys with respect to the following: "fussy"
(i.e. cried more often), irritable moods, quick-tempered, anger dyscontrol,
conduct problems, and "being a terrible tease." His parents told the
social worker doing the hospital intake that from a very young age he was a"fight
cat" and that they could not leave him at home with siblings.
In the 7-10 epoch, the most frequent
observation was irritable mood (29%)--all but one reported that these periods
of irritability were recurrent. 25% were reported as "overly sensitive."
It is worth taking a look at
the researchers’comments on the trait of "oversensitivity." They
report that "Parents or teachers who identify a child as ‘overly sensitive’
refer to a child who has a heightened sense of awareness. If one observes such
children, their ‘social skin’ appears to be overexposed.They may seem
‘hyperalert’ to the feelings of others--peers and adults alike. It
is as though an electrical field surrounds these youngsters and their antennae
pick up all possible signals."
The children in the 7-10 age
category also had higher rates of other behavioral patterns, specifically, cried,
bold/demanding,quick-tempered, stubborn, and conduct problems (all traits terribly
incongruent with Amish culture).
Between the years of 11-12, the
mood changes and energy symptoms (both increased and decreased) became more
evident . 50% had depressed mood; 30% had either decreased or increased energy
and noticeable mood shifts.
Among the 13-15 age group,depressed
mood still ranked first (38%), but for the first time we see two primary symptoms
of mania--decreased sleep and increased talkativeness. According to the authors
of the report: "Evidence regarding bold behaviors, lack of impulse control,
and various disciplinary problems might now be interpreted with greater confidence
as representing the conventional ‘excessive behavior’ of a nascent
manic illness."The manic-like symptoms such as grandiosity and excessive
behaviors--in this group--seem to manifest later in adolescence than reports
studying early symptoms in non-Amish children.
With permission,we reprint Table
2 of this study:
The Girl Who Bossed Others and
Was Fearful
In this article, Dr. Egeland offers
three case vignettes that illustrate some of these early symptoms. We would
like to reprint one in particular because it ends on a hopeful note with a young
woman who suffered three hospitalizations and had a very "stormy"
adolescence, doing well now, married, and an active member of the community.
This is Emma’s story:
The best way to convey the pattern
for Emma is to quote directly from the coding sheet of prodromal symptoms, all
of which were reported as episodic in nature:
* Age 1: More active than normal.
More demanding as a baby.
* Age 8:Bold/demanding/very outspoken.
*Age 10: Obsessive-compulsive traits
(OCD). Mood changes. Overly sensitive.
* Age 11: Irritable.Labile/mood changes.
Depressed mood.
* Age 12: Bold/intrusive/demanding/outspoken,
OCD and somatic traits.
At age 12 there were also nonepisodic
symptoms such as energy loss, ruminations, fears/phobias, panic symptoms, worried/fearful/tense.
Emma’s story begins sadly
and ends on a more hopeful, positive note. Emma was a "problem child from
the start." She crawled everywhere and required much more attention than
her siblings. She was called a "bold" child who was self-centered
and who acted "too adult." By age 10 she "bossed her younger
sibs" and abdicated her work to the older ones. Alternating moods, evident
by age 10 or 11 were characterized as "moody and starey" versus "irritable
and bossy." Her parents said she was "changeable."
Emma herself recalled having
"weak periods" and a problem expressing herself. She, like others,
realized she was "different and felt ashamed." Her mother said she
worked harder in school for her grades than most but "trailed along"
and was only tolerated by the others. "She always irked other children."
She was greedy, did not share, and could not be trusted. During her childhood,
Emma used rituals to"keep herself together" and expressed a variety
of fears(storms/dying). She was upset easily, was very sensitive, and angered
quickly. Over time her moods intensified.
The onset of bipolar I illness
was at age 16, when Emma was first hospitalized with a mixed clinical picture
of both euphoric and irritable moods. After three months, she appeared improved
but was noncompliant with medications and was readmitted twice in "stormy
spells." As she accepted her illness and treatment, her world came into
focus. For the first two years of stability, Emma quilted at home and then decided
to teach Amish school, a stressful job in which she was successful. She is doing
very well, continues to take medication, and has married.
*****************************************
Dr. Egeland and her team realize
how important it would be to define clearly which prodromal symptoms are involved
in the ultimate manifestation of a bipolar disorder. To that end, they have
been conducting a prospective investigation of children at high risk and children
from a matched sample of normal controls. They are now looking at the narratives
of her sample of 200 "at-risk" and "control" family children
and have promised us a future interview when the data is assembled. Should they
be able to create a reliable prodromal profile, a child could be identified
and treated early-- before a severe, recurrent pattern of illness takes hold
and an entire family goes down in the process.
In closing, we’d like to
point out that although the Amish culture has strong social injunctions against
boastful, demanding, intrusive, irritable and bossy behaviors, these early precursors
to a bipolar disorder emerged--as surely as they do in the world outside Lancaster,
Pennsylvania. While all families could strive to be more functional,
and a steady diet of violent television and video games is hardly the stuff
of a healthy ego, we hope the report of this study eases the debilitating feelings
of guilt and shame in parents who must struggle to deal with a temperamentally
difficult child whose symptoms in early childhood are seen only through a glass
darkly.
We send you our best,
Demitri F. Papolos, M.D. and
Janice Papolos
Additional Note:
Because of the prescribing practices
in the world outside the Amish culture, it is important to talk about depressed
mood as a cardinal symptom seen early in these Amish bipolar adults’ histories.Today,
any child brought to the attention of a clinician whose primary symptoms include
depressed mood, decreased energy, extreme sensitivity, and irritability is likely
to be diagnosed with unipolar depression and placed on an antidepressant-- most
likely an SSRI such as Prozac, Paxil, Zoloft, Celexa, or other antidepressants
such as Effexor or Wellbutrin.
Yet not only were these symptoms
early precursors of a bipolar disorder in this Amish group, but Dr. Barbara
Geller of Washington University in St. Louis recently reported on the ten-year
follow-up of a group of 72 children who were originally diagnosed with depression
before puberty (the average age atdiagnosis was 10). By the age of 20, nearly
half--48%-- had developed the bipolar form of the disorder. Since children with
co-morbid ADHD were excluded from this study, it is possible that these rates
of switching would have been even higher.
Antidepressants are known to
increase cycling patterns and possibly advance the course of a bipolar disorder.
Therefore, it behooves all clinicians(and parents) to keep these two studies
in mind before commencing any trials of antidepressants.
References:
Egeland, Janice A.,Abram H. Hostetter,
David L. Pauls and James N. Sussex.
"Prodromal Symptoms Before
Onset of Manic-Depressive Disorder Suggested
by First Hospital Admission Histories." Journal ofthe American Academy of
Child and Adolescent Psychiatry 39 (October 2000): 1245-1252.
Geller, Barbara et al. "Bipolar
Disorder at Prospective Follow-Up of Adults Who Had
Prepubertal Major Depressive
Disorder." AmericanJournal of Psychiatry 158
(January 2001): 125-127.
Papolos, Demitri F.,and Janice Papolos. Overcoming Depression, 3rd ed. NewYork:
HarperCollins,1997.
Papolos, Demitri F. and Janice Papolos. The Bipolar Child. New York: Broadway
Books, 2000.
(The authors wish to thank LaVurne
Williams at the American Academy of Child and Adolescent Psychiatry for her
help in facilitating the permission to use materials from Dr. Egeland’s
article. For more information about the American Academy of Child and Adolescent
Psychiatry visit their web site at www.aacap.org.)
