Food. Its arguably the fabric that holds communities together. Food is used for so much more than nutrition and fuelling the body. It used for enjoyment; many families gather over food, its used to say I love you, at rituals and ceremonies, cultural gatherings, even for compassionate means. It is ubiquitous. Now imagine that food, which is literally available everywhere could pose a serious threat to your child’s life .. so serious that if ingested, it could mean the difference between life and death. With Australian figures now reaching 1 in 10 children 0-5 with a food allergy, this is a community issue that cannot be ignored.
This is the life I live with my six year old boy. At approximately 8 months of age, he started developing hives and vomiting when ingesting certain foods. We presented to our GP with no real understanding of food allergies, and how this moment in time would change the way we viewed food forever. The GP was quick to identify the response as a likely ‘allergic reaction’ and we were referred to an Immunologist for further testing and diagnosis. A few months later, we had our results; our son was diagnosed with allergies to egg, sesame and peanut. Up until this point, and given our older child did not have any food allergies, we were blissfully unaware of the implications of having a child with allergies. As parents, and particularly as a mum who manages most of my children’s food intake, I was about to embark on the steepest learning curve I’d been on as a mum.
Suddenly we became anxious, label reading, arguably over protective parents. I hated entrusting anyone to feed him other than myself or my husband as I did not feel people truly understood the gravity of the situation if they had an oopsie. And we have had a few. Three times in daycare, our son was accidentally fed egg. The first time, they daycare did not even bother to tell us and did not follow the allergy and anaphylaxis plan. I arrived to pick him up and noticed he was in a different set of clothes. Their offhand remark was that he had vomited, and it was probably because the pancakes he’d been fed for afternoon tea contained egg. At this stage, he was only 10 months old, and we were so new to the whole allergy world that we did not pursue the matter properly. We lodged a formal complaint of which they provided a somewhat unsatisfactory response to, and subsequently we pulled him from their care.
The second and third exposures were at a not for profit community daycare which our daughter had previously attended. We loved the care they provided our daughter, and although they had much stricter procedures in place, he was still accidentally fed egg on two separate occasions. The second occasion would be the first time I administered the epipen on him. I have had to do it once more since; I consider these experiences highly traumatic and frightening, not something I would wish on my worst enemy. On the third daycare exposure, we did follow through with a formal report to the Dept Health and Allergy and Anaphylaxis Australia, who investigated the incident in full. My main rationale for this was not to punish the daycare, but to ensure the gap/s in their procedures were identified so that no other mum should have to endure what I did that day.
On top of that, he has been exposed to his allergens by well meaning grandparents too. A simple thought that ‘surely that wont contain egg’ is a dangerous one, and has left its mark when we had another reaction through this. In the allergy game, assumptions can kill.
As a mum, you do everything in your power to protect your children from harm and hell hath no fury like a mumma whose babies are under threat. Now imagine that this threat is sneaky, at times hidden and can pop up anywhere. There is no room for complacency; one slip up can see absolutely catastrophic consequences. This is my life! Whilst my eldest child can easily attend birthday parties, play dates, order anything from a menu and can sample anyone’s food without us having to think, it is an entirely different story for our son. We have worked so hard to educate our friends and family about his allergies, everyone is aware that he is never to be offered food without our consent first. Our son is also well versed in his allergies, and knows that he must ask first ‘is this safe for me, I have food allergies’ before he is allowed to eat anything. He must also check with mum and dad before eating. This is a big responsibility to put on a little mind, but it is imperative to keep him safe. It pains me to watch him have to sit back whilst other kids are enjoying a birthday cake, or a sweet that contains one of his allergens. I hate to see him miss out, but for the most part he is amazingly gracious about it and takes things in his stride.
These are some of the strategies I employ on a daily basis to keep our son safe:
- Read labels – the rule of thumb is to check three times; one as your purchase the item, one as you pack it into your fridge/pantry and one before you serve it to the child. You must do it every time as ingredients can and do change without notice!
- Call ahead – if we decide to eat out, I will always read the menu online (if possible) then call and speak with the Manager or Chef to identify safe options before we even go to the restaurant. Upon arriving, I always identify us as the allergy family and re-iterate what we need. If I am not confident in the way they handle it or they seem overly casual or ill informed, I will not order from them. I have been known to take ‘safe’ takeaway to restaurants that I deem too risky for his allergies e.g. a Chinese restaurant.
- Regular orders – I do rely on options we have used many times that are safe. Again, we need to check each time but it is useful to have these go to option, especially when I’m caught out or timing changes so that I don’t have food on me.
- Take my own food – I LIVE by this rule. In order to prevent being caught out, I take a fully loaded snack bag everywhere I go. In addition, I carry something more hearty that has a long shelf life in the car as extra back up. My go to option is noodles in a cup. Obviously it will depend that the child’s allergies are, but this has been a lifesaver on many occasions. I also carry a spare freddo frog or lollipop in my purse for those moments when other kids are eating a treat he can’t have.
- Check, check and triple check foods you didn’t prepare yourself – I’ve had to make the uncomfortable decision not to allow our son to eat food that’s been prepared by someone else, even when they have assured me that its safe. It really depends on the relationship I have with the person and how well they understand his allergies and things like cross contamination. If I’m in doubt, I just don’t allow him to eat it.
- If in doubt, don’t let them eat it – as per above! If I have any reservations, I just don’t let him eat it. Especially foods that you cant check the label of, or you are not confident in the information you’ve been provided. Never assume its safe.
- Carry epipens/claratyne everywhere – the rule in our house is that wherever our son is, the epipens go too. Even when we are going for a walk or a quick trip to the petrol station, we have taught him that he needs to take responsibility for ensuring that the pens go too.
- Train family and friends on how to use epipens – without being too gung-ho and scaring everyone away, we ensure anyone who will be in care of our son knows how to administer an epipen. Fortunately it’s a fairly straight forward task (with instructions on the side of the epipen), but we also have training devices that allow people to practice.
- Check foods to be served ahead of time – this is particularly important as they start school and are attending birthday parties on a regular basis. I always communicate with the hosts ahead of time and find out what they will be serving and if there are safe options. I will also then prepare options for him from home to take along so he feels as included as possible. I also take some of my own cupcakes so that he can have a cake whilst the birthday cake is being served.
All these things add up to a very busy schedule and lots of monitoring, but I never hesitate… these are things we do as mums to keep our children safe! I always feel warm inside when the extra planning and coordination I’ve had to do means he can enjoy himself and still feel like he can participate in the activities and eating just like the other kids. It’s all worthwhile!
Do you have a child with food allergies or other life threatening conditions? How do you manage this on a daily basis? How do you support your friends that have children with these conditions? Please feel free to share.
I feel you sister. Xxx
From one allergy mumma to another xx
Great reading Tash
My son is 15 and has had a nut allergy since he was two. We did all the steps you mentioned, sometimes not easy with people not truly understanding how dangerous food allergies are. As my son has grown older he won’t eat anything unfamiliar and will always ask what is in the food and read the labels.
The hardest thing as a parent which I find now very difficult is your child wanting more independence as they grow older – Teenager. With the constant reminders about food safety you hope have educated them enough. Always a constant worry though.
This is something I will never forget as a mum with a child with a food allergy.
My son was in kindy one of the mums said to me “children with food allergies” should be in a special school these kids ruin it for the rest of our children!! Yes you can imagine the response I gave her. I provided her with some strong advice and education on Children with food allergies!!!! One thing I have noticed is primary schools seem to take food allergies more serious, high school still require more work unfortunately.
I’m happy to report over the years and after many food challenges my son can now have hazelnut and walnuts. Nutella finally in the house.
Thank you for sharing Jules. Noone understands the preparation, forward planning, education and advocacy that is required like another allergy mum. I love to hear the great news that your son can now eat hazelnut and walnuts, it gives me hope that one day we will have peanut butter in our house! xx
I feel honoured to be trusted to not just feed your son but be trusted with him overnight. I have a greater understanding now of what an honour that is. He has a beautiful soul and you do an amazing job of protecting him without clipping his wings. Be proud mumma! You’re doing amazing.
Thanks sis, you know better than most the lengths us allergy mums have to go to in order to protect our children. I am so grateful for the effort you always make to prepare food that is safe for our little guy. There aren’t many places I can take him to eat outside of home where I can relax and know that his needs have been considered; your home is always one of these places xx