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.
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.
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.
Always.
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.
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.
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
Amy Marley 