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Monday, May 3, 2010

Preying on Human Misery

Last year at the annual meeting of the American Psychiatric Association, I went to see a panel on the mis- and over-diagnosis of pediatric bipolar disorder. The idea that a brief period of agitation is somehow a manic episode has been advanced by several prominent “researchers” being paid by drug companies It is in direct contradiction to the official DSM criteria that mandate that bipolar mania last a minimum of seven straight days with no letup, and that hypomania last a minimum of four straight days. While these duration criteria are obviously somewhat arbitrary, they were put into the DSM precisely so reactive behavior would not be misdiagnosed as bipolar disorder.

I met another psychiatrist in the audience who told me about the existence of a website, bpkids.org, which is the homepage of an organization called the Child and Adolescent Bipolar Foundation (CABF). He said the organization was primarily funded by the drug companies, and featured messageboards with advice from parents of allegedly bipolar children on what other parents should tell and not tell their doctors in order to get their child labeled with the disorder. The drug companies also used the website to recruit subjects for ongoing clinical trials of drugs for pediatric bipolar disorder, thereby assuring that the subjects in their clinical trials were only those whose parents were anxious to have their child so labeled.

Why would any parent want their child to be labeled with a brain disorder? I go into detail about the answer to this question in my upcoming book, but suffice it to say here that many parents these days suffer from an all-consuming fear that, because they have careers and other responsibilities, they are somehow short-changing their children. The guilt caused by this fear is enormous and leads to difficulties in their practicing two of three main “L’s” of child rearing: Limit setting, and Let-‘em-go. (The third L is love, which is usually not a problem for most parents attracted to parent support groups. Severely abusive or neglectful parents, while also secretly consumed with guilt, will generally avoid them. They are deathly afraid that their mistreatment of their children will be discovered by the authorities). Having the child labelled as sick instead of poorly disciplined helps some parents feel less guilty about their own behavior.

I checked out the Bpkids website and it was pretty much just as the psychiatrist who told me about it described. It did indeed contain a listing of clinical trials.

According to a post on the Furious Seasons Website on June 10, 2008, one of CABF's major funders was Janssen, which makes Risperdal, an atypical antipsychotic that was approved the previous year for use in kids 10 and above with bipolar disorder. The post also said that Joseph Biederman, the Harvard Guru of Drugging Children, sat at the head of CABF's Advisory Council.

[CORRECTION: Since I originally posted this, I have learned that the Furious Seasons post quoted above was incorrect about Dr. Biederman. Although he is on CABF's scientific advisory council, he is not now nor has he ever been the head of the council]

However, I went back to the website just recently and found that it had changed considerably. It now stated prominently that it did not accept any drug company funding at all. Furthermore, the list of clinical trials had disappeared. There was even a blog with some posts friendly to family therapy.

What happened? The only clue I could find quickly was an article in New Scientist magazine from 2006. It said:

“Meanwhile, concerns about the safety of psychiatric drugs in children, which reached new heights in 2004, have hit the Child and Adolescent Bipolar Foundation hard. Its donations from industry fell from about 40 per cent of its total revenue in 2004 to 20 per cent in 2006. ‘Pharmaceutical companies are not as willing to support us because of increased scrutiny around psychiatric treatments in children,’ says Susan Resko, the foundation's executive director. As a consequence, she has had to lay off more than half of her staff.”

My guess is that as the parent support group became more and more suspicious of the side effects as well as the efficacy of the drugs being given to their children, the pharmaceutical companies pulled out completely. The New Scientist article went on to say that another patient support group, the Depression and Bipolar Support Alliance, received more than half of its 2005 funding from industry.

It added, “The treatment section of the Depression and Bipolar Support Alliance's site was developed with an "educational grant" from Neuronetics, a company which gave at least $10,000 and possibly as much as $150,000 to the alliance in 2005. One page describes transcranial magnetic stimulation (TMS) and vagus nerve stimulation (VNS) which both aim to treat mood disorders by stimulating neural activity. Neuronetics makes equipment for TMS, which has not yet been approved as a treatment. Nevertheless, the site provides web links and telephone numbers for Neuronetics and Cyberonics, a VNS equipment maker that donated between $150,000 and $500,000 to the alliance in 2005.”

I checked out that organization’s website, and voila, there it was! The list of clinical trials. You can find them at http://www.dbsalliance.org/site/PageServer?pagename=research_trials_bipolarlist. According to a variety of sources including Senator Grassley of Iowa and the New York Times (“Drug Makers Are Advocacy Group’s Biggest Donors” By Gardiner Harris, published: October 21, 2009), involvement by the pharmaceutical companies with patient support groups is rampant - as long as the companies are hawking a drug that might treat the disorder in question. For disorders that are best treated without drugs, their involvement is nil.

That the Bpkids website unwittingly allowed demagogues like Biederman and the pharmaceutical companies to prey on desperate but well-meaning parents of out-of-control kids is best appreciated by looking at some of the current postings on the website’s blog. The posts are heartbreaking. The posters all seem to accept the bipolar diagnosis of their child without much question, even as they speak of the beneficial effects of learning how to better interact with their child. When patients are truly manic, they remain that way no matter what anyone else does.

While I obviously cannot make a diagnosis of any particular child based on a brief blog description, in aggregate the behavior that many of the parents describe in their children strongly suggests acting-out, manipulation, and something called spoiling behavior. Spoiling behavior is one of the hallmarks of patients with borderline personality disorder, although it is not one of the DSM criteria. (I will not further define it in this post, as it would take too long. I discuss it and the reasons for it at length in my last book for therapists, Psychotherapy with Borderline Patients: An Integrated Approach).

The posters’ descriptions are consistent with the experience of other psychiatrists all over the country who believe the way I do. One psychiatrist posted this on Medscape:

“The problem is that for many of us, what is being medicated and passed off as bipolar doesn't even come close. My favorite question I ask parents of kids referred who have previously been diagnosed bipolar and on several meds is something like: Could you tell me about his moods, how long they last and is there any predictability to them? About 80% of the time a get a response along the lines of, ‘Oh no, he just blows up whenever he doesn't get his way.’ I can attest to the fact that a large number of shrinks are calling that bipolar. While meds will often tone this down, that doesn't make it bipolar. Kids like this primarily need limits which have been lacking for years and which parents would rather have treated with meds than go through the pain of applying limits and structure.”

Furthermore, the descriptions of some of the parents’ own behavior as posted on the Bpkids blog hint at problematic parental over-involvement.

For example, one mother relayed that, when her teen was put in a residential treatment program, the daughter accused the parents of abandoning her. This accusation caused the mother to “burst into sobs.” She also mentioned that her daughter was able to behave perfectly normally when the police arrived after she called them on her.

Another mother stated that her child had been given multiple diagnoses from different psychiatrists including oppositional defiant disorder, Asperger’s syndrome, ADHD, generalized mood disorder, and some mysterious illness called sensory integration dysfunction before being diagnosed as bipolar. (This plethora of different diagnoses is a sure sign that a careful psychiatric evaluation has never been done). The child would get angry when told to do his homework or when reminded that it was his week to do the dishes. Sorry, but children who throw tantrums when they do not get their way ain’t manic.

12 comments:

  1. Excellent post about an organization that is right up their with NAMI, in my opinion. I checked out some of CABF's parents blogs and the parents sign off with their names and their diagnoses, e.g. Marla, mother of Duane, bipolar, schizoaffective, PDD, married to Norbert, OCD. They've bought the diseased brain model, hook, line and sinker.Now, my other point is your point: Why would any parent want to have their child labled with a brain disorder? So, again, I put it to you. Why are you so persistent elsewhere in labelling schizophrenia as a brain disorder? This is a real disservice to people who are actually planning to get better. Those bipolar children you write about - chances are schizophrenia is one of their multiple diagnoses. Bipolar and schizophrenia are one and the same, more medical researchers are drawing this conclusion. What is good for the goose is good for the gander. Why label anyone with a brain disorder when there is enough evidence out there that goes against this?

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  2. David,

    The Child & Adolescent Bipolar Foundation has not accepted pharmaceutical support since 2007, and before that, it was a small percentage of our funding. I urge you to join our expert chat on May 12 on Complementary and Alternative Medicine. I also urge you to contact me to check your facts before printing inaccurate statements.

    Susan Resko
    Executive Director
    Child & Adolescent Bipolar Foundation

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  3. Ms. Resko,

    Thank you for your comment. Information found on the internet is always questionable. I'd like to know specifically which statements in my original post you felt were inaccurate.

    I did mention that your organization was no longer accepting drug company support, although I did not know when it had stopped. The 40% figure about past support came from a magazine article in which you yourself were quoted.

    Thanks again.

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  4. I cannot believe the stupidity of the people who who post to this site. It is obvious that you have little knowledge of mental illness especially bipolar. I have had several family members diagnosed with bipolar, one of which is my brother, three children, and my husband. I am a very good mother, and David Allen's idea of blaming parents for their child being unwell is absolute garbage. If there is any dysfunction in a family who believes that that their child has pediatric bipolar it is because there is other family members with the disorder (mum/dad or both) and they have not been diagnosed.
    I live in Australia and they don't believe in pediatric bipolar, I didn't know that there was bipolar in my family or my husband's until a very uneducated psychiatrist put my children on antidepressants because they were both suffering from depression which we thought was because of their anxiety. Within days of starting on antidepressants my daughter went from a lovely child who was so severely depressed that she could not get off the lounge and was always tired to a screaming, uncontrollable lunatic. We consulted her psychiatrist as to whether it was the medication, he said no, and we believed him. One was on antidepressants for a year the other for several years. Cutting a long story short reading information from CABF of the effects of antidepressants on children with bipolar I myself took them off them, and noticed a great change in the children due to the nonacceptance of psychiatrists in Australia of pediatric bipolar disorder. I am now left with a son who has been diagnosed schizoaffective disorder (due to the trauma of taking antidepressants) and a daughter (nearly 18 now) diagnosed with bipolar. I am a full time carer now to two children who have changed so dramatically from children who were outgoing, funloving, and very intelligent to kids who cannot cope with any type of stress, my daughter screams a lot when she doesn't cope (she never screamed before). Both can't go to school as they cannot cope with school even though we have tried to get them to go back to several different types of schooling. My son now 15 cannot cope with anything, if something upsets him he starts hearing voices, his moods swing rapidly, whereby he can be laughing hysterically one minute, and crying wanting to end his life the next. We used to have a lot of family get togethers, and had a lot of fun now we can't because they cannot cope with too much noise and the intrusion of other family member into their safe zone.
    Try living with a son who won't let you out of his sight or having to get up several times a night because he if frightened of god knows what. He can't meet new people, and has lost all of his old friends, because they see that he is different now. Try living with people who want to take their life everyday and pine everyday for their old life and how things used to be for them.
    I cry silent tears daily for my children, i cannot show them that I am upset or they feel bad that I am upset about them and their illness. You try living the life I have because of uneducated psychiatrists who don't believe in pediatric bipolar and groups like CABF if it wasn't for them my children would both be dead now.
    As for your comment on labels, what if you had cancer, that is a label, and your doctor said that you had a problem but wouldn't tell you what it was because that would be labelling you. He put you on medication or whatever, and told you nothing about what you had. You went home and told your family that you were on medication etc. for something but you didn't know what, but you would be unwell for a while maybe there was a possability of dying who knows. If you don't give something a name how do you know what they are dealing with, how could you help or what supports you may need to get you through that illness. It is a bloody riduculous idea not to give something a name.

    Teresa

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  5. Teresa,

    To clarify, I do not believe that pediatric bipolar disorder does not exist, only that it is quite rare, and that children who clearly do not meet criteria for the disorder are being mislabeled.

    It sounds like your family may have an unusual amount of genetic loading for the disorder.

    And I agree with you that use of antidepressants in young children when there was no data about their efficacy and safety in that population is a highly questionable practice. Apparently in your child's case there was highly inadequate follow up care as well.

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  6. Pediatric bipolar is not rare, unfortunately my family does not have an unusual amount of genetic loading for the disorder from my viewpoint and having first hand knowledge of this disorder, it is quite a prevelent disorder.

    You may say what would an unqualified person like myself know of this disorder. Well, I have lived with a person for 30 years who has the disorder and several familiy members. I have been through many breakdowns with family members, their highs and lows. The culmination of personal experience plus the extensive information that is available on the CABF site.

    I would personally like to thank CABF for the support and research information they provide for people such as myself, who daily struggle to make sense of this debilitating disorder.

    I can see where a psychiatrist has difficulty picking up on this disorder and possibly believing that this disorder exists as you really need to be living with the person to be able to determine that they have pediatric bipolar disorder.

    On the subject of antidepressants, they are exceptional when given to people who only suffer anxiety/depression, but not to adults or children with any type of bipolar. A psychiatrist who specialises in bipolar informed me that when given to people with bipolar (who are not on a mood stabaliser) antidepressants cause bipolar sufferers to become manic and in the long term causes their moods to become ragged. That is, it causes peoples moods to become highly irregular, whereby a person could be laughing one minute at absolutely nothing then crying their heart out the next. These mood shifts could last anywhere from 30 seconds, to 5 minutes even a lot longer.

    So can you imagine what antidepressants can do to a child/adult who suffers from daily mood swings. It sends them crazy, my son still can be sitting at the dinner table (even though he has been on high doses of lithium and risperdal for 3 years) and at the drop of a hat be laughing hysterically, then cry his heart out.

    I battled for help for my children for the years. I have been blamed for my children's behaviour by psychiatrists such as yourself, who prefer to deem this disorder as "bad behaviour" and why don't I discipline my children more.

    All I can say to you is, go and stay a month with these families and their "badly behaved" children. Let us see you can control their behaviour. I guarantee that you will not make one bit of difference, and any amount of discipline that you use on these children will have very little or no effect.

    To find out that your child/children has a mental disorder is heartbreaking, you grieve for that child as if that child has died, as you know that they will never be able to live life as any other child would. For the life of me I cannot understand why you would make the statement, and I quote "desperate parents who want to believe that their children have a brain disease to avoid an overwhelming sense of guilt."

    I would rather people think that I was a bad parent rather than my children having a mental disorder. How much guilt do you think that people people carry around, it must be an incredible amount if you relate it to wanting your child to be diagnosed with a brain disease.

    Teresa

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  7. Teresa, I'm afraid your right about not knowing what you're talking about.

    Antidepressants to not cause bipolar adults to switch into mania if they are on lithium like they should be (unless they cannot tolerate it). In that case, they work extremely well, and do not cause the patient's mood to become ragged. That's baloney propagated by drug companies and their paid-off "experts" trying to get everyone on toxic atypical antipsychotics.

    There is zero credible evidence that daily mood swings are related to bipolar disorder. Even true bipolar patients can have other psychological and family problems when they are euthymic (that is, in between episodes, when their moods are not manic or clinically depressed).

    If a child is psychotic (delusions/hallucinations) that is good evidence that they may have a true bipolar illness or other types of childhood brain diseases.

    How can you say your family does not have a high genetic loading for the disorder and then say that many of them have been diagnosed bipolar? The genetic loading of families you talk to on CABF and other such venues can not be trusted because so many of them have been diagnosed with what I call bipolar M.A. - bipolar, my ass.

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  8. If you read information effectively you would see that I did not say that I didn't know what I was talking about. You are the supposed "professional" if you think like you interpret information that is why you are unable to see what is really in front of you.

    I find "professionals" such as yourself are very closed minded to new information, god help us if medical professionals were as closed minded as psychiatrists. Half the population would be dead, there are so many unbelievable physical illnesses around it is hard to believe that they exist or are real. Why is it so hard for you to believe in the existance of daily mood swings.

    My son who now has very severe mood swings due to antidepressants, can be laughing one minute and crying the next, the same happens with my daughter (even though both are on medication). Maybe if you read the right information you (written by many researchers, not just by one peanut) may find that what I am saying is correct.

    You mention agitation, have you witnessed this agitation first hand, or just knocking what people are saying, putting your own interpretation on the meaning of the word. I find that this is a common fault with psychiatrists, they do it regularly.

    Before antidepressants my children never laid a hand on me. While on antidepressants both would become violent, my son would try to strangle me or hurt me several times a day. I do not exaggerate when I say this, I would be physically and mentally exhausted by the end of the day.

    One day he had my daughter by the throat trying to strangle her, she was struggling to breathe it took everything that I had to get him off her and tell her to lock herself in the bedroom. Don't say to me why didn't you call the police, I would never subject any of my family members to being carted off by the police. Also in doing this you loose any trust that that person has in you and you destroy the relationship. Then they have nowhere to turn too, this can lead to suicide etc.

    In the case of antidepressants if you read properly I said that they were not on a mood stabilizer. My daughter used to think that people were watching her all the time, even believed that the nurses were following her all the time and watching everything that she was doing. I told her psychiatrists this but they said that she was just acting.

    I would love you to experience a little of the frustration that I felt when these bastards would not listen to what I told them. It was alright for them they could go home to a nice quiet family, but I had to go home to a f..ked up one. One of constant violence, agitation, screaming, crying, depression etc. I put up with this type of shit for two years before I came across CABF.

    You know it was funny how I came across this organisation, one of the children's psychos mentioned the disorder in a meeting. I looked it up on the internet, both my husband and I couldn't believe it. It described our children to a "T". That is when we learnt that what our children had was bipolar.

    Do not knock organisations such as CABF you should be thanking them. I sing their praises constantly, for without them my children or I myself would be dead. You probably don't believe this but it is true. I know I live the nightmare still.

    Instead of assuming that you know everything, go and have a firsthand look for yourself. I invite you to come and stay in my home for a couple of weeks, and experience pediatric bipolar first hand. I am not joking this is a true invitation. See if you can cope with what I have to live with daily.

    As for bipolar M.A. maybe its about time that you got a new ass because the one you are thinking with is not doing much for you.

    Regards Teresa

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  9. Teresa -

    I know what you wrote - I was being sarcastic. Sorry about that.

    I cannot possibly comment in particular about what is going on diagnostically or otherwise with your family or family members since I would need a ton more information than you could ever provide in a blog comment.

    I wish more child psychiatrists DID actually observe for a couple of weeks what goes on in the homes of their patients. They won't even do that for a couple of hours! The conclusions some of them draw on minimal information is a scandal.

    Surprising as it may seem, a lot of guilt-ridden people would rather put a label on their children (and themselves for that matter) than look at their family dynamics. They come to the doctor demanding the diagnoses and the meds. Our child psychiatrists see it all the time, and the same thing is reported across the country. And many doctors willingly comply.

    As to CABF, I'm speaking about a much larger data pool; not any particular case.

    I won't make any presuppositions about you if you won't make any about me.

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  10. You know, I would never have dreamed that my two children had bipolar. They both presented with symptoms of anxiety, for which I took them both to see a psychologist who did CBT. It appeared to work well with them both. Though I must say that my son could never stand still, and would talk the leg off a chair. A lot of people could not cope with the amount that he talked, I myself had to ask him sometimes to take a break. He never had time to eat, taught himself to ride a bike, was always on the move. He would not go to sleep when the others went because he could not sleep so we would just let him fall asleep whenever. I have 6 kids and I was a pretty tough mum, I know how to raise kids, even the others that have been diagnosed with bipolar.

    My daughter was a great child, we would comment on how good she was all the time. She would always do things without being asked (even wiping her younger brothers bottom, which I tried to stop). There are not too many children that would do this. She always did well at school, and was always at the top of the class. A high achiever like her older sister.

    When she became anxious, we would work through it together until she was happy that she had sorted the problem. It was only when she was put on antidepressants that she became unstuck. Now she is unable to retain information (she had a photographic memory, she is unable to complete any type of study, and falls to pieces under any type of pressure. She will never be the same again.

    It has nothing to do with with antidepressants being bad, they are tremendous for depression and anxiety, but are no good for bipolar. There is an ongoing dispute as to whether antidepressants should be given to people with bipolar, and so there should be.

    In relation to CABF, and their receiving money from drug companies to further research, I say good on them. It is often hard to get funding from the government to do research for mental illness, especially for a disorder that many closed minded psychiatrists want to ignore (and I don't just mean you).

    My husband also has short term mood swings just the same as my children. One minute they can be happy and laughing, the next agitated, angry and violent. You say that this is bad behaviour in children what do you call it in adults?

    I have seen very similar behaviours in adult family members as child family members only psychiatrists prefer to call it bad behaviour in children. What is your explanation for this.

    My children (before they were put on antidepressants) did not look anything like some of the children in America diagnosed with bipolar. My children would have been classified as very mild in comparison. Some of these children get very agitated and violent. Children are usually to busy playing and being children to suffer agitation to such a degree. There is definitely something very wrong with these children and it is bipolar.

    It is known in America as pediatric bipolar, but adults suffer from the same symptoms, you are born with it. Please be open minded, look at what has happened to my children due to the ignorance of psychitrists in this country. They have destroyed my children's lives, how many others have they also destroyed.

    Teresa

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  11. Teresa,

    I totally agree with you that children should have never been given anti-depressants before they were tested on children. In addition, if they had a negative reaction to a drug, they should have been taken off it immediately if not sooner.

    The same goes for anti-psychotics, lamictal, trileptal, topamax, and a bunch of other drugs, let alone the cocktails of ever-changing doses and combinations of drugs described by the parents posting on the CABF forums and as seen in many other venues. This is indeed destroying lives.

    Since the drugs in so many cases are changed so frequently it becomes fairly obvious that first, the doctors are just prescribing willy-nilly almost anything that affects the brain and hoping something works, and second, that the drugs are not really working very well at all.

    I treat adults with unstable moods that are diagnosed with something called borderline personality disorder. It has nothing to do with bipolar at all, although someone can have both. They are frequently misdiagnosed as "bipolar II" by doctors who use symptom checklists in place of a full diagnostic interview and good clinical judgment.

    These people were not "born" with their problem, although they may (possibly) be genetically predisposed to it if put in the right (or should I say the wrong) type of environment.

    Again, I can't say anything about you or your family members, so I am not talking about you, but in general parents who have frequent unpredictable mood swings on a regular basis do a number on their kids' heads - whether they want to or not - especially if violence is involved. Kids are highly reactive to tension in the family environment.

    That is quite often the source of the kids' problems with mood, attention, and behavior, not bipolar disorder or ADHD. The problem almost always goes back at least three generations. Blaming parents or anyone else for it is counterproductive, since guilt makes things even worse (please see my post "Step up to the Plate" from June 2).

    As I have said many times on this blog, psychoses like schizophrenia and what true manics have (and I do believe that there are psychotic kids), on the other hand, are NOT caused by family dysfunction, although family dysfunction can make them worse. (I've been getting heat from people who think that psychosis is a family problem!)

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  12. Regarding ODD, Asperger's, ADHD, and sensory integration disorder being diagnosied together, that is not that unusual. They often go together. ADHD goes together with Asperger's in the same way an autistic person is assumed to also have ADHD. ODD often results from the ADHD. Sensory integration disorder is very common in the autism spectrum conditions. It's a broad term, but it refers to the person being either hypersensitive or hyposensitive to sensory input. For example, the person hardly feels pain or for the person sounds are too loud and lights are too bright, making things unbearable for the person. These sounds being too loud and lights being too bright are often a cause of tantrums for kids with that disorder. (These are situations where the tantrums seem to come out of nowhere.)

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