All a-twitter

I feel like I am back in junior high. Anything Gianna Kali posts, I want to copy. If she wore leopard skin jackets and smoked cigarettes from a cigarette holder, I’d want to copy that. By posting really interesting articles, her Beyond Meds blog gives me lots of fuel for my own daily post.

I have been meaning to write Gianna to ask her how Twitter works, because I know she Twitters a lot, and I am in the Twitter slow lane. I know she isn’t responding to e-mail so I am delighted to read her latest postings about Twitter to get a sense of what I am supposed to do. Now if she would only answer the question: How do I condense my blog link into the least amount of characters, and is it bad form to post my own blog link at all?

Akathisia – so that’s what it was!

When Chris was home after his first three month stint in the hospital, and while he was enrolled at the day program, he would pace our small apartment constantly. Round and round he went, round the dining room table, then into the living room, then back out to the dining room, round and round and round. Sit down, we would yell, but he couldn’t sit down. He was extremely agitated. His eyes also sort of rolled back into his head, giving him that “zombie” look. Chris was on the antidepressant Effexor as well as the antipsychotic Respirdal at that time.

There’s the gold standard where doctors, patients and family members know and share what is going on,

From the Family Dysfunction and Mental Health blog
But yes, antidepressants per se can indeed cause increased suicidal ideation, suicidal behavior, and completed suicides. However, I believe this only happens in three very specific situations, all of which can be managed by a competent psychiatrist.

The first situation is when a patient develops a side effect known as akisthesia (sic), which is extreme agitation in which a patient can barely sit still. Milder agitation can also be a side effect. Studies clearly show that a mix of depression and anxiety greatly increases the risk for suicide. The psychiatrist can warn patients about this side effect and tell them to call the doctor if it develops. Tranquilizers usually take care of this problem, but some patients must be switched to a different antidepressant, which may or may not cause that particular side effect.

and then there is the reality:

We just put up with the pacing. Now I find out that there is name to it, “akathesia” and that a competent psychiatrist can manage this. We put up with it because we just figured it was part of the diagnosis. Chris ended up back in the hospital after one month at the day program while they switched his meds. Seems now that all they really needed to do was to get him off the Effexor.

The popping and whistling sounds that Chris made went on much longer. Again, Ian and I figured it was just part of the weird territory of psychosis that we had wandered into. Surely, we figured, Chris was popping and whistling at the day program, and if it was okay with the doctors then it was okay with us. I think this may have been a symptom of tardive dyskinesia, but what do I know? Eventually, he just stopped popping and whistling.

$538,320.20

And the insurance company didn’t even bat an eye. . . This staggering figure is what was billed* to our insurance company for my son between December 2003 and July 2010, for:

1. hospitalizations (three, totalling nine months)
2. Day program (two years)
3. private psychiatrists (two)
4. medications
5. blood tests
6. occupational therapy
7. Tomatis Method (reimbursed under alternative medicine component)

Why doesn’t the insurance company make a fuss about this outrageous amount, I naively wonder. I could have saved them thousands by insisting on one drug for no more than three months of each hospitalization. I am convinced we could have avoided the hospitalizations and day program altogether if I had known about and had access to alternative treatments from day one. Had we (and the doctors) not over-reacted at the beginning, had we been told that schizophrenia was an understandable coping mechanism, things would have been different.

This figure does not include the thousand of dollars we paid out of pocket for vitamins, nor does it include sound therapy, the assemblage point shift and cranial-sacral massage. (The Tomatis Method, which I approve of, costs about $5000.) Heck, if the insurance company had agreed to pay for the alternative therapy, and refused to pay for medications, things would have been very different. As it stands, both my husband and I are embarrassed that my son, a relatively normal, intelligent guy who had a huge existential crisis, has cost the system so much money.

__________________
The figure actually represents three different currencies, which I am treating at par.

All about Eve

My theme, that psychiatry threw the baby out with the bath water when it stopped implicating parents in their children’s mental health issues, continues.

From a Child & Adolescent Bipolar Foundation blog.

In 1977, a Northern California mother named Eve decided she’d had enough. Eve had raised a child diagnosed schizophrenic and had endured the prevailing thinking by the medical community and society at-large at the time; that her son’s condition was her fault. That something in how she raised him caused his psychotic break with reality during his teens. Trying to get appointments with the local mental health facility administrators was frustrating, and the results of meetings she could get just made her angry. So on October 22nd, Eve and another couple, Tony and Fran, met with seven other concerned families of mentally ill children and formed the California Association of Families of the Mentally Disabled (CAFMD). But, they were just parents. What could nine sets of parents really do?

She explained why she took this dramatic step to the World Congress on Psychiatry that same year. Eve said, “We failed to understand why parents of a child with Leukemia were treated with sympathy and understanding, while parents of a child with schizophrenia were treated with scorn and condemnation.”

I’m old enough to remember the bad old days of parent blaming, which I mainly get a whiff of through the comments of people my own age whose siblings had a diagnosed mental illness (usually schizophrenia.) They tell me that how badly hurt their parents were by the attitude of the psychiatrists that they were at fault. I have no doubts that this is true and awful to experience. Psychiatry could have done a better job of it though, by skillfully and diplomatically promoting family based therapies.

Instead, at the behest of parent organizations like the one started by Eve that eventually became NAMI, psychiatry became pharmaceuticalized. By not taking a stronger stance, based on educating parents about what makes families tick, psychiatry deprived parents of meaningful ways of helping their children. The point of organizations like NAMI, as demonstrated by this quote, was to force psychiatry to retract its thinking that the family environment was largely responsible for major mental health issues. It was a tragedy in the making, because can we really say that there is less mental illness now than there was then, and that more people are leading productive lives? Robert Whitaker’s book, Anatomy of an Epidemic, says “no.”

What seemed like a justifiable course of action that the CABF article above relates (stop making parents feel bad about their child’s mental illness), warped into what we have today, where psychiatrists routinely tell people that they have a brain disease, not a malfunctioning environment. Most psychiatrists will no longer even tolerate a parent pleading with them to help them in some other way beyond the drugs. If you don’t already believe this, please read the latest Daniel Carlat interview here. NAMI and CABF have received the bulk of their funding from pharma. The belief that it is just plain wrong to link family trauma to mental health outcomes is seen in the number of people who accept that they have a brain disease. This belief is expressed by the CABF blogger who clearly wants parents to continue to fight the good fight.

I pulled a couple of comments in response to the CABF blog post which illustrates how far the pendulum has swung the other way. The first comment makes me laugh, because, thanks in large part to CABF, pharma and psychiatry’s efforts, she wonders if her kid’s problem is a circuit burn-out issue (almost like the kid needs to go back to the repair shop.) Poster number 2, if I read this correctly, is taking two drugs and has a nine year old DS (diagnosed son?), who is on a cocktail of drugs.

Comment 1
My seventeen year old son is diagnosed with bi polar disorder. He can be very energetic and try exsessively hard to be “good”. on the other hand he can become very irritable, unmotivated and bullyish. Between the cycle of mania and depression he appears to “crash” he behaves as one that has been on heavy drugs and is experiencing withdrawl symptoms. He acts very sedated and calm. Is there something that is taking place in his brain that is similiar to a ciruit burn out that explains this behavior ?

Comment 2
Thank you for that blog- It gave me goosebumps. What an inspiration!

Heather (40) Cymbalta; Seroquel XR
DS (9) BP, ADD, IED (TBD?) 1800 mg Trileptal; 10 mg Abilify; therapeutic level of Keppra; Clonidine for sleep, trying Home School in the fall; DH (39); DD (7); DS (3); Dog

CABF and NAMI are professional organizations that lobby for the brain disease model of mental illness because they won’t accept the blindingly obvious, that parents do play a role in their children’s mental health problems. Organizations like these have made getting good help for my son more difficult than it need be, because psychiatrists block their ears and will not listen to you if you aren’t talking drugs and diseased brains with them. They have been bullied into this position by lobby groups.

Throwing the baby out with the bathwater

An recent New York Times article is generating a bit of interest in the mental health blogosphere. Accepting that Good Parents Can Plant Bad Seeds has a huge flaw in its reasoning, that faithful reader Marian pointed out in her comment on my recent post on the same article. The author of the NY Times article, Richard A. Friedman, M.D., has grasped the obvious fact that no two siblings are alike, and they will be treated differently by their parents, but then goes on to say that some children are just plain not nice and that parents have a limited role in this outcome. All this would be fine except that clearly the parents in this article are grieving for a relationship that they do not have with their children. Something is bothering them, too.

Oh, how far we have fallen from the parent blaming of the post-war generation. We have fallen so far away from “blaming” the parent, that we continue to do damage of another sort. The damage is in not getting the help that is needed to reap rewards from the relationship and to heal. Better outcomes are being sacrificed these days in order to save face as a parent. Many parents prefer to believe that their child is the one with the problem.

The central pitch of any child psychiatrist now is that the illness is often in the child and that the family responses may aggravate the scene but not wholly create it,” said my colleague Dr. Theodore Shapiro, a child psychiatrist at Weill Cornell Medical College. “The era of ‘there are no bad children, only bad parents’ is gone.

The quoted paragraph is hard for me to swallow, because I believe that psychiatry (which seems to never get it right when it comes to mental illness), threw the baby out with the bath water when it eventually stopped even suggesting that parents may actually have something to do with their child’s problems. Psychiatry became the willing handmaiden of pharma, which proclaimed mental illnesses to be brain diseases. The product literature for these dastardly drugs may as well say in big bold letters – Parents – don’t even bother to try to work on your relationships with your children because this is a brain disease, nothing you can do about it.

Dr. David Allen picks up on the New York Times article in his blog, Family Dysfunction and Mental Health and he comes to the same conclusions as Marian and me. He then goes on to say “There are types of psychotherapy which can help people repair dysfunctional relationship patterns, solve problems, and reconcile with their loved ones.”

I know that relationships between family members are at the heart of this and so do most people who have received a mental health label, but sadly, many parents will miss out on the opportunity to heal their children because they refuse to even consider that something in them doesn’t vibrate well with the other person and vice versa. Relationships are a two way street. I have made the same sort observations in my review of After Her Brain Broke. My point about the book was that the author was too afraid to be seen as not the perfect mother that she was actually standing in the way of exploring better help for her daughter.

From my knowledge of Dr. Allen based on his previous blog posts, he loses me when he insists that schizophrenia is a special case unrelated to what is happening in the family and is the result of brain chemistry run amok. That’s why, knowing what I know, it amazes me that he can make the following comment and still believe that schizophrenia is a special case.

It is interesting that next to Dr. Friedman’s article is a still from the 1956 movie, The Bad Seed, about a pretty little girl from a fine family who develops into a young murderess for no apparent reason. Such things, unless a baby comes out brain damaged in some way, happen only in lurid novels and movies.

So, if I read the previous paragraph correctly, Dr. Allen believes that beneath all behaviors is reasonable cause. The only possible explanations I can think of why Dr. Allen still wants schizophrenia to be a brain disease, is that it is now totally politically incorrect to “blame the parents” when it come to schizophrenia. Psychiatry won’t touch that one with a ten foot pole. The other possible explanation is that he truly does believe that people with schizophrenia were brain damaged at birth. This explanation has so far eluded medical science, I wish to point out. I will write more about the origins of this pervasive don’t blame the parent attitude in my next blog post.

Shouldn’t we demand better statistical outcomes?

I write about alcoholism from time to time in this blog because I feel it has much common ground with schizophrenia. There is the condition itself, which I consider a spiritual conflict, but there is also the framework of Alcoholics Anonymous, involving a program, similar in some ways to the day program that our family was involved with for schizophrenia. AA is run by its members, not by medical professionals. In this regard, it is not like our day program.

No program is above criticism, and there is an interesting piece today from the Huffington Post that raises the question, how come, after seventy-five years of AA there aren’t more success stories?

Given that AA started in 1935, that it is still not proven to be successful is beginning to be a bit worrisome. Do drinking and drug problems, alcoholism and addiction, seem to be improving in the United States? (Hint: according to the National Survey on Drug Use and Health, 25 percent of 21-year-old Americans have a diagnosable drug or alcohol problem — far and away most often an alcohol problem.) Don’t you think we might be doing a little better in this area after 75 years?

Robert Whitaker asks these kinds of questions and more in his new book Anatomy of an Epidemic. These kinds of questions kick-started my interest in alternative therapies. Surely, I thought, there should be better outcomes after all these years for schizophrenia than the bleak picture that is usually presented. There are better outcomes, but you’ve got to do a little digging to find out where they are.

These questions need to be explored, not just for AA but for current approaches to schizophrenia and other mental health conditions. Most people will not recover in a program – they will recover when they get to the bottom of whatever it is that is troubling them and when they begin to accept personal responsibility. That is why, as the article points out, a wide variety of treatment options should be available. There is no one size fits all when it comes to mental health.

What is an acceptable trade-off for the meds?

I realize that if I don’t apply myself in this heat, the blog will wilt away. Even though I don’t have much to offer these days, you’re going to get a post anyway. Here are my latest musings about why I am so against meds when any “reasonable” person can see that meds are an important part of treatment.

Meds are a code word in schizophrenia for the doctor is in charge for life if you aren’t careful. Meds never cured anyone, in the context of mental illness, that is. Doctors will be the first to admit this, because after all, there is “no cure” for schizophrenia, is there? There is only management of this “disease.” This means that your life is placed in the hands of social workers and doctors and occupational therapists, who will manage your life to death while urging you to take charge of it, which is difficult (though not impossible) to do on meds, as I attempt to illustrate below.

It is axiomatic that an involvement with social workers, doctors and occupational therapists means your life is dysfunctional. This sounds like an obvious slight to generally good people doing difficult jobs, but, they are there to aid the dysfunctional. If you managed your own life better, there would be no need for social workers and doctors. If you want to get functional, you will eventually have to cut the ties that bind.

When I think of why I hate the meds so much, I always think of a lovely young woman in Chris’s day program. She was pretty and petite and developed into an absolute butterball on the meds. She went from being socially acceptable and very attractive in terms of appearance to being an outcast based on her appearance. She dropped out of the program for a while and when she reappeared, she had shed all the weight and looked great, but her eyes were very, very sad. Fast forward a few months into the program (and the medications). Her mother and sister continue to be slim and fashionable, and Rosita (not her real name) was once again huge. Setting aside her problems that got her a diagnosis in the first place, Rosita now had a further problem of social stigma based on her weight. She was also now a physical oddity in her own family. No doubt her family felt more pity towards her because of the weight. No doubt she felt it. A young woman her age would be interested in dating – how was this going to happen?

Doctors feel that this is an acceptable trade-off for the meds, which don’t cure anyone and supposedly help you manage your life better. At the same time, psychiatrists are offering you no real alternatives to the meds, such as the kind I write about in my blog.
So, yes, I hate the meds because they are symptomatic of the larger problem of hiding unpleasant truths from people while making others glaringly obvious and they prevent doctors from empowering their patients.

Angels in God’s realm

I just don’t have much motivation these days. It’s way too hot. I drag myself into work early and leave early as the office isn’t air conditioned. When I get home Chris and I drive down to the lake and jump in. We paddle around for a while before driving home and preparing a light meal.

Progress report on Chris: We are in a holding pattern. Chris does lots of volunteer work, such as working at the soup kitchen once a month on Saturday morning. He likes to cook and the food looks good on a plate. He is precise, punctual, thorough, and you can be sure if you ask him to do something, he will do the job well. Last Sunday he filled in for me as an usher at church. His once a week voice lessons are over for the summer and will resume again in Sept. He’s reading lots of intellectually challenging books. He also reads the Bible everyday. He is very slowly reducing one of his two meds. But, to speak with him and to observe him from a distance, there is a lag. If you ask him a question, there is a long pause before he answers, if he chooses to answer at all. If you watch him from a distance, you can see that he is hesitant. I used to think this was due the drugs, but I can’t blame the drugs for this one. I consider it the physical manifestation of his internal doubts.

Chris has been seeing an occupational therapist for a year now since he left the psych hospital after his relapse. I am trying to be patient with the fact that he seems to be dragging in the area of getting some kind of training, something that will regularly occupy his days. Ian and I have given up on the idea that he will be heading back to university, at least we don’t see this happening, if it happens at all, until he is 28 or even 30. We have decided to be philosophical about this because we are determined to be low Expressed Emotion, to give him time to knit together who he is, to come up with his own blueprint. He is being helped in this regard with the sessions with the sound therapist that he undergoes on a regular basis. It takes a long time to go from zero to cruising speed when it comes to personality development.

Still, it would be nice if he got going and had something to occupy his days. He has been talking about a three month computer technician course at a local trades school. I notice that despite professing enthusiasm for this, he manages not to make enrolment a top priority, therefore I am not sure if he will be starting in August or not. Ian and I will be away and it will be up to Chris whether he makes this happen. I feel something in him is holding him back.

Dr. Stern has introduced a new possible and surprising direction for Chris based on the last Constellation that Ian and I undertook where she had been groping to find the right words for his non-earthbound personality characteristics. She feels, in her words, it is “being like a good host for a group of people which might correspond, on a concrete level, to a professional activity in the hotel or tourism business.” She recalls his interest in “cooking for the family, for being useful for people, e.g. being helpful for members in the church community, for being a senior student at his college who welcomed first year students, his appeal for high standard places like Grand Hotels, his appeal for being very well dressed, and his interest in learning foreign languages.”

On a spiritual calling level Dr. Stern’s use of the word “host” is very interesting. Recall that Jung felt that addiction to alcohol (spirits) is a spiritual quest. According to the Catholic Encyclopedia:

The function of the angelic host is expressed by the word “assistance” (Job 1:6; 2:1), and our Lord refers to it as their perpetual occupation (Matthew 18:10). More than once we are told of seven angels whose special function it is thus to “stand before God’s throne” (Tobit 12:15; Revelation 8:2-5). The same thought may be intended by “the angel of His presence” (Isaiah 63:9) an expression which also occurs in the pseudo-epigraphical “Testaments of the Twelve Patriarchs.

But these glimpses of life beyond the veil are only occasional. The angels of the Bible generally appear in the role of God’s messengers to mankind. They are His instruments by whom He communicates His will to men, and in Jacob’s vision they are depicted as ascending and descending the ladder which stretches from earth to heaven while the Eternal Father gazes upon the wanderer below.

When it comes to occupation, Ian and I are still getting used to this possible role for Chris. At first we felt that his always being with us, always wanting to help, never asking anything of himself, was a sign of dependency, but I can see now that there is another way of looking at this, in line with my growing understanding that “schizophrenia” is communication of the highest sort.