The mainstay of allergy management is food avoidance, which must involve education and advice from a registered dietician. When appropriate, your child and child’s carers must know how to recognise and treat allergic reactions and there should be an emergency plan in place. The NICE guidelines (2011) recommend that information about which foods to eat and food labelling be given to you before starting an elimination diet. Elimination diets are a great challenge.
As discussed previously, elimination diets, or just living life without allergens, can have social, psychological, financial and nutritional burdens. Food preparation can often be more time-consuming and shopping for allergen-free foods can be more expensive. However, on the positive side, it can also provide a healthier diet for your child and wider family, if carried out correctly and carefully. The dietician again is key in providing both individually tailored education and empowerment to the family and child about ways to live everyday life, while avoiding the food they are allergic to. Living with food allergies is a challenge but can be safe, manageable, nutritional and enjoyable. This chapter runs through the best ways to manage your child’s everyday life with food allergies. However, this is no substitute for time spent with an allergy dietician. They may be difficult to get an appointment with but this should not stop you asking.
Inevitably, you will over time become an expert on what your child can and cannot eat. However, it is worth becoming that expert as early as possible to save time and a lot of stress.
Always check the full ingredients list for allergens and not just the allergy advice box on the food packet. Most, but not all, supermarkets provide ‘free from’ lists of all of their free from foods. These can often be accessed online from the supermarket’s website. Additionally, most supermarkets list ingredients for each food and drink product, as well as allergy information, on their websites. While this can be time-consuming initially, it allows you to order your groceries online or alternatively saves you time when you go to the supermarket. Always check the labels anyway, and make sure that your lists of ‘safe’ foods and safe brands are up to date (see here). Allergy advice boxes are not obligatory on packaging, therefore always read the full ingredients list.
In the European Union, food labelling of 14 allergenic ingredients is compulsory. These regulations, published in 2011, are due to be reviewed and updated in 2014. The new recommendations for labelling will include allergen labelling provision not just for pre-packed foods but also for foods which are sold non-packed or pre-packed for direct sale. The three-year transition period is to allow businesses to make the necessary changes to their processes and labelling designs in order to meet the provisions laid out in the legislation.
The ingredients that require labelling are:
1. Cereals containing gluten (wheat, rye, barley, oats, spelt and Kamut): There is no requirement in law for manufacturers to use the term gluten itself in the ingredients list, just the name of the cereal. However, best practice recommends the use of both terms.
2. Crustaceans (crab, lobster, crayfish, shrimp and prawn): The common names of the crustaceans are used in labelling.
3. Egg: This encompasses all species of eggs, including hen, duck, turkey, quail, goose, gull and guinea fowl.
4. Fish: The common fish name will be used in labelling unless there is no common fish species, in which case the generic name ‘fish’ will be used. A list of common fish names can be found in the Fish Labelling Regulations 2010 (see FSA website, on here).
5. Peanuts: Includes groundnuts and monkey nuts. Refined and unrefined peanut oil is also labelled with ‘peanut’.
6. Soybeans: Labelled as ‘soya’ or ‘soy’.
7. Tree nuts: Almond, hazelnut, walnut, cashew nut, pecan nut, Brazil nut, pistachio nut, macadamia nut and Queensland nut – the type of nut will be listed in the ingredients panel.
8. Celery and celeriac: Refers to any part of the celery plant that has been used.
9. Mustard: Refers to the mustard plant and other forms of it.
10. Sesame seeds: Includes all products derived from it such as tahini and houmous.
11. Sulphites (in concentrations over 10 parts per million): Labelling is only required if it has been deliberately added in the preparation of the food. Referred to as ‘sulphur dioxide’ or ‘sulphites’. The chemical name may also be used.
12. Milk (including lactose): Dairy products such as cheese, butter, yoghurt and cream may not have milk labelled. However, milk needs to be clearly labelled in unfamiliar dairy products such as mascarpone or fromage frais, and in products in non-transparent packaging where the name does not clearly refer to milk. Components of milk such as casein or whey should be declared with reference to milk.
13. Lupin: There is cross-reactivity to lupin in a significant number of people allergic to peanuts. The term is used for both lupin seed and lupin flour.
14. Molluscs (oysters, clams, mussels, squid, abalone, octopus and snail): The name of the mollusc is used in labelling unless it is a rare mollusc, in which case the generic term ‘mollusc’ will be used. For common molluscs please see the Fish Labelling Regulations 2010 (see FSA website, below).
The Food Standards Agency (FSA), in its guidance to food manufacturers, producers, retailers and caterers, recommends that the common names for allergens are used in labelling. The definitive source to food labelling can be found on the FSA website http://food.gov.uk/policy-advice/allergyintol/
Many manufacturers provide advice about the potential for unintentional contamination with allergens. However, the absence of a ‘may contain’, also known as an advisory warning label (AWL), does not indicate that a food is free of potential cross-contaminants. The use of AWLs on packaged foods is voluntary. This means that there are huge inconsistencies in labelling between manufacturers, within product categories and between different countries.
While awareness of the dangers posed by allergenic foods has increased within the food industry over the past 20 years, understanding is still far from complete. Foods can become contaminated with residues of allergenic foods at many points along the food chain, including harvesting on farms, storage, transportation and during manufacture. Typically, different products may be produced on the same equipment line, some containing allergenic products and others not. While many companies make efforts to clean shared equipment between product runs, this is not the case for all manufacturers and the effectiveness of such approaches is unclear.
There are reports in the medical literature (see References here) of potentially life-threatening reactions due to peanut contamination in confectionery and biscuit products without AWLs. On the basis of this, it is assumed that the presence of an advisory warning does not indicate the contamination risk, or, the absence of an advisory warning label is not indicative of no or even low risk of contamination.
In the Resources chapter at the back of this book (see here) is a table of the major food allergens and other names to also look out for when reading food labels and ingredients. It is worth signing up to the allergen alert services, such as those by the FSA at http://food.gov.uk/policy-advice/allergyintol/alerts/#.UkQANBZTE20 or the Anaphylaxis Campaign (http://www.anaphylaxis.org.uk/living-with-anaphylaxis/product-alerts) for product safety alerts.
Remember that every allergic child is different, not just in exactly what they need to avoid but also the degree of avoidance required. Children with non-IgE mediated reactions (see here) are not at risk of anaphylaxis (see here) and when symptoms are mild, you may even choose to introduce small amounts of the food into their diet and manage symptoms such as eczema with steroid creams. However, this is in stark contrast to the child with multiple IgE type food allergies (see here) and a history of severe reactions with asthma, who has a high risk of anaphylaxis and needs to have far more stringent avoidance strategies. Even among children with immediate allergies, there is a difference in levels of risk. For example, a child with egg or milk allergy who is already able to tolerate the foods in the baked form may be at lower risk of severe reactions. You may be able to adopt a different approach to allergen avoidance, especially in foods carrying advisory labels.
Two things are important when considering avoidance. Firstly, discuss the issue of allergen avoidance, specific to your situation and your child, with your specialist and dietician. Secondly, develop the skills of risk assessment.
As a parent you need clear labelling of food products with possible allergen contamination so that you can make an informed decision about the level of risk that you may take. However, clear labelling is not available. It is not even the case that the wording on the AWL gives useful information as to the potential for cross-contamination in a product. A label that says ‘may contain’ and a label that says ‘made in a factory that uses…’ are no different in the information that they provide and therefore they hold no weight in terms of risk assessment for the potential of cross-contamination of the allergen in that food. The ability of your child therefore to tolerate foods that have an AWL should not be interpreted as reflecting a mild nature of their allergy and thinking as such could put them at risk of a severe allergic reaction. Tolerating a food with an AWL is most likely because none of the allergen found its way into the product. The risk assessment that you make as a parent relies not just on the likelihood of contamination, but also whether the degree of contamination is sufficient to provoke an allergic reaction in your child.
Health professionals also need to take into consideration a host of factors when making a risk assessment in order to provide you with appropriate advice with regards to AWLs. The most important factor is considering your child’s allergies individually. For each child, the balance between nutritional requirements, quality of life and risk needs to be carefully assessed. Specialist paediatric dietetic input is crucial for your child and family. In addition to ensuring that your child has a nutritionally adequate diet, specialist dietetic advice linked specifically to your child’s allergies, along with the advice and support available through an allergy clinic, will allow you to be better informed and therefore can reduce the risk to your child of an accidental reaction.
The majority of fatal allergic reactions to peanuts occur outside the home environment and, on this basis, additional caution is recommended when eating unfamiliar foods in an unfamiliar environment, irrespective of the presence or absence of AWLs. It may be best for your child to follow more stringent dietary avoidance when outside the home environment. The extent to which a health professional might recommend avoidance of products with AWLs should depend on a range of factors, including the presence or absence of risk factors for severe reactions and the availability of and familiarity with emergency rescue medication.
As the parent trying to shop for your child, labelling has big implications and it may be one of the reasons why you choose to prepare and cook at home. Due to the ongoing risks of exposure, it is important to recognise the early symptoms of an allergic reaction and treat it appropriately. Reactions will happen from time to time, it is almost inevitable. It doesn’t mean that you have failed, but it is important to try to learn lessons. Thankfully, severe reactions are rare.
Education should extend to members of the community, such as teachers and school nurses. You and your child should receive information about patient support groups, which often have useful online resources. In order to be able to treat anaphylaxis in the community, your child needs to be prescribed an adrenaline autoinjector. This and all the issues above need to be discussed with your doctor.
All parents prepare, perhaps that’s one of the main tasks of managing a child’s day, but for your allergic child preparation is vital and becomes the key to staying safe. Cross-contamination, where allergens are transferred to otherwise non-allergenic areas in the home, is a risk with food allergies. Here are some ways to manage this risk.
It is difficult to be prepared and organised when you are anxious and sleep deprived. However, a few bits of organisation, like writing notes to remember your questions for healthcare professionals and preparing shopping lists and writing down ingredients, can help enormously in the daily management of your child’s allergies.
If I could rewind and start again, I would have written everything down so when I went to the healthcare advisors, the GP and the allergy test I would have felt more in control and not got so flustered. If I had the phone call from the dietician again, I would ask her to put her advice in writing and taken it to the allergy test with me.
EMMA, MUM OF HUNTER
Whatever the circumstances, whether it is preparing your child for nursery and preparing the nursery for your allergic child, managing trips to friends or family, to a restaurant or party, planning and preparation are key. Once you accept that, it quickly becomes second nature.
Always read labels and make sure your children or child always has his or her medication. Start that at a young age. My son has self-carried since he turned five years old. Ask many questions when at doctor visits, even take notes if you have to. Remind doctors and hospital staff of your child’s allergens as they can be overlooked. Be consistent with holidays and meals, always. Never let your guard down. Never stop educating people. Be firm, but not rude (it can be hard). Help your school. Schools are for the most part clueless. They need guidance to help. Try to remember that you have taught your child well. It’s hard to let go. My oldest is 21 and it was hard to let him go even without food allergies. Trust that children will do what you have taught them, even if it is reminding them daily to carry their medication.
ERICA, MUM OF EVAN
As all organised and busy parents will tell you, a meal plan is a must! With your allergic child, it is even more of a must. Try to plan a week ahead if you can. That way you can seek to ensure your child gets a nutritionally varied diet over the week, at least within the limited range of safe foods.
The safest way to shop is to buy fresh, unprocessed food. However, we all use processed food at some point! Make a list of safe food for each meal and safe snacks. Keep the list somewhere handy so that you can add to it as you go through the weaning process. Not only is it a helpful reminder and prompt for you when shopping and meal planning, but it is also encouraging as you can see the list of safe foods growing. Hand the list out to family or friends. Remember to specify food brands, as different brands contain different ingredients. For example, Heinz Tomato Ketchup has no dairy, Co-operative own brand does. Remarkably, even different-sized packets of the same food may have different ingredients and ingredients also change for the same product so you need to stay alert.
The ‘free from’ food market is expanding all the time. Some brands cater for specific allergies and others for a wide range, producing food that not only removes all major allergens, but is tasty as well. These brands are sold by specialist retailers as well as in major supermarkets. It is very helpful to get to know these brands as well as their stockists (see Resources here). Even with ‘free from’ foods, always read the label to find out which allergens have been removed.
Even though your baby or toddler has allergies, he can still eat some commercially available baby foods. Many brands have allergen-free varieties, which can make life a bit easier. They are all clearly labelled and generally nutritious. They include purées, juices, smoothies, snacks and toddler meals. They can therefore be used throughout weaning and as your child gets older.
Whether you are a home cook or not, it is always nice to have an alternative solution to make life less busy. You could also use these bought baby foods as the basis of a meal and add your own fresh ingredients to increase flavour, texture and nutritional content.
Note: Manufacturers do change food ingredients. Therefore, never assume that the ingredients are the same. Every time you buy a product, read the label.
‘Free from’ food brands are on the increase. There is a list of some of them and which foods they produce in the Resources chapter at the back of this book (see here). It is worth remembering, however, that many foods not in the ‘free from’ section may also be suitable for your child.
Allergies have changed our lives. We check food labels and have to be so careful… We pack food whenever we go out so that if the kids get hungry we have something to feed them. There is no shop that we can go to and get ‘fast food’ for my son.
ANNE, MUM OF HANNAH AND EDWARD
For the majority of the parents that I spoke to in preparing this book, the biggest fear was leaving their child. However, separation from the parent and inclusion in wider social networks are both vital parts of the process of childhood. To be secure even when separated for a while is part of growing up. However, the additional angst of allergies and anaphylaxis looms over any sense of peaceful, happy and independent activity for the parent and possibly for the child. A careful and timely balance between separation and anxiety has to be found.
My biggest worry is leaving him on his own in the care of his school once I am no longer there. Currently I stay in the building and help at the school but in a couple of years that will no longer happen and that terrifies me. I am worried people will not act quickly enough when it is needed.
BEV, MUM OF LEVI
In short, any situation with food involved outside of the home and outside of my immediate family is anxiety provoking for me, I just hope I have hidden it well enough from the boys that they are not anxious.
EMMA, MUM OF CAMERON AND DILLON
Below are some tried-and-tested ideas to make this process as safe and fearless as possible. These precautions are mainly indicated if your child has immediate, IgE mediated allergies.
Medication: Never leave home without your child’s medication. I carry an antihistamine and the adrenaline autoinjector with me at all times, together with our written emergency plan (which has been laminated). I never remove it and always take the same bag with me so I know where it is at all times. Involve your child in this process from an early age, so he too can take some responsibility for it.
From the beginning, teach your child never to leave home without prescribed medications. Being prepared for an allergic reaction is the key to a safe life.
THE ANAPHYLAXIS CAMPAIGN, 2008
Antibacterial wipes: Always pack some sterile wipes to clean surfaces that may be contaminated.
Allergen-free sweet treats: Keep these to hand to give to your child if friends are having a treat too. This way there is no sense of being left out.
Any child with a diagnosed food allergy should have a formal emergency treatment plan in place. The British Society for Allergy and Clinical Immunology has produced standard UK plans which are available for healthcare professionals on their website www.bsaci.org
A written, personal emergency plan should be provided for a childminder, nursery preschool or school. There is an example in the Resources chapter at the end of this book (see here).
When you receive your EpiPen or Jext autoinjector, the number and expiry date can be registered. You will then receive email and or text alerts giving one month, then weekly notifications that the autoinjector is about to expire, giving plenty of time to get a replacement. See www.EpiPen.com and www.jext.co.uk for more information.
For younger children wristbands from Mediband are brilliant, they look cool and they are a constant visual reminder to friends, family and carers.
MEL, MUM OF E
Alert bracelets don’t have to single out your child but can work as a prompt for the caregiver and provide you with some peace of mind. There are some great designs available for children. See the Resources chapter at the back of this book (see here) for more information.
Your child has food allergies and although it is important to create a safe environment for them to be in, it is also vital to teach your child from an early age about their allergies. The dilemma for parents is at what age is it best to do this and how should it be done? How much detail should you go into? How do you empower and inform your child without frightening him? How do you tell him that what he eats is different without making him feel different? Above all, how do you keep your own fears at bay and just teach your child the facts?
Family are supportive now – it is ‘official’— as are friends but before we had seen the consultant sometimes I got the impression that maybe I was making life difficult for myself?! Also as the symptoms weren’t obvious anaphylactic ones it maybe was harder for people to grasp. I did have meals at friends’ houses and having told them I couldn’t eat dairy because of Felix still found myself with food that had cheese or cream in it (that isn’t dairy is it??!!). It is easier now it is just Felix, because people always ask before they offer a toddler food – or at least have done so far! Felix’s brothers think it is funny that Felix has one type of ‘milk’, Finn another and Leo yet another but I think that also makes them feel a bit special.
EMILY, MUM OF FELIX, FINN AND LEO
We have struggled a little with parents/older generation taking it seriously and getting their heads around what they can and can’t eat. Even now, four years on, we are still given products containing nuts at Christmas. Some others have thought we are making a fuss or even making it up. I have had to go through the whole story with one person who thought it was all in my head. It surprises me that people don’t understand that these are potentially life-threatening conditions.
KATHRYN, MUM OF SAM AND HARRY
Evan has yet to go to a birthday party without us. When he does go, we take his own food. On holiday, I always bring food for him as it’s hard to accommodate when others don’t ‘get it’. My house is completely allergy-free for him. We do go out to eat occasionally, but always call ahead or go where we know it is safe. I have been known to go into a kitchen at a restaurant and read labels! As he has got older, he tends not to want to eat out.
ERICA, MUM OF EVAN
It is entirely up to you if you want to make your home environment allergy-free or whether you just have separate foods for your allergic child. Some parents that I spoke to make the home allergy-free in order to allow their child complete freedom in the home and freedom from worry for them as parents. Others don’t do this and use the home environment as a mirror for the outside world, where your child will come into contact with allergens. There are advantages to both ways, but whatever you decide, education is still the way forward.
Allergies scare my parents, but they are getting more confident with time and as my son gets older he is easier to deal with and he has an amazing sixth sense of what will hurt him and make him sick.
ANNE, MUM OF HANNAH AND EDWARD
Friends and family are sympathetic, but scared. Everyone worries about an anaphylactic reaction and they check everything with me.
MEL, MUM OF E
We tend to not leave the children with anyone besides our family. People were terrible and some still are. We get the ‘Oh it’s just hives, give him some Benadryl’. Or ‘Just give him a little bit to build up his immune system’. Our wider family has learned over the years to accept it, but sometimes still does not understand it. People at school still think I am crazy and overreact… Some people choose to understand and others don’t.
ERICA, MUM OF EVAN
Although it is difficult, there are some benefits to allowing other members of the family to eat a ‘normal’ diet. It is a fact of life that your allergic child has to grow up knowing that other people eat different things and that there are some things they themselves cannot eat. It is a reality for your allergic child, so preparing him in the home for life outside is essential. Family members can learn how to safely eat food and clean up afterwards without excluding the allergic child.
It has been a hard journey but we have two lovely kids and my daughter is very aware of her allergies and asks what is in food. My husband has been very supportive; it would have been a much harder journey without him. My parents have been very supportive. Other family members don’t seem to get it and don’t understand the consequences of getting it wrong if the kids have something they are allergic to. I guess we visit those family members but don’t stay long.
ANNE, MUM OF HANNAH AND EDWARD
As parents, we are responsible for preparing our children for life outside the home. The list is endless – learning social skills, how to play together, take turns, be patient and for your allergic child learning about safe and unsafe foods, treatments that work and the names of allergens is part of that preparation. Teach your child to know what he can and cannot eat and to ask for help if he does not know. Even from an early age, you can teach your child to ask if the food contains an allergen. This will empower your child, allowing him to feel in control and it will help to relieve your anxiety as a parent. It is important that your child feels in control, involved and part of the treatment regimes and food avoidance that he is following. Talking and playing are good ways to help your child learn and can help to reduce anxiety for both you and your child.
It is unrealistic to expect that one day we will sit down with our children and pass on the control of their allergies. The fact is that letting go and teaching responsibility is a process that will develop over years… It is important to start teaching children as soon as possible about avoiding certain foods, and knowing what to do if they eat something they react to.
Whatever works for you, remember that the goal is to provide your child with a sense of control over the allergy, and to realise that he or she has options… Be careful of the language you use when you talk about the dangers. Although it’s important to convey seriousness, constant references to death will not help.
THE ANAPHYLAXIS CAMPAIGN, 2008
Inevitably there will be times when your child’s quality of life suffers due to poor sleep, difficulty breathing, sore skin and so on. However, if your child feels confident about his allergies and understands the treatments that can help him, with encouragement, his feelings about his condition can be discussed, acknowledged and talked about positively.
Zach loves Thomas the Tank Engine and we recently saw an episode where Henry, one of the engines, gets sick, red in the face and starts to puff and wheeze. No one knows why he is sick until he says it’s because he had the wrong coal! It was a useful way for me to talk about eggs and dairy and how despite being allergic to coal, Henry was still a really useful engine. Zach smiled and asked to watch the episode again and again… six times in all!
There are great websites and books for different-aged children that can help in explaining and talking to your child. I have included some of them in the Resources chapter at the back of this book (see here).
Cooking and eating with your child is a great way to educate him as well. I once heard a play therapist say that children talk best while doing something, and cooking is ideal. Rather than pointing out what your child cannot eat, have specific times when you cook and eat food that your child can eat. It then becomes a positive difference. Children learn that they have soya milk not cow’s milk and they learn to recognise cartons and labels before they can even read. They can learn what eggs look like but that they don’t cook or eat them in cakes, for example. If you start this gentle, informal process early then differences in the foods that people can and cannot eat becomes a natural, normal part of life, not an emphasised negative part.
He’s a good boy really, takes it all in his stride and mummy bakes him treats every now and then so he doesn’t feel left out. One day soon he will start to realise he is a little different from the other kids at school but for now I don’t think he realises, and hopefully we can work around those future issues the best way possible so he feels happy with it all.
BEV, MUM OF LEVI
Schools and many preschools and nurseries will have training procedures and protocols in place for the management of other children’s food and for the management of a child with food allergies and anaphylaxis. Get hold of a copy of these, read and ask any questions that you have. If your child’s school has concerns about managing your child’s allergies, please see the Anaphylaxis Campaign for key recommendations made for schools in 2010 (http://www.anaphylaxis.org.uk/schools/help-for-schools).
My biggest fear now is that Hunter will have a reaction while at nursery, despite filling in detailed forms and discussing it with his key worker. I can’t quite trust that they will ensure the food is safe. As a result Hunter has not stayed at nursery for lunch to date, but this is something I know I need to deal with eventually.
EMMA, MUM OF HUNTER
My son has been in childcare since he was six months old. His carers have been amazing. The first time we took him in for a settling visit, the carer cuddled him and put him in a cot for a sleep. He reacted to the laundry powders and got a red rash on his cheeks and exposed skin that touched the clothes and cot… He did have a couple of food reactions in those initial periods but mainly to skin contact and that is still the case. He stayed in the babies’ room for one-and-a-half years and eventually moved up when he got an EpiPen autoinjector…
ANNE, MUM OF HANNAH AND EDWARD
Before your child starts nursery, preschool or school, arrange to visit in person and ideally meet with your child’s class teacher as well as the headteacher and other key members of staff. Talk to the staff about your child’s allergies and about the precautions that have to be taken. It is also important to provide a written emergency plan, clearly stating the foods that your child cannot have and going through the emergency procedure step by step. It is useful to include a photo of your child on this form. There is an example written plan for preschool in the Resources chapter at the back of this book (see here).
As the parent, you will need to provide the appropriate medication for your child, which should always have your child’s name on the pharmacy label. It is useful to keep this all together in a named container for ease and safety of storage. You are responsible for making sure this medication has not passed its expiry date and replacing it, if necessary. Try to ensure that as many staff are aware of it as possible and that there are identified AAI administrator trained staff always available. The most important staff members to educate are your child’s class teacher and teaching assistant, those involved with your child every day. Do all you can to revisit when, where and how to use the AAI at regular intervals. Medicines can only be given with prior written consent of the parents. Provide your child’s written emergency plan (see here). When the medicine is required, the staff must feel able to act in the place of you the parent and should have no fear or ambiguity about giving the medicine when needed. The medicine to manage an allergic reaction will not harm your child if given when not strictly necessary. What will harm your child is not giving it when it is needed.
Often a healthcare professional can help facilitate the process of teaching the school about anaphylaxis and allergy management. Speak to your health visitor, GP or allergist for further help.
With nursery you need to have a meeting with them before your child starts. Make posters with YES and NO foods. Make it as easy for them as possible. Provide strict and specific instructions for which reactions require which medicine and actions etc.
BEV, MUM OF LEVI
There are training DVDs available and websites that provide specific school and preschool age-appropriate teaching material. There are online training courses called AllergyWise designed for individuals, carers, families, employers and healthcare professionals. There are also specifically designed courses for healthcare professionals, including GPs, practice nurses and pharmacists that are run by the Anaphylaxis Campaign (www.anaphylaxis.org.uk).
Most importantly, teach your child about which member of staff to go to if he is feeling unwell.
Younger children who are unable to read food labels should be taught not to share food. Risk assessment is a skill that needs to be learned early in life. Rather than ban certain foods, it may be of more value for schools to encourage children to be aware of what they eat, what their friends can and cannot eat and to recognise signs of an allergic reaction.
Education can help reduce anxiety and fear and instil confidence in the ability to cope in the event of anaphylaxis.
Zach was due to start preschool in the September, so the preschool and I arranged a training session for all the staff, run by the allergy and asthma clinical nurse specialist from the local hospital. All the staff attended, along with a community paediatric nurse from the GP surgery. The topics discussed were allergy, anaphylaxis and practice at using the EpiPen. My husband and I were able to talk about Zach and the foods to avoid and how we manage every day. The staff then did a problem-solving session where they discussed solutions for snack time, birthdays, baking and junk modelling (see here). The aim of the session was inclusion of Zach and as a family we went away feeling supported and positive. Everyone was willing to help and I didn’t feel like a nuisance at all. As a result they changed their birthday cake policy and used allergy-free baking recipes. Zach sits at the water end of the table during snack time and puts his plate and cup on top of the trolley when he has finished, rather than in the washing-up bowl along with the other children.
Discuss where your child will sit during snack time and what snacks are available. Provide separate snacks for your child, if necessary. If milk will be available, where will your child sit and where will he put his plate and cup at the end? Could there be designated water and milk ends of the table so that your child sits at the water end? How will spills be dealt with?
Provide replacements for baking and offer to help if at all possible.
Does the school use old egg, milk, flour and chocolate boxes and cartons for crafts? If so, can alternatives be used when your child is there?
I tend to run through an emergency plan in my head when going out or planning to leave Zach with grandparents. I will always go through the use of the autoinjector with others and clearly state that an ambulance will need to be called. If Zach is going to a children’s party, I always speak to someone else such as a relative or friend if my husband isn’t there to help me if there is a crisis. It’s good to have a back-up and someone who will call an ambulance or care for other children should the need arise. I never leave Zach unsupervised at parties.
Children’s parties are a minefield of emotions. As a parent, you want your child to be included and not feel different to anyone else, but the reality is that he is different. It is very unlikely that your child will be able to eat the birthday cake or the chocolates and biscuits, sandwiches, dips and snacks on offer. However, the good news is that with some careful planning and distraction, a child will notice a difference but not significantly so. The difference will hopefully not make him sad and that surely is what we as parents really hope for.
Children seem to be excellent at accepting. If your child understands that a certain food will make him poorly, he is likely to be happy to accept a cake or chocolate substitute. Try to speak to the host beforehand if you can and come prepared with an array of substitutes if at all possible.
Birthday parties are often avoided unless I know the parents (again fear of looking like a neurotic mother). I make chocolate cupcakes for the boys so they don’t miss out on cake and check what is going to be available and take party type food for them if needed. The most scary birthday party situation was at my nephew’s third birthday party – there was a piñata filled with chocolate and sweets that the boys couldn’t have. My sister did have chocolate for the boys so they could still eat some. But a floor covered in chocolate and children covered in chocolate was scary for me and I really struggled with whether to let the boys join in picking up the chocolate coins or not! My sister is wonderful and always has food for the boys and has more [safe] chocolate for them in her house than I have in my house!
EMMA, MUM OF CAMERON AND DILLON
My daughter goes to birthday parties, which I find challenging. We take her own cake and call ahead to ensure that the host is aware of Hannah’s allergies. I stay and make sure that she does not eat anything that will cause a reaction as little macaroons are often served – these can make her very sick.
ANNE, MUM OF HANNAH AND EDWARD
I tend to take a ‘special treat’ if we are somewhere where other children have cake or biscuits so that S feels he is also having something different and exciting. I found a dairy- and egg-free cake recipe online for his first birthday cake as it was very important to me that he should have a cake. I thought I would use this recipe to make little cakes to take to future parties so that he isn’t left out.
HANNAH, MUM OF S
Use antibacterial wipes on any toys or surfaces that your child may come into contact with. Take biscuits and drinks with you to cater for snack time the first time that you go. On subsequent visits, ask about the brand of biscuits used at snack time and then check the labels of those brands in the supermarket. The aim is to allow your child to be as included as possible. Occasionally, the provided snack may be a safe option.
In a restaurant, the risk of cross-contamination is great and so you may want to have a discussion with the chef or waiting staff. But some restaurants, especially chain ones, can be very allergy-wise. Some provide their own ingredients lists that are allergy specific for each meal. You can find these online or by asking the waiter or better still the chef or manager. It can be useful to phone ahead to discuss provision for your child. It may be a good idea to use a ‘chef card’, such as those available from .www.dietarycard.co.uk. Hand the card to your waiter to pass on to the chef. Most restaurants are very accommodating. If in doubt, always take your child’s meal with you as well as your own snacks.
When eating out we take a plate of food made up as close as possible to what the rest of us will have – for example, pizza for a pizza restaurant.
BEV, MUM OF LEVI
We do enjoy eating out and have generally found restaurants to be very helpful. What doesn’t help is the constant use of ‘we can’t guarantee’ etc. One waiter at a Jamie Oliver restaurant was great, he sat down with us and explained all the risks, what was used and the areas of potential cross-contamination.
KATHRYN, MUM OF SAM AND HARRY
Meals out are rare as it is so difficult and unpredictable in terms of whether the boys can eat and I am fearful of arriving somewhere with two hungry toddlers and no food! Also I do struggle with trusting waiting/bar staff to relay messages and the chef to be careful of cross-contamination. So many people hear ‘intolerance’ when I say ‘allergy’. My best friend is good at saying, ‘You do have their EpiPens with you, don’t you?’ when we order food – that normally gets the gravity of a reaction across quite nicely.
EMMA, MUM OF CAMERON AND DILLON
Note of caution: Certain styles of eating such as buffet and salad bars have an increased risk of cross-contamination. Asian and other ethnic restaurants tend to use more allergenic ingredients such as nuts and sesame seeds.
With a little careful planning, it is possible to travel safely with an allergic child. Translation cards are available and are well worth buying if you are going abroad with your child. These wallet-sized cards are available from Allergy UK in a range of languages. The cards specify the foods that your child is allergic to. They are therefore great when eating out. There is also an emergency card if your child is having an anaphylactic reaction. It says what is happening to your child and that you need an ambulance.
Holidays have been more challenging, especially in places which use a lot of dairy. We have just had to be very organised about preparing his food and self-cater where possible.
HANNAH, MUM OF S
We have taken Sam to France. We self-catered and ate out. My husband’s French is pretty good and he made sure he asked every time what the food contained and stated that it was a severe allergy. We haven’t yet taken Harry abroad – we are considering it but the milk allergy is so much harder.
KATHRYN, MUM OF SAM AND HARRY
Make sure that you have enough of your child’s medication to take with you on holiday. If travelling abroad, your child’s medication must be carried on the plane and kept with you at all times in the hand luggage. Liquid restrictions at airports and the airlines themselves will require that you carry a letter from your GP or allergist stating your child’s name, allergies and reasons for carrying the specified medication. Often GPs charge for this service, so it is worth getting the wording right the first time. Please see the Resources section (see here) for a travel letter example. Contact your airport or airline for further details and also to see if a suitable meal can be provided for your child. Take snacks with you in case of delay but avoid meat and be aware that only small amounts of fruit or vegetables are allowed abroad.
Before you reach your destination, find out about the emergency services in the country and the nearest hospital. For shopping, be aware that food-labelling rules vary outside the EU. It is useful to keep the translated names of your child’s allergenic foods with you for supermarket shopping.
We went to France for my sister’s wedding in January 2010. I took long-life soya milk, soya custard and some soya puddings with me. My sister very kindly put us in an apartment so I could cook for the boys while everyone else was in the hotel. I bought fresh food (fruit, veg and meat) and cooked for them and learned how to check about allergy-inducing food in French so that we could buy bread.
EMMA, MUM OF CAMERON AND DILLON
Anxiety about your child’s safety can be huge when your child suffers from allergies because normal activities can pose huge dangers. However, separation and independence are a natural, vital part of growing up. It is important to talk to those you trust about your fears and anxieties.
I feel nervous about leaving Levi with people, so generally if he wants to go to a friend’s or to a party I go along too. It is very hard to trust others with the amount of responsibility and things to remember. I think it is true to say that it can cause separation anxiety for the mother as well as the allergic child. I do trust my partner, however, and I know that if he is unsure he will always ask first.
BEV, MUM OF LEVI
The biggest impact was, and still is, the fear that the boys will have a life-threatening reaction – going to play group/soft play/the park, where other children are eating and might drop something. I fear they will be given something, or pick up something to eat that will cause a reaction. Birthday parties are a minefield and I feel like a neurotic mother! It is hard to let them go and explore the world with such potential for harm. What if they are in the middle of soft play and have a reaction and I’m not with them?! What if someone is looking after them and they forget to take the EpiPens out?! What if we are eating away from home and there is cross-contamination in the kitchen because people aren’t as careful as I am?!
EMMA, MUM OF CAMERON AND DILLON
I suppose the biggest impact is that we rarely leave them both. I have never used a childminder. There are a handful of very close people we can trust to look after them. We are entering a new era of school with Sam, which is quite stressful and we worry that he is singled out as different to his classmates.
KATHRYN, MUM OF SAM AND HARRY
As previously discussed, try to empower your child by teaching them, playing games with them that involve pretend food allergens and scenarios that they might come up against when they are without you, so that they have practised how to respond and feel confident. Try to make the environment around them as safe as possible by educating those around them and remember to praise your child for learning about and coping with their symptoms. Your child may inevitably pick up on your anxieties but it is important that he has the self-esteem and confidence to enjoy and live his life. As a parent, all you can do is your best and allergies are like any other difficulty your child may face in life and as such can be tackled and overcome positively.
Modify your strategies, as your child grows older. Keeping things too simple may hinder your child’s ownership of the allergy but if your expectations are set above the child’s capability, your child may feel defeated. Overprotection can send the signal that you think your child is not capable of handling situations. You will need to search for a balance that’s right for your family.
THE ANAPHYLAXIS CAMPAIGN, 2008