My son's food allergy is like having a gun pointed at his head

My son's lips during his 'mild' reaction.
My son's lips during his 'mild' reaction. Photo: Photo: Suzi Catchpole

Telling people that living with our son's peanut allergy feels like having a gun permanently pointed at his head isn't something I do much, but it's true.

His latest reaction has thrown his father and me into the very depths of our fears. Fears for his life, fears for his future and fears for ours. Because if we ever have to live without him, it won't be much of a future for us.

In the capable care of his allergy-aware grandmother, my five-year-old son encountered a child he had known at his preschool. The child was excited to see him and ran at him to envelope him in a big hug. It looks like that hug caused the reaction you see in the photo above, because it also looks like that child had been eating peanut butter.

As a result, we now have to ban hugs from old friends. Or take on the uncomfortable task of getting between them, halting their joy and asking the child or parent if they have consumed peanuts recently, before they are allowed to touch. Awkward.

It's nothing short of a living hell, our child's life constantly in the hands of others, knowing that at any time a reaction like this could become anaphylactic shock and take his life away.

While a good dose of antihistamine had his lip under control in an hour, it's cold comfort that he's okay this time. The nature of an allergy like this means it could become life-threatening next time, or the time after that. Or in five years. Or when he's 35.

We just never know.

What I did know thanks to our experience with his older brother's egg allergy was that his sometimes out-of-control eczema as a baby could mean he also had food allergies. So we took him for allergy testing at 12 months of age. We weren't prepared for him to be allergic to something that could kill him.

We didn't realise just then, the myriad ways it would affect him, his brothers and our family life. Eating out is rare and risky and he may never travel to Vietnam, Indonesia, Cambodia, Thailand, Laos, Malaysia and all the countries where peanuts are a staple of the cuisine.

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Leaving him with people other than my mother and school is impossible. He has only just started school and play dates simply won't happen without me interrogating the other parent extensively.

In the future he might be denied school camps, trips away, dining experiences others take for granted, and certain types of social occasions.

He may have to sever associations and friendships with people who disregard his allergy.

And contrary to what many people believe, his risk of adverse reaction only increases as he gets older. Increased independence, decreased parental supervision, peer pressure and teenage risk-taking pose the greatest dangers to him in his entire life.

It will affect everything, basically.

While things are still relatively simple now, we deal with constant misinformation. It feels like every week we are told by well-meaning, non-allergy-affected people about some new study that people interpret as a 'cure.' It never is. Not yet at least.

Allergy parents know never to get excited about these reports. We already know about all of them, so hearing about them seventy times is not what we need.

While there's hope, it takes years for these studies and treatments to trickle down to people like my son. The advice to us from his immunologist is always 'complete avoidance'.

I fear that the coverage of these stories make people even less aware, caring and vigilant because they internalise that somehow allergy kids have access to these cutting edge treatments. Even if they did, there's a strong chance it wouldn't work for a significant percentage and they can relapse at any time.

Jokes about food allergies and the parents who supposedly pander to them, are agonising for us. Any allergy parent would tell you that they would do anything for this not to be happening to their child and desperation and despair follow us everywhere we go.

And if I'm told one more time that eating peanut products in pregnancy and during breastfeeding could have helped our child, I may implode. As an already seasoned allergy parent I did all of the things and he was allergic regardless.

People seem relieved to know he is okay after a reaction but for us, every reaction means another exposure may be fatal.

He is never okay. Literally never.

There is no time ever we feel relief. There is never a time he couldn't just slip away from us forever.

Food allergy is the invisible gun pointed at our son's head and we have no way of taking out the culprit.