My son’s food allergies and a few close calls

Our lives changed dramatically when our son was diagnosed with food allergies at 6 months old in 2005. He’d had hives, eczema, irritability, regurgitation of milk, red “panda” eyes and cracked bleeding skin since birth, but we never ever considered food allergies as being the cause.  Our GP told us to buy 100% pure cotton everything because it must have been his clothing, bedding or sensitive washing powder causing all of this!  We did everything we were told, but unknown to us, my breastmilk was passing on all of these allergens to him and causing him so much distress. 

So, now he was diagnosed, we had to be careful and avoid dairy, egg, potato, wheat and all nuts, plus we learnt he also had allergies to dust mites, dogs, cats and many grasses.  We already had a three year old, so life had to go on as normally as possible.  Modifications were made, precautions were taken, ingredient labels were read and re-read with every product we bought.  His EpiPen®, antihistamine and Ventolin® went everywhere with us.  His skin cleared up, his temperament changed and he was a happy, settled, chubby baby!

We had a few hiccups along the way.  At two years old, he grabbed an ice cream that his brother had been eating and took a bite.  His face swelled, he broke out in hives and produced what seemed like an inhuman amount of mucous, coughing, wheezing and sneezing the whole time.  We gave him antihistamine, which did nothing, so administered the EpiPen and within minutes he was so much better that the doctors and nurses at the emergency department questioned why we’d used the EpiPen.  Our allergy specialist said we did the right thing, though.

Slowly, over the years he outgrew all of his allergies except cashew, pistachio, and pine nuts, but also developed a sesame seed paste allergy (which he’d been fine with when young, but now is considered to be life threatening).

Then at about 10 years old, he’d eaten what we thought was a “safe” meal and he went to bed.  Within a few hours, he woke us up with this look of fear in his face and was displaying the same anaphylactic symptoms.  We gave him antihistamine and administered the EpiPen straight away and off he went to hospital.  He was scared at that point, as we didn’t know what had caused the allergic reaction (and still don’t).  He said the needle didn’t really hurt and was relieved by the effects of the EpiPen but did not like the shakiness afterwards, nor the hours-long hospital visit, or all of the drama that went with it.  But we explained to him that it had saved his life….. but I could tell that he now seemed a bit hesitant.

He missed out on many things over the years because of his allergies.  We made so many “copycat” takeaway recipes to try and let him experience things he showed interest in and his friends talked about, like KFC, doner kebabs, donuts, and ice cream cake (which tastes just a bit different with soy ice cream!). We even bought him vegan cheese meat-lovers pizzas (ironic, I know, but the shop we bought them from were “safe”!) to friend’s pizza parties.  We were heartbroken when we found out he had been excluded from things because of his allergies, so we tried our best to help him live life as normally as possible.

So, he’s now made it safely to 13 1/2 years old and is in year 8 at high school and he is a six foot tall, thriving, intelligent, kind-hearted giant!  He’s a good kid and carries his action plan, EpiPen, antihistamine and Ventolin everywhere with him in a little sports waist bag. 

His school has an upcoming walkathon day and the P&C decided to do a fundraising event, selling butter chicken and rice to the school that has over 1,000 students (with quite a few of them carrying EpiPen’s in their school bags).  The plan was for numerous parents to all buy the same brand of butter chicken sauce, buy chicken breast, cook it exactly as stated on the jar and bring it, refrigerated, to school the next day, so it could be reheated and served to students. 

I avoid pre-made sauces because of the contamination risk and I had definitely never bought this brand of ready-made sauce before because they also made other products with cashews, but I bought a jar and read the ingredients….. they seemed safe.  The only warning was: “ALLERGY ADVICE: Contains milk. May also contain traces of peanuts and tree nuts”.  He has never reacted to trace amounts before, so I assumed it would be safe to try. And I really wanted him to be able to buy some butter chicken on the fundraising day with his friends and feel included!

So, I trialled my son with less than a teaspoon of the sauce the night before cooking it, just to see if any reaction did occur, but he seemed to be okay.  And the next night I cooked the sauce exactly as instructed on the jar with just chicken breast and canola oil (both of which he is fine with) for my family’s dinner.

Within 15 minutes of eating a small serve, he started developing hives, had swelling of his eyes and face, started coughing and sneezing, had diarrhoea and breathing difficulties.  These are all signs of anaphylaxis for him.  We are lucky that he is older and can communicate with us how he is feeling.  He also begged us not to use the EpiPen, so we treated him with a double dose of antihistamine (when the first one was not effective enough, we gave him another) and Ventolin, which luckily worked.  We were minutes away from using the EpiPen.  Then we monitored him all night.  It was a very LONG night! [Editor’s note – always use the EpiPen if you have breathing difficulties as per your ASCIA Action Plan]

We live two minutes from the nearest hospital, so we hoped that we could respond quickly if he started to deteriorate. In hindsight, we should have just used the EpiPen straight away, but we didn’t want to distress him any more than he already was.

My son is 13 and we took a careful and calculated risk so that he could hopefully enjoy the fundraising event with his friends.  Luckily he could communicate his symptoms quickly and clearly.  Every moment, though, I was watching him with the EpiPen in hand, knowing I should just use it, but wanting to respect his teenage wishes.  Luckily for us, he recovered, but in hindsight, I also realise that that could have been the biggest mistake of my life!  And when I contacted a lovely lady at Allergy & Anaphylaxis Australia, she reminded me of the need to use the EpiPen at the first sign of breathing difficulties, and that hesitation can lead to the EpiPen not being as effective if the reaction has already progressed too far. 

This was a great reminder for myself and my son.  I told him exactly what she said that “we also know that adrenaline needs to be administered early at the first sign of severe reactions as sometimes reactions can progress so rapidly that the adrenaline can’t work and death results”, which reinforced the need to use the EpiPen as soon as necessary and not take a “wait and see” approach.  We were lucky.  Lucky that he recovered.  And lucky that we have wonderful people out there, supporting us parents of food-allergic kids.

I’m sure we’ll still have hiccups in the future, but I’m confident now to trust my gut feeling and remember to not take unnecessary risks.  Stabbing your child in the thigh and calling an ambulance is much better than planning a funeral….. trust your heart 🙂