5 Things I Wish the Doctor Told Me When My Daughter Had Her First Anaphylactic Reaction

Photo by Daniele D’Andreti on Unsplash

I was barefoot and wallet-less the day I found out my daughter, Billie, had an anaphylactic reaction to peanuts. Eggs and most tree nuts were added to the “prone to anaphylactic reaction” list in the coming months.

Was expecting to do a quick pick up from my parent’s house, head home and catch the last online work meeting for the day.

Well — as we know, plans can change — in an instant.

When I arrived, I took one look at Billie and knew she needed help.

Her face was swelling to a point it was unrecognisable.

She was pulling at her throat and coughing.

At 20 months old, she didn’t have the vocabulary to tell me what was going on. Her body clearly showing something was not right though.

Billie had swiped some of my Mum’s peanut butter toast minutes before I got there. She had eaten it before, but this time she ended up with very different consequences.

I put her in the car with my mum sitting next to her and sped to the local chemist.

What I should have done is phone for an ambulance.

It was all new to me, and in the moment, I did what I thought was best.

The chemist was like — um no, not our department —quick, see the doctor next door.

We were rushed through. After a quick jab in her leg with adrenaline and an ambulance ride to the hospital — the emergency doctor was telling me Billie had had an anaphylactic reaction.

We are forever grateful to each of those who helped care for Billie that day. And each day since.

The emergency department was and is constantly filled with so much hustle and bustle; I completely understand how the care and attention from staff is stretched.

During the seven hours in observation, we were given a short video to watch that showed us how to use an epi-pen, filled a script for two epi-pens and was told to book in to see an allergist.

Billie, after she was almost back to herself — sitting up playing fun hats with “clean” spew bowls — her Penny toy had a whole other adventure that night when we accidentally left her behind — luckily because of her “uniqueness” she was found… phew! Photo my own

It all felt like a whirlwind.

A journey started that I had no idea would change our day-to-day life as much as it did.

This was the first time I had ever encountered allergies in my life—most of what I saw in the video forgotten in the stress of the moment.

It was 6 months until we could get in to see the allergist and Dr Google was terrifying!

As a new mother still figuring out how being a parent fit into my world, adding allergies and anaphylaxis to the mix, well — the combo was confusing, to say the least.

These days, thankfully, there are some amazing resources available, but still, I have heard from other parents of the newly diagnosed child kind, these nuggets of information aren’t given straight up. The waiting lists for specialists expanding to over 12 months now.

It is a seek and maybe find game while they wait.

These are 5 things I wish I could tell the Mum I was 6 years ago. Sharing them in hopes others may learn from my insights and avoid some of the pain and strain of walking into the unknown.

1. It is not your fault

I didn’t hear these words until a few weeks ago.

It wasn’t during an appointment either.

It was from a specialist hosting an allergy research seminar I went to at the hospital.

Instead, I got questions like,

“Didn’t you eat peanuts and eggs when you were pregnant?”
— Yeah, I did eat them

“Do allergies run in the family?”
— No, not that I know of – until now

Didn’t you feed your kid eggs and nuts before they were one?”
— Yep, did this too

Questions that made me feel like I could have done something to prevent my child from becoming anaphylactic.

A stigma that triggered a feeling of guilt in me. Guilt that I carried around for way longer than necessary.

The fact is, they don’t know exactly why people get allergies or anaphylaxis.

Or why the stats in Australia are currently at 1 in 10 children that will get diagnosed with allergies or anaphylaxis.

I have heard many theories and have some of my own, but none are 100% consistent or proven. There is no one answer that fits all.

The day I heard the words “it is not your fault” from someone with letters after their name — well — it felt like a massive weight had been lifted.

So please — let go of any guilt you may be holding on to. It ends up draining your energy. Energy that is needed to help your child and save your sanity.

The quest to find an exact reason has even the experts stumped.

Certain there is an answer out there waiting to be discovered, but I have a strong “feeling” it will not be a singular root cause.

The more sharing we do, the more answers will surely come with time.

If it helps, remember there are cases where only one twin has allergies and the other doesn’t.

Proof in my mind that it isn’t a clear-cut link to environmental or genetic causes in, or ex utero.

2. Reactions are rare, but the management of risks is everyday

I didn’t fully comprehend the management of allergies until the lessons started coming in thick and fast.

My sister had eaten a pasta salad for lunch one day — it had an egg mayonnaise dressing on it. Several hours later, she kissed Billie on the lips. She reacted — vomiting bile for around 12 hours, hives and welts all over her body. What is classified as a mild reaction.

BUT mild reactions can turn into anaphylaxis quickly, so still must be monitored carefully.

Lesson learned. No kissing on the lips.

Then came the birthday parties.

One that stays with me most was when Billie was two. After the candles were blown out and the cake was eaten — sorry the icing was licked off the cake — what is with kids only eating the icing?! — kids were left with eggy crumbs all over them.

One of them gave Billie a nice big hug. Adorable right.

Next minute — yep, you guessed it more bile — all over Mum- aka me!

I was pregnant at the time and barely coping with morning sickness. Hence the vivid memory of driving home with spew all over me while keeping an ear out for Billie’s breathing. Side note — whoever named it morning sickness never experienced morning sickness! It can strike at any time — day or night!

Then there is the restaurant scene.

Call ahead.

Check there are things on the menu that are allergen-free.

Yep! Happy days.

Give the run down to the waitress working when we arrive.

Order the plain margarita pizza as planned — tomato, buffalo mozzarella and basil as listed on the menu — check with the waitress again as we did on the phone that the base is allergen-free.

Hand over Billie’s allergy card that outlines once more that she is anaphylactic to eggs and nuts. Check.

Pizza comes to the table.

It’s delivered with a pesto swirl on top.

Well, pine nuts are a no go, so back it goes. Apologies galore. Don’t know what happened.

Yep, no worries — we understand.

Second time out —

Presented beautifully with swirl of garlic aioli –
aka fancy mayonnaise made with eggs
What the?!

No — now we don’t understand. Trust well and truly broken.

The safest way for us to have pizza — homemade all the way. Photo my own.

It was at that point we knew we couldn’t order food for our daughter when we were out.

Unless we were completely confident the staff were on top of allergy practices.

The traces, the mis-takes and the risks are too high otherwise.

We pack “safe food” any time we head out the door.

It has gotten easier as she has grown. The hands go less in the mouth and Billie is more aware, as are the people around her.

We have learned and been lucky none of her accidental reactions were fatal.

Now there are other things to navigate like playdates at other people’s houses, sleepovers, camps, first dates, alcohol exposure etc. The learning continues.

As I said, the reactions may be rare, but the risk management is there.


Which leads us to number 3 —

3. It is normal to have some anxiety

How can you not?

You have seen your child have trouble breathing. Being rushed to hospital and not knowing if they are going to be ok.

That stuff stays with you.

Not to mention when you hear news stories about someone who has died from anaphylaxis even after administering an EpiPen.

Yes — our ears are more tuned into this type of information, and these stories stay with us, BUT we have to move past the fear to focus and respect the risks while empowering our kids to do the same.

Otherwise — we’d never leave the house.

It took me time to train myself not to go down the spiralling trains of thought and stay in the moment.

The tools to train those thought muscles are infinite—we each find what works for us.

A trail of shining lights that expands each day when we start seeking.
Many of mine have been found exploring the golden labyrinth of words on Medium MindValley another shining light for me — think, Jeffery Allen, Michael Beckwith, Vishen Lakihiani, Dr Shefali, Donna Eden, Anodea Judith, Eric Edmeades and more.

Matilda meditating — photo my own

4. Society will not understand on the same level as you do

As the old saying goes — you don’t fully understand another until you walk in their shoes.

Unless you live the day-to-day,
it is so easy to be blasé about allergies.

The number of times I hear —

“She will grow out of them.”

Isn’t there a jab they can give them now”

“That never happened in my day — you need to give it to her more.”

… is incredible.

Yes, these are all thankfully possible, but in that exact moment, it may not be possible for a number of reasons.

Each case is different.

Each person is in a different stage of their allergy journey.

If someone is talking to you about it, then for them it is still way too risky to be exposed to the allergen and the likelihood of them having an anaphylactic reaction is too high.

The knowledge and understanding is growing, but, for the most part, people won’t get what you go through each day to try and keep your child safe — on top of the usual safety measures parents take.

Sharing your story helps the amplification of the risks.

Be loud, be repetitive.

Your sharing helps keep your kid and others safe.

We can’t allergy proof the world, but the more people that know about them, the better.

5. Empowering your child with knowledge is crucial

When you can’t be there for your child — at daycare, school or even in the care of friends or family, they need to become their own advocate as soon as they can.

Off to school she goes — photo my own

They need to know what their allergens look like, how to read them on a label, what questions they need to ask to keep themselves safe, when and how to use an epi-pen.

I have seen kids as young as 3 ask if the chopping board used to cut up something was used for cutting up their allergens.

They can do it.

But there may be times they forget. And times others forget.

Billie had a mix up at kindy one day.

The class was decorating cupcakes for someone’s birthday. Even though I had ensured there were egg and nut-free alternatives for her in the school freezer she ate the cake.

I imagine she got caught up in the fun of decorating a cake and simply forgot.

As her teacher did.

Easy to do in a classroom with over twenty excited kids.

Well — that didn’t turn out so well.

Her teacher, who ended up covered in bile, and her learned a valuable lesson that day.

Such is life with allergies.

The takeaways

Remember, it is nobody’s fault your child has allergies and is prone to anaphylactic reactions.

The reactions are rare, but they happen. And they can be fatal.

Being aware is paramount, but so is being able to have fun.

As a parent, you can never fully switch off BUT the balance is possible when we accept we can’t allergy proof the world; take the steps we need to take to minimise the risks and ensure everyone, including our child, is as aware as they can be.

Thank you for reading

Thank you for being you

Originally published on Medium

The Face of Allergies

POETIC RANT  | The fight for allergy-free foods

This is the face 
Of what so-called food can do

A mild reaction
Breath still in action

Allergens the trigger
No warning, no sticker

Producers fucking with food 
Untold processes skewed

Numbers with no names
GMO games

What is our food eating?

Feed grown in soils or sands
Laced with chemical strands

Grass or glyphosate 
Is it too late? 

Rage rises in me

Driving me to ask more
Who is this food safe for? 

Resistance still there

Do I run and hide 
Or chase the rollercoaster ride

Grow our own
Together or alone

What will become
For the food in our tums?

Rollercoaster ride initiated. 

One conversation at a time. 

Credit for the subtitle goes to this enlightening documentary released late last year — 

Fighting for Allergy-Free Food

Thanks for reading

Thanks for being you 

Please shout out in the comments or via allergyangst@gmail.com if you have a story you would like to share about allergies.
I would love to add them to the publication on Medium — Allergy Angst or reblog here on WordPress.

The power of sharing your story is what is driving me— so — 
NO writing or grammar police here. 
My sole wish is to read and learn.

Disclaimer — I have only the bare basics on how to run a publication and wordpress blog for that matter — but certain I will find my feet along the way. 

Feature Image – Matilda — 5 minutes after eating traces of eggs — sneaked a lolly from her sister’s party bag

Originally Published on Medium

What Happened When I Ate Peanut Butter

Written from the perspective of my daughter, Billie.

Hospital time for Billie after her first anaphylactic encounter with peanuts

When I was one, I swiped some peanut butter toast
It was up high so I had to climb, not that I’m gonna boast
It tasted delicious but something wasn’t right
My eyes felt funny and my throat a little tight

Mum said, “That’s it. To the car right away!”
Off to the chemist without delay
He took one look and pointed us to the doctor
Who pricked my leg cause my breathing shocked her

Off with my mum in the ambulance, I went
Straight to a hospital, she said that meant
For 6 whole hours, they made me sit
I was also poked n prodded a bit

Mum and Nanny kept me entertained
And a cool new cardboard hat* I gained
I’d be tired after, the doctors said
But I was in no mood for bed

Mum says I hardly slept a wink
I reckon I was just trying to think
What it all meant and why my eyes still felt tight
Next time I’ll stick with vegemite

Eggs also make me feel yuck
Any trace of them and I upchuck

A special allergy man checks my progress
He draws on my arm as part of the process
Then nicks me with stuff that makes me itch
I sometimes scream at a very high pitch!

My family and friends are helping me learn
To be aware and safe is their main concern

I carry my epi-pen every single day
And before I eat remember to say

“Does this have eggs or nuts in it?”

PS: before you kiss my loveable cheeks or use my water bottle
Please know, the smallest trace can trigger reactions full throttle

*the hat was a hospital spew bowl as shown in the pictures

Allergy Angst at Parties and Gatherings

How being human amongst lots of other humans is risky to an allergy sufferer

“Billie, would you like one?” Across the picnic table, I watch as someone offers my daughter a mini sausage roll. Pastries usually have an egg wash, or people sometimes bind the filling with egg so I am about to shout out a mum demanded “No!”

“I am allergic to eggs and nuts,” she tells them as her little sister Matilda grabs one.

Phew. “Good girl”, I think.

The next thought is “I have to make sure when Matilda finishes that food I wash her hands and her mouth out”.

I recall the time I was distracted by life and forgot to. Matilda ending up drinking from Billie’s water bottle and triggered an allergic reaction in her sister.

During the aftermath of that, Billie managed to knock her nose on the spew bowl she was using at the time.

The guilt I experienced as I witnessed the fear in my daughter’s eyes as she spewed, holding her nose and trying to cry is near impossible to forget. Tears are running down my eyes as I write. A lump forming in my throat as my mind takes me back to that moment in the past.

All from a simple mistake on my part and not paying attention.
Reacting to life’s pulls and tugs instead of being fully present.
Not taking the steps I needed to provide my daughter with a safe environment on repeat.

  1. Taking a phone call and forgetting to wash Matilda’s hands and mouth after she had something with egg in it while we were out
  2. Not preventing Matilda from taking a sip from Billie’s water bottle as others talked to me during a school pick up
  3. Forgetting Matilda drank from Billie’s water bottle
  4. Not washing the bottle out when we got home
  5. Watching as Billie took a drink from her water bottle with traces of egg on it, and only realising then what I had done —
  6. Attempting to accept the isness of what was to come from my distractions.

I may be being a melodramatic mother, narcissistic even some may say. Either way, it is a memory that still returns years later to remind me to pay attention.

To add a bit of context, Billie is anaphylactic to nuts and has an allergy to eggs.

Nut exposure means a jab of adrenaline, an ambulance ride and 6 hours of observation in the hospital. Reactions can worsen/return within a 48 period after exposure so throw in a couple of sleepless nights for me and her dad as we take turns in monitoring her.

Eggs when directly ingested will make Billie vomit bile for a good 12 hours. When she indirectly ingests egg (say from a kiss from someone who has eaten eggs that day, or as a 5-year-old still often does, unconsciously puts her hands in her mouth after playing with something that has a smear of birthday cake on it) she will vomit bile the following day for most of the day.

In both egg instances, a rash will hang around on her body for a couple of weeks and then usually she will have a few days of high temperatures and a sinus type infection.

Taking this into account, after years of learning, mis-takes with the side of mummy guilt, I try my very best to minimise her exposure to eggs and nuts.

Back to the family picnic. At this stage, I have completely stopped paying attention to the person I was talking to. I apologise if you are ever this person. As parents, most of us have the understanding nobody is “fully” present when their little treasures are still learning to navigate the world. Yay for support vs judgement!

On to the next thought. My mind starts racing again, “That person must not have been here when I announced Billie’s allergies.
I need to go tell them and check who else is here that I haven’t told.
I need to go tell Billie I was proud of her for saying no.
Oh, and I must remember to wash Matilda’s hands and mouth..has she finished that sausage roll yet?!
Ah, maybe I should have stayed home…it’s so much easier!”

Since raising a bubble child is not on my agenda, I need to get that last thought of staying at home out of my head. What I need to do is take a breath, settle my racing mind and focus on working through the parts I can control and manage one at a time.

One of the things I can control is packing our food. The others,

  • To always carry an epi-pen
  • To make sure everyone at the party or gathering is aware of her allergies. Be clear that she is only to eat her safe food. Add in the final comment I still cringe at saying, “Please don’t kiss my daughter on the lips”
  • For me to stay alert (and sober — that’s another story of social pressure!)
  • For me to keep aware of Matilda
  • Make sure to remind the girls to drink from their water bottles
  • Make sure they wash their hands before they eat
  • Make sure I keep track of what I am eating
  • For me to keep empowering Billie to be aware and control her risks.

What I can’t control is how others take this on board.

I completely appreciate and understand why those who don’t deal with allergies daily may not understand all the facts. Geez, I am still learning myself!

I understand people want to include everyone when offering food around.

I understand we are all human and get distracted.

I understand we have different beliefs about how to treat a health condition.

I understand kids are going to touch things that others with allergens on their hands have touched.

I understand people believe they have found the next big cure for allergies and want to test it out on my kid.

But damn all these things make it tricky in a social gathering.

Especially when the people offering Billie food or a kiss are people she trusts.

There have been times where people truly believe they are offering my daughter safe food, but in the moments that follow there is a realisation that Oh! Whoops!
“I only checked it had nuts in it”. The reality was that it contained egg whites.
“Ah, it is just a carrot. It’s ok” Then the realisation when I make a point “Sorry! I didn’t think about the dip with nuts in it on the same plate”.
The list goes on.

I often start overthinking and wonder the impact it will have on Billie’s connections with people. Am I making her a leper? I know when I make the announcement and the preceding conversations and questions about her allergies make her embarrassed. I tell her, “I wish there was another way my sweet, but until we come up with a better way to keep you safe, this is the best your mum can do”.

No matter what challenges come up in our lives, I need to accept that I can only do the best I can do in that moment. I need to stay focused on what I can control, accept that life will happen and be as prepared as I can be.

This story can be found also on Medium