Here at Aussie Allergy Mum we have an intimate knowledge of this relatively unknown and rare form of food allergy. Food protein induced enterocolitis syndrome or FPIES for short, is an allergic condition where children (and some adults) eat a food, and then 2-8 hours later they begin vomiting, and continue vomiting sometimes until they go into shock and become unconscious.
Until approximately 5 years ago, FPIES was relatively unknown and rarely diagnosed. But I often hear parents describe the reactions, and tell stories of trips to hospital and doctors putting it down to gastro. In fact, for most parents I talk to, the road to diagnosis is a very rocky and frustrating one.
Most GPs and emergency doctors are not familiar with FPIES. But the rate of diagnosis is rapidly increasing and awareness is growing. As FPIES parents, it often feels like you are constantly explaining FPIES to people.
People assume that because the reaction is not instant and characterised by the throat swelling closed, that therefore this somehow diminishes the severity and risks of a reaction, and in turn the anxiety of parents.
But FPIES reactions can be life-threatening.
The other difficult part of the FPIES journey is that traditional methods of allergy testing such as skin-prick testing and blood testing are not reliable for FPIES. Due to the different nature of the reaction within the body, these tests are generally all negative, even to the foods that cause the most violent reactions. The only way to know if a food is going to cause a reaction is for the child to try it and see what happens.
Let’s just think about that for a second!
No reliable tests, every food you try could land your child in hospital. No wonder the quality of life of parents with children with FPIES is so negatively affected by this disease!
The good news about FPIES is that in most cases, children only have 1 trigger food. Most outgrow their triggers and begin to tolerate the foods they were once allergic to by the time they head to school age 5. This is not always the case however, and some of these children go on to develop allergies, intolerances and other allergic conditions that mean their journey does not end at 5.
It has been over a year now since we have seen a severe FPIES reaction from Miss 4, mainly through careful management. She has outgrown some of her most severe triggers, but the hard part is, to know if they have outgrown them you have to try them! (This is normally done in hospital under strict medical supervision.)
I speak daily to hundreds of parents of children with FPIES. There are great internet support groups available. It is not so rare as once thought. But awareness is low and this makes this difficult disease more isolating. The more people who know, the more people that have some understanding, the easier it is for parents to find support and encouragement!
If you have child with FPIES and need support, reach out!
If you have read this info and think, hey I recognise those symptoms, reach out!
And if you know someone with a child with FPIES, reach out to them, let them know you read about it. Ask them how you can help to keep their child safe and included next time you catch up. It really does mean the world to us!