Tips For Parenting A Child With Bipolar Disorder

MICHEL MARTIN, host:

I'm Michel Martin and this is Tell Me More from NPR News. It's time for our weekly Behind Closed Doors segment where we try to talk about sensitive, sometimes painful topics, things we sometimes feel we have to keep hidden.

All kids act up. They throw things, they get mad over things that seem inconsequential to adults or become sad for reasons that may also seem silly to grownups. But what if the behavior takes a dangerous turn, lasts longer than with most kids? What if the issue is a chemical imbalance, the kind normally associated with adults that can only be treated with a lifetime of medication and therapy? How would you know? And what would you do?

Parents and medical professionals in the U.S. are increasingly grappling with this question. And it is a question because some wonder whether we're too quick to diagnose mental illness and prescribe pills in this fast-paced, underinsured and overworked society. Others wonder whether we're reacting too slowly to rule distress in children.

Joining us to talk about this is Ellen Leibenluft, who runs the Pediatric Bipolar Research Program at the National Institute of Mental Health. Also with us is Dr. Carl Bell. He's a clinical professor of psychiatry and public health at the University of Illinois at Chicago, and Cassandra Joubert, who wrote about her experiences in the book, "Losing Control: Loving A Black Child With Bipolar Disorder." Welcome to all of you. Thank you so much for speaking with us.

Dr. ELLEN LEIBENLUFT (Director, Pediatric Bipolar Research Program, National Institute of Mental Health): Thank you.

Dr. CARL BELL (Psychiatry and Public Health, University of Illinois, Chicago): Thank you.

Ms. CASSANDRA JOUBERT (Author, "Losing Control: Loving A Black Child With Bipolar Disorder"): Thank you.

MARTIN: Dr. Leibenluft, recently the New York Times wrote about this debate over kids and bipolar disorder, and they described several families struggling with this diagnosis. On the one hand the behavior sounded, you know, frightening, very frightening. Kids would threaten their parents, their siblings. They would get very irritable over very small things and it seemed to start very early. On the other hand, some of it just seemed like extreme kid behavior, and there was no way to know whether perhaps the kids would grow out of it, whether parenting was implicated in this. Dr. Leibenluft, how do you begin to even think about whether bipolar disorder should be part of the conversation with a child?

Dr. LEIBENLUFT: Well, one of the things that we do know is that bipolar disorder - even very classic bipolar disorder where you have periods of time when you're very manic, you know, very happy, don't need to sleep, very energetic, talk very fast, move around a lot, and then other periods of time when you're very depressed, don't want to get out of bed, extremely sad, tearful - that kind of classic bipolar disorder can occur in children and can look reasonably similar to what we see in adults, and that's been something that has just really been recognized over the last, say, for 10 years or so, to any great extent.

It's still probably pretty unusual but definitely we can see children who have bipolar disorder that looks just like what you see in teens and adults. Where the trickier issue comes in it that there's now much more recognition that there's another probably larger group of children that really struggle with this very severe irritability that you were just referring to. Flying off the handle a lot, having a great deal of difficulty regulating their mood on a day-to-day basis. The kind of behavior that we're talking about here can be really quite extreme, and it's very impairing to both the children and their families. It's not just at home. It's also at school, with friends. And I think that what the piece in the New York Times did a good job of was really communicating how this is quite clearly outside the bounds of what one would consider to be usual, kind of childhood behavior.

MARTIN: Yes, even sort of behavior that could be implicated by parenting practice.

Dr. LEIBENLUFT: Clearly it's beyond those - that realm. And also, parents try - parents try all kinds of things, and I think this was also very well portrayed in the article. These parents go for help and they receive help and they follow all the instructions that they have been given. And they work really hard to try to set limits appropriately to help the child appreciate that things don't always go your way, but that just doesn't work.

MARTIN: Doesn't work. Cassandra, your daughter, Maya(ph), was diagnosed with bipolar disorder at the age of 15. But you said she displayed symptoms when she was a toddler. Can you talk about that?

Ms. JOUBERT: Sure. I noticed that she was very easily agitated over just most minor, sort of everyday occurrences, which would set her off. And she had these extended crying spells. And I'd have to say, even before toddlerhood, as an infant, she laughed a lot, she didn't like to be touched, she was easily over-stimulated, and that just sort of grew and got worse with time. By the time she got to school and was around other kids, she just absolutely could not handle, you know, a classroom of 40 kids and would end up getting into all sorts of little tits and tats and then later fight, actually, as she got older. And it just sort of never went away.

MARTIN: What did you think was wrong or what were you being told was wrong from the time - if this started when she was two and she was only diagnosed when she was 15, you must have had 13 years' worth of medical visits and, you know, tearing your hair out trying to figure out what was wrong. What were you being told all this time?

Ms. JOUBERT: Well, the first conversation about her behavior was in first grade, and I was simply told that she was - by her teacher that she was very volatile and that they wanted to have her evaluated. And they brought a psychologist into the classroom and that psychologist said, well, maybe, you know, she has ADHD. She didn't quite meet all of the criteria but that was the initial diagnosis, and they started her on Ritalin when she was about six. And then that actually helped her quite a bit because I guess she actually has both bipolar and ADHD, but when she got to puberty, everything just went haywire and nothing worked anymore, and at that point they felt that she was just depressed, that she was so angry all the time and punching her classmates so they started her on Zoloft, an anti-depressant, which just - from there things started to spiral because, you know, she really did not have just the depression, she was truly bipolar.

MARTIN: So it was a very complex situation. I want to come back to you in just a minute, Cassandra, because I want to hear how things are going now. But Dr. Bell, what's your take on all this? I mean, on the one hand, I know that you are very concerned about the fact that - particularly in some groups of people - behavior, it could be managed with, you know, better health care, better diet, is sometimes sort of criminalized and sort of put on this extreme end of dysfunctional behavior. On the other hand, it does seem as though there's a very real issue here. What is your take on this? And particularly given that there's been a huge rise in the reported number of children being treated for bipolar disorder.

Dr. BELL: Well you know, it's a difficult issue. Ryan Kessler's work out at Harvard, Dr. Satcher, Surgeon General's work when he did his Children's Mental Health Conference, clearly indicates that we are now in a position as a society to identify these psychiatric disorders much earlier in children. Because if you talk to adults, they will tell you that their stuff started early on in childhood, and it's clear also that if you intervene early, you have better long-term outcomes.

The problem is that, you know, psychiatric diagnosis is not yet a science, it's still an art. And the problem is, you know, you get all sorts of other things, posttraumatic stress disorder, trauma, attention deficit disorder, bipolar disorder, all of these things can look like bipolar disorder in children. And so it's a very controversial, messy thing.

The other problem is you got a whole group of anti-psychiatrists out there that are running around telling people that vaccines are causing autism, that there's a plot by psychiatry to put children on medication so they can line their pockets with pharmaceutical company money. And it's just - it's unfortunate, but hopefully what's going to correct all of this is that the science is going to become so tight that it's going to become unethical not to identify these children and treat them early.

MARTIN: If you're just joining us, I'm Michel Martin and this is Tell Me More from NPR News. I'm speaking to doctors Ellen Leibenluft, Dr. Carl Bell and to Cassandra Jaubert, who is the parent of a child with bipolar disorder about recognizing and treating bipolar disorder in children.

Cassandra, what about you? When you were first presented with this diagnosis, how did it make you feel? Was it frightening or was it in some way a relief to have a name for what was troubling your child?

Ms. JOUBERT: It was definitely a relief at that point because she was just two weeks shy of turning 16 years old and I had just been through the wringer over the years, and she had to be hospitalized in order to be diagnosed and she was hospitalized for a week. And that was probably the first time I had slept through the night for, you know, 16 years. So it was definitely a relief. I also so really grieved that my child had suffered for so long and it seemed that she was probably going to suffer a lot more over the rest of her life. So I personally went through a very deep sense of loss and grief over the daughter that was suffering so much.

MARTIN: Dr. Leibenluft, whenever there is a sort of a condition that becomes diagnosed more frequently than it has been in the past, as it is, say, with allergies, for example. People wonder, is there more of this than there was before or did we just not recognize that it was there? What is your take on that?

Dr. LEIBENLUFT: The first thing is I think we are really beginning to recognize that in fact this can occur in children, not just in teens and adults. But in addition, I think what's happened here is that this whole issue has shone a light on this group of children that have very severe irritability, and whether or not you consider that bipolar disorder - they don't fit the criteria, the diagnostic criteria, exactly - but they clearly do have a very, very severe mood problem. And one of the things that this has brought to light is that there may be this group of children that are not very well served by our current diagnostic system. They don't really have a good diagnosis that fits them, and it's just like Dr. Bell was saying, that it's still a bit of an art rather than a science but we're always working to bring the science to bear on it.

And so these children clearly have a great deal of difficulty. They clearly need some assistance. We need to do a better job of understanding what's making it so difficult for them to regulate their mood. And in fact, we're devoting a great deal of research to it right now.

MARTIN: Dr. Bell, we've talked a lot about the whole question of stigma and its association with mental illness. Do you think there's a stigma attached to bipolar disorder that perhaps makes it even harder? Is there a stigma attached to certain groups that makes it harder to achieve these diagnoses?

Dr. BELL: Well, there's a stigma for all psychiatric disorders, and when we read Dr. Satcher's mental health report the hope was that once the science got clear as to the organic and physical biochemical causes for these disorders, the stigma would go away. Unfortunately, what we found in the focus groups was that it's not the lack of understanding that these things are biologic in nature. It's the fact that people with psychiatric disorders are felt to be unpredictable by people and that makes people anxious and nervous.

For African-Americans, of course, it's even worse because there's probably nothing worse than being poor, drug addicted, mentally ill and African-American. And so as a result, there's a hesitancy in ethnic groups. Asians, for example, frequently suffer from psychiatric disorders and they wait because of the shame. And so when they finally come in, a lot of times they're even more disturbed.

So it's preventing people from stepping forward, and a lot of times if you try to put a child on medication for a psychiatric disorder, even if you're an African-American physician, you're accused of trying to harm the child or you're doing Tuskegee experiments, and so as a result, for example, with attention deficit disorder, there are three times as many European-American kids on medication for that disorder than African-American kids. But to listen to the media and the hype out in the African-American community, you'd think they would be reversed.

MARTIN: Interesting. Do you have some words of wisdom for people who are concerned that their child's behavior is just not fitting the sort of normal development patterns that just isn't along sort of the appropriate continuum? And what - any guidance?

Dr. BELL: Sure.

MARTIN: Any words of wisdom?

Dr. BELL: Yeah. Go in, get an evaluation, ask questions, make sure the person doing the evaluation can explain their diagnosis if they have one. The reality is that a lot of the medications that we prescribe for these disorders, if tried, might show tremendous improvement. And it's probably not going to permanently damage the child to be tried on the medication for a month or two, and so it's worth it because it can prevent tremendous long-range suffering.

MARTIN: Dr. Leibenluft, I'd love to ask you, what are your - do you have any words of wisdom for someone who might be struggling with this and is listening to our conversation? And also would love to hear from you about what direction is your research taking? What are some of the things that we don't know that we want to know?

Dr. LEIBENLUFT: Well, we are beginning to learn and want to know a tremendous amount more about what's happening in the brains of these children that makes it difficult for them to deal with the emotions that are going on within them and the stresses that are going on outside them. And we know that there's a big interaction between what's happening in the brain and what's happening in the world around them, so we want to be able to address the treatment of these children from both. We want to address it not only with medication, and as Dr. Bell said, often the medications can be extremely helpful and they should only be continued if they're helping, right?

Dr. BELL: Right. Right.

Dr. LEIBENLUFT: So you should be able to see some help, and if there isn't any help coming from it you should stop. And then there are also other things that can be done outside of or in addition to medication. For example, is the school providing the child with the correct kind of support for this child? Many of these children have a great deal of difficulty with the language. Part of the trouble they have is they can't express their emotions well. So getting some assistance with that, giving parents support that they need because they can be in extremely stressful kinds of situations. So we're beginning to learn how all these things fit together, both to produce the kind of symptoms and then, of course, to be able to reverse them.

MARTIN: And Cassandra, finally to you, your daughter is now 21?

Ms. JOUBERT: That's correct.

MARTIN: How is she doing? And do you have some advice for another parent who may be struggling the way you were so many years ago in the dark?

Ms. JOUBERT: Well, she's doing better than certainly four or five years ago but it is a chronic illness and there's always some turn - medication adjustments that need to be made, stressors in life that create all sorts of crises for her that would not be a crisis for someone else. And just needing someone there all the time to help her remember to take her medication, and she will need help for a long time, if not forever.

And I just think that if parents are concerned, I think a red flag is maybe problems in school, particularly with friends because these kids are really ostracized and traumatized, I think, more than other kids because their behavior is out of bounds. So that's a red flag, and parents should seek help as quickly as they can.

MARTIN: Cassandra Joubert is director of the Central California Children's Institute at California State University in Fresno. She joined us by phone. Dr. Carl Bell is a co-principal investigator of The Chicago African-American Youth Health Behavior Project. He was kind enough to join us at the studios of member station WBEZ in Chicago. And Dr. Ellen Leibenluft runs the Pediatric Bipolar Research Program at the National Institute of Mental Health. She was kind enough to join us at our studio here in Washington.

To know more about bipolar disorder, you can find a link to the National Institute of Mental Health on our Web site at npr.org/tellmemore. And I thank you all so much for speaking with us.

Dr. LEIBENLUFT: Thank you.

Ms. JOUBERT: Thank you.

Dr. BELL: You're welcome.

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MARTIN: And that's our program for today. I'm Michel Martin and this is Tell Me More from NPR News. Let's talk more tomorrow.

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