I suspect my child has FPIES....

I suspect my infant/child has FPIES, now what? 

FPIES is a rare illness where little is known, many doctors do not recognize it.   If you have come across information on FPIES while searching for answers to your child’s extreme reactions to food and feeding intolerances, if you have read What is FPIES here and other sources (KFA, Baby Center, Facebook)- you have found information put together by FPIES families.   What can you do now?          

1.    Start a food journal, whether breast feeding or formula.  You will also want to strongly consider stopping all foods that are not previously assured as safe.  Often reactions happen with first food introductions, so this is not as difficult to do as if/when there is a larger diet in place. Following a reaction, the gut needs time to heal; any foods that are causing even small symptoms could impede this healing process.  It is safer for your child to stop foods and continue formula or breast milk only for ~2weeks (sometimes longer, rarely shorter). 

2.    If breastfeeding, consider an elimination diet.  Eliminating the food that the child reacted to initially, and if symptoms persist (or were developing prior to full blown reaction)- you may need to consider a Total Elimination Diet where the top 8 allergens are eliminated, as well as other FPIES allergenic foods such as corn, rice, oats.  If unable to continue breast feeding, consider elemental formula (will need Rx for from MD).

3.    If formula feeding, strong considerations for hypoallergenic and elemental formula’s. 

4.   It will be important to the health of your baby that other gastrointestinal disorders and allergies with similiar symptoms of feeding intolerances are ruled out.  This can be done with a Pediatric Allergist or GI.  Other conditions include Eosinophilic Gastrointestinal disorders and Celiac Disease.

5.   You will then need confirmation of FPIES diagnosis and treatment plans.  There is no guarantee that the doctors will know what to do, or have even heard of this diagnosis.  Although awareness is being raised, so it is helpful to call ahead of time and find a doctor that is familiar with treating FPIES.  If you are not able to locate a doctor who has treated FPIES patient, find one that is willing to help by learning.  Of course we would want doctors to have protocols already in place and know exactly what to do with food trials and reactions but there is not enough known yet for protocols to be in place in most hospitals; but that does not mean the doctors can’t help.  If they want to learn, they can help. 

6.    You may want to print off articles on FPIES, as well as 2010 Guidelines for Diagnosis and Management of Food Allergy in the US and Non-IgE Food Allergy to take with to your doctor’s appointments to ask them to review for considerations for differential diagnosis if your child is having these feeding intolerances. (also see my top FPIES articles on front page).

7.  Join an online support community, such as: Baby Center, KFA, or Facebook for additional resources and support.  Families sharing experiences can be a gold-mine of information and a lifeline of support.