Dealing with the emotional effects of food allergy in the family
Mel Fenson, better known to many of you as Pig in the Kitchen, explores the impact serious sensitivities to food can have on children and their parents - and how the stress can be managed and minimised.
Meanwhile at a school in Kent, Jess eats at a table with the other children who have food allergies. And they're all required to wear a star-shaped badge.
The sentiment behind these precautionary measures can be viewed as admirable; teachers are trying hard to ensure the safety of children with food allergies. Yet these policies serve to underline children's 'difference' on a daily basis and take little account of their feelings.
Safety is important but so is quality of life
Increasingly, allergy specialists are realising that focussing solely on preventing physical reactions to an allergen may not always be enough. There's a growing understanding that food allergies can result in a lower quality of life for certain sufferers, and that the negative psychological effects need to be acknowledged, and addressed.
Dr Gary Stiefel is a Paediatric Allergy Consultant at Leicester Royal Infirmary (LRI) and he is convinced of the need to consider the psychological impact of food allergies on children. He says, "having a food allergy can result in social isolation, which can range from not going to birthday parties, to teenagers not going out with friends due to the fear of a reaction."
A supportive approach from clinicians and clinics
His allergy team takes a hands on, supportive approach when children come to clinic, providing information about how an individual's allergy is evolving and keeping families up to date with current thinking on food allergy desensitisation. During a typical visit, parents and children see a specialist consultant, a specialist allergy nurse and a specialist allergy dietician. This three-pronged approach ensures that families have ample opportunity to receive information, ask questions and assess how their child's allergy is evolving. This, Dr Stiefel believes, "empowers families and children to manage their food allergy better, and also alleviates anxiety about their food allergy".
Senior dietitian at LRI, Kristian Bravin, concurs with Dr Stiefel's view on keeping children and parents up to date with current thinking on food allergy management. He patiently explains, often to understandably sceptical parents, the team's policy of encouraging an intake of the food to which the child is allergic. This reintroduction of food takes place in the home, but is managed very carefully, starting with tiny amounts of the baked allergen. Only certain foods are targeted - those to which children are statistically likely to outgrow their allergy (milk, egg and wheat) - and the goal is to build up tolerance before the child's immune system gets 'switched off' to desensitisation.
Kristian says of the programme, "in Leicester I think we are quite lucky in that there are lots of allergy services, and as we are quite keen on pushing forward, we get fewer children going into adulthood with numerous food allergies". This means that children can enjoy a wider range of foods which reduces their feeling of 'difference' and in turn, bolsters their sense of wellbeing.
CBT or Cognitive Behavioural Therapy as an aid to coping with allergy
Rebecca Knibb, Cognitive Behavioural Psychotherapist and Senior Lecturer at Aston university, uses cognitive behavioural therapy (CBT) to help reduce anxiety in parents of children with food allergies. She provides clear information about aspects of food allergy that parents are unsure about, and uses trainer auto injectors to reduce the fear of what to do in the case of an anaphylactic reaction. Perhaps most importantly, Rebecca helps families work towards accepting that the food allergy will potentially always be there, but that 'it doesn't have to rule their lives'.
Rebecca points out that not all children will feel anxiety because of their food allergy, with many children taking the inconvenience of their condition in their stride. Yet if a child has previously experienced a severe reaction because of food allergy, this can lead to an increased level of anxiety which can lead to a reduced quality of life.
The parents' role
So, what can parents do to minimise the negative psychological effects that a child may experience because of their allergies? As with many issues involving children, change starts with the parents. In Kristian Bravin's experience, "the more worried the parent, the more worried the child." And Rebecca Knibb echoes this viewpoint, "we believe that high anxiety in parents can be related to anxiety in the child. Children learn a lot through watching their parents, and will pick up similar ways of coping with stressful events". It's important, then, that adults work hard to manage their own fears and to reassure their child about their allergies.
Helping children to take charge of their allergy is an important step towards reducing anxiety and fear. Rebecca suggests that parents order trainer auto-injectors - available from any of the injector manufacturers - so that they and their child can practise administering the injection. This helps reduce the fear of the pen itself and also helps to reinforce the procedure in case of an emergency.
The friend's role
Rebecca encourages children to talk to their friends about their food allergy, helping to both educate their peers, as well as reduce the taboo around allergies and potential reactions. Children should be taught from a young age to ask questions about the ingredients in food and, as they get older, to learn how to read food labels and find potential allergens.
Dr Stiefel also firmly believes in empowering children and families to take control of their food allergy. He advocates providing "accurate and adequate education and information" to help families feel confident in managing their allergy. He adds, "it is essential to eat, but you need to look at ways to reduce the risk...of having a reaction, without impacting on quality of life".
The initiatives to combat the negative psychological effects of food allergies are driven by the belief that it is possible for sufferers to live a happy, normal life with a low risk of allergic reactions. This positive message is a far cry from traffic cones and allergy badges, which would be more at home in the Victorian era, rather than the modern age. As medical practitioners continue to explore how families can best be equipped to deal with allergies, the hope is that the newly diagnosed allergy sufferers of tomorrow will find supportive, encouraging attitudes the norm, rather than the exception.
*Some names have been changed.