Samantha? Suffering from pervasive refusal syndrome? I couldn't believe it. Pervasive refusal syndrome (PRS) means refusing to interact with the world, and Samantha had asked for psychiatric help to cope with her severe ME (myalgic encephalomyelitis). 'If she is actively seeking help, she can hardly be refusing to interact,' I said to her doctor. 'Yes she can,' he replied, 'If she refuses to do what her psychiatrist recommends.'
Samantha is one of many children today in a no-win situation. Under the definition of this syndrome, by exercising her legal right to refuse treatment - even treatment that is unsuitable - she is considered mentally ill.
The consequences of disagreement between doctor, child and parents can be horrific. Samantha's doctors had never encountered such a severe and long-lasting case of ME. They could not see how something often called 'chronic fatigue syndrome' could produce continual vomiting, even when being fed by tube. So this young girl ended up on the at-risk register.
Police and social workers swooped down on her home to take her back to hospital. It made no sense. She had stopped vomiting and was putting on weight. Then I read the advice to psychiatrists about this new psychiatric condition.
PRS is not an illness, but a collection of symptoms. Doctors are not encouraged to identify the cause, but to help recovery by forcing children back to normality.
The illness is supposedly most common in girls aged 9 to 14, and was first defined by Lask et al. (Arch Dis Child, 1991; 66: 866-9) as a 'potentially life-threatening condition manifested by a profound and pervasive refusal to eat, drink, walk, talk or care for themselves in any way over a period of several months'. Confirmed or suspected sexual abuse and/or domestic violence may play a part. Treatment can involve tube-feeding to stop the child starving.
However, where severe physical illness shares the same symptoms, there is much potential for confusion and injustice. A child with severe ME can be physically unable to
speak, swallow, walk, move around or care for herself, and may find social contact too demanding, giving the impression of social withdrawal. Heart rhythm abnormalities, hypotension, failure to thrive or gastrointestinal abnormalities can result from malnutrition as well as from ME.
A child with ME may collapse, but so will a child who, as a psychiatrist sees it, resists efforts to make her perform. Physiotherapists assume that the muscles of such a child are capable of normal functioning once built up again, but abnormal lactic-acid levels and other physical abnormalities are common in ME-affected muscles. A misdiagnosis could therefore lead to more damage.
A diagnosis of PRS is not possible if organic illness can explain the symptoms. Where a previously normal child has a severe case of ME following a viral infection, it can reasonably be assumed that the illness is physical in origin. Even according to Lask et al., physical illnesses must be excluded before making the diagnosis of PRS.
But even then, there is a potential for error. As PRS is thought to reflect severe post-traumatic stress, any severe physical illness - such as severe ME, where a child may be unable to think clearly, recognise his parents or even breathe - may be a predisposing factor.
Clearly, a psychiatrically ill child who retreats from the world to the point of starvation desperately needs help. The team treating a child with supposed PRS is encouraged to stick together to avoid the family becoming too close to any one individual who may reinforce the family's own views. But this could mean that a doctor or nurse who might come to understand that the child's illness is physical will feel unable to develop this idea unless he is willing to go up against the majority view. How often have we heard of a tragedy resulting from a physician not making a stand against his peers?
Chillingly, the literature on PRS talks of 'physical or chemical restraint'. The idea behind this is to protect the child and others from aggressive outbursts that might occur. Nevertheless, studies of PRS warn us that one of the main dangers of treatment in hospital is that the staff can become punitive towards the child. If your child were being punished for being ill, what would you do? Take her home? Think again.
In his report on PRS, Lask says: 'If the child expresses a clear wish to return home and . . . the parents are able to accept and work on the fact that there is a psychological explanation for their child's illness, then a gradual return to the family home is indicated.'
This sinister instruction allows for no possibility of a misdiagnosis. Another report on the management of PRS (Clin Child Psychol Psychiatry, 1998; 3: 229-49) states that removal of the child from therapy is a major problem and lists it as a 'specific problem behaviour' in the family. 'This is often the result of a failure to fully accept the diagnosis plus the overprotective nature of the parents,' say the authors.
So, if you dare to challenge the diagnosis, you are an overprotective, problem parent and you could lose your child. This is pure 'witchhunt syndrome'. Admit you're a witch and repent, and we'll let you go; say you're innocent and we'll burn you. In the 21st century, we are telling people to deny that their children are physically ill just so they can get them out of hospital.
Jane Colby is a medical educator and writer, and is currently also chief advisor to the Tymes Trust, a charity dedicated to The young ME sufferer (01245 263 482).