CHEMICAL INJURY AND THE ABUSE OF MUNCHAUSEN SYNDROME BY PROXY
By Ann Want
2004
Introduction
I am the mother of five boys aged from 14 to 21, a teacher, and since 1999, National Co-ordinator of the Australian Chemical Trauma Alliance (ACTA). ACTA is a support group for individuals suffering chemical injury / multiple chemical sensitivities (MCS). It was due to experiences with two of my five sons that I developed a particular interest in children with chemical sensitivities. I have been involved with many families of children with chemical injury and chemical sensitivities for over fourteen years. It is from this experience that this talk is based.
The Existence of Chemical Injury in Our Children
There are millions of papers & articles written on this subject. I’d like to quote from three of these. A report “In Harms Way” was published in 2000 by the Boston Physicians for Social Responsibility.
A pertinent quote was:
”An epidemic of developmental, learning and behavioural disabilities has become evident among children. These disabilities are clearly the result of complex interactions among environmental, genetic and social factors that impact on children during vulnerable periods of development. Toxic exposures deserve special scrutiny because they are preventable causes of harm.” (Schettler, et al, 2000 “In Harms Way: Toxic Threats to Child Development, Greater Boston Physicians for Social Responsibility.)
Also in the same year the National Environment Trust, Physicians for Social Responsibility, & the Learning Disabilities of America organisation jointly published a paper: ‘Polluting our Future – Chemical Pollution in the US that Affects Child Development and Learning´.
This documented the exact scope, nature, and source of chemical pollution in the US that was of specific concern for child development, learning and behaviour.
The report stressed: “Understanding this kind of toxic pollution is important because an increasing number of scientists believe that developmental and neurological toxins are partly responsible for a range of physical and mental deficits in children. Such deficits include structural birth defects, mental retardation, autism, attention deficit hyperactivity disorder and adverse birth outcomes such as low birth-weight and prematurity.”
The report “Children’s Health and Environment; a Review of Evidence” presented jointly by the World Health Organisation and European Environment Agency in 2002 stated:
“Children are at risk of exposure to more than 15,000 synthetic chemicals, almost all developed in the last 50 years, and to a variety of physical agents, such as polluted indoor and outdoor air, road traffic, contaminated food and water, unsafe building, contaminants in toys, radiation and environmental tobacco smoke”.
As can be seen from papers by such leading organisations, it is becoming widely recognised that children are vulnerable to the health effects of chemical exposure. Children are not little adults. There are many facts to be considered regarding children & chemical exposure:
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A child’s body and internal systems are still developing. Young children breathe more air, drink more fluid and eat more food per kilogram of body weight compared to an adult. So they can be proportionately more-exposed to chemical pollutants than adults. Children tend to put things in their mouths and spend more time in close contact with potentially contaminated surfaces eg carpets, grass, dirt etc. Past chemical exposure of the mother and father can result in bio-concentration of chemicals in foetal tissues. Thus it is possible for children to be born with a chemical load, before they deal with the chemical exposures of everyday life.
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Lead is a well researched example where a child’s immature nervous system makes this group of people more susceptible.
Over the years I have been in contact with many parents of children with ADHD and autism who have linked many of their health and behavioural problems to environmental exposures. Removal of the contaminants from their child’s environment results in improvement of their condition.
Chemical Sensitivity in Children
A form of chemical injury is Multiple Chemical Sensitivity (MCS). There has been two separate, independent papers published quantifying chemical sensitivity as affecting 12 to 15% of the US population. Multiple Chemical Sensitivity (MCS) is defined in a publication entitled “Multiple Chemical Sensitivity: A 1999 Consensus” in the Archives of Environmental Health ( 1999 volume 54 No 3 pages 147- 149). The widely accepted six consensus criteria of multiple chemical sensitivity are:
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it is a chronic condition, it presents with symptoms that recur reproducibly, it is characterised by symptoms which occur in response to low levels of exposure to chemicals, its symptoms are induced by multiple unrelated chemical agents, its symptoms improve or resolve when exposure is reduced or withdraw
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it involves symptoms which involve multiple organ systems.
Symptoms are many and varied depending upon the individual. They include headache, tiredness, muscular aches and pains, gastro-intestinal disturbances, gastric reflux, asthma, hyperactivity, irritability, fine and gross motor co-ordination problems, lethargy and lack of concentration, skin irritations, recurrent respiratory problems, etc.
Attitude of Medical System
Despite the amazing amount of literature written on chemical injuries and sensitivities, the Australian Medical System does not formally recognise the condition. This is contrary to the German Medical System which formally recognises MCS under the International Classification of Diseases (ICD-10).
The consistency of the condition is evidenced by the previously referenced consensus statement from scientists and practitioners who have dealt with many people with such injuries and sensitivities. Yet no significant studies have been performed by the mainstream medical system other than those indirectly funded by the chemical and pharmaceutical companies or by those in prominent positions with egos set to maintain status quo.
As a result the condition is not covered in university training and an accepted diagnosis does not exist. The plight of children with chemical injury / MCS is therefore of great concern. The treatment by the medical profession, in general, grossly lacks impartial logical and scientific approach. Consistently, over the years, I have found that parents of children with MCS, in particular, have found it difficult to find a sympathetic medical practitioner. When such children are admitted to certain hospitals, if the parents indicate their suspicions and/or observations that their child’s condition may be aggravated by exposure to chemicals, they are dealt with contempt.
An increasing practice by such hospitals when faced with this is to intimidate the parents – more often the mother- with strong inferences of Munchausen Syndrome By Proxy. The result of this is that quite often the child does not receive adequate medical treatment. Tragic results have then been repeatedly observed.
A chemically sensitive child’s condition cannot be verified by traditionally accepted clinical tests. Due to being a ‘sensitivity’, it generally does not follow any accepted pattern of disease or illness. Medical training also does not include training in environmentally induced conditions. There are many instances where families of admitted children have been handled poorly and categorised incorrectly by particular hospitals.
To illustrate how such can be initiated I give the following example:A 4 year old child was admitted to a children’s hospital with intermittent rectal bleeding. The parents had already observed dramatic improvements in the child’s respiratory health after the purchase of a water purifier (they lived in an agricultural area where chemical sprays were used).
The parents had also received the child’s blood test results which showed significant levels of organo-chlorine pesticides and solvents. These results were dismissed by the personnel at the hospital as irrelevant. Tests taken over the period of the fortnight admittance did not find any cause for the child’s condition. The letter written by the attending gastroenterologist back to the family’s Paediatrician stated:”Whilst in hospital we were unable to confirm rectal bleeding”
The letter continued to state “I am concerned that …….. is a subject of factitious reporting of illness by his mother”When the child’s file was later obtained under FOI, these claims could have been disputed. Entries in the child’s file conflicted with such accusations. The doctor on the Ward had nursing file entries such as:”passed bloody stool Fri night” “visible blood described”
The fictitious-reporting-of-symptoms-letter was placed at the front of the child’s file. Chronologically it should have been towards the end. One wonders if it was put there to give an impression of the mother to anyone subsequently accessing that file. The child is now an adult. The parents had observed through his subsequent childhood that overexposure to solvent-based products resulted in rectal bleeding.
This was consistent and resulted from simple observation.Mothers frequently were not listened to by medical professionals, when describing their children’s symptoms and/or behaviours. All too often doctors would make their own assumptions and would not take too kindly to the mothers questioning of these assumptions. However in the case of chemical injury / chemical sensitivities the mother is frequently ‘gagged’ with the real possibility of MSBP allegations being formally made.
The power of using MSBP is that it creates social stigma. It therefore has power to silence mothers through degrading and humiliating them. Often a MSBP allegation is recorded on the child’s medical records. Once this type of suspicion is recorded the mother finds it impossible to obtain adequate treatment for her child if she does return to the hospital. This then results in the mother’s fear of returning to that hospital.
Falsely accusing a mother of MSBP tends to generate a lack of trust in the medical profession. In the majority of cases the mothers of children with chemical injury/chemical sensitivity turn to natural and or alternative therapists for help. In the vast majority of cases this works positively, as quite frequently the child reacts adversely to drug-based treatments. Many case histories indicate that if a chemically injured/chemically sensitive child is allowed to grow up in as chemically free environment as possible their sensitivities/ symptoms greatly decrease, some quite dramatically, by the time they reach adulthood. Professionals abusing the MSBP label should be held accountable for their diagnosis.
The most common problem encountered by parents relates to when they are informed about the diagnosis. The most common result from a diagnosis of MSBP is for the parents to find out about it from child "protection" workers - not the attending doctors. In all other "acceptable" medical conditions the doctors invariably convey the diagnosis directly to parents and discuss management, treatment, follow-up, etc.
So how is it that a "diagnosis" can be made and the diagnosing doctors not discuss this with the parents? Why is it necessary for the diagnosing doctors to conceal the diagnosis? If they are so sure of the accuracy of the diagnosis aren't they then bound by professional ethic to discuss the diagnosis with the parents, appropriate management, and follow-up? If one was diagnosed with diabetes, then medical treatment would be offered, contacts given to support groups, referrals to sympathetic medical professionals etc.
So if MSBP diagnosis is so accurate, why is it ALWAYS left to other people to tell the parents and then statutory procedures administered? Why do the medical "professionals" involved in this diagnosis run away from direct contact with affected parents?
Education
The parents of MCS children face a continual battle to adequately educate their children. The NSW Education Department has been aware of the needs of these children since 1992. The 1995 Toxic Playground Conference highlighted the chemical dangers found in schools. In 1997 the National Children’s Youth and Law Centre from the University of NSW presented a report to the NSW Education Department titled Disability Discrimination in Education in which Chemical Sensitivity was included as a disability not adequately catered for. In March 2000 “The Toxic Playground” book by Jo Immig, was released. In 2002 the book “Safer Solutions” was launched by the then Minister for Education Mr John Watkins.
This book dealt with reducing the use of pesticides in schools and childcare centres, the plight of the chemically sensitive being described.Some overseas experience shows not only understanding but in cases, complete acceptance of children with chemical sensitivities. This is highlighted by schools in Ontario Canada where environment units exist in schools for chemically sensitive children.The integration of MCS children into the education system takes the form of many battles fought by individual parents in order to have the needs of their child met.
To date no policy for the treatment of children with this disability exists within the Education Department. A few parents have achieved quite a high level of accommodation in the schools for their child whereas the majority have not, leaving many with the option of withdrawing their child and either enrolling them in Distance Education or Home Schooling.
All too often we see intimidation of parents by school personnel accusing the parent of making up the problem: they are making their children sick etc. This is often a response illustrating a lack of desire to deal with the problem. The needs of each child with MCS differ and each case needs to be treated on its own merit. However there are simple guidelines that will enable the integration of most MCS children. These include:
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reverting to less toxic cleaning products, employing steam cleaning, or fibre techniques.using water based textas, whiteboard markers, liquid paper, etc instead of solvent based productsNot wearing perfumes and aftershave lotion in the presence of these childrenNot applying spray-on deodorants, in the presence of such children or at least alerting the child so they can remove themselves from the vicinityThe provision of a toilet that has not been treated with air freshenersIf Integrated Pest Management controls fail and chemical application is required: prior notification of pesticide use in and around the school, so the child or parent can take appropriate action (this may involve the removal of the child for a period of time). Ideally pesticide use at the beginning of the Christmas holidays to give the maximum time to out-gas. Having adequate ventilation in the classroom.
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Some parents have been successful in obtaining air purification systems for their children.
Quite often it is easier to intimidate the parents than to provide this kind of accommodation. Unfortunately, quite often the mere fact that a child may spend so much time away from school due to an incompatible school environment will often bring them to the attention of child protection workers.
Child Protection Workers
As mentioned previously, a child with chemical injuries or sensitivities may exhibit behavioural effects. For example some ADHD or autistic children are the result of chemical injury. However such challenging behaviour becomes a nightmare for the parents if they come under the attention of children protection workers. The nightmare is perpetrated by individuals who have no knowledge of the child’s needs. This has been adeptly highlighted by a recent inquiry investigating a certain State child protection agency.
Records obtained under FOI, by parents, have shown there have been many erroneous cases of parental harassment involving children whose medical condition requires special circumstances. Parents are often targeted if their child has Chronic Fatigue Syndrome (CFS) or Multiple Chemical Sensitivities or medical conditions associated with challenging behaviour, or if the child cannot regularly attend school.
Records have shown that actions have been taken against parents solely on the basis of an ‘inferred’ Munchausen Syndrome By Proxy (without hard evidence) when a parent (acting in their lawful capacity) disagrees or complains about a particular doctor’s diagnosis concerning their child. In the past 6 to 8 years there have been countless numbers of cases involving children with well recognised medical conditions such as autism, and ADHD where child protection personnel have wrongly blamed parents for their child’s challenging behaviour.
Countless Child Protection Orders have been issued, disabled children removed from their families and immeasurable harm caused to good families because child protection officers cannot or will not recognise the causes of such behaviour.When parents finally access their records through FOI, there are likely to be examples of embellishment and serious inaccuracies.
Reports are usually present which blame parents for such behaviours. Although the parents may have originated contact with these departments in order to obtain assistance, reports are commonly found falsely suggesting parental abuse or neglect in place of recording parent’s formal request for assistance and the lack of assistance provided.
It is now interesting that parents in that State, are now being told of “long” delays processing FOI applications, and told they can complain to the Information Commissioner. Some parents say they have received letters 6 months later asking them if they still want the information. The concept of Munchausen Syndrome By Proxy has become an uncontrolled monster.
CONTACT:
Australian Chemical Trauma Alliance
National Coordinator
Ann Want
309 East Bonville Rd Bonville NSW 2441
Ph/Fax: 02 66 534 531
Email: acespade@northnet.com.au
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