Where did the bipolar go?

When she was four years old, my daughter received a diagnosis of mood disorder, and when she was six, a new psychiatrist diagnosed her with bipolar disorder. I will never know whether she received this diagnosis because I took her to a particular clinic at a leading medical center, or whether her constellation of symptoms truly fit that diagnosis.  The psychiatrist who gave her the bipolar diagnosis has been criticized in the media for over diagnosing children with bipolar disorder. A recent story in the Boston Globe describes the ongoing dispute within the medical field over whether chronic irritability and aggression symptoms of ‘mania’ or are better described in the upcoming DSM V as ‘disruptive mood disregulation.’ 

Children who are diagnosed with bipolar disorder often receive other diagnoses, including ADHD, oppositional defiant disorder, post-traumatic stress disorder, attachment disorder, executive function disorder, sensory integration disorder, and autism spectrum disorder. By the time my child was six years old, she had been hospitalized at least twice and diagnosed with all of the disorders listed above, and probably more.

For many years, I was convinced that her prognosis was very poor. In bimonthly meetings at the psychiatrist’s office, I learned that the early onset of my child’s extreme aggression, combined with the frequency of outbursts, pointed to a stronger likelihood that her illness would develop into adult bipolar disorder, as compared with children who had later onset or more mild symptoms. The few people whom I knew with adult bipolar disorder were unable to work and seemed quite disabled. When I argued that my child seemed neither ‘depressed’ nor ‘manic’, I was told that I was incorrect and that irritability was the hallmark of mania (and depression).

Since she was three, I have investigated and tried many interventions to address my child’s tantrums, aggression, social deficits, and hyperactivity, including sticker charts, Collaborative Problem Solving, multiple psychiatrists, therapists, and hospitalizations, at least 15 or 20 medications, two therapeutic schools, social skills groups, occupational and speech therapy, and more. Despite all of this, she attacked me many times, physically and emotionally, and was aggressive in public. Needless to say, she didn’t have any friends.

Nine months ago, the psychiatrist at a long -term psychiatric treatment program told me that I have to accept that my child ‘will never become a doctor or a lawyer’ because her illness is too severe.  This is a child who has expressed the desire to become a medical researcher.  I was outraged at the psychiatrist’s arrogance and I hope that she has a short career.

Fortunately for my daughter, she has a mother who never gives up.  During the Persian Gulf War (1990-1991), while living in Jerusalem, I learned to persevere in the face of uncertainty about the future. Despite the constant risk of biochemical warfare from a Iraqi missiles people went to work and carried on life as usual, carrying gas masks everywhere.  I learned to push aside the fear and the doubt and keep on trying.

After receiving the unwelcome prediction, 9 months ago, I decided that radical action was needed.  I discontinued the services that were not working or were making my child worse: the therapeutic day school and overnight camps, speech and occupational therapies and the antipsychotic medications.  I listened to my child when she said that she wasn’t being challenged at school, she didn’t need speech and OT, and she wanted ‘normal’ classmates. For an interim period, after withdrawing her from the therapeutic school, we tested the waters of reentry into the world of the non-mentally ill.  I home-schooled her and she gradually joined groups of home schoolers, then girls her age within our religious community. With each new group experience that she tried, I kept my cellphone close, in case her inappropriate behavior resurfaced. To my surprise, and joy, she made friends and discovered that her social skills not as inadequate as we had thought.

My daughter’s bipolar disorder seems to be gone. She is thriving at a private school, not special education. She is achieving high grades and is making friends.  Sometimes the experts are wrong.

Our guest blogger, Rachael Wurtman, is in private practice as an Mental Health and Autism Spectrum Advocate, who advises parents about and advocates for  interventions and services, at schools and in the community. She finds pediatric mental illness and autism spectrum disorder fascinating and is constantly learning as much as she can. She is trained in law and in child development and has chosen to give up the practice of law.

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12 Responses to Where did the bipolar go?

  1. Lori B says:

    I’ve had similiar experience with my daughter although not as early. I don’t believe in the labels that psychiatrist give children, teens and even adults. They give the label for research and/or insurance purposes, but labels are not in the best interest for anyone’s welfare. Everyone goes through struggles, more than others. As a parent we have to learn to rely on ourselves more, and not on the so-called experts.

  2. Emily R says:

    I am so glad to hear about this family’s experience! We had a similar experience. My child was also labelled as severely impaired, and after several years of psychiatric hospitalizations, numerous med trials, and ineffective special education, we took a radical leap of faith. We sent my child to Hampshire Country School, a unique boarding school that supports children with strong personalities. He has been medication-free for 3 years, no longer has a bipolar diagnosis, has a small group of friends and is excelling academically. He is appearing more and more like a “typical” child, and though he still struggles with mood issues, he has learned wonderful coping skills at his school and is able to manage his mood much, much better. In my mind, a child’s environment is the biggest influence on his/her development. Lesson to parents: listen to your instincts and don’t be afraid to make a radical change. It couldn’t be worse than a diagnosis leading to psychiatric meds, hospitalizations and social isolation. Thanks for the great story!

  3. Debra Pacheco says:

    As a mother and grandmother with lived experience with Bipolar I get upset with not diagnosing children with the correct diagnosis because I feel that there are many children who suffer an onset of this illness who are not getting the correct treatment because they do not have the correct diagnosis. My daughter was misdiagnosed with depression in her early teens. Putting her on antidepressents alone increased her mania and put her more at risk for school failure, substance abuse and suicide. It wasn’t until she was in her early twenties that she got the correct diagnosis and was put on a mood stabilizer that she got better and today in her late twenties she graduated top of her class at Boston University with a degree in Microbiology and has a successful career. She takes her correct medicine and does well today. My grand daughter began raging at 5yrs.She was initially incorrectly diagnosed with just ADHD and put on a stimuant which increased her violent tendencies. The right tteatment and diagnosis put her in a place where she was the role model student in her Learning Center. She still needs her medications tweaked and hads had two more Hospializations but I am upset each time the hospital changes her diagnosis to Mood Disorder NOS. I feel like they do this because the diagnosis is contoversial and not because she may not be Bipolar. We know she is. This new diagnosis is just another way of not diagnosing these children who truly are. If both parents are Bipolar the child has a 75 percent chance of having an onset.

  4. Suzanne says:

    Hmmmm….. I worry. My child too was diagnosed as bipolar at a young age (at that same academic center, likely). I agree labels early have difficulty but… now my son is 14, still severely disabled. We need a diagnosis to better tailor treatment but no he carries 4 -5 at any given time with any encounter with hospitals or treatment facilities. Bottom line, mental health care is in the dark ages and until parents who can, speak up and out nothing will change, ever.
    I am worried at the tone of this blog.. that if you just stop everything it will be better. There are families out there desperate for help and for some of their children… stopping meds would be horrible. I agree we must listen to our heart but we must also listen to our brains.. this is hard, difficult stuff and there is no easy answer. One persons success is to be celebrated but should not be taken as a recipe for others.

    • Sue says:

      I agree with this last reply that we have to be careful while still celebrating such a success as this child has had. I have a daughter with all the diagnoses above. I also know that if she was taken off what she currently takes, she’d be in dire straits within a few days. So, I guess I am following the advice of the original blogger, which is to listen to my instincts. My daughter is bipolar, needs medication to have a chance at a decent life and I’ve taken the radical road of supporting her in her illness. I have not given up hope that as she matures (she’s now 14), she will have a life worth living.

  5. AmyJean Tomaso says:

    I also have a young child (7) who after a flurry of varied dx’s has been diagnosed bipolar – among other things. Thanks to his meds AND a therapeutic school – he is doing amazing. We have had bumps – but avoided hospitals and inpatient treatment. I DO think often kids are mislabeled – but we tried everything before resorting to meds….. and I regret not trying them sooner. I do not think it’s the ‘norm’ – I agree with both Debra and Suzanne – the knee jerk reaction to too many dx’s may lead to kids who truly ARE bipolar not getting proper help or treatment. . . and that worries me also.

    We, unfortunately, have limited information as our kids are all adopted – but I feel strongly this is the correct Dx – and I am hoping we can help him towards a more successful future..

  6. David Keller MD says:

    You (and I suspect many of those in PPAL) have bumped up against two of the major challenges in child mental health: we (the doctors and scientists) really don’t yet understand severe mental illness in children, and we honestly don’t know how it will change as a brain grows and develops. We understand pieces of it, and are trying to fit the bits and pieces that we do understand into a structure that is still inadequate. You and your daughter sound like you on a really interesting path; I hope that you are able find smart doctors who are able to walk the path with you, and to occasionally identify some of the flora and fauna along the way.

  7. Lynda says:

    Interesting comments. When my son was a toddler, I went to various “Parenting That Works” workshops, finally being told that, well, I have difficult children. When my son was in 1st grade, he was diagnosed with ADHD. In 7th grade a neurospychologist diagnosed him with Mood Disorder, NOS (after he stormed out of his office and refused to return). In 8th grade, the public school system said they could no longer handle him (after 18 suspensions) and sent him out for a 45 day assessment, during which time he was hospitalized for 4 weeks. Because my son refuses to go to counseling, or talk to any doctors; no-one seem to know how to help him. Everyone is guessing some sort of Mood Disorder. At this point, I have been advised by several agencies and by the school systems to file a C.H.I.N.S. I wish I could just bury my head in the sand ~ this mental health road to recovery is extremely frustrating!

  8. catherine mayes says:

    Rachel – thank you for your clear description of your situation and for opening a discussion of this issue. Miss you!

    Catherine

  9. Micki Torres says:

    i am 22 years old, i have to sisters, one who will be 23 and one who would of been 21. We all have been Diagnosed with Bipolar, AdHd, PTSD…etc. if i keep listing all of our disorders you would have a book. Me i was adopted at the age of four along with my sisters Virginia and yolanda. I have Atisum,. I DONT LOOK AT MY LABELS. I LOOK AT GIFTS THAT WERE GIVING TO ME TO MAKE ME STRONGER. having a metal disorder, is not the end of my life or anyone, unless to that one person, IT IS!! like my sister yolanda. she was sixteen when she had commited suicide. to her she HURT, CRIED, ISOLATED her mind from everyone. she was bullied. she chose her life, and i am PROUD and HAPPY, she is SAFE now and ACCEPTED.
    a MENTAL DISORDER, is just another PHASE, another LABEL, but to me its another OBSITCAL and FEAR, but in the end, its what makes ME…ME.. a gift, i could recieve!

  10. Martha says:

    My daughter was diagnosed with mood disorders at 13 when she refused to get out of bed for school,and began cutting.. She had severe anxiety and depression with social phobia. Our route was a 766 placement in a therapeutic school. This very smart, compasionate child took several different medications. We had the bipolar experts over medicate her. She changed doctors and medications and this helped for a while. At 19 she seemed pretty sick-homeless and taking crazy risks..she had the classic mania symptoms. She had taken herself off medication at that point. Miraculously, today, at 22,she is holding down a job and living independently and without medication. She says she was never bipolar, but thinks she has ADHD and was depressed during her teenage years (ya think?) Is she is cured? Or did she just mature, we have no idea. I think the important thing is as parents is we keep an open mind, try not to get bogged down in “diagnosis” and use the diagnosis to help us get help from insurance companies. Get second opinions, talk to other parents, get support for yourselves.

  11. Judith R. Knight R.N. says:

    Thank you all for sharing your experiences in detail. You offer hope and support for others, and even for those who work in the field; increased understanding of the struggles and needs. Judy Knight R.N.