What are the goals of long term management of FPIES?

1)      To maintain proper nutrition

2)      To obtain “safe” foods

3)      To be ready to treat an accidental exposure that results in a reaction

4)      To be monitored for possible resolution of the allergy with a goal to expand the diet if possible

5)      To seek out a support system for the child as well as the family. It can be taxing emotionally and physically to live with an FPIES diagnosis. By seeking out support from family and friends, and particularly families who also have children diagnosed with FPIES, it can help you to feel less overwhelmed.

What medical professionals are important in monitoring my child’s care plan?

In addition to continuing your relationship with your child’s primary care provider, the goal of your medical team will be to provide a comprehensive care plan for your child to obtain the optimal nutrition necessary to assure appropriate growth and development in a safe environment. Your child’s medical team wants to see him or her have successes and a good quality of life while navigating this diagnosis, just as you do!

The assistance of a Board Certified Allergist-Immunologist and/or pediatric Gastroenterologist will help to ensure your child is avoiding the food associated with his/her reaction. In addition to obtaining a thorough history, these specialists may need to perform one or more food challenges. It is recommended that the practitioner conducting the challenge have (1.) experience performing food challenges, (2.) familiarity with the signs and symptoms of FPIES, and (3.) adequate equipment available to treat a reaction should one occur.

Additional medical team members may include:

  • A Registered Dietitian to assure that your child is receiving appropriate nutrition to reach his or her maximum growth potential and to provide education regarding safe dietary elimination. He/she can also offer additional insights, such as ideas for recipes, new ways of preparing regularly eaten foods, and even information on foods that your family may not be familiar with!
  • An Occupational Therapist or Speech Therapist may be necessary if your child requires feeding therapy secondary to an oral aversion he or she may have developed due to food restrictions. It may be helpful to seek a therapist accustomed to working with small children in order to better meet your child at his/her developmental level.
  • A Social Worker may provide direction and guidance obtaining coverage for medical expenses and medically necessary formulas. He/she can also point your family in the direction of an therapuetic services that may be needed to help your family and or your child to better cope.

Is there a cure for FPIES?

Unfortunately, there is currently no curative treatment for FPIES. The treatment is to avoid the trigger food, allow time to pass, and consider medically-supervised food exposure (oral food challenge) to assess for resolution of the allergy.

At this time, more research is needed before determining if strategies currently being evaluated for the treatment of IgE-mediated allergies might also be applicable to FPIES.

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Is FPIES hereditary?

There are currently no large studies on the hereditability of FPIES. We actually only have rough estimates of hereditability of other presentations of food allergies, but it is appears that both genetics and environment play a role. There is an impression that FPIES has a hereditary component but the majorities of siblings do not share FPIES (but have a small risk).

What defines a food trial vs. a food challenge?

The term “food trial” does not have a formal medical definition. In the older food allergy literature, the term “trial” appears. This is not a term used in contemporary allergy practice.

Physicians and patients might use the term “food trial” to mean they are either eating a food or avoiding a food to see the effect it may have on a health outcome. They might mean that they are doing this under medical supervision.

A “food challenge” typically refers to a medically supervised feeding. It is often termed an “oral food challenge” or “medically supervised feeding test”. An oral food challenge usually involves a measured feeding under medical supervision. In some cases, this test might follow a trial of a successful elimination diet to determine which among several foods was responsible for improvement in symptoms. This is a test that is used when there is a suspicion that the food could trigger a reaction that would need medical intervention. It is the most definitive test for diagnosing an allergy or resolution of an allergy. This is the main test used for diagnosing a food causing FPIES.

Can certain medications stop or lessen an FPIES reaction?

Unfortunately, no medication can prevent an FPIES reaction from occurring or stop a reaction that has already begun. The primary treatment of symptoms triggered during a reaction  is to combat or prevent possible low blood pressure/dehydration using intravenous fluids.  Additional medications such as steroids and epinephrine have an unclear role in the treatment of FPIES, but might be tried in certain circumstances as prescribed by your treating physician

The benefit of epinephrine is not known for FPIES reactions. Epinephrine is an essential medication used to treat anaphylaxis, which is different from an FPIES reaction. Epinephrine may have a clearer role is in the case of “atypical FPIES.” In these cases, children have positive skin prick testing (SPT) and/or specific IgE testing (the blood test for allergy) to a food trigger. Providing an epinephrine auto-injector (e.g. EpiPen) to the family should be considered for emergency treatment of a severe allergic reaction.

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How do I safely provide foods for my child?

  • Mastering basic ingredient substitutions and learning to modify familiar recipes can help to provide more options for a variety of types of foods in your child’s diet. Variety may help our little ones to not only be more interested in their foods, but also have more options for involvement in food-based activities!
  • Learning your child’s degree of sensitivity and response to cross contaminants can help you to determine what necessary precautions you may need to take in regards to personal cookware as well as in regards to purchasing premade foods.
  • When eating away from home, consider doing research about the restaurant in advance by calling and speaking with the cooking staff, speaking to other families about their experiences with the restaurant regarding food allergies, and carrying allergy information cards when visiting the restaurant. Happily, there seems to be a trend for allergy-friendly restaurants to appear in our communities, so there may be more opportunities than before for a well-deserved night out.
  • A registered dietitian may provide ideas regarding avoidance of your child’s trigger foods while ensuring your child’s dietary needs are met. He/she may also help you to think of fun and age-appropriate ways to prepare the foods that are safe for your child!
  • School and daycare can be fun and rewarding expediences for many children, but families may have concerns about how to manage exposure to triggers in these settings. It can help to plan ahead! When preparing to enroll your child in daycare or school settings, you may consider:

(a)Meeting with school professionals to discuss your child’s condition and degree of sensitivity.

(b)Discussing with school professionals the potential for food exposures throughout the day, including but not limited to snacks, meals, sensory play and art activities. Consider developing a plan for handling each of these scenarios, keeping the age and stage of the child in mind!

(c)Drafting a formal plan such as a 504 plan (based on your child’s qualifications) can help when your child is enrolled in a school setting that receives federal funding. This can help ensure safe foods (safe on the basis of ingredients) will be provided for your child’s school meals. This does not ensure that these safe foods can be provided without the cross contamination risk, so be sure to keep your child’s unique sensitivities.

(d)Preparing snacks and/or meals with foods only from home. This may be an option some families feel more comfortable with due to the nature and/or sensitivity of their child’s reactions.

(e)Preparing an emergency plan to have in place so that professionals know how to handle potential accidental exposures as well as understand ways to recognize an FPIES reaction in your child.

Can non-food products cause reactions (i.e. medications, craft supplies, etc.)?

Reports in the medical literature have demonstrated FPIES reactions related to the ingestion of food products. Occasionally a food product might be found in an unsuspecting place such as in craft supplies (like play dough, which may contain wheat). If you are concerned that a non-food product has caused a reaction, you should address this with your care provider. Most children with FPIES are of the age and stage prone to mouthing objects and other oral exploration, so keeping this in mind when preparing different activities for your child can help to reduce the risk for ingestion.

Can secondary conditions (such as chronic anemia, malabsorption, etc) occur in my child as a complication of his/her FPIES symptoms?

If the food trigger is removed from the diet, there should be no long term complications from FPIES. In the case of chronic FPIES when a suspected food trigger remains in the diet then malabsorption and nutrient losses through the gut can occur. This may result in poor weight gain, iron deficiency anemia, and low levels of protein in the blood (hypo-albuminemia).  It is also important to recognize that an extremely limited diet has significant consequences for growth and nutrition. Therefore, feeding plans should be created with the guidance of medical professionals, to ensure that potentially “safe” foods are not be unnecessarily eliminated from the child’s diet.

Managing FPIES can feel overwhelming at times! Happily, by working alongside of your child’s medical team, you can all establish a plan to help your little one to stay safe, healthy, and on track to meeting his/her childhood milestones.

 

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Page published: June 18, 2012 Last update: Jan.5, 2015. Copyright © 2012,The FPIES Foundation