Alternative Practices

Weighing the Benefits and Risks

Eating is a normal and everyday part of life. As we all know, it can be very difficult for a child with food protein-induced enterocolitis syndrome (FPIES). As clinical evidence states, there are no curative therapies for FPIES at this time, although there are many dedicated doctors and researchers committed to helping find a cure. Currently, strict avoidance of the offending food is the required treatment. As with other health issues where no cure is yet available (e.g., irritable bowel syndrome, chronic fatigue syndrome, migraine headaches) alternative therapies are often promoted.

With any alternative therapy, there are two main issues that must be carefully considered:

•  Is the therapy safe?
•  Is the therapy effective?

Safety: First and foremost, safety must be considered. FPIES is a unique and often misunderstood food allergy. Therefore, it is best if treatment is guided by a board certified allergist or gastroenterologist with expertise in managing FPIES. Food introductions are based on the physician’s assessment of your child’s specific risks, and it is best not to experiment at home without medical guidance with foods that may cause an allergic reaction.

There are many tests that are promoted that are not validated or recommended by experts. The National Institute of Allergy and Infectious Diseases (NIAID) Guidelines for the Diagnosis and Management of Food Allergy in the United States, recommends not using unproven tests in allergy evaluation, including any of the following: ·

• Basophil histamine release/activation
• Lymphocyte stimulation
• Facial thermography
• Endoscopic allergen provocation
• Hair analysis
• Applied kinesiology
• Provocation neutralization
• Allergen-specific IgG4
• Cytotoxicity assays
• Electrodermal test (Vega)
• Mediator release assay (LEAP diet)

When it comes to FPIES, there are currently no tests available to detect those foods which may be problematic so your doctor will guide you based on your child’s specific history.

Lastly, as FPIES is typically present only in children (and mostly young children), we need to consider the unique nutritional needs of children. Adults who choose to follow “fad” diets generally have enough nutritional reserves to do so for a short period of time without immediate risk. For children, this is not the case. Additionally, children have greater nutritional needs because they are still growing and developing. A nutritionally inadequate diet can have lasting consequences in children. A proper diet guided by your doctor and dietitian—one that provides safe and appropriate foods of various flavors and textures and balanced nutrition—will help you meet your baby’s nutritional and developmental needs.

Breast milk or hypoallergenic infant and pediatric formulas can help supplement your child’s diet. The safety and efficacy of these formulas for children with allergy has been demonstrated in numerous studies and also in case series of children with FPIES. The goal of the diet is to eliminate the causative food and to provide nutrition that will promote growth and development.

Efficacy: If there is scientific evidence that a treatment works, that evidence is typically used in the promotion of the treatment. Proper scientific processes measure safety and efficacy in a peer-reviewed manner. Care must be taken to evaluate the medical evidence as well. For instance, a randomized, controlled clinical trial is required to determine efficacy as this cannot be determined through other types of peer-reviewed published literature, such as a case series. It is a red flag when a treatment is promoted on the basis of personal anecdotes or stories without scientific evidence of either safety or efficacy. We have to remember that anecdotes are not science and that one needs to be aware of overall nutritional completeness, developmental readiness and safety of such management suggestions.

Provided by IFPIES Medical Advisory Board