Treatment involves heartbreak and frustration - and hope.
Once a correct diagnosis is achieved, medication tends to be a no-brainer, though there will always be people like Kathy, who posted: "There is no biological data which supports the hypothesis of biological nature of mood disorders in children. None!" And similarly, from Anonymous, "Stop drugging them and start treating them."
In response, Karen is equally blunt, writing:
"If I did not medicate my child he would be dead - his bipolar illness is so severe and so obvious that I challenge anyone who witnesses his symptoms before a hospitalization is required to tell me that bipolar in children does not exist and does not require medication by a psychiatrist."
At the 2004 JBRF Conference, Demitri Papolos MD, co-author of "The Bipolar Child," advised that medications treatment should be based on an informed collaborative partnership between the parent and the psychiatrist. He also thinks that every child should have a neuropsychological assessment by a competent pediatric neuropsychologist.
But treatment can be problematic. At 2001 Fourth International Conference on Bipolar Disorder, Boris Birmaher MD of the University of Pittsburgh presented a multi-center study which treated 73 bipolar I adolescents and followed them for 76 weeks. Despite the fact that 70 to 80 percent of them recovered, approximately 80 percent of each subgroup (mixed, manic, depressed) experienced a recurrence of the illness. Seventy percent of patients required hospitalizations. Forty percent of the time, patients required at least three medications. Furthermore:
"Most patients continued to have fair to poor social adjustment." As opposed to those who develop the illness later, most of these kids lacked the necessary cognitive and social skills to get along, including poor academic performance, interpersonal and family difficulties, suicide risk, and substance use. Dr Birmaher cited studies that childhood bipolar is worse than childhood depression or severe conduct disorder, and that even kids with subthreshold symptoms fare very poorly.
Not surprisingly, "overall, families were dissatisfied with treatment."
Side effects are significant. Lithium and Depakote can result in hair loss, weight gain, and acne - huge issues for kids. Many Depakote users also had polycystic ovary syndrome to contend with. Kids in one Risperdal study gained 4.4 pounds, and in the Zyprexa study 12 pounds in just 28 days.
There is no long-term data for bipolar meds in kids.
Most kids need combination treatment, Kiki Chang MD of Stanford related at a different forum at the same APA meeting. In addition to one or more mood stabilizers or antipsychotics, 34 percent need stimulants and six percent require an antidepressant. Antidepressants, however, pose a high risk for switching kids into mania and thus should be used advisedly.
Polypharmacy, however, runs its own risks. At the 2002 Depression and Related Affective Disorders Conference, Paramijit Joshi MD, Chair of Psychiatry and Behavioral Sciences at the National Children's Medical Center in Washington DC said she gets kids aged four and five on four or five medications. "I’m spending more time taking kids off medications than putting them on, as I don’t know what I’m treating," she related. Thus the critical importance of a thorough diagnostic evaluation. "Taking the family history is so very very critical." She brought up two cases she handled involving young children with very similar symptoms, but in one there was a family history of ADHD and other disorders but not bipolar, while in the second child’s family depression and bipolar were rampant.
Warning: Editorializing Zone:
In Feb 2007, the NY Times ran a story about the tragic death of Rebecca Riley 4, who overdosed on an antipsychotic and a heart med. This set off a sequence of copy-cat journalism that came to the conclusion that "normal" kids were being force-fed "powerful drugs" not FDA-approved for kids for a questionable diagnosis.
First, let's acknowledge that our adult experience bears out that many psychiatrists are heavy-handed with meds. Further, the influence of the pharmaceutical industry is far too strong on psychiatry. Let's also acknowledge that bipolar meds are blunt instruments at best and that kids are prone to be particularly sensitive to their effects. And let's acknowledge that expert psychiatric opinion is not in aggreement on the diagnosis, and that bipolar is very difficult to diagnose in kids.
Having said that:
A final note on this: The same people complaining about treating kids for bipolar are the same people who complain about treating kids for ADHD and depression. Moreover, these are the same people who deny kids are capable of having mental illness. Many also deny mental illness in adults. In the wake of Rebecca Riley, the media uncritically ran with the antipsychiatry party line.The media both sensationalizes and informs. It performs both these tasks very well. In 2007, the media only performed one of them.
Dr Joshi also emphasized parent education and involvement. Kids, she explained, unknown to their parents, may not be taking their meds, and then the doctor raises the dose causing further trouble. Dr Joshi will ask kids why they are not taking their meds. One patient told her he didn’t like the taste. She explained that you may have a situation where the patient is doing quite well and then you have the grandmother come in who says, you don’t need those drugs. Education, she emphasized, is not just a one-time process, it is ongoing. By the same token, "sometimes kids have to fall on their faces and pick themselves up."
The need for parent education is further underscored when a kid comes home from residential treatment, where he or she may have behaved perfectly, and then is exposed to stressors and triggers that parents need to be mindful of.
A helpful psychosocial intervention includes family focused therapy, developed by David Miklowitz PhD of the University of Colorado, Boulder. The therapy emphasizes understanding the illness and its triggers and taking preventive action, and creating a stable family environment that promotes recovery and encourages medication adherence.
In 2003, Dr Miklowitz and his colleagues published a study in the Archives of General Psychiatry that found that 100 bipolar adults on 21 sessions of family focused therapy plus meds showed greater reduction in mood symptoms and better meds adherence than those on treatment as usual plus less intensive crisis intervention. Significantly, the effects lasted well after the course of therapy sessions ended (two years).
Dr Miklowitz tailored his therapy to address the special needs of kids, including learning to understand changes in school functions and recognizing normal adolescence from pathological behavior, working at regulating sleeping, and addressing mood disturbances in other family members. A 2004 study published in the Journal of the American Academy of Child and Adolescent Psychiatry found that 34 bipolar kids (mean age 11) on 12 sessions of combination family focused therapy and cognitive behavioral therapy with their meds significantly reduced their symptoms and improved their functioning, with high levels of treatment adherence.
Parents are encouraged to check out other family therapy programs if family focused therapy is not available in your area.
School performance is an early casualty of childhood bipolar disorder. As if the eruptions of the illness and the meds side effects aren't bad enough, even in well states cognition and attention deficits can sabotage learning. Moreover, bipolar kids frequently lack the social skills to get along with others. Accordingly, educational intervention is a necessity.
The second and third editions of "The Bipolar Child" devotes considerable space to working with your school system in developing an Individualized Educational Plan for your child in a regular school or sending your kid to a special school. The book quotes Barbara Coyne Cutler in "You, Your Child, and Special Education":
"The full implementation of the law depends on parents. Rights are not favors. They are not gifts from administrators or teachers; they are not windfalls ...
"People who withhold services and treatments from your child or who deny you the opportunity to get involved in shaping his or her education are themselves breaking the law. School systems are now obliged to take the rights of children very seriously."
At the 2004 JBRF conference, both Janice and Dr Papolos stressed the critical need for a comprehensive IEP. For instance, if your child does not perform at his or her best till 11 in the morning, it may be advisable to press for a later start or to see if the school can schedule gym or nonacademic classes at this time.
Janice Papolos observed she has been very impressed by the dedication of teachers. In a survey for "The Bipolar Child" book, parents overwhelmingly reported that the schools did everything to help. The whole school’s got to be on board, she stressed. She compared a bipolar kid at school to Kramer in Seinfeld falling into a room. Only at school, teachers and students tend not to be as indulgent as Jerry and Elaine.
These kids need everything broken down, she went on to say. They generally can’t sequence. They need to be taught, for instance, not to barge into a room, to stop and look around first. They need to learn how to cope with their anxiety, which is a huge stressor. Teachers, often in collusion with other teachers, must have on hand a bag of tricks to head off a meltdown.
"It’s up to parents and teachers to keep installing the software," she advised, "but eventually it will stick."
At the 2003 Non-Pharmaceutical Approaches to Mental Disorders conference staged by Safe Harbor, parent Patricia related how her adopted son - we’ll call him Andrew - started to unravel at age eight. "It was the scariest thing to happen to a mother," she recalled. Andrew threw things, flew into rages, and jumped out of a van at 50 miles an hour. Andrew was diagnosed with bipolar I and put on meds, but according to his mother he became a vegetable, sleeping all the time, gaining weight, and not engaging in the outdoor activities he once loved. Whereas Andrew had once tested four to six years above grade level, he was now testing two years below. As Tricia explained: "They felt they had solved my problem. I felt I lost my child."
In desperation, she weaned her child off his meds and started him on a regimen of vitamins and other nutrients. This nearly resulted in Andrew getting kicked out of school, but she stayed the course and was happy to report that her son had just been awarded the most joyful kid in his class.
As a general rule, supplements and diet should complement rather than replace meds therapy. For supplements or diet, it is advisable to consult a nutritionist and work with an open-minded psychiatrist. Like all aspects of your child's treatment, you will need to become your own expert. (See articles on nutritional supplements and food.)
Diet is a matter of common sense. That 20-ounce Coke your kid may drink at school contains 15 teaspoons of sugar. And he or she may glug down another 15 on the way home. Kids' cereals are basically crunchy sugar, their school lunchrooms resemble Seven-Elevens with no adult supervision, and fast foods loaded in sugars and saturated fats have become the world staple. We eat out a lot more, where we have no control over the ingredients that go into our meals. Even a restaurant salad can be loaded with fat and sugar.
Not surprisingly, modern diets are turning our kids into obese individuals and future diabetics. No smoking gun has been found making the link to mental health, but researchers are bound to connect the dots sometime soon.
It may also be a good idea to test your child for toxic substances and sensitivities to certain types of food. Dust, mold, various chemicals such as those in fertilizers, and pollens can affect the central nervous system and the brain. Doris Rapp MD, author of Our Toxic World: A Wake Up Call, advises asking:
Was it a pollen season? Had you just moved or started a new job or school? Did you purchase a new mattress, carpet, furnace, furniture? Did you paint or pesticide your home? Did you remodel or repair something in your home? Was there an upset in your health (an infection or operation), life, home, family?
One mother who is moderator of an internet parents' board told this writer that she suspects Sudafed and similar remedies may sensitize children to a preexisting condition or trigger or exacerbate episodes. The Sudafed issue comes up frequently on the board, she said. The drug’s labeling warns of nervousness, restlessness, and trouble sleeping in some people. Sudafed may be completely harmless, but if your child has been taking this or a similar drug and has been acting up, you may want to take him or her off the medication and see what happens.
Finding the right diagnosis for your kid and getting him or her on the right meds with appropriate psychosocial and educational interventions, as well as lifestyle changes, is bound to be a process of heartbreak and frustration. But never abandon the hope that your child can eventually lead an enriching, creative, and productive life. An article in the South Florida Sun-Sentinel describes one family’s journey through hell, but finally - after finding a psychiatrist who made a correct diagnosis and treated their kid accordingly, mother Tina was able to say of her 13-year-old son: "I don't know this kid. He's a different kid. He's fun. I enjoy being around him ... Steven was getting A's where he used to get F's ... I never bonded with Steven. Now that he's stable, I'm learning to love him. I'm catching up on nine years."
Kids like Steven have been out of the closet with their diagnosis since day one. Unlike previous generations with the illness, they are growing up refusing to be invisible and demanding to be heard. Please take pride in your kids - they will truly change the world.
Updated Feb 15, 2008
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