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“I wish he was a fussy eater……..!”
I met Charlie-Jo in the eighties when she was a teenager and her frantic parents asked for help with her eating disorder. The immediate assumption was that here was another young woman who had a skewed relationship with food, but when we read on into the file, we learned that C-J had Prader-Willi Syndrome, moderate learning disability and her eating habits were a part of her condition.
Prader-Willi Syndrome is a genetic disorder caused by defects to chromosome 15, resulting in damage to the hypothalamus, which leads to growth problems. Mild to moderate learning disability with often challenging behaviour, poor muscle tone and some eye problems are also features. People with PWS gain weight rapidly and are constantly hungry, meaning the desire to eat is overwhelming and this is a major cause of the behaviour problems. They have damage to the area of the brain that tells them they are satiated.
C-J was never ever full, no matter what she ate. Her parents had gone through the process of securing all food sources from the time she was able to get around independently, such as locks on cupboards, putting the fridge into a pantry which was kept padlocked and removing all food items from her reach. As she got older and taller and stronger, this was a constant challenge. It also meant her younger siblings had no freedom to access food either.
The crisis that brought C-J to the attention of the community team was that her mother had hit an insurmountable challenge; Charlie-Jo had begun to eat non-food items. Mum struggled to explain how her daughter had ingested most of the woodchip wallpaper from her bedroom overnight for some weeks, also the foam carpet underlay and the inner stuffing of pillows and cushions. The candlewick bedspread was bald and the hot water bottles were chewed.
It’s not just those with this condition who present as having problems with eating the wrong thing. Pica, the habit of eating non-food items, is prevalent in many cultures and among groups ranging from pregnant women to toddlers and people with autism and learning disability. Substances ingested range from paper and earth through to coal, leaves, metal, chalk and glass. Explanations include an underlying deficiency in zinc or iron that the sufferer is subconsciously seeking to address through eating substances containing these elements.
In those with developmental disability, who have not been diagnosed with a genetic condition like PWS, it is thought that the causes are possibly related to social attention, demanding or avoiding or sensory feedback. In institutionalised people with profound learning disability, we would see many cases of pica that were attributed to boredom and sensory seeking.
Of course eating non-food items can carry potentially fatal risks. Poisoning, tissue damage and internal injury or intestinal blockage are the obvious ones. It may be that you are unaware of the individual’s eating habits until faced with the medical emergency it brings. A man I knew in long-stay hospital became very unwell and was taken to the emergency department, where x-rays revealed he had ingested a large metal object. Once he had surgery to remove this item, numerous other non-food objects were taken from his intestines and stomach. These included coins, stones, toys and the original object, which was a brass doorknob. Also recovered was the charge nurse’s missing wallet, with contents intact.
How to help
What can you do if you know or suspect someone has pica? Well, as in the case of any challenging behaviour, you might observe for antecedents and consequences that would help you offer alternatives, such as diversionary or distracting techniques. If you suspect that sensory feedback is the reason, providing safer alternative sensory stimulation is an answer; perhaps an electric toothbrush or flavoured toothpaste, or strongly flavoured food like spicy or tart things.
Consider the choice of pica items; in people who seek and ingest cigarette butts (not uncommon) there is a possibility that they have become addicted to the nicotine like any smoker. Nicotine replacement might be an answer. In the case of someone who eats earth or sand, dry, crunchy muesli could be a substitute. Silly as it might sound, many people with learning disabilities have very limited taste experiences, as their diet is usually managed by others who are less adventurous in their choices.
Another character I knew had a habit of eating soap and bubble bath, resulting in all of these items being held under lock and key in the ward. This was highly inconvenient and meant any bathing or hand washing was a faff to say the least; none of her fellow residents could independently wash because staff members had always to unlock the soap and shampoo. With 30 people living together in the ward, it was nigh on impossible to observe this lady all of the time.
A new nurse from overseas came up with a whacky idea – she arrived on duty with a bag of Parma Violets, which she introduced to our lady to try. This proved a huge success and the soap eating became noticeably reduced. Of course, we had to take extra care of her oral regime to avoid the decay, but the quarter-pound of sweeties did the trick. Barley sugars, acid drops and pear drops had a similar effect.
In all cases, it is important to have the individual undergo medical examination. This would be needed to ensure there is no ongoing physical damage from the habit, either in terms of internal injury or poisoning. Blood tests might be helpful to rule out the latter and also to check for underlying causes such as mineral deficiencies. Dental checks are also recommended to ensure that no tooth or gum damage has resulted. Whatever you do, do not assume that this intriguing behaviour is an unavoidable feature of profound learning disability. It may be that the habitual oral sensory seeking is slowly destroying the health of the individual. Eating glass, sticks, stones and plastic can be fatal.
The Challenging Behaviour Foundation has a useful factsheet on pica with case studies. Download it here.
Ginny Tyler – QCS Learning Disability Expert Contributor