Welcome again to our world of food allergies and to where this all started for our kids – Isa, Mich, Seb and Liv.
Isabelle’s first anaphylactic reaction and subsequent admission to emergency happened at the age of two when she was given a piece of cake containing crushed cashews and pistachio nuts by a well-intentioned relative. Isabelle’s reaction was immediate, her face swelled almost beyond recognition, hives covered her small body and she was having great difficulty breathing. It was a frightening experience and it is still traumatic to this day remembering how quickly she reacted, literally one minute playing happily and the next we were rushing to the hospital. In a few short minutes, our little daughter’s life was in the balance. Stunned and in shock we began our journey down the path of life-threatening food allergies. The next few days were taken up in a whirl of visits to medical specialists, revealing that Isabelle had life threatening allergies to tree nuts, egg and shellfish as well as a severe intolerance to all milk products. We were to later find out that Isabelle also had a rare fpies diagnosis (food protein induced enterocolitis syndrome) specifically to mussels, which again landed her in hospital for severe dehydration due to severe and continuous vomiting.
Isabelle had in fact always been a very unsettled baby, showing what we now know were tell-tale signs such as an often very swollen, distended and sore stomach, explosive nappies, eczema and rashes, and an inability to get settled and sleep for longer than a couple of hours at a time, despite being breastfed on demand and despite the extreme caution I was taking with my diet not to eat any foods that were likely to irritate her when breastfeeding. As I was returning to work on a full time basis, we were advised by our health nurse and paediatrician to enrol in an in-house sleep clinic to try to settle Isabelle. Despite everyone’s best efforts and three different programs later, it was clear that nothing was going to work. We carried on with a routine of feeding on demand, relaying each other for continuous rocking throughout the night, and then bundling an exhausted baby at 6:30am each day for a long daycare and work day. How we sustained this routine whilst Isabelle was clearly always unwell and uncomfortable, is and will always remain a source of guilt and deep anguish for us. Mother’s instinct always told me that something was not quite right with Isabelle’s health but it continuously fell on deaf ears, frustratingly and wrongly put down to parental paranoia or anxiety. Her first anaphylactic reaction when she was only two years old and the subsequent diagnostic of multiple severe food allergies finally gave validity to all our concerns and meant that the focus could now be fully on addressing these.
Six short weeks after Isabelle’s first hospital admission, her little brother Michel was born. The recent turn of events with Isabelle meant that we were now well aware about the risk of food anaphylaxis. From the onset and always immediately after breastfeeding, Michel would scream in pain and his tiny body would be covered in red blotches. On medical advice, I was instructed to exclusively breast feed Michel for the first six months and to omit any food containing nuts or eggs from my diet. Not a difficult decision to make if it meant that my tiny son would hopefully be spared from having the same allergies as his sister. Michel was then tested at the nominated 6 months old and it didn’t take long to confirm that he too was severely allergic to tree nuts, milk, egg and shellfish, as well as sesame. A double whammy! Two little ones to care for with almost identical food allergies. Then when Michel was two years old, we found out after a traumatic outing to the beach where he swelled up like a balloon and collapsed, that he also had a very rare and severe allergy to cold water called cold water urticaria. Despite our skepticism (and us thinking that it had to be a reaction to the shellfish in the sea water!), this diagnosis was confirmed when Michel was urgently ushered to the children’s hospital. Yet another weird allergy to deal with!
Despite extreme care (including having made the decision to remove all offending food allergens from our house) and despite our constant vigilance, Michel had his first anaphylactic reaction to cow’s milk at the age of one when enjoying an outing to the local playground. The culprit was eventually discovered as being another child’s dairy ice-cream which had leaked onto the slide that Michel had been playing on. Like any toddler, he must have touched the slide and then put his hand to his mouth. A tiny trace was capable of causing another very scary episode in our lives. It was terrifying to realise that Michel’s reaction to milk could be as intense and immediate as his sister’s reaction to nuts. In fact his immunologist at the time ‘poetically’ labelled Michel as being exquisitely sensitive to milk products, and this was accentuated by the fact that he also suffered from severe asthma which itself resulted in a few hospital admissions. This diagnosis of milk allergy completely turned our routines upside down as milk is one of those foods that is particularly prevalent in any toddler’s life and hence the risk of cross-contamination extremely hard to avoid. Michel and his sister were both attending daycare on a full time basis and we had to supply all their foods and snacks with them every day to ensure that there would be no risk of contamination. This again took our daily routine to yet another level and put incredible pressure on the four of us as a family, all the while trying to keep bright and fully engaged in our jobs. How much we wished at that time for our family to be around us to help, support and comfort us.
We could never have imagined that another family, within our immediate neighbourhood, was also going through similar experiences at the same time!
Sebastien would sleep intermittently, never any longer than one hour at a time, He was always unsettled and uncomfortable after feeding and from birth had a strange rasping cough, referred to by the hospital anti natal nurses as a ‘strider’. This mystery cough, along with pronounced rashes, hives and eczema so bad it bled, would define Seb in those early weeks that turned into months. Many inconclusive visits to the doctor during this sleep deprived time eventually led us to a sensitive and well informed paediatrician who thankfully came to our rescue and prescribed little Seb an exorbitantly expensive pre-digested glucose formula that was only available on prescription with a government authority. Such was the power of this amazing formula Seb was at last a sleeping, smiling, contented and happy baby.To us that formula was the equivalent of tinned gold! This was to be a turning point, as in short, Seb finally began to thrive. Unfortunately our relief was short lived as a seemingly harmless crust of bread turned our lives upside down. The bread contained milk!
Liv, Seb’s older sister was lactose intolerant but never could we have imagined that milk would have resulted in such a severe reaction in her little brother. Within minutes of tasting that crust of bread Seb’s little face began to swell to the point where it was almost unrecognizable. Even scarier was the laboured breathing that accompanied the swelling. His little body was also completely covered in red blotchy hives. We were frightened beyond words but attempted to remain calm and composed for our own sake as much as anything. We rushed to the nearest hospital which was thankfully a short five minute drive from our home (at the time it felt more like an hour!). To our absolute disbelief, by the time we were pulling up outside the emergency department, a small familiar smile was starting to appear on Seb’s face. The relief was so intense that within minutes all three of us were smiling as we watched the swelling, rash and breathing return to normal. Several hours later, and with a hyperactive baby (‘wired’ on enough precautionary cortisol which ensured he stayed awake well into the night) we were discharged from hospital and allowed to go home. What had just happened? That leisurely family lunch hadn’t exactly gone to plan! Over the course of the next few days we attended many medical appointments. The conclusion was that our active, inquisitive and happy little boy was severely allergic to dairy, egg, tree-nuts, peanuts and shellfish.
And with that our two families were thrust into the world of food anaphylaxis – a word previously not encountered, much less able to spell!