Giving Back - FPIES - Food Protein Induced Enterocolitis Syndrome

Bit of a long post today but this is one close to my heart. Our youngest child, Jack was diagnosed at 5 and a half months with Food Protein Induced Enterocolitis Syndrome (FPIES) after eating his first food, rice cereal mixed with breast milk. After swallowing a few specks we ended up at the hospital for an over night stay.

FPIES is an allergic reaction in the gastrointestinal system. The most common triggers are milk and soy, but any food (even those thought to be hypoallergenic e.g. rice, oat) can cause an FPIES reaction.

FPIES is very rare. There has been an average of 5 children diagnosed with FPIES in Queensland each year. Our little boy is one of those.

Unlike most food allergies, the FPIES reactions are delayed and usually begin about 2 hours after ingestion of the causative food. FPIES reactions are characterized by profuse vomiting and diarrhea. In about 20% of cases the child will have such an extreme reaction to a food that they will go into shock and need to be taken quickly to the Emergency Room for immediate treatment. Unlike common food allergies, standard skin testing and blood testing for specific IgE are routinely negative in these patients.

Many children have only one trigger food and are able to eat a normal diet otherwise. Others have a few safe foods but some don’t have any. These children rely on a diet of breast milk (where moms may have to eat a special diet) or an elemental medical formula.

Although it is likely that there are safe foods for all FPIES children, the process of finding them is extremely painstaking. Each food must be trialed slowly while parents look for reactions before they are "full blown." When a reaction does occur, healing can take days to weeks before a new food can be trialed.

In 60-90% of affected children, FPIES is outgrown in the first 3 years of life. However, there are individual children that have FPIES continued into adulthood.

What does all this mean for our family?

We are slowly trialing Jack on new foods trying to find something safe for him to eat. We comfort him through his discomfort and lingering effects of reactions. As he is breastfed I read food labels and try to keep him safe from unsafe foods that pass through my milk.

Our main challenge at the moment is getting our boy to eat any food. He refuses to put anything but breastmilk into his tummy. Each time he has eaten he has felt awful, creating a negative food association. We are working hard to bring him the joy of food.

How You Can Help

You can help children diagnosed with FPIES by donating to The International Association for Food Protein Enterocolitis (IAFFPE). It was created to develop in-depth research, provide widespread education to medical professionals and to establish supportive services for children and families affected by FPIES. Research is conducted at the leading medical centers specializing in FPIES throughout the world.

Why Research?

• Very little is known about FPIES.
• Few doctors are able to recognize and diagnose the syndrome.
• There is currently no cure or treatment for FPIES.
• While seminal studies report that children may outgrow FPIES between ages 2 and 3, many families are finding that this is not the case for their child.  
• There are a variety of symptoms among FPIES children that are currently not recognized by the medical community as being related to FPIES.
• More research is needed.

www.iaffpe.org.

An FPIES child often looks healthy on the outside. It is what is going on inside and the cost of staying healthy that is debilitating for the FPIES child and family.