allergy stories

Dealing with day-to-day life can be extremely stressful for the parents of children with severe allergies. Not only do they have to make major lifestyle changes to cater for their child, they have to constantly worry for safety both in the home and when they go out – even for a simple trip to the corner dairy!

it's not only what a child eats

living with allergies

The following mums talk about what it’s like to live with an allergy child and share some of the things they have to deal with on a daily basis. One message they all stress is that ‘just a little bit’ can not only hurt their child, it could potentially kill them.

It’s like walking a minefield - My child has life-threatening food allergies to eggs, peanuts, cashews and some fish, as well as milder reactions to cats and dust mites of which she can experience facial swelling, hives and asthma. Caring for a child with severe food allergies is very stressful and it can sometimes feel like walking through a minefield. I need to be constantly vigilant, not only watching what she puts in her mouth but what other children are eating or dropping on the floor, or wiping on the play equipment. Ordinary events other parents take for granted, can take a great deal of planning or simply be too much of an ordeal. I don’t like shared lunches and am always exhausted afterwards by the stress of it. Going out to a restaurant or away on holiday can be very difficult because of her food issues and her EpiPen can frighten potential babysitters. Shopping also takes longer because I need to read all the labels. EpiPens and eczema creams can be expensive. My daughter has been left off the guest list for birthday parties because of her allergies. She was very hurt, and asked if she could go in the future and promised she wouldn’t eat anything if she did. I tried to explain to her that some people find allergies a bit scary – then I had to reassure her that it wasn’t because she is not a likeable person. If only the other parents had called me first because I’m always happy to take along safe food for her so she doesn't have to miss out.

I’m living with a time bomb - My daughter has a life-threatening allergy to peanut, an eczema reaction to egg, and gets asthma and allergic rhinitis from dust mites. Even the smallest trace of peanut can cause a reaction. The inability to go anywhere spontaneously to eat can be very frustrating. Because we live with it everyday we have forgotten what life without an allergy is like. At the back of our minds there is the constant fear of living with a time bomb – is she going to have an anaphylactic reaction? What will it be like when she’s at kindy? When she’s at school? When she’s a teen? When she’s an adult and moves away from our care? Many people don’t take allergies seriously. They think ‘a little bit’ won’t hurt, or that allergies are all in the mind. Now I feel like a broken record when I have to describe how sensitive she is and that she can’t eat products labelled ‘may contain traces of peanut’. As a result, we have to do a lot of cooking and baking from scratch.

Putting on a brave face - My daughter has Coeliac disease and must follow a 100% gluten-free diet. If she eats just a trace of gluten, she ends up with chronic diarrhoea, a swollen stomach, lethargy and could risk contracting bowel cancer. My daughter accepted the diet from day one but there have been times when she felt different and left out because she couldn’t eat what other children were eating. My daughter always put on a brave face although we have suffered a few tears later at home. The wonderful thing is that most parents want to do the right thing, but many still do not understand how vital it is that she does not have even a crumb of gluten. At kindergarten when the children made scones everyday for morning tea, we would pack her gluten-free ingredients from home, make her scones at a separate table and bake them in a different dish. She would also take her own morning tea and was never allowed to share. Attending birthday parties we take our own party food, and I often have to bake or buy a special piece of cake so she won’t be left out.

It’s very frustrating - My son has a moderate to severe allergy to peanuts which can be potentially life-threatening depending on the extent of exposure. Having a child with an allergy has taught me to be more aware of children’s health needs in general. I think people are becoming more aware of allergies, but it’s very frustrating when my son is offered or given food without asking me if it is okay first. People are just being kind but the potential for disaster is huge. He has had relatively little exposure to other children his age, until recently, as I wasn’t comfortable taking him to playgroups where people brought their own food along. We rarely take him to parties where, as parents, we could be distracted from keeping a close eye on him. He has been to one birthday party though, at a neighbour’s house. The neighbour checked the menu with me prior to the party and we had a great time.
 

It can be exhausting financially and socially - My son has a moderate food allergy to cow’s milk and eggs, and a low food allergy to wheat and gluten. His food intolerances have been identified in acid-based foods which are served 95% in his vegetarian meals. Specialist visits can be incredibly exhausting, both financially and socially. What’s most frustrating is that labelled packaging and the description codes still seem to be unreliable. Most manufacturers are not required to describe all the product ingredients so it's a case of hit and miss!  We still carry out regular food challenges to try and eliminate any hidden food intolerances. These might not be considered full-blown allergic reactions but they continue to give off bad food reactions which may affect Richard’s overall social disposition.

birthday parties

When you have a child with an allergy coming to your next birthday party or over to play, there are ways you can help to reduce the anxiety for yourself and the child’s parents to ensure the experience is safe and enjoyable for everyone:
 

• If you are hosting a birthday party, ask the parents in advance what food their child has allergies or intolerance to. Ask the parents if they have an allergy-free recipe you might be able to use, or invite them to bring something along. Consider offering non-edible treats as prizes or in loot bags.
• If your child has a little friend over to play, ensure the environment is as safe as possible e.g. if a child has an egg allergy, don’t use egg cartons for painting with or chocolate wrappers for collage, don’t use eggs if baking, and don’t visit a bakery as they may inhale the egg powder in the air. If you’re not sure, tell the parents what activities you have planned and they can let you know if anything is potentially dangerous.
• Wipe down any table and chairs, and toys the child might come into contact with to remove traces of food – this is especially important for children with anaphylaxis as the smallest trace can set off a life-threatening reaction.
• Remove any left-over food from play areas and jam shut the pantry door or food cupboard in the kitchen to remove any temptation.
• Ask the parents for a list of what the child must not eat and check if there is anything you are unsure about or if the food is known by a different name, e.g. milk is also known as casein.
• Ask the parent to go through a safety plan with you so you know how to recognise and deal with an allergic reaction. Some children may require an adrenaline shot (EpiPen) in the case of a severe reaction or anaphylaxis – decide if you are willing to do this, and get the parents to show you how to use the EpiPen.
• Get a contact phone number of the parents in case of an emergency.
• Talk to your own child about the importance of not sharing food before any little visitors arrive.
• Try not to make the child feel special or different, but instead create activities that allow them to join in.
• Remember, don’t be afraid to ask - the child’s parents will be grateful if you do!

Allergy New Zealand www.allergy.org.nz