Thank you for your inquiry.
I am forwarding your inquiry to Dr. Scott Sicherer who is a nationally recognized authority on FPIES. As soon as we receive his response, we will send it to you.
Thank you again for your inquiry.
Phil Lieberman, M.D.
We received a response from Dr. Scott Sicherer. Thank you again for your inquiry.
Phil Lieberman, M.D.
Response from Dr. Scott Sicherer:
It is quite a challenge to add foods to the diet of a child with FPIES since we have no tests to fully predict what to expect, and must rely on epidemiologic observations from studies. I refer you to a recent excellent review article in The Journal of Allergy and Clinical Immunology: In Practice July 2013 (pages 317-22). There is an online Table with that article (Table E5) that describes the approaches given the rate of co-allergy in FPIES. This Table will answer your question directly. Similarly, there is an article on this topic by Ruffner in the same issue (page 343-9) and Figure 1 in that original article provide slightly different views on the question you raise.
Briefly, The vast majority of children with FPIES react to only one or two foods. However, it can become concerning when more than two foods have been a trigger, because almost 10 percent indicate reactions to more than 4 foods. If past reactions have been particularly severe, and the number of trigger foods already are more than a couple, going more cautiously may be the better option (delay longer or add foods under medical supervision as a food challenge).
Milk, soy, grains (especially rice and oat) and poultry are higher on the "worry" list. This child already has tolerated a number of fruits and vegetables and so the list of foods to reasonably delay are the ones you already identified. Meats other than poultry are less often an issue, and egg is a problem for roughly 10 percent. However, supervised food challenges can be considered depending on specific concerns, especially if larger numbers of foods are causing problems.
The description of the reaction with a low neutrophil count and a high fever was not associated with an ingestion, the symptoms seem unusual for FPIES and perhaps this was a viral illness. FPIES reactions usually have an increase in neutrophil count with increased band forms. I am not sure if the comment about a switch of formula from one brand to another (both extensively hydrolyzed) was to imply a problem with the former formula, but that seems unlikely.
Ultimately, many low risk foods (various fruits, vegetables, fish, etc) will be added at home and families might want to add them when it is earlier in the day rather than before bedtime, and at home with family rather than in the care of others. Families should be instructed about what to do in the event of a reaction. This includes going to an emergency room with information about the illness, since often there is unfamiliarity with FPIES. There is an explanatory letter in a review article (Sicherer SH JACI 2005 Jan;115(1):149-56) and this type of letter is also available at lay organization websites (e.g., www.iaffpe.org/ or www.fpiesfoundation.org). One recent small study suggested ondansetron may also help in managing an acute reaction (Holbrook T et al J Allergy Clin Immunol. 2013 Jul 25. pii: S0091-6749(13)00989-5. doi: 10.1016/j.jaci.2013.06.021. [Epub ahead of print]).