Experiences of having a child with FPIES

FPIES is Food protein-induced enterocolitis syndrome.  

Before Diagnosis: 

Hazel’s first two reactions at the age of 5 months were mild. They seemed like reflux or mild gastroenteritis, with no other symptoms. I noticed them after introducing rice cereal as one of her first foods. Her third reaction was severe with prolific vomiting. So much that I could hardly believe such an amount of fluid could come out of such a tiny baby. And it just kept coming, nothing like gastro.

I raced her to the doctor and brought up the issue that this was the third reaction to rice, this particular one significant. The doctor noticed she was pale and wrote a prescription for a medication to stop nausea and vomiting. I asked if the doctor was sure and I was told if I was unhappy with the treatment to go to the hospital.

I felt a bit belittled and humiliated, and against my gut feelings, I trusted the doctor and administered the medication in the pharmacy next to the doctor’s clinic. By this time she was pale, very floppy and had clammy skin. I took her home and administered hydrolyte as best as I could via a bottle and syringe, as she simply would not swallow. What I didn’t know then was that my baby was falling into ‘hypovolemic shock’ and she could have died. Thankfully she recovered. But I will never be able to completely forgive myself for not taking her to the hospital.

Getting Diagnosed

Once things settled down I decided I could not accept what the doctor had told me, so I consulted another: good old Doctor Google.

I trawled through articles, stories of dermatitis and gluten free this and anaphylaxis that. I then subjected myself to some forums, you know the type, where one mum posts something seemingly innocent, and it turns out that someone takes offence, then it’s an all-out rant fest with mums dragging each other down. Then, one smart person simply posted a link: https://allergy.org.au/patients/food-other-adverse-reactions/food-protein-induced-enterocolitis-syndrome-fpies. Hallelujah. I started printing pages and pages to take to my regular doctor the next day.

My regular doctor was bewildered, but after reading my papers was very interested and very supportive and agreed that the best place to send her was an allergy dietitian. The dietitian confirmed for me all the symptoms were most certainly FPIES and recommended Hazel see an immunologist.  I got the support Hazel needed and morale boost I needed.

Allergy & Anaphylaxis Australia’s help

I then found the Allergy and Anaphylaxis Australia website which was fabulously comprehensive. Just slightly missing something. Any information on FPIES. I sent them a very simple email: Why is this so?

I got such a warm and caring response that I had to call Maria immediately (ok, phone tennis was involved!) An email would just not do. Maria and her team are amazing, hardworking, and doing a lot for us all. The phone call resulted in the website being updated to include FPIES. I believe this is an amazing win for the FPIES community and readers in general and it is well on its way to being understood. You can find that webs page here: https://allergyfacts.org.au/allergy-anaphylaxis/other-allergic-conditions/fpies

Biggest struggles – eating out and people not getting it!

The biggest problem is getting people to understand. To slow down and listen, and not assume it’s anaphylaxis, gluten intolerance or dairy or seafood allergy. All food needs to be checked, every time, including spices, sauces and meats. Shopping for groceries takes a little longer, as I am checking every item, even if it was safe before, does not mean it is safe this time. I check each item, even if I grab two of the same item, I check both. Rice is not a major allergen that needs to be listed in the ingredients if in small quantities (less than 5%) and it can show up in something that didn’t have it in last time. Rice comes in many forms and is in just about all food from yoghurt to meat.

The biggest annoyance with eating out is that most wait staff assume she is at risk of anaphylaxis. When I explain it’s not anaphylaxis… the amount of times they say something like “phew that is ok then” is startling. Ok?? Why is it ok?

Interrupting me to say “don’t worry it’s gluten free’’ doesn’t fly with my child – it almost guarantees her allergen is present. Many staff get flustered and annoyed when I ask them (very politely) if they could please check the ingredients on things.

Even when I have phoned ahead in a quiet time, to introduce the scenario of us coming in to eat, I have to reiterate they need to read the ingredients on all things I order for my child. All of the things.  Everything. The herb or spice packet, the seasonings, the flours (some flours are blended). Put simply, if it is a food, the ingredients need to be looked at. She just gets fish and chips mostly because I need to keep it simple for the wait staff.

Many people don’t know how to effectively read an ingredients list. Mayonnaise for example is an ingredient, but I need to know the ingredients in the mayonnaise. And the ham, and the relish and the bread etc.

Unfortunately, another experience I have had is I have noticed our hyper-awareness of anaphylaxis. It has taken centre stage for allergies so much now that it seems that any other allergies are simply not as notable or as important. Or even deemed deadly. Instead of us being allergy aware, we are more so, anaphylaxis aware. I am relieved my child does not have anaphylaxis, as it sure is terrifying, but that doesn’t mean I am glad that she has FPIES! We are so aware of gluten that we now seem to only be aware of gluten.

A big fear of mine was that my child may be exposed to her allergen during play dates, like at a playgroup or outings with friends, by sharing foods with another child, even though I remained beyond vigilant.  This affected my ability relax and chat with other mums, I could not let my guard down, I could not let my child roam free to explore (within reason!)

I was endlessly cutting conversations short to lurk behind my child to make sure she did not take another kid’s tasty looking biscuit or share another child’s yoghurt pouch. Small kids seem to love sharing foods! Which is cute, but dangerous.

If I did not see this accidental exposure and then put her down for her sleep, I was terrified that she would have her reaction during a sleep and I wouldn’t catch it in time. I was worried that she would be too ill to call out to me and she would fall into shock quickly, resulting in the worst case scenario. I often checked her during sleep, like any mum does. I just couldn’t relax.

Putting Hazel into daycare or crèche was another stressful experience, as I was placing my trust in someone else. It is all very well to say, can’t you just say ‘no’ to your very small child about the sharing of other lunch boxes, picking up a left behind muesli bar, or whatever it is. I assure you it is difficult to teach a small child this and feel confident that they will not share food. Hazel is nearly 3 years old and is beginning to understand this concept, but I can’t trust her… she’s too little. This is why I needed to feel confident with her daycare provider and crèche.

It is a very easy thing to make a mistake with ingredients. So easy just to miss that one little word. Rice. It can also be tricky sometimes to find foods that appeal to a lot of little children that is safe for everyone. I am so blessed that I have found my daycare provider to be vigilant in the same way I am. The staff have been totally awesome and it is obvious that they really are aware of what they are required to do.

The vigilance of the staff at my local leisure centre by maintaining a strict fruit and vegetable rule has made it possible for me to attend the gym and swimming lessons with my other child, Eve, aged four.

It has taken me ages to write this piece, mainly because I am actually very busy with study and two small children, but also because it is another thing for me to go through. I have to explain it again. It becomes tedious, and taps into the angst it creates. An effect of having a child with FPIES is that it results in its own special kind of anxiety and stress for me. Angst from the sideways look that people give, the ‘huff’ of the wait staff. The angst of wondering if someone has properly checked the ingredients of something.

The future

The immunologist now feel it is best to wait until age four for a supervised food trial to test if she still has FPIES to rice.