I want to share my experience of the diagnosis and treatment of Bipolar Disorder in children. This is simply my truth and it clearly will contrast with the truth of many in the medical community as well as the truth of many consumers, however I will hope that it casts a ray of hope for at least a few practitioners and parents of children considered to have this condition – and by so doing, light up a new runway of possible direction and sought-after change.
The story was born shortly after my daughter was born in 1991 and it soon became abundantly clear that my crazy hours working for a family therapy clinic were not going to do. After a lot of thought I decided to throttle back my career temporarily by taking on a job with clear time boundaries of 9 to 5 and Monday to Friday ONLY. Yeah! That was easy!
The job was working as a case manager for the local behavioral health authority and it entailed taking on a case load of 35 existing ‘high level’ children already in the mental health system and a handful of new cases as they trickled in.
One of the more interesting components of the job was a duty to always attend the monthly med-monitoring appointment. Along with the child and parent, we met with whichever child psychiatrist was assigned. For the new children I attend the longer and more extensive initial psychiatric evaluation. When I started this position every single child on the caseload I inherited was already on medication.
I do believe in symptoms, and I am very aware that there are symptoms that are distressing, alarming, annoying, and stressful to the adults involved and self-defeating on the part of the child, however I am, as a result of these many hundreds of medication related visits over the course of a nearly two-year period, much more reluctant to simply follow the prescribed medical model of believing symptoms equal pathology. I have two main reasons for stating this. The second one is a hopeful reason based on the results I have seen without resorting to medications. I will talk about it near the end of this article.
The reason most relevant to Bipolar Disorder is both frightening and reprehensible and one I’ll try to do “justice” to first, as justice really does fit here. Justice begs the question as to why the behavior-diagnosis-medication-increase medication downward spiral that I am going to speak about continues to this day.
Here goes: Most of these children on my caseload started off as diagnosed as either severe ADHD, ODD or PTSD with symptoms of ADHD. At this period of time in the early 1990’s, almost all paths of symptomatology related to behaviors that were distracting, impulsive, oppositional, aggressive or distractible, seemed to lead to prescribing Ritalin. In reviewing the cases that I inherited, it was evident that the medications and any other pre-existing additional treatments of individual or group therapy were not working. I base this assessment on the clearly charted existence of the same complaints, issues and problems continuing on month after month and year after year. For the new children being added into the system and onto my caseload it seemed to me that Ritalin was deemed to be the only treatment idea any of these staff doctors had after the first few moments of meeting the child…at which point they were simply then titrating the dosage.
I remember one time when the doctor was sitting behind an unusually big desk with his unusually large collection of distinguished diplomas on the wall behind him, a very impulsive child and his young parents dutifully sitting in front of him looking for answers. He had no sense whatsoever of how to either talk to the child, direct the child, or advise the parents to help the child. In fact, he actually said a few reactive things to the child that clearly accelerated his negative acting out. And the remarkable thing was that within the half-hour or so of the initial psychiatric evaluation this doctor kept scribbling prescriptions on his pad, then wadding each one up as he kept raising the dose progressively in relation to his having no idea how to really help this child or advise these parents. (What’s stunningly remarkable is years later when my reputation for helping these very hyperactive children became widespread; this doctor brought his child and family to see me because he didn’t want his own child to be on medications.) This same scenario of surrendering the possibility of behavioral treatment and resorting to dispensing medication is true for every single child psychiatrist that I had witnessed as a ‘fly on the wall’ case manager, except one.
That one was an interesting exception. Unfortunately, not a beacon of hope. Although she publically claimed expertise on the specialized subject of children with Bipolar Disorder, partially based on her stated reason that her son was Bipolar and “living” with such a child contributed strongly to her being an expert, she, at the same time, always let it be known publically that it was not going well.
The early 1990’s was clearly a moment in time when the diagnosis for children of “Bipolar Disorder” was coming into vogue but what was so distressing is that every single child that I knew that had this woman as their assigned doctor quickly gained that new diagnosis – almost as if she saw this as an upgrade, this despite the fact that most other doctors would have viewed the same symptoms as ADHD.
I know we would so love to see the DSM and diagnosis as an empirical and objective process but this was just the tip of the iceberg in coming to see the truth that the opposite was the case. In reality, diagnosis is ever so subjective.
This psychiatrist came to mind earlier this year when I was asked to do one of the keynote addresses at a state-wide Mississippi ADHD conference. This invitation to do so got my attention since my alternative views on medications so often precludes me from being an invited speaker, but here I was getting to speak by way of a strong recommendation by a clinician on the conference committee who suddenly was having extraordinary results by using my approach to treatment, the Nurtured Heart Approach.
It was fantastic to present to so many professionals that don’t ordinarily get to hear about alternatives to medications. And one other thing I did differently at that conference was to attend a few other sessions – one of which was by another Psychiatrist who was a self-proclaimed expert on Bipolar Disorder. Her talk was authoritative and informative within the limited viewpoint that all paths lead to medications, a conversation I have heard many times before. The startling revelations for me were 1.) a complete absence of understanding the dynamics of these children in terms of how they respond 2.) how these children can be understood in relation to other human beings and 3.) a complete denial of any possibility that there could be an iatrogenic component to the dilemma of what she described as this: All children with Bi-polar disorder have comorbidity with pre-existing ADHD. Never did she consider that that the dynamics of the symptoms in relation to the dynamics of the previous treatment by way of medications could actually be the launching pad for what is deemed to be Bipolar Disorder.
So now back to 1991-1992, my two year period of incubating the impetus of the Nurtured Heart Approach and of having my eyes opened wide about how the medical communities ineffective treatments for ADHD is itself a pathway for the almost inevitable progression to a Bipolar diagnosis – or code for going from a gateway mental health concern to having two feet squarely in the camp of being a chronic mental patient and being at risk for much more serious repercussions of medication and life impacts and side effects.
What I saw over and over and over again was a nice person who was a doctor trying to do their job as best they could with the limited knowledge of treatments they had – primarily a choice of medications 1, 2 or 3 and absolutely nothing outside this realm – encountering standard fare symptoms of ADHD and treating it always with medications 1, 2 or 3. What happens in subsequent visits is the frightening part.
By way of standard medical theory and practice this nice person who is a doctor sees their child client and a parent each subsequent month sticking to the protocol of simply asking, “How it’s going?” Sounds nice, warm and friendly, but it’s actually deadly.
I came to seeing so clearly as a result of the perspective of seeing so many of these appointments each month, that the doctor’s simply asking what seems to be such a very innocent question will always inevitably lead to more medications: the meds having meds because of how doctors treat the many predictable and unpredictable side effects of meds with other meds, and to, at the very least, higher and higher dosages of the original medication on this wild goose chase to help. The body is miraculous and it adapts to foreign substances and the dosage of Ritalin that seems to produce “improvements” for a few months at some point needs to ramped up to continue that fleeting illusion of positive change.
I got to see that the above process of helping was further from an empirical and objective process than most people are led to think. It was nothing but a nice doctor on a completely subjective, though well-intended, fishing expedition…that almost always led to the child thusly being labeled Bipolar. The doctor’s asking questions pertaining to “How is it going?” always led at some point to problem-oriented answers from the parents and further dutiful follow up questions led to more and more discussion of problems and issues. It was a one-way street.
Even if the parent started with an answer of “pretty good” or even “a lot better,” the doctor followed with obligatory investigation that led somewhere and that somewhere was always inevitably negative in orientation because that was the foundational basis of their only barometer…follow the pathology. Here’s why there was nowhere else to go in my humble opinion:
Medications NEVER really cure anything. How do I know? Simple observation. The problems never stopped by way of the medications but simply got masked over. How do I know? Before the meds start up in the morning and after they wear off in the evening, every single day without fail the problems are still there. Ask any parent. There’s been no essential healing. The child is none the wiser on how to best control the problem, and the parent and teacher are none the wiser either on how to best help the child – so the problem resides always just under the surface. So, if a parent is asked repeatedly “How is it going?” especially if they see the doctor lean in with more connected interest when they describe problems, there will always be always be issues at hand to describe…and they will.
I guarantee you at some point the parent will use the word depression or anxiety. Why? For one thing, these children have inherently confusing lives. They are told over and over to behave and to do the right thing but they typically get under-celebrated and under-recognized and under-appreciated when they are behaving and doing the right thing. They actually get so entirely and thoroughly “energetically celebrated” when things start going wrong. That is when parents engage, verbalize, and get excited.
Society’s statements of praise such as “thank you” and “good job” are sparse and pale compared to how juicy society’s statements of disappointment reprimand and upset. Even our teaching moments for these “symptomatic” children seem to most often occur when things are going wrong and they have us being so much more alive, present, juicy and willing to spend quality and quantity time and life force as compare to how little we lean in when things are going right.
As a society we seem to have to wait until the A’s on the report card to have the juicy responses to the positive, but when things go awry even a hair we can barely wait to say the million things that come to mind. That’s when our children see us waxing poetically. That’s when the poet in us surfaces – to say all we feel compelled to say when something was not done well enough or when a poor choice was being made.
So can you imagine how confusing that is for a child? We are constantly saying: “Do the right thing,” but essentially we keep paying kids the big bucks energetically for the very opposite. Of course then they are depressed and anxious. If someone confused your life for a day or week or month at some similar level you’d be enormously confused and eventually anxious and depressed.
Eventually, one day in a medication review with the doctor this whole pattern unfolds. I’ve watched the following a hundred times like clockwork – the nice doctor scratches his head with a somewhat puzzled, yet self-satisfied, look and slow-releases the words that come, so predictably, to blow me away: “Well maybe it was never ADHD after-all, maybe it was Bipolar Disorder.”
In those very minutes everyone’s lives change in an instant. The child has now received a life sentence – a serious supposed life-time condition. The child and the parent become subject for a much more chronic sense of mental illness driven home by the medical communitie’s sense of what is though to be an untreatable brain disorder and permanent chemical imbalance. It’s saddens me to think kids and their parents are led to believe this is true.
So now, the ray of hope.
I see these very same kids with the very same symptoms re-immerge into their greatness as readily as anyone else. In fact, their extra added intensity, sensitivity and life-force is an asset to being extra-ordinary. Greatness is their fate when coaxed into manifestation through approaches to parenting, teaching and treatment that match the child’s level of intensity. Then they can flourish. The important piece of the equation is that everyone is already trying as hard as they can with commonly accepted approaches that share in common mostly one version of normal/traditional treatment. The issue is that these paradigm-sharing approaches fall apart in the face of challenges.
Whether it’s the Nurtured Heart Approach, or any other method that’s truly up to the task, we need these effective strategies and ways of thinking to be more widespread so we can lessen the pitfalls of the medical model’s limited prospective which has no idea of how to turn intense into immensely great.
In all fairness, there are now many integrative pediatricians and family practitioners and psychiatrists who are not only slow to start the ball of labeling and medication, but who have real treatments based on real emotional nutrition and real sacred and loving advise related to body, mind and soul.
The work of Dr. Sandy Newmark, author of ADHD Without Drugs and the work of Dr. Scott Shannon, author of Please Don’t Label my Child, both associated with Dr. Andrew Weil and his inspired work in Integrative Medicine, come to mind first and foremost among many such doctors who are moving into this realm despite the dominant pathology first premises of traditional medical training. Other daring and great physicians such as Peter Breggin, MD and Bose Ravenel, MD – and many more proving the point that these children can be shifted to robust health. There are so many doctors now who take symptoms as an indication that the first line of recommendation and treatment is to introduce the family to approaches that change the course of how the child is viewed, interacted with, and appreciated and lead the family to see the great impact they can quickly have.
Once a family sees such an impact they then so often have the knowledge, wisdom and courage to approach the teachers and school and share what they now knows helps a child to flourish at school as well as at home. I now know many parents who have inspired changes in school cultures that are so significant that some hardly ever now experience the need to refer children for the evaluations that so often lead to diagnosis and medications. The proactive track is so much better and there’s so much more flourishing at the level of the family, the school and the community.
Bonus: when families enjoy the impact of helping their child to flourish the rate of marriages falling apart drops dramatically. It brings them together.
As it is now, 7 out of 8 marriages that involve intense children fail if they don’t find ways to turn that child around. Medication just bides time in the equation. It’s the same with teacher attrition: when educators find answers, they no longer feel like quitting the field. But as things are now they are quitting in droves: one out of every two new teachers leaves the field in the first three years.
We cannot afford this pattern of quitting, yet paradoxically, quitting is the answer. I suggest that we quit methodologies that no longer serve children. And find the courage to take up new tools that effect real change.
The classic definition of insanity is to continue to do the same thing, expecting different results.
So, you’re right. It’s time to “quit”!
And it’s time to begin to bring some SANITY to mental health care, especially as that care applies to kids!
Duane
Report comment
Exactly Duane – Love your clarity and excitement.
Howard
Report comment
Wow! What a great description of the exact patient I see, after they have reached their late teens and early adulthood and have had problems with drugs and alcohol (essentially disproving the theory often held by many psychiatrists that if children with ADHD are “treated” with medications, then they won’t get involved in substance abuse). I certainly hope at least some of those participants in the Mississippi conference heard you. Thank you Howard for this piece and the work that you do.
Libby
Report comment
Thank you so much Libby _ applaud your work as well and I am honored that this hit home for you.
Report comment
This reminds me of something that happened several times to me as a kid. I’d get off the drugs, I’d start doing better, my parents would tell them that I’m doing so much better. Then they’d take me away and put me in the hospital for a week to see and then tell my parents that I’m not better at all and that it would be child abuse to not give me the drugs. After all, what child is going to be doing fine in that sort of environment anyway? I remember the time it happened when I was 13, the fact that I was crying and had to be “restrained” on the way in was used as evidence right then and there that I needed to be there. “I don’t belong here, I was doing so much better!” Oh yeah, then why are you crying and throwing a fit and embarrassing yourself? I can just imagine that somewhere out there is a family that moved mountains to engineer an environment and go through training exercises and everything imaginable to help an autistic child only to have the state take them away, aggravate their condition immensely, refuse to believe in the importance of environment or relationships and then blame the deterioration on the brain. I don’t doubt that it happens every single day in the U.S. because psychiatry no longer believes in anything but brain diseases never even proven to exist.
Report comment
Your story give me shivers and I will use the energy to be ever more determined to do all I can do in giving treatment professionals alternative prospectives and tools. Thank you for this inspiration~!
Report comment
Outstanding story. And it perfectly reflects my experience working in child/adolescent public mental health. The only difference is, in my case, I was the one being asked to give the drug. If I failed to provide it (or if– heaven forbid!– I refused to give a diagnosis), I was looked upon as a poor psychiatrist, a stubborn clinician, a perfectionist who couldn’t see the obvious– that Johnny is “ADHD” or “bipolar” or whatever– unless I ordered a million-dollar battery of tests (which I never did, mind you).
If, on the other hand, I wrote a prescription, it was like a miracle. It seemed almost as if everyone else involved in the case (parents, siblings, therapists, teachers) breathed a sigh of relief that we FINALLY have some way to “fix” Johnny. But as you write, medications rarely (if ever) “fix” anything, and I saw lots of Johnny’s who lived for years sadly broken and, almost by definition, unable to reach their true potential.
Regarding “quitting,” not a day goes by when I think about quitting psychiatry. It may indeed be the answer for me. But I’m trying my hardest to find answers, and to change what I can. It’s difficult, demoralizing, unfair, and ever so easy to give up hope. Thanks to alternative views like yours, there can be a future for me.
Report comment
Hi Steve – I am deeply moved by your response and I cannot imagine the daily pangs of dread in encountering this situation over and over. I do fortunately now know a few chid psychiatrists and other docs who found that they could ‘wedge in’ a solution by having a referral person on the heals of an evaluation and a ‘deferred diagnosis.” I know this isn’t an option in some organizations where the pressures are enormous but for those who can they simply say “your child does indeed have many of the symptoms of….but I am hopeful about an approach that has had enormous impact and I am recommending that you work with this person for 6 weeks and come back then to let me know how things are progressing.” I have seen this to work like a charm and then there is still the requisite billable hours your agency might need but an expanded ability to live within your integrity and passion. I admire both in you – applause!
Howard
Report comment
I’m a child psychiatrist in Australia. The Pediatric Bipolar epidemic never really gained more than a toe-hold here. Neither did it in Europe. Universal health coverage that allows full range of biopsychosocial treatments on basis of need not diagnosis is one important factor. There are other factors which if I may put a few links here, I expand upon:
http://www.tandfonline.com/doi/pdf/10.1080/15299732.2011.597826
http://www.clinicalpsychiatrynews.com/views/commentaries/single-article/diagnostic-labels-and-kids-a-call-for-context/5783d363fe.html
http://www.abc.net.au/unleashed/26924.html
Report comment