Wednesday 30 March 2011

The treatment of severe mental illness in children

Childhood is a complex process to understand. The diagnosis of mental illness in childhood is a strong predictor of a worse life on many measures. The social and clinical outcomes are amplified if the diagnosis is in childhood. Those children may never go to university or be able to work in traditional office settings.

There's also the problems wrought by the system which attempts to help these children: mental healthcare and psychiatry. Since the mid-20th century the favoured treatment was drugs. For manic depression the mood stabiliser offered a way to reduce a person's emotions, flattening their affect and stinting their emotional development in the process but it does offer better social and clinical outcomes; our society likes docile people who are like robots and people who experience the full gamut of emotion are disadvantaged in modern Western society. For schizophrenia it's as bad. Most people going through first episode psychosis want one thing: the reduction of the hallucinations and delusions. The cost to their life is massive: the prophylactic use of antipsychotic medication takes so much away from these individuals.

Either of these drugs used in childhood means strong neurochemicals are being used on a developing brain and personality. Daily drugging with these strong chemicals might affect a child's brain development in ways not yet understood or accepted. Studies using MRI scans seem inclusive because of the small sample size in the paper I read however the effect on life expectancy in people with dementia - antipsychotics reduce life expectancy by 50% in one significant observational study compared to those who weren't treated with them for the symptoms of dementia - leads me to believe a doctor shouldn't be prescribing this drugs for long term use in children.

The problem of the antipsychotic drug

The terrible truth about the antipsychotic drug is it may not actually treat the hallucinations and delusions. In fact it doesn't for many people. This effect hasn't been studied in depth. The measures used in trials of antipsychotic medication don't focus on what patients want: the reduction of the hallucinations and delusions. This are represented in two of the sub-measures in PANSS. There are 6 if I remember right. OTher scales are also used. The other elements are nothing to do with what patients want. They're what psychiatrists want and pathologise.

I read a lot into the drug clozapine. This was the first a of a new generation of antipsychotics, the atypical antipsychotics. In early trials it produced exceptional results. The drug was released onto the market and heralded as a saviour for schizophrenics. This is still how it's thought of even though shortly after it was introduced it was discovered the drug was killing patients. The drug causes a condition called agranulocytosis where the immune system becomes compromised. This wasn't detected in the trials which lead to it being licensed. After the problem was discovered Sandoz, the manufacturer, voluntarily withdrew it. Many people died before it was withdrawn.

The psychiatric hegemony valued it so much they lobbied for its return. They discovered that using blood monitoring during the first six months they could halve the risk of death by agranulocytosis. They couldn't eliminate the risk of death but the drug was reintroduced as the best practice treatment for treaatment resistant schizophrenia. Even in the latest NICE Schziophrenia clinical guidelines it is listed as the treatment of choice after two trials of other antipsychotics at standard doses. They do not recommend anything else for treatment-resistant schizophrenia.

In a critical review paper Dr Joanna Moncrieff criticised the evidence for the drug's effectiveness. In the paper she mentions other reports and papers which also call into question the drug's effectiveness. This is based on the psychiatric paradigm of schizophrenia, i.e. the measure of schizophrenia which also includes things like aggression and excitability, which is not solely focused on the primary treatment expectation of the patient. What most patients want is the cessation of the internal experience which has ended them up in a psychiatric ward.

Unfortunately even the most dangerous and supposedly effective drug is not effective enough on the patient's measure. The only qualitative review on clozapine, written by people who work at the Clozapine Patient Monitoring Service which is funded by the manufacturer. published in the British Journal of Psychiatry the authors state the drug reduces the delusions and hallucinations in "some" patients. In another paper from America which detailed case studies t seemed this drug could be used for other reasons, reasons important to psychiatrists but not of primary interest to schizophrenic patients, which related to behavioural control. These are associated with the syndrome but not present in everyone. (search this blog for "clozapine" for the references)

Simply put the treatment may not treat what patients and the public think is the illness. The risks of reducing life expectancy and hindering psychological development when they're used in children is something which is a guess on my part. Antipsychotics have a strong sedative effect which was the primary reason for their invention. They used to be know as major tranquilisers. I think using this sort of treatment on someone for their whole life - from childhood to their early grave - is not the best treatment available.

On another note

Psychiatrists don't really understand what the internal experience is like being on and off these medications. There are many adults who, like myself, chose to remain off medication. It is assumed to be a lack of insight or a foolishness of somekind for a mentally ill person not to want to take medication.

In my opinion this is a lack of insight and competence on the part of the psychiatric hegemony. Let's take manic depression. People experience a wide range of emotions. The highs are fantastic but the lows are awful. The highs can also contribute to the social disability and mortality rate. Having this extraordinary range of emotions also comes with other things. Positive benefits. It's the same with schizophrenia. Dopamine neurotransmitter sites (D2 if I remember right) have been associated with creativity and more sexual partners. The latter has been suggested is an evolutionary reason for the propagation of schizophrenia through the generations. Though in today's society schizophrenia and bipolar (which may have the same genetic root) result in poorer outcomes the 'disease' itself is somehow wanted by evolutiionary processes and has survived even through the most recent shift in civilisation during which the idea that this type of human being was an illness was invented.

On the outside the antipsychotic and the mood stabiliser is highly effective at turning a human being into a docile, socially acceptable average person devoid of any of the good things which come with those experiences of consciousness or emotion.

I have experienced psychiatric medication. I've experienced high doses and polypharmacy. It got to a concurrent dose of 700mg of quetapine fulminate (an atypical antipsychotic used near the maximum dose), 3000mg sodium valporate (a mood stabiliser used at above maximum range), 225mg sodium venlaflaxine (an high dose of an antidepressant for treatment resisitant depression), 50mcg thyroxine (for the massive weight gain) and 10mg of propananol (for the shakes). I also drank a lot and smoked skunk. I was also advised to take an adjunct of 10 1g fish oil pills a day too.

I didn't like that period in my life. I was unhappy pretty much throughout. I am unhappy now but it is a better unhappiness. During the period of drugging I wasn't myself. I was dead inside and dead outside too. All the colour had gone from my internal life and I functioned through my daily life hoping death would come soon.

The medication took away the part of my life I enjoyed. I became a docile and inert lump of flesh ready to work and function without any form of existence or expression. The phrase "dead man walking" (misappropriated from cowboy movies) resonates with me about how I was at the time.

I am a person who values my emotions and creativity and passion and all the other things which comes with mental illness which the drugs take away or inhibit. Little research is done into the value to the individual of what psychiatrists call a mental illness. Yes. It means a worse life for the individual, but the methods of psychiatry are not the right way to deal with them. Psychiatric drugs don't really help the individual much and for many individuals the drugs remove too much of their individuality.

The truth is there are people who know the research and live the experience but chose to remain off psychiatric medication. I am not the only one. I remember one of those serendipitous moments which, if I were paranoid, would freak me out. After a talk on the asylum system I popped into a pub to write my thoughts. Sat a a table opposite was a few students. I asked for a light and they asked me to sit with them. I chatted about what I was writing and thinking. Most of them weren't interested but one or two were. One of them was a girl who was older than the rest of the group. They were on a day trip from university and were all studying arts courses. I speak honestly about my experience of mental illness in public and it can cause people to self-disclose when they ordinarily wouldn't.  She'd had schizophrenia as a child and was hospitalised for a couple of years. She'd been on medication and she'd been through the whole psychiatric system bullshit. Now she was at university. A little late but she'd made. She was excellent at what she did. Her peers spoke of how she picked up a brush and was an expert instantly. They were younger than her of course but she had had a lot of barriers in front of her path. She was happy. She was satisfied. In her life, at that moment in time, she was doing well. She was also off medication. She was proud of it and she felt being off them contributed to her happiness and her talent.

I wish I could remember her name. I gave her my Facebook details but she never contacted me. I hope her life is better than mine at the moment. Let her story be the sort of thing that doctors aim for when they're treating schizophrenia in children. They shouldn't take all the good stuff from the lives of children with severe mental illnesses using drugs. The aim should be to help them to survive and help remake this world so all types of people can succeed.

With support people can learn to self-manage without medication. It is a hard processes but it is what some patients want. I don't need to cite the few studies which show that low and no dose medication approaches with alternative paradigms of treatment may offer better outcomes. The WHO IPSS is enough for anyone to question the validity of Western psychiatric treatment as a good solution for the lives of people with schizophrenia.

The fact is the drugs contribute to the reduced life expectancy. They may cause brain damage. Certainly if they're used while the brain is developing there is an increased risk. There is the risk for the individual's psychological development if they are drugged out of important personal childhood experiences. The current solution proposes a drug addiction for life as a treatment. The treatment for schizophrenia at least may not achieve what the patient wants which is the reduction of the delusions and hallucinations. Till drug companies and psychiatrists start prioritising what patients want there may be no solution to this other than psychological therapies which help the person deal with them. There are alternative forms of support too and interventions where society and social structures need to be changed.

The priority is greatest in the treatment of children because fucking it up with them has far greater impacts in the long term.

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We It comes in part from an appreciation that no one can truly sign their own work. Everything is many influences coming together to the one moment where a work exists. The other is a begrudging acceptance that my work was never my own. There is another consciousness or non-corporeal entity that helps and harms me in everything I do. I am not I because of this force or entity. I am "we"