Helping children face up to food allergy
Action Against Allergy funds what has proved to be a hugely successful psychology service for allergic children and their families at the Children's Allergy Service at Guys and St Thomas' Hospital. Dr Polly James and Roisin Fitzsimmons explain how they can help both allergy sufferers and their families.
School can be anxiety provoking for many children and their families, at different times; starting a new school, transferring to secondary school or managing exam stress. For families of children with a food allergy, there are other challenges.
Food allergy has been shown to have a significant impact on a family’s quality of life and a child’s schooling, with one study showing 10% of the families they surveyed choosing to home-school their child, because of concerns about food allergies.
Parents of children with allergic disease who attended the Learning Centre of the Allergy & Free From Show, Olympia on July 7 heard about the challenges families face in everyday life in a presentation by Dr Polly James and Roisin Fitzsimons, specialists from the Children’s Allergy Service Guy’s & St Thomas’ NHS Foundation Trust.
This service was the first in the UK to welcome a Clinical Psychologist to the team, which was possible with the generous sponsorship of Action Against Allergy. It provides psychological support on a one-to-one basis for children with allergies, and now also, with the introduction of special group workshops, to their families as well.
Practical and creative ideas for anxiety management in the context of food allergies.
Talking about allergies
It can be really hard as a parent or carer to know when to start educating your child about allergies and in how much detail.
Among the many difficult questions parents of children with food allergies face “When do I tell them?” “What do I say?” Understandably parents may feel fearful that they might get upset or worry their youngsters and teens, some parents withhold the news.
But even at a very young age, children can sense that certain foods may not be safe for them to eat or become aware that they cannot eat the same foods as other children. If not told the truth, they might imagine that things are worse than they really are or even that they themselves are the cause of the problem. Although there is no ‘one size fits all approach’ good communication with your children helps everyone in the family cope with whatever changes lie ahead.
Talking with children honestly and helping them express their emotions makes it easier for them to feel safe and secure. As a parent or guardian, you are the best judge of how to talk to your children. Sharing information early on will help build trust and also models acceptance of the diagnosis and helps them to build their self-esteem in the context of having allergies. When children know they are being kept informed, it helps make the experience less frightening. Initiate conversations about allergies, listen to your child, answer questions, and provide comfort and support.
Not just talking to your children, but to their school
Just as it is important to speak to children about their allergic disease, it’s really important to have good communication with the school staff. It can be frightening to send your child off to school and not know what they are doing all day. When your child starts a new school and at the beginning of each school year, make an appointment with your school and school nurse to talk about what your child is allergic to and what to do if they have an allergic reaction.
This is your opportunity to speak to those who are looking after your child every day and hear about their understanding and experience of managing a child who has food allergies and possibly an allergic reaction previously. You will have the opportunity to tell them about your child, so they know what to avoid and symptoms to look out for.
Take any information you have from your child’s allergy appointments with you. We give every child an allergy action plan, which shows what to do if your child has an allergic reaction.You should give a copy of this to the school staff. Remember they are not medically trained, but the school nurse will explain any medical terms or information which is not understood. If your child has an adrenaline device, the school nurse can show the school staff how to use it and explain the signs to look out for and what to do in the event of an allergic reaction.
If your child has been prescribed an adrenaline device (Epipen, JEXT, Emerade) there should be two devices with them at all times. You should give your child’s school two devices, so that they are easily available if they are needed in an emergency. New legislation came into effect on 1st October, which allows schools to purchase their own adrenaline devices. This will enable schools to always have a spare device if the child’s own device is out of date or does not work.
Educate children about their food allergies in a child friendly and accessible way matched to their understanding and developmental stage.
Consider your child’s age. For younger children you could write down any questions they have and write the answers using their language or you could even draw pictures. You could write an ‘Allergy journey’ book together with your child. For example, you could start from the when they were first diagnosed, drawing pictures on a timeline to help them see how the allergies have changed and developed over time.
It is always useful to provide education about anxiety too. Anxiety reactions that mimic anaphylaxis are very common so it is important to increase children’s self-awareness about their body and how it reacts to anxiety. In the children’s workshops we get the children to draw round a child and then fill in the body outline with where they all feel anxiety in their body. This helps them to differentiate allergy reactions from anxiety reactions.
Having a child who worries does not mean your child has an anxiety disorder. We live in a stressful world, and children internalise the stress around them while trying to cope with their own experiences and worries about their world. Sometimes simple strategies can relieve them of some of this stress. It is, however, important to note when difficulties are more entrenched and when you may need more specialist guidance and support to help them.
School meal times can be an anxiety provoking time for all involved: child, parent and school staff. This is where it is essential to communicate with staff what it is your child is allergic to and what they could have as an alternative. If your child is having school dinners, speak to the caterers and discuss options with them, they can be quite imaginative and ensure that your child has a varied and interesting menu.
The Food Standard Agency provides information and training for caterers, so they are aware and can cater for people with food allergies.
Facing social challenges
Be proactive in educating friends and family.
Be patient with yourself about relinquishing control to other family members and close friends. It can feel like a huge and overwhelming step to take to trust another person to look after your child, let alone cook for them. Therefore it is important to do it at a pace that builds on your own sense of success.
You could start by being with your partner and planning a meal together or shopping together for your child. Slowly sharing more responsibility with them or another trusted family member. It may be that after you have prepared your child’s food together successfully, the next time you just observe until eventually you feel you can trust someone else to look after them while you pop out for a short while and even during a mealtime.
First day at nursery is a very frightening time but can really help you to face your fears and learn that other people can understand about good allergy management and keep your child safe. Slowly start to build your network of people who you may be able to trust with looking after your child with planning and preparing for playdates.
Again be patient and kind to yourself and build your confidence gradually. Arrange a date with a close friend or someone who you feel confident that may be able to understand about your child’s allergies. It may be a family who also have allergies!
Begin by staying with your child at a time where they are not expecting to eat. And then perhaps over tea time, until you feel ready to drop them off and pick them up. Most parents who have taken these steps expressed feeling surprised at how accepting and willing their close friends have been to accommodate their child’s needs.
These are important steps to face early on as they help you to feel supported as well as enabling you and your child to experience social opportunities.
Birthdays and celebrations
In many schools it is tradition to share a birthday cake or sweets, when it is a child’s birthday. There may be other times, such as festivals or international celebration days, when new foods are being shared in class, away from the dining hall. These can be difficult times for children with food allergies; there are often foods that they cannot eat and they may feel excluded from their friends and joining in the fun. Similarly in other situations, such as messy play or junk modelling, children may also be exposed to potential allergens.
Children should not feel left out, but communication is key here. Ask your child’s class teacher if there are any activities planned which might be risky for your child and think of alternatives, to ensure they can still join in. For example, if treats are given out at school, you could give your child’s teacher a ‘swap box’, containing treats which are safe for your child, therefore they don’t miss out.
Nut free policies
Many schools have ‘nut free’ policies which, for parents of children with a nut allergy, may provide reassurance, but this is often false. While caterers can provide assurance that meals do not contain nuts, it is impossible to police every packed lunch brought in for hidden allergens. Nuts are not the only allergen which can cause a severe allergic reaction and thus it is impossible to draw a line and ban any allergen which may cause a reaction. Education is essential to empower the child to have the confidence to tell others what they are allergic to and to discourage sharing of food.
Encourage a gradual shift towards the child taking more responsibility for self-management. Involve them in clinics and encourage them to prepare any questions they have for the doctors, nurses and dieticians in advance.
Children need to learn to prepare for new challenges, such as managing their own medical kit and knowing how to use an Adrenaline device. They may need to carry a safety card or medical alert bracelet. Children need to feel they can carry their medical kit without embarrassment.
You could role play social situations by practising communication with peers and adults. Role play allergy management techniques i.e. at a restaurant, at a friend’s house or in a supermarket.
Support your child to tell others about their allergies. You may suggest for their school to do an assembly about allergies or a school project. Some children I have worked with have gone on to train their whole class in using the Adrenaline device.
Some families find it helpful to have a little ‘business card’ for their child with their name and headshot (could be a drawing) outlining either ‘things I can eat’ if they have multiple allergies or ‘don’t feed me’ list of foods, which they can carry around and hand out in restaurants or to friends and family (see picture 1 below).
Creating a child friendly care plan, which has been developed together with your child is also a great way to help them understand their allergies and feel more confident about them.
Take an active role yourself: be trained, update plans, schedule regular appointments with school, prepare questions in advance of clinic appointments, and ask for information to be written down.
Having an allergy is a whole family experience
Having an allergic disease has an impact on the whole family.
You do not need to manage your child’s condition alone and in addition to the tips in this article, there are many resources and support groups available to help families, a list can be found below.
Your first contact should be your child’s medical team who will signpost you to appropriate resources and share information with professionals, such as school nurses and teachers, who are involved with your child’s care.
Having food allergies should not prevent your child from participating fully in school life. By working together with people involved with your child’s care, you will empower your child to have a fun filled quality of life!
Resources for self-directed information:
This article first appeared in Allergy Newsletter No.121. Winter 2017.
If you found this article interesting, you will find many more articles on the management of allergy here and here.
And go here to sign up for our fornitghtly free e-newletter.