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McMan's Depression and Bipolar Report
In Depth
Feb
27, 2007 Vol 9 No 6
Website
Book
Blog Donations
Special
Bipolar Children Issue
How a surprise
best-seller changed attitudes, brought hope, and improved lives.
Also In This Issue
Through the eyes of
kids, About McMan's Report, About
McMan, My Book,
McMan's Web, My Blog,
East coast trip
Donations.
No Way This is Going to
Fly
There have been a great many ground-breaking books in
the field of medicine and psychiatry, but very rarely does one come along
that literally puts an illness on the map. To truly comprehend the impact
of "The Bipolar Child: The Definitive and Reassuring Guide to Childhood’s
Most Misunderstood Disorder" by Demitri Papolos MD of Albert Einstein
University and Janice Papolos, we need to cast our minds back to BBC
(before The Bipolar Child):
"The Bipolar Child" (Broadway Books) was published in
Jan 2000. A PubMed search for "pediatric bipolar disorder" reveals that
the first article substantially devoted to the topic appeared in 1995. One
of the entries from that year was a review article that concluded there
was nothing much to review. "Pediatric-onset bipolar disorder: a neglected
clinical and public health problem," read the heading.
The years 1995 and 1996 saw the publication of a handful
of articles, namely from Joseph Biederman MD and Janet Wozniak MD of
Harvard. Then in 1997, Barbara Geller MD of Washington University (St
Louis) broke into publication with a review article. Zip, zilch , zero
quantifies 1998’s output, and 1999 reprises a bit more Biederman and
Wozniak and Geller.
Modifying the search to "child bipolar disorder" yields
a further small trickle of articles, with emphasis on small and trickle.
So ten years ago, Dr Papolos was staring into an empty
research cupboard. Moreover, Dr Papolos’ own list of publications up to
that time involved behavioral genetics and brain science rather than
pediatric bipolar. As for clinical experience, child and adolescent
psychiatry is not Dr Papolos’ field and his own interest in bipolar kids
was rather late in coming.
So imagine: You are the co-authors of an extremely
successful book called "Overcoming Depression." It’s 1996 or 1997 and it’s
time to consider a new project, such as the "definitive" book on a topic
that does not exist for which there is virtually no published research and
for which you have precious little authority. Your own publisher passes on
your proposal, but somehow you manage to find a taker, and in 1999 it’s
time to turn in your manuscript. Your new publisher, it turns out, has no
problem with the words, "bipolar" and "child," so long as neither one
appears with the other in the same title on the same cover of the same
book.
This has to be the dumbest idea since the Edsel, you
must be thinking.
The book lands in the bookstores and something totally
improbable happens – "The Bipolar Child" sells 70,000 hard-cover copies in
its first six months, is featured on "Oprah" and "20/20," is part of a
"Time" magazine cover feature, and – whoa! – back up. What happened?
The Surprise Best-Seller
Let’s take a closer look:
First, although the research into pediatric bipolar was
virtually nonexistent a decade ago, researchers such as Drs Biederman,
Wozniak, and Geller and were rapidly breaking new ground, and were on
their way to publishing their own landmark studies. Mainstream psychiatry
was beginning to pay attention. Momentum was building.
Second, when it came to challenging entrenched beliefs,
there was no better person for the job than Dr Papolos. Part of Dr
Papolos’ training at New York State Psychiatric Institute of Columbia
University included time with Robert Spitzer MD and Jean Endicott PhD.
This was back in the seventies when these two pioneers were leading a
revolution in psychiatry in the form of developing the modern DSM. Unlike
today, the entire field was fluid and wide open. Eager young residents
such as Dr Papolos were encouraged to closely observe the patients on
their rounds, keep an open mind, and take part in discussions.
From this experience, Dr Papolos learned that the DSM
was never meant to be cast in stone, that it was intended to change as new
knowledge and insights came to the fore. Thus, years later, when he became
interested in a population that defied all conventional diagnostic wisdom,
Dr Papolos instinctively followed the spirit rather than the letter of his
own mentors’ achievements.
Other things were going on, too. For one, the new
phenomenon of the internet provided a medium for concerned parents to
communicate and start organizing. Listserves such as BPParents and
organizations such as the Child and Adolescent Bipolar Foundation gave
parents a powerful new voice.
A lot of misinformation has been spread on how drug
companies are driving the trend toward diagnosing children with bipolar,
but the reality is that this is a movement that has always been led by the
parents. Janice and Demitri Papolos were simply smart enough to pay
attention. In the stories they heard, the Papoloses found more than enough
source material for their book.
Finally, Dr Papolos had the ultimate collaborator in the
form of his wife, Janice. Dr Papolos may have been the one with the MD,
but it was Janice who possessed perfect pitch for connecting with
concerned parents. Most experts, even with ghost writers, fail miserably
on this count. Janice delivered a manuscript that literally hit readers in
the gut.
In retrospect, the only surprise to this surprise
best-seller was that no one saw it coming.
Parents Respond (And So
Do Critics)
Right off the bat, parents started using "The Bipolar
Child" to educate their children’s clinicians and educators. A sampling of
reader reviews on Amazon:
"With this book in hand, I approached my son's first
psychiatrist who had been treating him for ‘generalized anxiety’ for over
a year, regardless of our input about his therapy and meds not working. I
told him that my son was a dead ringer for bipolar and that we had a
history of Bipolar within our family. He insisted that our son was NOT
bipolar. I immediately sought out another child psychiatrist that
primarily treated BP children and we eventually had our suspicions
confirmed. Without this book, I could not have done it."
"I found it so useful that I purchased a copy for our
son's school to keep on hand as a reference."
A further sampling of the reviews provides an insight
into what this book has meant to parents:
"I've been criticized for so long, and lived in shame
because of it. I now see that I'm doing everything right and that I am
indeed a good parent dealing with a bad illness, not a bad child. What a
relief!!!!"
"Oh my gosh, this book is great. I feel so much better
knowing that my son isn’t alone and neither am I."
"I knew after reading this book that my son was
suffering and not just a ‘bad child.’ It gave me hope."
"Please, please believe that childhood BP exists. BP
starts at a VERY early age. It is very real and treatable. Find a good
pdoc and partner with him/her to help your child."
But some clinician reviewers raised the red flag about a
"fad diagnosis":
"Few books scare me more the ‘The Bipolar Child,’ read
one Amazon review. "It frightens me that this book is actually influencing
parents and physicians into medicating young children …"
According to another:
"Beware of people specializing in a particular
diagnosis. They will see it everywhere."
And yet another:
"I see a significant number of children diagnosed with
bipolar disorder for psychiatric re-evaluation. Many parents of these
children quote ‘The Bipolar Child’ and request I give their child a
diagnosis of bipolar disorder. When re-evaluated, the vast majority of
these children are not found to suffer from bipolar disorder …
To date there is no proof children diagnosed with
bipolar disorder grow up to be bipolar adults."
Unresolved Issues
Years later, we are able to agree on only one or two
things, namely that early-onset bipolar is hardly a fad diagnosis, and
that clinicians must be open to the possibility of the illness in
evaluating so-called "problem" children. Thanks to "The Bipolar Child,"
parents have a much better chance of obtaining proper care for their kids,
whether these kids ultimately turn out to have bipolar or not.
Nevertheless, the concerns of the skeptics remain valid.
Despite the fact that there is now far more in the way of published
studies and clinical awareness, psychiatry is still operating largely in
the dark. Diagnostic consensus on early-onset bipolar is yet to be
established, and we are years away from ascertaining whether so-called
bipolar children grow into classic bipolar adults. An editorial by S
Nassir Ghaemi MD of Emory University and Andres Martin MD of Yale in this
month’s American Journal of Psychiatry sets the scene:
"Some clinicians avoid labeling affectively
labile youngsters with bipolar disorder, preferring instead
less stigmatizing categories like depression, ADHD, or the
ubiquitous yet vacillating ‘mood disorder not otherwise
specified.’ Others diagnose prepubertal bipolarity rather liberally,
often based solely on the presence of irritability, mood swings,
and aggression."
The authors of the editorial distinguish between what
they define as "narrow phenotype" and "broad phenotype." In the former,
the diagnosis is restricted to cases that more closely resemble the adult
version of bipolar. In the latter, "perhaps irritability and nonspecific
mood lability would suffice."
The authors note that the jury is still out, but advise
that "the Hippocratic tradition of caution in the face of
uncertainty, combined with the modern emphasis on diagnosis,
may be the wisest course to take."
This begs the obvious question that David Healy MD of
Cardiff University took upon himself to address. In an essay in the April
11, 2006
PLoS Medicine, Dr Healy observed that "drugs such as Zyprexa and
Risperdal are now being used for preschoolers in America with little
questioning of this development."
Dr Healy cited the example of a mother, who, after
reading "The Bipolar Child," succeeded in convincing her physician to
diagnose her two-year-old daughter with bipolar.
Before you recoil in horror, ask yourself if we should
refuse to treat a two-year-old who has been diagnosed with cancer, either.
True, a lot of controversy exists over labeling kids with an illness we
know very little about, but before one renders judgment it pays to have
several long conversations with the parents of children diagnosed with
bipolar. Thanks to the right meds, many of these moms and dads will tell
you that their kids are now being invited to birthday parties for the
first time and no longer being sent to the principal’s office. They will
be first to tell you that the meds are no magic bullets and that every day
remains a challenge, but they are also daring to hope that their kids have
a shot at rewarding and productive lives. Significantly, a look at Amazon
reveals that not a single bad review there comes from anyone who
identifies themself as a mom or dad.
Appropriately, in this segment, the last word goes to a parent:
"The first time I read this book after my 8-year-old son
was finally diagnosed properly four years ago, I cried with relief that
FINALLY what our family had been living with was right there in black and
white … It brings peace to your chaos ... it helps give you control over
this crazy situation. As we say in the Bipolar Parents support group,
‘RUN, don't walk - buy this book NOW!’"
Working Toward a
Diagnostic Consensus
By early-onset bipolar, we are talking about an illness
that first manifests in childhood and even very early childhood rather
than the usual late teens or early adulthood. We have yet to determine
whether the illness is simply adult bipolar that turned up early, or is to
adult bipolar what juvenile diabetes is to adult diabetes, or even whether
what is happening to these kids can truly be called bipolar.
What we do have is a clearly observable phenomenon that
superficially resembles ADHD, conduct disorder, personality disorder, and
mood disorder, with clear signs of a nightmarish inner life and large
helpings of anxiety, extreme anger, and sleep disturbances, plus no end of
behaviors that drive parents to the brink and literally hold entire
families hostage. Various symptoms mentioned in isolation such as
"giddiness" lend the false impression that psychiatry is over-reacting to
what is normal childhood behavior. But something far more serious is going
on – just ask any parent who has had to hide all the kitchen knives.
An example from the third edition of
The Bipolar Child:
"One day, after [mother] Melissa refused to buy him
candy, Eric [kindergarten age] ran out of the grocery store and attempted
to run across the street. A few times he attacked her – hitting, kicking,
and biting. Once, when sent to his room for a time-out, he opened the
second-story window, knocked out the screen, and threatened to jump. Later
he told his mother he thought he could fly."
Drs Papolos, Biederman, Wozniak, Geller, and others all
have slightly different takes on what they have been observing, but they
all seem to agree on the following:
- Extreme rapid cycling, days on end - These kids can
go from king of the world to denizen of the underworld and back again in
a matter of hours. This feature alone would exclude practically every
kid from a DSM bipolar diagnosis, which requires manic episodes to last
for at least a week.
- Severity of the manias – This is no mere child
moodiness or prepubescent emotional volatility. Bipolar kids are far
worse off than bipolar adults, no question about it.
- Reckless behavior, grandiose, won’t accept no for an
answer, disturbed sleep, raging tantrums hours on end, extreme
separation anxiety, circadian rhythms run amok, gross distortions in
perceptions to reality, precociousness in certain functions. These and
other features tend to distinguish child bipolar from ADHD, or that
symptoms of conduct disorder and personality disorder may clear up when
the child is treated for mania. Nevertheless, co-occurring ills are par
for the course.
- Responsiveness/lack of responsiveness to meds –
Treating a bipolar child for depression or ADHD may make him or her
worse. A mood stabilizer or antipsychotic, though often far from
perfect, may mean your kid gets to have a childhood.
- Family history of bipolar – Can be the diagnostic
tie-breaker.
The Third Edition
The third edition of "The Bipolar Child" was published
in August of last year, and is essentially a new book. Part of this is a
reflection of what we have learned since the publication of the first
edition, but a major reason is that both authors have whole-heartedly
thrown themselves into research, advocacy, and education.
Soon after the publication of the first edition, Dr
Papolos and Janice established the
Juvenile Research Bipolar Foundation
(JBRF), "solely dedicated to the support of research for the study of
early-onset bipolar disorder." Major projects, all inter-related and
involving a consortium of researchers from various universities, include
establishing a large cohort for genetic studies, publishing a child
bipolar screening test, and developing an expert consensus on diagnostic
criteria. This research is now finding its way into published studies, and
clearly informs a lot of the new material in the third edition.
But the true experts are the parents. As with the first
edition, Dr Papolos and Janice amply illustrate why the ability to listen
is often the best research tool.
More on Diagnosis
The book elaborates on a "core phenotype" that the JBRF
has been working on. As well as the usual mood symptoms, a cardinal
feature of early-onset bipolar would include poor modulation of drives
(such as impulsive behavior), plus a checklist of disturbances that
may involve excessive anger, poor self-esteem regulation, sleep/wake cycle
disturbances, anxiety, trouble habituating to sensory stimuli, executive
function deficits (such as trouble adjusting to a change in plans),
emotional inflexibility (such as overreacting to small events),
inflexibility to motor activity (from difficulty getting out of bed to bad
handwriting), and a family history of a recurrent mood disorder.
The Order Behind the
Chaos
Two chapters in particular provide an insight into the
sound and the fury. "The Psychological Dimensions" lays it on the line:
"Many children who have bipolar disorder are highly
excitable, have problems integrating sensory experience, and clearly have
difficulties regulating their level of mental and physical arousal. They
have difficulty getting to sleep at night, experience and unusual degree
of motor restlessness, and have rapid and prolonged periods of emotional
excitability as well as high rates of anxiety symptoms. Frequent bouts of
anxiety can be abruptly triggered by any number of stimuli or demands."
For far too long, parents have been blamed for their
children’s illness. The chapter, "What Causes This Condition," fingers
more likely suspects such as the startle response and an over-sensitive
amygdala (which governs fear). For good measure, there’s the HPA axis, the
hippocampus, and other emotional circuitry. "Suprachiamatic Nucleus – The
Master Clock" reads one tantalizing subheading. Don't be intimidated -
this chapter is a terrific beach read.
Daring to Hope
Considerable space is devoted to guiding parents through
a health-insurance-educational maze that seems specifically designed to fail their
child. No stone here is left unturned, from choosing a psychiatrist to
what to expect when having your child undergo neuropsychological testing
to dealing with bureaucrats to smoothing the way with your child’s
teachers.
But mostly this book is a tribute to the parents and
their kids. Fittingly, the last two paragraphs to "The Bipolar Child"
serve as the final word here:
"We hope the day comes soon when these children can run
and play and swing on swings that have nothing to do with shifts in moods.
When parents can rejoice in the great creativity this illness can confer
but can watch a child grow with stability, reaching toward a future that
is bright, filled more with sunlight than threatening clouds.
"This will happen only if all – researchers, doctors,
parents, educators, drug companies, journalists, and policy makers – get
involved and make these children’s future a national public health
priority. We need to reach, so they can reach. We need to reach, so they
can soar."
Purchase The Bipolar
Child
You can help support this Newsletter by
ordering
The Bipolar Child
at Amazon using this link.
Through the Eyes of Kids
Parents of bipolar kids are among my favorite people.
Despite the terrible illness that brings us together, I always manage to
part company on a feel-good note. Maybe it’s their love and dedication and
intelligence and optimism in the face of circumstances that would leave
anyone else embittered and demoralized. Maybe it’s their sixth sense for
projecting the kind of empathy that can’t be faked.
One of these individuals is Tracy Anglada, whom I met
last summer at a conference in Stockton, CA that featured Dr Papolos and
Janice Papolos. I was there in a dual role as a reporter for this
Newsletter and to work up a pre-publication buzz for my
soon-to-be-released book. The organizers of the conference kindly allowed
me a table to exhibit my wares. One of my fellow exhibitors was Tracy, and
we found lots of time to talk.
Tracy is a Florida mom who started up her own
organization, BPChildren, dedicated to helping young people and adults
understand more about pediatric bipolar. She is the author of "Intense
Minds: Through the Eyes of Young People with Bipolar Disorder."
One quick look at the opening paragraphs, and you will
drop everything you’re doing:
"A broad smile spread across my son’s face. His eyes
shone brightly and he turned to me to share his good news. What was the
cause of excitement for my 6-year-old son? We were at a meeting, and the
speaker was describing the horrible plight of the Biblical man Job.
"’Job was so sick, he wanted to die,’ said the speaker.
"What was my son’s good news in response to that
statement? Two simple words: "Like me!" He had finally found someone he
could relate to, someone else who wanted to die. It was comforting for him
to know he was not alone. It was no comfort to me. As a parent, those were
the worst words I could have heard."
This is a book where the kids (or adults recalling their
tormented childhoods) get to tell their stories. It’s designed for kids to
read, but any clinician or educator or other interested party who does not
buy a copy is guilty of malpractice. Listen:
"I was told how retarded, demonized and horrible a child
I was. So I never felt I was wonderful or good." (Dawn)
"I was trying to survive in an environment that was not
the same to me as it was to other people." (Tasha)
"It feels like a ping pong ball going from one side to
the other in my head – one bounce telling me to stay quiet, the other
bounce telling me to scream." (Tim)
"My dreams were scary. I was zipped in a bag of water in
my closet drowning, while bad guys were trying to kill my daddy." (Steven)
In case you still think we’re forcing meds on kids:
"I would have been better off being treated if I had
been diagnosed properly. I was miserable as a child. Horribly miserable."
(Lee)
And, last but not least, the good we can take away from
all this:
"I use this illness to my advantage. Be strong and
remember where you have been and what you have been through. If I beat
those days, I can beat anything now that I know the illness, the symptoms
and the feelings of it." (Linda)
Purchase Intense Minds
You can help support this Newsletter by
ordering
Intense Minds at Amazon through this link.
About McMan's Report
McMan's Depression and Bipolar Report is
a free service that is wholly independent and entirely reader-supported. It is published three
times a month by John McManamy. Twice a month, McMan's Report publishes in
the form of "Research and News," with emphasis on short reports. Once a
month McMan publishes as "In Depth," which features an extended single
theme.
About McMan
John McManamy is a former financial
journalist with a law degree. In early 1999, following a series of severe
depressions and a lifetime of denial, he was diagnosed with bipolar
disorder. Soon after, as a means of coming to terms, he started
researching and writing about his illness. This Newsletter has been going
since June 1999, his Website since Dec 2000, and his
Blog since Oct 2005. In 2004, John McManamy received a public service
award from NAMI-CT, the CT Psychiatric Society, and the CT Dept of Mental
Health for his Newsletter and Website.
In Oct 2006, HarperCollins published his book,
Living Well with Depression and Bipolar Disorder.
John McManamy is also involved in advocacy, public speaking, and
facilitating a DBSA support group. He recently moved to the San Diego area.
About Living Well With Depression and Bipolar
Disorder
Living Well with Depression and Bipolar Disorder
(HarperCollins) is based on six years of writing and researching this
Newsletter, plus the author's own experiences and the insight and wisdom
of some 200 patients and family members. It is the first mood
disorders book written by a patient on the clinical and scientific issues
(and more) from a patient's perspective.
"... a vast trove of knowledge and insight
accumulated in the process of producing the most influential newsletter in
the field. And, like his newsletter, this book will become a source of
information that will prove indispensable not only to patients and families,
but also to clinicians and scientists."
Frederick K Goodwin MD, Professor of Psychiatry George Washington
University, Author (with KR Jamison) Manic Depressive Illness, Former
Director National Institute of Mental Health
For more info on Living Well, check out my two new mirror sites at:
www.bestbipolarbook.com
www.bestdepressionbook.com
Living Well is available in all major bookstores. You
can also purchase
Living Well from Amazon by clicking the link.
Once you have read Living Well, I encourage you to go to
Amazon and write a customer review. Simply click
on the
Living Well page on Amazon and follow the
instructions. Reviews take about five to seven days to be posted.
font-family:Arial;color:#666666;font-weight:bold">About McMan's Web
Check out my nearly 300
articles on all aspects of depression and bipolar at:
http://www.mcmanweb.com
Oldies but goodies:
Child
Bipolar - Part I (Overview and symptoms)
Child
Bipolar - Part II (Treatment)
About My Blog
Check out my twice-weekly more personal and
informal side at:
http://blogs.healthcentral.com/bipolar/johns-bipolar-stories
Latest:
Hamlet's Battles ... With Depression and Mania ("We’re talking about
an age when men wore swords as fashion accessories and secreted knives
where we now keep cell phones. One slight misstep, one indiscreet glance
the wrong way, one blown syllable in one soliloquy, and cue up the grave
diggers for the first act.")
Why I Love My Job ("Two hours later, I still hadn’t found the right
piece to complete my issue. It was late evening and I was working to a
morning deadline.")
My Visionary Idea ("Suddenly, as I am working on something else, a
vision of the system faults Paul has requested pops into my head. I set my
current work aside and start typing out a hurried email. He wants system
faults, okay, I’ll give him system faults.")
One Crazy Idea or a Model of Recovery ("Hell, do you think it was some
normal caveman who came up with fire? C’mon, going into a burning forest
and bringing back a flaming souvenir is just, well … think what your
mother would say.")
McMan's Ultimate Comfort Baked Mac and Cheese ("Fortunately, being
from the northeast, I knew exactly what to do. I had elbow macaroni in the
pantry. I had cheese. I had milk. It was time to roll up my sleeves and
get to work. It was time for winter comfort food.")
Speaking
I will be heading to the east coast the
last week of March for a visit with family in CT, and two speaking
engagements in the tri-state area. If your DBSA or NAMI (or other group)
would like to slot me in for a 30-minute talk and Q and A and to sign
books, please do not hesitate to contact me at
mcman@mcmanweb.com. Any locale
along the Bos-Wash corridor or into upstate NY is doable. Let's talk.
Donations
This Newsletter is a free service. If you
would like to support this Newsletter, you can donate any amount you
choose by clicking on the PayPal button below:
...or click this link: Donations
... or by mailing your check to:
John McManamy
PO Box 5093
Kendall Park, NJ, 08824
USA
(Please note: I will be keeping this New Jersey address as my business
address for the next few months. All mail to this address will be
forwarded to my new address outside San Diego.)
By way of guidance, if this Newsletter was
a paid subscription, rates would be $10 hardship, $29 regular, and $100
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postcard. $100, $250, and $500 donors will receive special gifts.
Subscription Info
For change of address, email
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with both your old and new email addresses.
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John McManamy
"Knowledge is necessity."
Check out my new book,
Living Well With Depression and Bipolar Disorder,
published by HarperCollins.
Copyright 2007 John McManamy
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