Harry was six months old when he tried egg for the very first time. Two hours later, Harry vomited continuously until he turned white, cold and floppy.
What his mum Marley initially thought was just an upset tummy turned out to be a life-threatening allergic reaction. When she saw how white he was, she rushed him to a GP clinic.
After being assured it was just a random gastro issue – as there was no hives or swelling associated with anaphylaxis – Harry was monitored for a few hours, and they were sent home with some information about egg allergies.
A few weeks later, his family went through the same scary experience when Harry tried rice.
Two months later, Harry was diagnosed with a rare, life-threatening food allergy known as food protein induced enterocolitis syndrome (FPIES). FPIES is different to most allergies as it only affects the gastro system and mostly only seen in infants and young children. Sufferers can react to any food, and symptoms involve profuse vomiting, severe dehydration and shock.
“The only treatment for FPIES is to completely avoid the known food triggers,” Marley said.
“This can be so difficult with rice, as rice flour is used in many products and rice is not really considered a common allergen, so lots of food labels don’t call it out like they do for egg, milk, and soy.
“Harry even reacts to the food protein found in breastmilk, so I have had to be on a very restricted diet as well.”
Harry, now 18 months, recently spent nine days at the Queensland Children’s Hospital completing food challenges in an aim to liberalise his diet. In this time, they hit a few milestones as they passed eight new foods during the stay.
“Most children start to grow out of FPIES at the age of two, so we will come back in six months to do some more food challenges for rice and egg, and we hope that by this time he will have outgrown the allergies, or the severity of the reactions would have decreased,” Marley said.
Despite his allergies, Harry has been hitting all his developmental milestones, and you can often find him playing at the beach, watching garbage trucks, and helping with the cooking in the kitchen.
“I’ve never really had an appreciation for how significantly allergies affect people’s lives,” Marley said.
“Living with severe food allergies can be very socially isolating, as so much of what we do when we come together with friends and families revolves around food.
“It’s so important to have a strong support network of friends, family and medical professionals.
“We are so lucky to have a network who have taken the time to understand Harry’s allergies and adapt social events to create a safe environment for him.”
Queensland Paediatric Immunology and Allergy Service
Australasian Society of Clinical Immunology and Allergy
Allergy & Anaphylaxis Australia
World Allergy Week