Sophie* tells THE ALLERGY TEAM about the route to her son’s FPIES diagnosis.
“The first time my son tried egg as a toddler, we quickly realised he had a food allergy. He had eaten a home-made cake and within minutes his lips were swollen and he had developed hives inside his mouth.
Over the next few years, he went on to develop many of the ‘classic’ symptoms, typically associated with oral allergies – hives, throat itching, swelling around his eyes and lips and rashes.
By his fifth birthday, however, a new set of symptoms had emerged. He started waking every six weeks or so in the night, in floods of tears and clutching his tummy in severe pain. Over the course of the next two to three hours, he would projectile vomit, sometimes up to ten times an hour. By the end, he would only be throwing up bile.
Once he had stopped being sick, I would hug his small body in my arms. He always looked so exhausted and pale and would crash out immediately.
Although I couldn’t show it, I often felt scared as I sat with him in those small hours. I felt utterly helpless and would wrack my brains, trying to work out what on earth was happening to my gorgeous boy.
I didn’t readily associate allergies with vomiting like this. Besides, most of the episodes happened hours after he had eaten anything and when he had absolutely not eaten egg, which made things even more confusing.
The strangest thing of all was that, a few hours after he had stopped being sick, he would wake up completely ravenous and able to eat a large breakfast.
I began to keep a food diary and noticed that he had been sick after eating things like green beans, butternut squash, cherries, raw carrots and hummus.
Six months passed and I decided to contact my GP. She referred my son to a paediatric consultant. The initial feeling was that this might be a kind of cyclical vomiting linked to migraines, which can manifest this way in children.
However, I was still convinced that food was the trigger. I wondered if his primary school was accidentally serving him foods containing egg. I quizzed them about it, but they were insistent that no cross-contamination had happened. Staff suggested I should get him allergy tested again.
So off we went to see another doctor, an allergist this time. Until this point, the only test my son had had was a blood test for egg allergy when he was a baby. This time he underwent more extensive skin prick testing, as well as more detailed blood tests. The results confirmed not only an egg allergy, but also allergies to nuts, seeds (including sesame) and pine nuts.
Giving him nut-containing foods like pesto or hummus, which contains sesame, had clearly triggered some of his reactions. But I still didn’t understand why he had been sick on days when he had not eaten those foods or why he didn’t always develop more common oral food allergic reactions, such as mouth itchiness or facial swelling.
The consultant suggested a diagnosis of FPIEs, short for Food Protein-Induced Enterocolitis Syndrome. It was the first time I had ever heard about this condition. The doctor explained that certain foods were creating an immune response in his gastrointestinal tract (GI), triggering excessive vomiting and the extreme lethargy that followed. It also fitted with my son’s night time episodes, because FPIEs reactions can happen hours after any food has been eaten.
The doctor said that while cow’s milk and dairy – which my son could tolerate – were the most common FPIEs foods, other triggers included green beans and butternut squash. These were both red flags in my son’s food diary. He added that in theory, any food had the potential of triggering an FPIEs reaction.
The doctor also explained that if vomiting became severe, there was a risk of severe hydration and a drop in blood pressure. My son was prescribed an adrenaline auto-injector device (EpiPen), although we were told to seek help at A&E for intravenous fluids if he seemed very unwell. He was also prescribed an antihistamine for less severe reactions.
We chose not to do an oral food challenge via the NHS (where suspected allergens are given in a controlled hospital environment), because I didn’t want him to miss school. This form of testing has worked brilliantly for several of his friends with allergies though.
Instead, we worked with my son’s GP and school to cut out suspect foods from his diet for a while. As he grew older, we tried reintroducing some of them and discovered he could tolerate foods like green beans and raw carrot again.
It has been hard describing FPIES to other parents. If my son has accidentally been given a trigger food, the symptoms won’t show up until hours after a playdate or a party has finished. Everyone thinks he’s going home fine because he hasn’t immediately broken out into hives or started wheezing. They probably wonder why on earth we made such a fuss about a seemingly harmless food like raw carrot.
I recently had one well-meaning friend tell me she tried to make my son eat green beans because he was “claiming” to have an allergy to them. She told me: “He was trying to get out of eating his vegetables. I mean since when did anyone have an allergy to green beans?!”
Until you have sat with a scared child going through an FPIES reaction it is hard to understand why this is a condition that needs to be taken so seriously.
Thankfully, as he has grown older, our son has started to have fewer FPIES episodes. This may be partly because he is more able to avoid some of his allergy triggers or to explain to others why he can’t eat foods usually considered ‘safe’, like certain vegetables and fruits.
It also remains our hope that, like many other children living with FPIES, he will begin to outgrow most, if not all, of his allergies by the time he reaches adulthood.”
*Name has been changed
If you want to learn more about Food Protein-Induced Enterocolitis Syndrome (FPIES) please read our FPIES explained piece.
Disclaimer: All information provided by The Allergy Team Ltd is general information only. Please contact your GP or other qualified healthcare professionals for specific advice.