A few weeks ago, we listened to a radio broadcast produced by ABC Radio National in Australia whose topic was the diagnosis of bipolar disorder in young children. The segment begins with a send-up of the supposed American penchant for seeing psychiatric disorders everywhere. The listener hears a narrator intone: “You’ve heard about SARS, AIDS and bird flu. Now researchers from Australia claim we’re about to be hit by a new epidemic: Motivational Deficiency Disorder.” One of the symptoms of MDD is preferring to go to the beach instead of to work; at the most severe end of the spectrum, people are unmotivated to breathe and just die.
Jane Shields, the host of the show explains: “You might have guessed by now that this is not actually a genuine disease. It’s a fictitious disorder created to show how easily normal behavior can be turned into illness.
“She then segues into the subject of the piece: the overdiagnosis of bipolar disorder in American children. According to a few of the doctors interviewed, this overdiagnosis is being driven by three factors: pharmaceutical companies looking to expand into the child psychiatric market, parents who don’t wish to deal with their own failures, and doctors who can’t be reimbursed by insurance companies if they don’t assign very severe psychiatric diagnoses on claim forms.
We listened with dismay as Dr. Jennifer Harris, a psychiatrist who has worked in the inpatient child units of the Cambridge Health Alliance in Boston say: “I’ve probably seen only two, maybe three pre-pubescent kids who I was convinced had bipolar disorder…” The interviewer reported that “Dr. Harris has never herself diagnosed a pre-teenage child with bipolar disorder, and says it is very rare in children.”
Dr. Harris’ next comment:
There’s been a move away from (Freudian analysis) towards a more biological model…and by “biological,” I think people often mean “genetic.” I think that focus on something more biological plays into parents’ own desire to feel like they’re not at fault, or it doesn’t have to do with child rearing or something like that, or they don’t want to feel like their child has a mental health condition; it’s better to think that there’s something biologically wrong.
Dr. Harris feels strongly that the insurance companies are instigating the push to make the diagnosis of bipolar disorder in children:
One of the things that happened is that people were no longer getting reimbursed from having more benign diagnoses…I don’t get reimbursed for that (more benign diagnoses). On the other hand, if I put in a diagnosis of bipolar disorder, NOS, I get reimbursed. So bipolar disorder’s got to be a more “serious” diagnosis and is much more easily reimbursed. I think this is part of what drives this…
By the time the show concludes, the listener has a mental image of parents bounding joyfully into the offices of child psychiatrists, only to be met by equally enthusiastic doctors holding prescription pads in one hand and a sheaf of insurance claims in the other. After a few preliminary questions, the doctors get down to business: confer the diagnosis and hand out a fan of prescriptions with little thought to the risks of such medications.
This discussion is absolutely insulting to doctors and the parents who must deal with very sick children. To accuse all physicians who have taken a Hippocratic oath to “first do no harm” of being lead around by the nose by pharmaceutical and insurance companies is irresponsible journalism.
Parents are not being lead around by the noses either. Bipolar disorder is the most genetic of all psychiatric illnesses, yet missing from the recent spate of articles and television segments is the fact that parents are likely to recognize the ominous symptoms early on because they experienced the feelings themselves as children, or because they lived with it long ago as a close family member manifested similar behaviors. They know the agony their child is experiencing, and while no one could help them years before, they are desperate to find help for their child today.
Mothers and fathers tell us stories of their children jumping out of second-floor windows, or out of cars, or running into streets. In the middle of almost-seizure like rages, they tear doors from hinges, break everything in the house, and pick up knives and try to kill themselves. Their behavior is dark and could not be mistaken for a typical high-spirited kid with attention deficit hyperactivity disorder (ADHD).
Parents have said to us over and over: “Do you have any idea what it’s like to hear our seven-year-old say, ‘I’m stupid, everyone hates me and I may as well be dead.’
“It is not uncommon for these children to hallucinate and experience delusions. Hardly the stuff of skits.
While certainly there has been a rapid increase in the diagnosis of the disorder, only fifteen years ago it was thought to be extremely rare and was therefore, rarely diagnosed. How much of this increase in the diagnosis is due to increased awareness and better diagnostic practice, or by environmental factors causing a rise in the incidence in the population is unclear.
What is clear is that this is not a benign illness–it warps children and it has a mortality rate greater than childhood leukemia. The lives of many of our youth are at stake, and the illness and its incidence requires research, not ridicule.
Contrary to what certain media pundits are putting across, many child psychiatrists in America do not believe children can suffer with the disorder, or think it is rare, or are not comfortable treating it. Since psychiatrists must diagnose using the psychiatric manual (the DSM-IV), and its criteria for children are derived from the adult form of the disorder (and a child’s symptoms are very different), the demand that a child meet these more adult-like criteria make it difficult to make the diagnosis in children.
Compounding the problem is the fact that the illness rarely rides alone, but is often accompanied by symptoms that seem to represent attention deficit hyperactivity disorder, obsessional compulsive disorder, anxiety disorder to name the most common (see our November, 2006 newsletter, Why Is It So Difficult to Diagnose Bipolar Disorder in Children? at www.bipolarchild.com).
Until there are more specific criteria and genetic markers for the illness, the diagnosis will continue to be guided by the symptoms and behaviors of the children, the family history, and the psychiatrist’s experience and level of expertise.
This is a wily illness. Parents talk about a child and his or her behaviors but this extreme, out-of-control behavior is rarely seen during an office visit, as the child works very hard to put on a good face to the outside world. He or she may be well-behaved and the doctor will see the true, sweet nature of the child, but once in the safe haven of the home, the need to vent often finds the child exploding and abusing the family–especially the mother. Unless a doctor recognizes the way this illness often presents in children, the doctor will find it hard to medicate a child who is not acting out publicly. (Sadly, this stark contrast between the office-and-at-home behavior leaves the parents feeling that the doctor may think they are exaggerating, or fear that he or she might be skeptical of their reports and think that they are somehow promoting the behaviors.)
No doctor likes to medicate a child. Child psychiatrists are acutely aware that the central nervous system is still developing and administering some of these medications in younger children can provoke paradoxical reactions (the opposite effect of what they’re supposed to do occurs). They know that many of the medications are not approved for children with bipolar disorder (although many of the anticonvulsants are approved for seizure disorders in the very young, so there is a literature about these drugs), and they know the possible short-and-long-term risks.
However, those physicians with experience have seen lives restored to more normal pacing once the right combination of medications can be found, and they’ve had the experience of hearing parents say: “I’ve got my real child back. He was lost under all of this darkness.”
As with all things in medicine, it often comes down to risk/benefit.
The Decision to Medicate
The journey that ends on the pharmacy line may begin with years of frightening incidents at home, expulsions from daycare centers, phone calls from concerned nursery school teachers, and long searches for a doctor who can tell the parents what is wrong and how best to treat it. Because it is a devastating journey for parents, with every step posing questions of risk and hope and heartbreak, we want to outline a few of those steps that many of the parents will face. The road to the pharmacy lines begin as parents are forced to:
- Look at a very young and much-loved child with a nagging fear that something is seriously wrong.
- Feel the external world bearing down on them, advising them to take multiple parenting classes or to tune into Nanny 911. Feel infantilized and ashamed as people offer up criticism and advice.
- Attend those parenting classes and learn wise things such as “discipline is derived from the word disciple,” but know that a simple parental “no” triggers an atomic rage where the child can become almost feral. All the consistency and star charts in the world don’t work with such an unstable child.
A mother from Colorado told us:
I kept thinking there must be something wrong with us. Nothing made sense. I read all the books. I listened to my girlfriends with infants. I couldn’t believe our daughter was so different. She was so smart and precocious. She read at age two, and raged with the word “NO” at about the same time. Our toddler had an explanation of why she should be able to do what she wanted to do and now!!! And it didn’t matter if it were 2 or 4 in the morning.
Many parents, like the mother above, will attempt to understand these temperaments and behaviors by telling themselves: “She’s extremely bright”; “He’s so sensitive and artistic”; “These traits are going to make him a very successful adult someday, if only we can survive his childhood”; “It’s just a phase–he’ll grow out of it.”
Sooner or later, though, if the symptoms become more severe and disruptive, the parents are going to look for professional advice (or they are going to be directed toward professional advice by the pre-school teacher or the school psychologist).
The decision to get a consultation with a child psychiatrist is typically the visit of last resort, and comes only after years of trying to assert authority in a household, and watching a child spin out of control and be unable to function as children should.
Once the parents accept that they need help, they come face-to-face with serious roadblocks as they come to find that there are only 4100 or so child psychiatrists in this country (just two in Wyoming; 20 in Mississippi; and 31 in Iowa, to name a few).
It’s not atypical for parents to struggle for months to find a doctor who believes in the illness and knows how to treat it, but then there are often waiting lists of eight months. We know families who travel through five states to make an office visit.
If the child is incorrectly diagnosed with ADHD, OCD, ODD, PDD, anxiety disorder, or simple depression, he or she might be placed on a stimulant or an antidepressant which could worsen the behaviors significantly.
Once parents do agree to a trial with mood stabilizers or atypical antipsychotics, they read the package inserts of these drugs with alarm as they read serious black box warnings and side effects that would make anyone waffle about the decision. They then watch apprehensively for any signs of serious trouble such as lithium toxicity, tardive dyskinesia, Stevens-Johnson syndrome, new-onset type-II diabetes, or pancreatitis. Side effects such as weight gain are extremely disturbing to the child as well as to the parents, and these feelings should not be underestimated.
As parents become all too familiar faces at the pharmacy, not only do they experience shock at the cost of each prescription (despite co-pays), but fear that someone in their town will overhear the pharmacist talk through the medications, thus revealing their children’s diagnoses to anyone nearby.
If anyone knows some parents who would sign up for all of this just to “get themselves off the hook” and not be responsible for their “bad parenting,” we’d like to meet them. In most cases, medications are the choice of last resort.
Two mothers wrote and seemed to sum up the experiences of the many of hundreds of parents with whom we’ve spoken to, or corresponded with, since the publication of our book, and they are both worth quoting at length.In response to our inquiry about her feelings about medications, one mother emailed:
How do we feel about his meds? Well I can definitely say that Zachary hates them, with a passion. The atypical antipsychotic has made him gain weight and he hates the stigma of being on the meds. But at the same time he understands fully that the meds are the only thing keeping him stable and out of the hospital.
They have become the necessary evil. The road to finding him meds with lower side effects and the ability to keep him stable has been long and hard. I am filled with such heartbreak and guilt to be putting this child through this but I understand that this is what enables him to function in a day. We did not choose this course lightly. Without the meds he would be in a constant state of mania or depression and the terror of his being in those states to him and us is excruciating.
The last few months of having him stable and being able to see our real boy–his personality, his humor, his love and excitement of the world–is a gift.
The second mother detailed the journey she and her husband had traveled to the pharmacy. She said:
By the time Adam was five years old, we had already been through three years of out-of-body tantrums, wildly erratic behavior, and sleepless nights. The doctor said our son’s case was very complicated and handed us a list of recommended child psychiatrists with his best wishes.
We resisted medication against medical advice, because our son was so young and so unformed. How could we give such serious medicine to such a little boy? We thought maybe if we just stuck it out, he would outgrow it. We undertook psychotherapy, with all the accompanying behavior modification strategies, implemented both at home and at school but little of it seemed to make a difference for long, if at all.
Eventually this couple did decide to initiate the trial of drugs their doctor prescribed, but none of them were very successful either. At one point the child was on an antidepressant and he kept screaming that there were snakes crawling all over his bed and slithering down to the floor of his room. (He was weaned as quickly as was safe from the drug.)
Finally, at age 12, a different doctor told us that the medication he was on could be making his symptoms worse, and prescribed a mood stabilizer.
This was the turning point in the life of our son. On the new medication, he came into his own. The extreme mood swings, the anger, irritability and out of control behavior went away. For the first time we saw his true nature and his abilities, instead of just his DISabilities. He had friends for the first time. Lots of them. He went from being known as “the troublemaker” to being known as the kind, compassionate one, the boy who was eager to please, the boy who despite his struggles with academics, tried his best and made progress in each subsequent grade.
Unfortunately the worry about medications doesn’t end by looking at a well-functioning child. The irony of this illness is that the better the child does, the more tortured the mothers and fathers are for having made the decision to administer medications in the first place.Adam’s mother commented about this second-guessing that parents do:
Now our son is 18. He’d been so good for so long we could hardly remember those dark, dark days. We began to wonder what would happen if we gave him less medicine. After all, he had been growing and maturing and maybe he’d experienced a neurological growth that would make him less dependent on drugs. He was so good that I started to question my judgment–why haven’t we tried to wean him off some of this stuff? Have I been medicating my son unnecessarily all these years? Soon that question was answered.
Our son went to a pre-college program this summer and was supposed to be personally responsible for taking his medications. On the phone he was in a happy mood, spoke enthusiastically about his experience, and received glowing reports from the staff. Then, suddenly, out of the blue, he started to report feeling unhappy. He wasn’t getting along with friends, he was unable to sleep or wake up on time.
We thought he was just homesick, but then his supervisor called and said something was terribly wrong. He was a different person. It was as if he had fallen off a cliff. We brought him home and took him to the doctor. He had a blood test to check his medication level. Sure enough, it was way below the therapeutic range. Further investigation revealed that he had failed to take his medicine on a regular basis.
That night, at home, he had an emotional breakdown unlike any we’d seen since the dark days. Our younger son woke us frightened in the middle of the night and said: “Quick, come fast, there’s something very wrong with Adam.” We ran in and saw him, lying face down almost off the bed, sobbing uncontrollably and moaning that he didn’t know what was going to happen to him. I will never forget the shock of looking down on the floor and seeing tears pooling on the floor (that is an image I will carry all of my days).
It has been three weeks since that incident and he is once again at therapeutic levels. He is back to normal, happily engaged in his usual social life, helping the director of his school get the rooms ready for the opening of classes in a few days.
It was a terrible, emotionally-expensive way to learn a lesson. But now we know for sure. Our son needs medication to have a life. So next time someone insinuates “How COULD you?” and there will always be those who do, I can answer to myself, or right out loud, “How could I NOT?”
Quite a journey. A parent is forced to help their child, but they can never rest easily or know whether the course they’ve taken is the right one. And for everything that can be gained with proper medications, it comes at a high price for the children and the parents who worry about long-term side effects, weight gain, stigma, criticism, and the often difficult-to-dislodge lowering of the child’s self-esteem.
Doctors and parents need support, not irreverent sketches and wholesale suspicion. This illness needs tremendous research, not reveries about whether or not it exists in childhood.
Toward the end of To Kill a Mocking Bird, six-year-old Jean Louise (Scout) is sitting with the Reverend Sykes in the gallery of the courtroom when her lawyer father, Atticus Finch, walks toward the exit. Reverend Sykes, so profoundly moved by what Atticus has tried to do for his people, in that time and place, tries to get Scout’s attention. He calls to her: “Jean Louise? Jean Louise. Stand up. Your father’s passing.”
We paraphrase those words, and with equally deep respect when we say: “Stand up. The parents of a child with bipolar disorder are passing.” And their journey has been more difficult than the media and the outside world will ever know.
We send you our best,
Janice Papolos and Demitri Papolos, M.D.
ABC Radio National’s “Background Briefing With Jane Shields”
Lee, Harper. To Kill a Mocking Bird. New York: Harper & Row, 1961.
Papolos, J and D. “In Honor of Mothers and Fathers.” The Bipolar Child Newsletter, May, 2006, Vol. 24.
Papolos, J and D. “Why Is It So Difficult to Diagnose This Disorder?” The Bipolar Child Newsletter, May, 2007, Vol. 23.
Papolos, Demitri, and Janice Papolos. The Bipolar Child. Third Edition. New York: Broadway Books, 2006. Additional News:
The new DVD and 2 CD-set of “24: A Day in the Life of Bipolar Children and Their Families” has gone back “to press” a second time since June.
This DVD validates a parent’s experience as well as explains why these children rage with the mother (but rarely in the outside world), why they can’t get up in the morning, why they are so disorganized and have such trouble in school, plus all their difficulties–day and night. There is a wealth of ideas to ease their way.
Purchase orders from school systems are coming in from all over the country and a mother in New Jersey just emailed:
“Janice, you should know that so many teachers, counselors, and tutors in Ryan’s school have watched your video, and it’s been an incredible aid. His group of teachers now have some insight that makes their relationship with him so much more productive.