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Living with a life-threatening allergy has an incredible impact on a person’s life. Not only is there the stress of avoiding that allergen completely, there can also be a huge psychological impact. Andree Kuypers delves into this issue.

Fear Factor

Living with a fear of dying is not something that most of us consciously think about in our day-to-day lives. But it is a reality for many children coping with potentially life-threatening food allergies.

For these children, will there be long-term psychological effects from coping with food allergies and how much does fear of an allergic reaction impact on their lives?

These are questions I have asked myself over the last few years as I have observed how my 11-year-old daughter copes with her peanut allergy. Already predisposed to anxiety through some dodgy familial genes, the diagnosis of her peanut allergy seemed a really cruel blow. Suddenly, outings that Natasha took for granted have become extremely frightening. She refuses eat at restaurants, and sleeping over at a friend’s place carries with it an element of fear. At the time of school camp she had to cope with being away from home and the fear of entrusting her food preparation to a stranger.
Dr Brian Broom, a Christchurch allergist with training in peadiatrics, psychiatry and psychotherapy, says it is not common for children with one food allergy, for example, peanut, to express a lot of anxiety. He can, however, think of children who have a wide range of food allergy from infancy — where five or six foods have to be avoided — which causes parental distress and therefore a worried child.

“If the mother is over anxious, the child feels controlled and these children become quite focused on symptoms and what they can and can’t eat,” he says.

Dr Broom says children aged between three and seven years actually impress him with how quickly many of them adjust and become scrupulous about avoiding food and he believes children are quite self-managing.

Quality of life

I have often wondered about the implications of having this relentless focus on food and what can and can’t be eaten. Young children with food allergies are often told by parents “eating that food will make you sick”. Could this lead to these children developing an “unhealthy” attitude to food and even, ultimately, an eating disorder born out of fear of an allergic reaction?

Dr Broom says eating disorders are more to do with control, identity and self-image and, reassuringly, he has never seen a food allergy lead to an eating disorder.

Quality of life for these children also suffers and research conducted at the University of Southampton suggests that children with peanut allergy have a worse quality of life than those living with diabetes. In addition, they worry more about the potentially life-threatening implications of their condition.

The study involving 40 nine and 10 year olds, half with peanut allergy and half with insulin-dependent diabetes mellitus, found that young people with peanut allergy felt more threatened by potential hazards within their environment, felt more restricted by their allergy regarding physical activities, and more worried about being away from home. Two of the children even said they were scared of dying when they knew peanuts were nearby, for example, when visiting a supermarket.

In contrast, youngsters with diabetes made comments about “restricted” foods their siblings were allowed to eat but they were not and the size of their own helpings, but none mentioned a fear of dying.

Dr Broom agrees food allergy does affect these children’s quality of life with the ethos of anxiety around it and the restraint on what children can do.

This was highlighted for me on a recent trip to Sydney when I mistakenly thought the “Pancakes on the Rocks” restaurant would be a “safe” place for us to eat. After much consultation with at least half a dozen non-English speaking kitchen staff and waitresses, I established that the pancakes were cooked on the same grill as they roasted nuts. They were off the menu for my daughter and I felt very keenly the unfairness of it as she sat and watched us all tuck into these magnificent pancakes.

On reflection, this incident affected me more than it did Natasha – her acceptance and her coping skills, despite her underlying anxiety, continue to impress me.

Character building

Dr Broom says with peanut allergy, it is possible to get back to the best quality of life because the foods can be avoided. He believes it is about how to make something really creative, positive and character building despite the disadvantage.

I have become more aware of the impact of my own fears and anxieties on my daughter relating to her peanut allergy and how important it is for me to keep this under control and put in place good coping strategies for every situation that arises.

A study presented to an American Academy of Allergy and Immunology Symposium says medical professionals should aim for parents of anaphylactic children to have just the right level of anxiety. The study on the psychosocial impact of anaphylaxis found health-care professionals often encounter extreme expressions of anxiety in families, especially parents.

If anxiety levels fell too low (usually after a prolonged period free from reactions), the level of vigilance tended to drop as well, the study found. When anxiety was extremely high, family members experienced a disabling level of stress and fear. The study has borrowed the term “Goldilocks principle” to describe an optimal level of anxiety that is “just right”.

The study recommends that professionals can help families by becoming fully aware of how anaphylaxis impinges on daily life, family routines, relationships and individual stress levels. They should provide families with relevant accurate information related to day-to-day coping strategies.

Developing sensible coping strategies has helped our family accept and deal with the implications of living with Natasha’s peanut allergy.

Parents' anxiety

Dr Broom says establishing how risky the allergy is and gauging parental anxiety levels helps determine how families will cope. How much is this parent’s anxiety creating an ethos of anxiety for the child, disempowering the child and moving them into denial instead of acceptance?

“For children, developing coping strategies involves getting inside the child’s head, establishing what they are afraid of and what could happen and creating a safe framework around the child,” he says. “It is all about good information, good education and good training.”

He stresses the importance of realising that all children are different and will cope differently in certain situations. Dr Broom cited the example of a school camp where one 11-year-old can be told to “ take responsibility for yourself” whereas another 11-year-old may need to be reassured and told to “leave it to the teacher and not to worry”.

When considering anxiety levels in children with food allergies, it raises the question of “how much information is too much?” I was horrified when my daughter was first diagnosed with peanut allergy at how much information she was given by her specialist about what would happen to her if she ate peanut. I recall thinking it might have been better if he had supplied me with this information first so I could come to terms with it and then “gently” pass it on to her outside of the clinical atmosphere of the specialist rooms.

Delivering the message

I discussed this with Dr Broom and he stated that in his practice, he deals with people who have been told things by medical professionals in a “bald”, straightforward way. He recommended “warm holding”, a psychotherapy term that means the therapist deals with something difficult by “holding the patient warmly”, that is, supporting the patient emotionally while giving them the information.

“Shocking information needs a warm supportive environment that feels safe when the patient is given the information. You can bear bad news if you hear about it in a warm situation,” he says.

One has to appreciate the doctor’s or specialist’s position, of course, and Dr Broom says the way they impart information could stem from their own anxiety about their patient. The doctor does not want something bad to happen to their patient and they could be afraid that their patient will die; therefore they want to pre-empt that happening.

As Natasha approaches her teens, I know she will face different challenges due to her peanut allergy, as she will spend more time outside the home environment and more time with her peers. I am uncertain how this will impact on her level of fear and anxiety or whether she will feel differently about social activities. Perhaps different coping strategies will have to be put in place to accommodate any changes.

The Food Allergy and Anaphylaxis Network (FAAN) independently surveyed 37 parent/child pairs in attendance at three food allergy conferences in 2002. The findings revealed that most teens (94 per cent) consider social isolation the worst part about having food allergies, unlike their parents who were more concerned about issues of fear and death.

“Research shows that most fatalities due to food allergy occur between the ages of 10 and 19,” says Anne Munoz-Furlong, founder and chief executive of FAAN. “This survey illuminates the reasons why that is. What we begin to see during the transition from childhood to young adulthood – a time of moving out from under the wing of mum and dad and deeper into peer circles – is a shift from fear of an allergic reaction to fear of not fitting in socially because of the food allergy.”

To keep anxiety and fear at low levels for children who suffer from food allergies, the answer lies in obtaining good support, information and education and, very importantly, good communication.

To have information and support is empowering and goes a long way towards allaying fears. Allergy New Zealand continually supports us by providing information and advice, as does our allergy specialist and GP. Communicating openly about fears and anxieties that arise from food allergies is important as it allows issues to be talked through and decisions made on how best to manage them.

Living with allergy is not a death sentence and although it will impact greatly on these children’s lives, it will build their character and be an integral part of what shapes them.

Check list

To reduce anxiety regarding anaphylaxis, here is a checklist you should go through.
Ensure you have:

• A written Emergency Action Plan agreed with your doctor (download one from ASCIA’s website www.allergy.org.au/aer/infobulletins/index.htm)
• Communicated your Emergency Action Plan to your family members, caregivers, work colleagues, school staff or other appropriate people
• Practised your Emergency Action Plan regularly
• All prescribed medication in an easy-to-find, clearly marked container
• Regularly checked “best before” dates on all medication
• A MedicAlert emblem
• A personalised emergency card (available from Allergy New Zealand)
• An Epipen trainer that you have practised using (available from Allergy New Zealand)