Before kids, Josh and I were very much live in the moment type people. Other than my own Coeliac’s disease, we really didn’t have much to worry about in regards to health. We of course knew that allergies were a thing, and that many people had them, but we didn’t know just how much it could and does affect your way of life.
When Damian was born in 2017, we really had no idea what we were doing. He was a happy but very unsettled baby. He didn’t sleep, he was always bloated and squirming and had eczema that we just couldn’t bring under control. He was constantly sick, with a croup-like cough landing him on prednisone and in the hospital a few times. Being told from medical professionals that these things were “normal baby things” and would resolve themselves in time, was honest crap. We knew something was going on, but without the right support we trusted what the doctors told us and carried on with the creams and hope that it would just settle in time.
It wasn’t until we started introducing food, and in particular a nasty reaction to scrambled egg the first time we gave it, did we really get an insight into what was going on with our baby. Fortunately, we were able to bring this reaction under control with antihistamines, but were referred to an immunologist to confirm our suspicions.
A SPT (skin prick test) was done, and allergies to both egg and cow’s milk were confirmed. Damian was to avoid these foods, and we would reassess after his first birthday. I was told it wasn’t necessary to remove them from my own diet (still breastfeeding at the time) even though I had noted the link between my own consumption and Damian’s reactions including his eczema. This didn’t sit well with me, so I thanked the doctor, and went home to do my own research.
Hours were spent trawling the net for anything that might help us, and we finally stumbled across a few Facebook allergy support groups that were honestly amazing. With the support from this new community, I began an elimination diet and within days the improvement was real.
Fast forward about 8 weeks, and my own health had taken a turn. Post-partum thyroiditis had hit hard, and it became too much for me to continue breastfeeding. Over the course of a couple of weeks, we transitioned Damian onto a rice based allergy formula. This was mostly successful, though our budget became very tight with it being nearly $40 a tin. This would prove a necessary evil when we trialled a soy formula for a few weeks which nearly ended in a hospital stay. D was fine for a few days, then began vomiting after every bottle, his eczema got terrible again and nappies became explosive. We thought at first that he had picked up a bug at day care, but put 2 and 2 together one night after he had projectiled on me for the 3rd time exactly 2 hours after he had finished his bottle. We switched back to the rice formula, and after speaking with his immunologist were reluctantly given a diagnosis of Food Protein Induced Enterocolitis Syndrome (FPIES) to soya. D still to this day can’t tolerate even soy lecithin.
A few months went by, eczema was a constant battle. Everything he ate seemed to flare up around his mouth and on his hands. After a reaction to coconut yoghurt at day care one day, and being told from his immunologist that coconut allergies weren’t common enough to test him for, we’d had enough and found another doctor.
She confirmed our suspicions with both a SPT and RAST blood test. He was allergic to coconut, as well as high range to dog dander and a whole lot of grasses and pollen. This all made so much sense to us, and so we made an effort to reduce his exposure to all of these things. We made the extremely hard decision to rehome our beloved Labrador to family, and made sure that Damian had long sleeves and pants or tights on when he was playing outside in the grass. What a difference this made! He was finally eczema free and his unofficial asthma was under control.
At 18months, we went to Sydney for a supervised baked egg challenge. He did so well through this, right up until we were about to head home when he became violently ill. Explosive diarrhoea and projectile vomiting for the next 24 hours, as well as a very severe asthma episode that took several days to bring under control. This illness was put down to a coincidental virus, even though we didn’t completely agree. It wasn’t until his next follow up with the immunologist that we were able to officially link his asthma attacks to allergies, as he had been completely healthy before his next SPT but within 12 hours landed an overnight stay at The Canberra Hospital (TCH) because of it. This episode convinced her, and we were sent away with an EpiPen script for “just in case”.
We’ve thankfully never had to use it for him, but it’s such a peace of mind having it with us, knowing that any reaction could potentially turn deadly.
His eczema has always been a problem however, and seems to flare with every virus, with the change in seasons, with accidental exposures. We’ve managed to get these flares under control relatively quickly using bleach baths and wet wrapping, but its still a constant battle – environmental allergies can be so hard to avoid!
We have just recently had a follow up SPT, and with numbers still increasing, it’s not looking too positive toward growing out of his allergies. We have plans to retrial the baked egg challenge in August, so now we just need to try and convince him to go ahead with it even though it might make him sick.
When L was born we knew almost straight away she had issues with dairy and soya. These were cut from my diet within the first 3 weeks, after eliminations and reintroductions were failed. Her symptoms were similar to Damian – reflux, mucous nappies, bloating, wouldn’t sleep on her back. Within days we saw a changed baby. There was however other allergies at play, that even now at almost 2 we are still working out.
After cutting dairy and soy, right up until we began introducing solids, she was such a chill baby. Lexi had been almost the complete opposite to Damian. She slept well, and was just so adventurous in everything she did.
She has always been an excellent eater, and will at least try everything we put down in front of her. At 6 months, we began the baby-led weaning journey with her, and with what felt like each meal, she would react. Our issues however stemmed from the fact that a majority of Lexi’s allergies are non-IgE, meaning that it can take hours or sometimes days to see the reactions. With my coeliac’s disease present, we removed gluten which did help but not to the extent we had hoped.
Off to the immunologist for SPT, which showed IgE allergies to peanut, cashews and eggs. We were referred to a paediatric gastroenterologist to begin the coeliac assessment, and discuss her other “intolerances”. But several months went by before we were able to see the paediatrician.
As we had been on a strict gluten free diet, we had to gluten load for 6 weeks before we were able to do any testing. (check out Testing and diagnosis of coeliac disease in children for more info on this) Unfortunately, trying to force an almost 1 year old to continue eating anything after she figures out that food is causing her upset guts is basically futile.
Within almost 24hours of reintroducing, Lexi had turned into a gremlin. Eczema flared almost all over, dark circles around her eyes (also known as Allergic Shiners), bloating, alternating constipation and diarrhoea, wind, and she DID NOT SLEEP! We got about 3 weeks in before she flat out refused to put anything in her mouth that wasn’t boob. Man was that exhausting. In the end, the serology came back inconclusive, which put us right back where we had started with a plan to reassess after she is 4. I actually believe we have pinpointed the issue being wheat and not gluten anyway, as she is not able to tolerate wheat glucose but has been fine with other forms of gluten.
In November we had a follow up with the immunologist, and after another SPT, we had added banana to the list. We began a month of an asthma preventer puffer to see if this would help with a persistent overnight cough, and if in a month it did we were to trial cashews and peanuts as the numbers were looking positive.
Whilst peanut wasn’t an immediate fail, it did result in an eczema flare, as well as bloating, constipation and mucous again, and another week of sleepless nights. So we’ve added peanuts to the list of legumes she is still avoiding and putting it in the non-IgE category. Those that we have trialled and failed are soy, peas, chickpeas, broad beans, fava beans, green beans, and she also can’t tolerate guar gum (which we have found is in almost all gluten free packet foods and flours, as well as a whole lot of dairy alternatives)
Cashew on the other hand, was a massive fail. We hadn’t had a chance to trial that one at home as Lexi hadn’t been well enough due to day care colds and gastro and hand foot and mouth and I honestly could list so many other viruses it’s not funny…
One weekend both kids had had a sleepover at my parent’s house – their Lannie and Poppy. Lexi had just woken from her nap and as they were getting organised to come home, she was given some dairy free yoghurt. A simple mistake was made in grabbing the wrong tub at the supermarket, cashew yoghurt instead of almond. Now, I just want to reinstate the fact that anaphylaxis looks different in everyone, so please make sure you assess your own reactions appropriately (see the ASCIA Anaphylaxis Action Plan)
Lexi had about 2 teaspoons of yoghurt. Within 5 minutes, she had developed hives around her mouth and on hands where it had come in contact with her skin. Hives were also showing up in all her heat spots – groin, armpits, and neck. She became very upset, mucous/snot was flowing from her nose and dripping down her throat which was making her cough a lot. She was given an antihistamine at this point as per her ASCIA action plan.
Waiting for this to kick in, she became very frustrated and almost angry. Pulling at her ears, and trying to scratch the inside of her mouth. She was becoming extremely hot to touch, though she wasn’t feverish. Saw no improvement after 15 minutes, with slight swelling on lips, hands and feet, along with hands, ears and soles of her feet turning a red/purply bruised colour. Emergency services were called at this point, and they were told to administer her brother’s Epi-Pen (epinephrine auto injector) while they waited for the first-response paramedics to arrive.
By the time I got there (mum and dad live just outside of town, about 30 minutes from us), the reactions had mostly settled. A slight flare up of swelling and hives in the ambulance on the way to TCH, however it didn’t require a second dose of adrenaline and had settled before we reached the hospital.
We stayed under observation for 4 hours, and were discharged with a script for her own EpiPen.
I am honestly terrified to think what could have happened had they not had Damian’s EpiPen with them. This device saved her life, I am sure of it. And I am welcoming the addition of the Anapen when it becomes available in Australia after the EpiPen supply issues we’ve had recently.
We’ve since also added penicillin and latex to the list of potential allergies.
Penicillin due to full body eczema after exposure through breastmilk after I’d had a dose. And latex is just a hunch due to the reactions she has with bandaids, as well as the cross-reactivity with banana and we think also kiwi fruit.
You’d think after all this we’d be experts. But we are still learning. Every day is a new challenge. Every new food, every restaurant visit, and every trip to the playground we have to be vigilant. Our medibag goes with us everywhere. It carries the 2 EpiPens, a small bottle of antihistamines and syringes, the asthma puffer and spacer, as well the kid’s allergy plans. The kids both have their own smaller ones for when they are separated, as you honestly never know when you might need them!
I’m so grateful for the support we have in our family, as well as our health care team and communities we have found online. If you are struggling to find yours, please reach out. We know how difficult this life is to navigate without adding the lack of support to the mix.