Meeting Nutrition Needs for Children with FPIES

After finding out your child has been diagnosed with FPIES, the next step can be blurry.  Many parents often feel nervous to make the next move after the overwhelming experience of an initial encounter with an acute FPIES reaction. The most common symptoms seen with an FPIES reaction include vomiting, diarrhea, lethargy, and occasionally hypovolemic shock.¹ Although the most common food protein triggers are cow’s milk, soy, and grains,  the possibility of severe reactions to any food can leave parents nervous to introduce new foods into their child’s diet.

For the Child who is Breastfeeding

If your child relies on breast milk for a majority of his or her nutrition, it can be a relief to know that in a majority of FPIES cases a child can continue on mom’s breastmilk without the need for mom to exclude foods from her diet.²  In the rare instance that mom may need to eliminate certain foods from her diet, it is important to work with a dietitian to ensure the child is receiving optimal nutrients and assess the need for additional supplementation. While breast milk is the ideal source of nutrition for infants, nutrient intake from foods starting at 4-6 months must also be assessed  Once foods have been introduced, it is important to assess if adequate sources of iron are being consumed. This may be a barrier in infants with FPIES who are avoiding grains which are often fortified with iron and are usually introduced as first foods. Your child’s dietitian may suggest introducing some low-risk iron rich foods such as prunes or fortified ancient grains (quinoa and millet). If an infant is receiving 100% of his or her nutrient intake from breast milk at 4 months of age, it is recommended for the infant to start on iron supplementation.² Vitamin D supplementation is also recommended in breastfed infants. A dietitian can be helpful in guiding parents on foods to introduce or continue while still avoiding foods that are commonly implicated in FPIES reactions.¹ Not only are solid foods important for expanding nutrient intake, they are also needed for development of feeding skills.

For the Child who is Formula Fed

FPIES may occur following the introduction of cow’s milk or soy protein-based formulas. However, the first occurrence may also occur with the introduction of solid foods. An FPIES reaction to infant formula typically happens in those under 6 months of age.³ If your child’s FPIES reaction is related to an infant formula, your healthcare provider will most likely recommend changing to a hypoallergenic formula, such as an extensively broken down protein formula or an amino acid-based formula.² These formulas provide a safe option while ensuring adequate nutrient intake. If your child is consuming less than 1 liter (33.3 oz) of formula per day, vitamin D supplementation is recommended. Similar to the child who is on breast milk, it remains important to find solid foods to introduce to ensure development of age appropriate feeding skills. Feeding skills and nutrition requirements change quickly during the first 12 months of a child’s life and it is important to avoid delays in feeding to avoid the negative impact on food preferences, feeding skills, and overall health.⁴

Importance of Adequate Nutrition and Steps towards Achieving an Expanded Diet

While introducing new foods after an FPIES diagnosis can be scary, it is important to expand the diet to minimize the negative impact on the overall nutrition quality of the diet often seen when a large number of foods are avoided. Similar to children with other types of food allergies, an FPIES diet that restricts certain food groups can lead to deficiencies in calories, protein, vitamin D, vitamin A, calcium, zinc and iron.³ In addition, studies suggest when higher numbers of foods are avoided, there is an increase in the likelihood of food aversions and refusal.¹  Guidance from a healthcare professional on which foods to introduce at home can help reduce the risk of another FPIES reaction and often relieves some of the anxiety parents may be feeling about trying new foods.  For high-risk foods, an oral food challenge under the guidance of an allergist, may be recommended.  During the COVID-19 pandemic, the American Academy of Allergy, Asthma and Immunology has recommended that clinic food challenges be deferred unless there is a critical acute nutritional need for introduction of a key nutrient.⁵ However, it is recommended to continue introduction of lower-risk foods in the home setting and hold off on the high-risk foods until there is resolution in the COVID-19 pandemic.⁴ A dietitian or health care professional who specializes in FPIES can be very helpful in determining which foods to try with your child. Due to the hesitancy with even the low-risk foods, The Expert Guidelines, Managing FPIES emergencies during the COVID-19 pandemic (EG-FPIES), suggests introducing these low-risk foods over 5 to 10 days. Initially you will provide a very tiny amount and then the amount will be doubled twice per day until the goal serving amount is achieved.⁴ You can ask your health care provider to provide you with an emergency action plan to ensure you feel confident while introducing foods in the home setting.

What to Expect from a Visit with a Registered Dietitian

To prepare for your visit, it may be helpful to list your questions or concerns regarding nutrition ahead of time so you can discuss them with your dietitian during the visit. In addition to evaluating growth and weight trends, a dietitian may also ask for a 24-hour dietary recall, a food frequency questionnaire, or a food diary to help assess your child’s diet for sufficient nutrient intake. Following assessment of current intake, the dietitian will be helpful in navigating next steps in your child’s FPIES nutrition journey. A dietitian can teach you how to properly avoid trigger foods, make suggestions for appropriate food products, and may even provide a specific food introduction plan to guide you in expanding your child’s diet.  If finding textures that are appropriate for your child’s development is needed, the dietitian may be able to offer some creative suggestions to support proper development of feeding skills. The goal is to ensure the allergenic foods are avoided while promoting variety and ensuring the diet provides adequate nutrition.

The Role of an Amino Acid-Based Formula Beyond Infancy

Breast milk or hypoallergenic formula may be something that your child with FPIES needs to meet their nutrition needs while their diet is expanding. Since FPIES does not typically resolve before 3 years of age, a junior hypoallergenic formula may be beneficial in ensuring nutrition needs are met when children are required to follow multiple diet restrictions. Cambrooke’s EquaCare Jr. and Essential Care Jr. are hypoallergenic amino acid-based formulas designed for children over 1 year of age and can safely fill nutrition gaps by providing adequate nutrition during times of food avoidance, food restrictions, or suboptimal weight gain and growth. To learn more about how these formulas may help to support your child, visit us online or call us at 1-833-377-2773.

1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4011627/
2. https://www.fpies.org/wp-content/uploads/2017/12/Nutrition_Guidelines.pdf
3. https://www.jacionline.org/article/S0091-6749(17)30153-7/fulltext
4. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7202833/
5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7195089/