where are McMan and the Papolouses on this piece? Why are they being so silent?????

Well I wish I had my own blog (sometimes) but since I don't I'm going to post what I had to write about Jennifer Egan's article right here. I sent this to the editors of the magazine as well as Egan herself. So far mum's the word but that's no surprise. Anyway -- posting it here is like preaching to the choir (mostly) but hope you enjoy it.

Dear Editors,

I hope you will take the time to read my response. There were many flaws to Jennifer Egan's article. I believe it does a disservice to public health to have a neophyte who doesn't write on health issues, let alone mental health issues, write an article on a topic as sensitive as bipolar disorder in children. The learning curve is steep and the consequences of being wrong in one's conclusions far-reaching. I hope you will set the record straight at your earliest opportunity.

It is somewhat ironic that the day following publication of this article you published two more articles in your paper and on line (by Benedict Carey and Claudia Driefus) that provide proof of the very great dangers of the treatments being used routinely by the "experts" in this story

Sara

Re: The Bipolar Kid

Let’s assume for a minute that we do not dispute something is going on with kids today that is different from previous generations, that there really is, for some reason, more so-called “bipolar” that may in fact be on the same spectrum as autism and have the same roots as that epidemic. Let’s not even challenge the fact these behavioral problems are rooted in neurological differences and problems. What does need to be challenged, however, are the assumptions that are now being made about the causes of this epidemic and the effects the treatment protocols that are being used most aggressively are having on the trajectory of the disorder.

The cause of choice for bipolar disorder, among biopsychiatric practitioners, is genetics. Kids are born “bipolar” and that’s that. Scientists are on a search for the holy grail, the set of genes that will “predict” whether one will be bipolar or not. Looking to genes as the answer underestimates the complexity of the genetic underpinnings and in particular, ignores epigenetics, the ability of genes to be turned on and off. No set of life circumstances, no excess of vaccines, no environmental toxins, no electronic over-stimulation, no dietary abuses – none of these things seem to play any role at all in the development of the “disease,” according to writers like Jennifer Egan, who doesn’t acknowledge any of these influences at all. Yet the behavioral characteristics of the families she describes seem highly dysfunctional and probably bipolar enabling too. They seem like they could at least be one small factor -- among many, I'm sure -- contributing to the problems of these children. How did these families respond when the rage first started to manifest itself in the first place? Is it really appropriate for Claire to act out her feelings against James in such a pronounced way even if his behavior is uncontrolled? Shouldn’t parameters be put in place to protect her but also to prevent her from displaying her antagonism to the extent of barricading her room against him and lashing out physically and verbally? Should she really be allowed to eat alone in a separate room for three meals a day? After all, this is a family that can afford $20,000 to provide a “shadow” for James at pre-K, another bizarre symptom of perhaps protecting James from the consequences of his own actions. (Maybe it would have been better for him just to stay home for another year and have individual attention!) $20,000 would go a long way to providing physical, nutritional, and holistic therapy that might benefit James more than atypical antipsychotics.

But the most egregious omission from the article from my point of view is any nuanced consideration of the effect of the treatment protocols on the children. After all the rumination about whether the diagnosis is valid or not and how to make it, where does that get you? It’s not as if the treatment protocols are very sensitive to one diagnosis or another. It seems that a wide variety of medications get tried on every child who exhibits explosive rage and irritability. Children get cycled through one medication after another. They work for awhile and then they don’t and it’s on to the next one. Isn’t there something wrong with this picture? Shouldn’t it be telling you something? And to claim that doing this is better than the alternative of not treating with medication at all is never debated with any seriousness in the article. There is almost no consideration of the risks of these medications or the benefits of alternative therapies. In fact it is inaccurately stated that atypical antipsychotics have less tremors and muscle stiffness than older medications, which has been demonstrated not to be the case [Peter Breggin, Brian-Disabling Treatments in Psychiatry and Ben Carey, New York Times].

More importantly the confounding effects of the medications on behavior are never considered. Egan tells us it’s the disease “breaking through,” not the toxic effects of the medication. Just maybe Risperdal, Depakote, Lamictal, Abilify might have the potential to exacerbate a 6 year old’s problematic behaviors. Does this ever cross the author’s radar screen? Maybe she should try some of these drugs herself. Only physical side effects are ever mentioned, not neuropsychiatric ones, yet FDA announcements and the Physicians’ Desk Reference are replete with bizarre behavioral side effects to these drugs, which surely may be more profound in a child than an adult. Brief short term appearances of benefit that come from sedating and blunting effects that seem to fool everyone into believing they have a solution give way to ever worsening cycles of frightening behavior. This pattern is seen repeatedly, even in this article! Here is a family that initially resists treatment with Zoloft and ends up with a child on a cocktail of several drugs at least as potent as an SSRI. They are first led (unfairly, in my opinion, because improvement is so rare) to believe James would be off Risperdal by the time he was 7 or 8, James’ mother tells Jennifer Egan, and instead he has been on several different drugs, including lithium, that requires blood draws to determine toxicity to the liver. If an attempt to remove the drug is actually made the likelihood of success would be low because withdrawal is poorly understood (it takes a long time and has to be done painfully carefully often titrating dosages down dissolved in water over several months and few doctors understand this). A withdrawal that is too abrupt can lead to a rebound of explosive behavior even worse than the presenting symptoms. If this is not recognized for what it is – rebound from a drug reaction, rather than relapse to a disorder – the vicious cycle starts again.

I’m struck by how under the spell of the psychiatrists the families (and the author) really are -- at their mercy and what if they are wrong? Everyone is stabbing at something in the dark they don’t understand and can’t control but that doesn’t mean they should be engaging in desperate dangerous treatments that are known to have long term ill effects. Mary, James’ mother, describes him crying every single morning, crying, crying, crying. Then she says “I now realize that was depression.” How does she realize that’s what it was? And what does she mean by that anyway – that he didn’t have a real reason to be sad and crying, that he has a “chemical imbalance” and that’s why he was crying? She’s been brainwashed by the biomedical paradigm and has stopped looking for other reasons why things are the way they are. We don’t ever learn whether she is medicated herself and how this may affect her perspective on James and his treatment.

Although it seems like the topic would belong in a different article, unless a writer who is tackling a “medical” problem brings up the corruption that is going on in academic research she cannot get at the heart of the issue because no study or researcher can be taken at their word, not because they are deliberately deceptive, but because conflicts of interest have become so engrained and so pervasive. It is misleading to state that “studies clearly show that the longer bipolar disorder goes untreated, the worse a person’s long-term prognosis.” Maybe some studies assert this but they are the ones funded by drug companies and are usually flawed, manipulating data in ways that make what actually happened at the clinical level impossible to determine. Longitudinal studies of people who are unmedicated or minimally medicated are hard to find but they exist and actually show better outcomes if some alternative community or familial support exists. If between 10 and 15 percent of those with (probably the most virulent form only of) bipolar disorder end up committing suicide, it would certainly be relevant to know whether this was from a group that had been treated as I suspect it is. Many of the drugs used to treat bipolar disorder carry suicide warnings and actually increase the risk rather than lower it. This is cavalier not to clarify this or even ask the question. One reason bipolar diagnoses may be increasing exponentially is because SSRI antidepressants (nearly one in 4 Americans have taken an antidepressant at some point) actually induce mania and psychosis; they make people bipolar not because the victims were “really” that way but because the stimulant effects of the antidepressants affected them adversely. The cure is not to treat bipolar disorder but to carefully remove the antidepressant. The whole concept of iatrogenesis is omitted from this article but in psychiatry, as well as many other areas of medicine, it is a very real problem. There is a reason the “right medication has proved elusive.” Most, if not all, of them do more harm than good.

To conclude with quotes from Kiki Chang is really the ultimate irony and reflects where the author ended up after her research, clearly in the pocket of pharma and biopsychiatry. For him to be cited as the advocate of some alternative therapy (Family Focus therapy) is almost laughable. His confidence in medication is so absolute that he is ready not just to medicate florid psychiatric symptoms but also “prodomal” ones that might just be incipient. He seems to espouse some belief that you can start a treatment of medication and stop it, but that rarely happens under the care of a psychiatrist, as if it would do any good anyway given the effects of these drugs on the brain. None of them really understand withdrawal, let alone have the patience for it or the interest in completing it. Instead when things go south they rush to another medication. It’s a very risky course to take with children especially.

Even though Ms. Egan, I'm sure, thinks she is presenting a balanced, nuanced view, by sticking to only one cause, genetics, and only one treatment, medication, she is really being narrow and one-sided in her approach and giving little hope to families that may be struggling with children like James. There are other much more far reaching ways of looking at the "bipolar" phenomenon in children.

This is a great round up of links, thanks Philip.

I'm glad to see you link to Alison Bass, as well as the others.

Good response Sara. I wish the nyt had made comments an option with this piece but seeing what sorts of flame wars usually break out on mental health pieces, it's not surprising that the didn't. It sickens me that an unhappy child gets treated as a monster these day.

Wow, Sara. That's excellent.

Sara, it really is too bad they didn't post your letter at NYT. It's execellent.

Sara, nice job!

I have the hard copy of the paper here. The letters section is a week behind, they are publishing letters from the Sept 7 magazine.

Try for next Sunday's paper.

Sara's letter to the NYT is excellent and covers all points.

Thanks Sara for all your hard work in writing this informative letter.

By coincidence, www.SSRIstories.com had a new case as of today Saturday, Sept 20th on a boy who was given antidepressants starting at the age of six. For ten years he was suffering from violence, out of control behavior and mania. So finally the docs diagnosed him with "Bipolar Disorder" [at the age of 16] as they all are diagnosed.

I sincerely believe that many cases of child pediatric bipolar disorder, perhaps even a majority, are caused by antidepressants, especially SSRI antidepressants, in children/adolescents.

Here is the case as it appears on SSRI Stories:

http://www.ssristories.com/show.php?item=2839

Can't the psychiatrists try discontinuing, very, very slowly, the antidepressants that children are taking [when their condition begans to worsen]. It seems removal of the offending drug and substitution of physical exercise, social support, CBT, and nutrional therapy might be the answer rather than a life time diagnosis of "bipolar disorder". Where has common sense gone!

Good work Sara!
You've raised many important issues that they don't want to approach.
I've saved your letter and I'll post it if you don't mind.

Good work Sara.
You raised important issues that strangely they always forget to report.

Unfortunately, Sara, papers won't post long letters. You have to make your point in 250 words or less. That is not a shot at your letter. I'm just suggesting you find a condensed version to get consideration. I hope you'll consider it and resubmit. This from someone who reads the Letters to the Editor pages in newspapers/magazines.

While it is true that newspapers will rarely publish long letters, that does not necessarily mean that they won't publish some of what is contained in a really long letter if it suits them. I know this from personal experience - a little over two years ago I sent a really long letter to the Wall Street Journal in response to an article they had about Dr. Torrey and forced treatment (if you can call anything given in such a punitive fashion "treatment"). Anyway, they ignored most of my letter but printed three of the four sentences in the final paragraph. (It's one of these ).

So even though it might be unlikely the NYT would publish all of Sara's letter, I think they might print some of it if it serves their purposes to do so. It's definitely true that a shorter letter has a better chance of being published in it's entirety, though.

Thanks to everyone for your support. I am well aware that the NYTimes will only consider letters of about 250 words for publication == I have been published in the magazine twice before. Maybe it seems silly but I did not really write this letter with the intention of seeing it published. My only hope really was that the editors and the author would read it and that it would make them think twice. And maybe the next time the editors will get someone like Philip to write their articles on mental health rather than novelists like Jennifer Egan. I don't think I could ever shorten these points to 250 words and not sure I want to. Listen I am very appreciative that as many of you took the time to read it as you did. Sure I'd love the general public to see these points and maybe someday I will get something published that will reach a wider audience. I'm working on it.

Maybe it seems silly but I did not really write this letter with the intention of seeing it published.
Sara

That's it!
When we write letters to mags or e-mails, to FDA for instance, the last thing we should expect is an written answer.
However it's very important to write because it shows people's concerns and that their "views" are being questioned.
Of course I would love this answer

Subject: RE Children Bipolarity Questioned by Philip Dawdy

Dear Mrs Ana,
"Thank you for your argumentation.
We have already contacted Mr. Philip Dawdy and after reading all the posts where he raises this subject the FDA will not only give him an interview but FDA will rethink the whole concept of Children Bipolarity.
The FDA is even thinking about not giving these diagnosis on children.
Yours Sicerely,
FDA

I'm sure that filling their Inbox makes a difference.

Good job Sara!
Of course they will not publish. And I don't think yours is the only letter they've received.