Jessica and her daughters cuddle at the hospital

How to not kill my kids this Easter

Jessica Hammond Doube’s daughters are at risk at every playdate, every time they go to a restaurant or cafe, and at school every day. And at Easter, the risks posed by their severe food allergies are even more pronounced. Here Jessica writes about how allergies affect her family’s life, and what she wishes other parents knew.

Easter is a lovely time for kids. Even parenting experts say Easter and Christmas are the two days of the year that you can just let your kids eat whatever the hell they like. But they don’t say that to me.

For kids with severe food allergies, Easter is one of the times where they feel most excluded from ordinary life. It’s a time when their parents keep their hearts in their mouths, seeing sweet little happy kids with sticky, chocolaty fingers running around touching everything. Poisoning everything. Innocently becoming a threat to their child’s life.

I remember being at a party when my first child was two or three – too young to know to fear food. She was at an age when she was still inclined to put things in her mouth without knowing or caring what they were. The host announced an Easter egg hunt to the excited children.

I’d learned by then that the way to approach a treasure hunt was to follow my daughter around. I’d hover far enough away that she could feel like she was part of the game, but close enough to intercept the treasure and offer her a swap for the treat I always carried in my handbag for these sorts of occasions.

Immediately after the treasure hunt was pass the parcel. I looked at the kids with faces and hands thickly smeared with a poison that could only kill my child. I pictured the parcel going from one pair of toxic hands to another and reaching my child. I pictured her coming up in hives, her lips swelling. I pictured her starting to cough and spit up thick sputum. I saw it filling up her airways and making her wheeze. I wondered if the medication I carried would hold her until the ambulance arrived.

So I stood up and asked if the parents would mind treating their kids to a round of baby wipes so my daughter could play the game.

Most people are totally fine with this sort of request if they know the reason. But I can usually count on someone’s mouth twitching as they hide a smirk at the neurotic mother of the special snowflake child.

So here I’m going to speak from my experience as a mum will a vulnerable child. Here are the things I wish other parents knew.

Jessica and her daughters cuddle at the hospital

I’m not neurotic 

Inevitably, someone will have a lot of questions for me after I mention allergies. A common comment, especially from older folks, is “you never heard of allergies back in my day”.

I’ve learned that some people are genuinely puzzled at the increase in allergies and are interested when I offer to tell them some of the theories I’ve heard. I’m always happy to have this conversation (short answer: it’s complicated – but it’s probably to do with us being exposed to less or different bacteria through reduced contact with animals, less dirtiness in general, through different diets and through antibiotics. For some allergens it seems to be affected by when babies are exposed to different foods).

Others imply that I’ve brought these allergies onto my child with my hyper-clean helicopter parenting. Others seem to think I’m… I don’t know, making it up?

My grandmother thought my generation was making this stuff up. She gave my dairy-allergic cousin some cow milk and watched in horror as his mouth started swelling up. His dad swept in with medication and he was OK.  Luckily for us, she had learned her lesson by the time my kids came along.

I know what foods could kill my kids

A lot of people ask how I know my child has allergies. Here’s how I know:

One day, when my first child was about six-months old, I gave her some plain yogurt. Within a few seconds welts started appearing on her face and her lips were swollen. I called Healthline and was told it sounded like a dairy allergy (I’d exclusively breastfed so this was her first exposure). This time the reaction calmed down over time on its own.

We were sent for allergy testing. They did a blood test and then skin prick tests.

In skin prick tests, a tiny drop of an allergen (usually in the form of an isolated protein) is put on my kids’ arms, and then the skin is pricked with a sharp instrument so the allergen can enter through the skin. We wait 20 minutes and then the nurses measure the size of any welts (raised, red, itchy things that look like insect bites).  Sometimes they will test about 20 potential allergens at once.

The tests showed that my baby was allergic to dairy, eggs, peanuts, cashews and pistachios. Other nuts showed small reactions and we were advised to keep her off all nuts for now.

We were told most kids grow out of dairy and egg allergies, but most don’t grow out of nut allergies. We were told they don’t prescribe EpiPens until a kid has an anaphylactic reaction. Instead we should carry antihistamine liquid. Apparently skin prick tests are not reliable indicators of how a person will react to food inside their bodies so she might experience anaphylaxis or she might not. This was not reassuring!

She went on to have an anaphylactic reaction to dairy, so now she carries an EpiPen.

Meanwhile, my baby entered the public health system. She has skin prick tests about once a year and we are working our way through “food challenges” to see if she is growing out of any allergies or if any of the ones with small reactions (like pecans for instance) really do affect her.

This is how food challenges work: take a suspect food – let’s say pecans. Kiddo has to be in perfect health: no coughs, no runny noses (we’ve had to cancel at last minute loads of times because of this). We get to hospital about 9am. Kiddo is checked from head to toe for any red marks that might confuse the results. Her weight is checked so they know what dose medication she will need if she has a reaction. Her blood pressure and pulse are taken so they know what’s normal for her.

Then we put a pecan on the inside of her lower lip, hold it there for 30 seconds, wipe her lip clean and wait for 20 minutes. After 20 minutes the nurse and I check her all over for any welts and if she’s all clear, she eats a a quarter of a teaspoon of pecan. Then we wait 20 minutes and if she’s all clear she has half a teaspoon. This gradual increased dosing continues until we either have to call it off because she looks like she’s reacting or because she gets to a reasonable serving size with no problems. Then we wait in hospital for two hours and if she’s still OK the test is called a success.

These food challenges take all day. But – bless that children’s outpatients department – there are toys and games, a DVD player and, most importantly, a coffee cart just outside. So it’s not so bad. What is awful is the anxiety of deliberately giving your child a food that might hospitalise her.

Both my kids have food allergies. My five-year old is allergic to peanuts, cashews and pistachios and is being challenged on other nuts. So we spend a lot of days at the hospital.

Last time we did a food challenge with my five-year old she had an anaphylactic reaction. The moment she swallowed a piece of pistachio she said her throat felt like there were knives in it and soon after she said her tummy hurt, but it took two hours before she started coughing and then retching and wheezing.

All parents who have had their kid in a life-threatening situation know the drill here. Stay calm so your baby will stay calm.

You can cry later.

A doctor gave her adrenaline which didn’t work on its own, so she had a nebulizer and oxygen and she eventually started to come right. After a night in hospital, we were sent home with instructions to get an adult dose EpiPen, since the dose they’d usually use for her weight didn’t do the trick this time.

$360 worth of epipens

Allergies kill poor kids

EpiPens are really expensive. The cheapest NZ-based online pharmacy sells them for $120 – they are far more at a regular pharmacy. They are not subsidised by Pharmac and they expire after a year.

While my kids are at the same school they can share their school EpiPen, but we need two at home. I realised this the first time I dropped one of my children at a birthday party and thought – “Shit. Which one gets the EpiPen?” So we need three in total which works out to $360 a year for EpiPens. I remind you, these life-saving instruments are not subsidised by Pharmac. We can afford $360 a year, but a lot of families can’t.

Some kids with severe allergies are eligible for the Child Disability Allowance ($47 a week, which can cover EpiPens, medical costs, specials foods, etc) but not all kids with allergies are. My eight-year old with multiple severe allergies probably is eligible (we’re investigating this) and my five-year old probably isn’t. In any case, none of the many doctors and pediatricians we have seen ever told me about it; I stumbled upon information about it just a few weeks ago.    
 
I have online friends who can’t afford EpiPens and who can’t get either the Child Disability Allowance or the means-tested Disability Allowance because their child doesn’t meet the subjective threshold on how much their lives are affected by allergies. I’ve heard of parents being too scared to send their kids to school camp because they can’t afford an EpiPen.

Pharmac says they would like to fund EpiPens if they could source them at the right price. Apparently one of the reasons they don’t fund them is that not many people die of anaphylaxis each year. I can’t help but wonder if the low number of deaths is because many families are going without other essentials so they can afford to buy those unsubsidised EpiPens.

I also can’t help but wonder how many other kids are missing out on normal kid experiences like school camps or sleepovers with friends.

Play-dates can be really scary for parents of kids with allergies but thank you for having us!

I’m sure anyone whose kids have health issues will understand the supreme act of trust it takes to leave your kids in someone else’s care. Every play-date now starts with a tutorial for the parents on how to administer an EpiPen.

We’ve only had one incident where one of my kids had a reaction on a play-date. The mum was so concerned to keep my multiple-allergy eight-year old safe that she made her a special dinner. But she forgot she’d put cashew-nut pesto in the meal my five year-old was eating. One tablespoon of pesto in a family-sized batch of bolognese – and off we go to hospital with my daughter puking copiously all over the back seat of the car. (If the mumma I’m talking about is reading this, I still completely love and trust you! I know you were trying and we’ve made mistakes like this too).

I know it must be nerve-wracking having kids with food allergies as guests at your house. But my kids need to have normal friendships, so I love and appreciate those parents who are willing to take care of them when I’m not around.

My child might die because of your lunchbox choices

My kids’ school has awesome allergy protocols. I literally trust the school staff with my kids’ lives. What I worry about is other kids and their parents.

Our school doesn’t ban any foods. They inform parents that there is a kid with severe allergies in the class and they ask them to take that into account when making lunches.

There are some parents who I’ve heard grumble about this sort of thing. I get it. Kids are fussy and some of them are very attached to their routines and if you know your kid will eat a peanut butter sandwich you’ll want to put one in their lunchbox. I guess I’d just ask those parents to imagine they were me and that it was their kid who might get sick or die.

Imagine how you’d feel if it was your kid’s lunch that sent my kid to hospital. Parents have a lot of empathy for other parents and I’m grateful or that.

Kids, on the other hand, can be mean. I remember my own childhood well enough to know kids can be terrible to anyone who is a bit different. My daughter gets teased for eating weird food and for not being able to join in at the school bake sale or sausage sizzle. She even tells me about kids who will run after her with a food she’s allergic to, relishing the power they have over her life or death.

We all need to try to help our kids to have empathy for people who look different or who behave differently from themselves.

Eating out is not enjoyable

Eating out can be tough when you have dietary restrictions. My eight-year old has become very wary of new foods. Anxiety is very common in kids with allergies, so it’s important that I try to act really chilled out about trying new foods – but inside I’m often a churning with anxiety myself.

I always try to show them it’s no big deal. We can go eat somewhere else! I can make you something even better when we get home! Your plain chocolate is every bit as awesome as a Kinder Fucking Surprise with a toy car in it! I don’t want to minimise their feelings of being sad or left out – but we also have to get on in the world.

When we’re in a café and I ask if there is anything that is dairy, egg and nut free, I often get one of these reactions:

  • “This cheesecake is gluten free”: I can’t tell you how many times we’ve been offered a gluten-free food – as though allergies were interchangeable.
  • “We can’t guarantee anything is safe”: I know there are people with far worse allergies than my kids who can’t eat in a place where they have nuts in their kitchen, so this is an understandable response.
  • “This filled roll will be fine”: I buy a roll and find it has cheese in it.

I often encounter servers who pretend they know what is in something.  This is a typical exchange:

Server: Err… she could have the soup?

Me: You don’t sound sure

Server: No – no – the soup will be fine

Me: Okaaaaay… but if it’s not she’ll end up in hospital

Server: Should I check what’s in it?

Me: That would be awesome, thanks (about half the time I find that it indeed had an allergen in it).

When people with special dietary needs find a place that reliably has safe food, they will be very, very loyal customers. So café owners: it’s awesome business to have well-informed staff and one or two food items that don’t have the most common allergens in them.

The eight top allergens are cow milk, eggs, peanuts, tree-nuts, soy, wheat, fish and shellfish.

The woman who recently died from an allergic reaction in a Melbourne restaurant should be a wake-up call to all food servers. People put their lives in your hands. Please take it seriously.

It takes a village not to kill my children

My kids, like so many others, have health needs that can be tricky to accommodate. They also have social needs, like any other kid. They want to feel normal and included and to be like their friends.

Jessica’s daughters

I have privately and quietly cried after birthday parties when my daughter has had to sit away from the other kids, eating the food I’ve packed for her. And I have embarrassingly and publicly sobbed with gratitude when someone has made a birthday cake that she can eat.

We really and truly don’t expect the whole world to bend over backwards to meet our needs, but we deeply appreciate those who make an effort.

To the parents, school staff, friends, food-service workers, nurses and doctors who, every day, help to not kill my children – and to those who help them to feel ordinary: Thank you.

Jessica Hammond Doube is a playwright, blogger, non-professional actor and amateur oversharer. Her blog is at jessica-hammond.com. She lives in Wellington with her two deliciously odd daughters. 

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