Dietary choices should be made with your medical team. We often recommend that parents work with a dietitian who is well-versed in the available options for tube feeding diets. Often, pediatricians do not know the full range of options for children who use feeding tubes. Any formula, including those that are widely available, can be fed using a feeding tube. However, many children who require tube feeding need more specialized diets.
Formulas are made up of protein, carbohydrates, fats and vitamins/minerals. Most are designed to be nutritionally complete, meaning everything a child needs is available in the formula. Medical conditions can dictate the composition of these ingredients and if the proteins are whole, partially broken down (peptide) or are fully broken down to amino acids (elemental).
Many tube feeding formulas are made to also be consumed orally. There are some that have flavor options to encourage oral consumption, where others are usually reserved strictly for tube feeding.
Whole Protein Formulas
Whole protein formulas do not have the proteins broken down. Many children are able to tolerate whole protein formulas. These formulas cover a broad spectrum, from standard infant formulas to formulas that contain real foods. Examples include PediaSure, Nestle Compleat, or Similac. Most are milk- or soy-based, but some are made from real foods.
These formulas have the proteins partially broken down. Peptide formulas make digestion easier, so they move through the stomach more quickly, which can improve tolerance of feeds for some children. These formulas are recommended for any child with a feeding tube placed in the duodenum or jejunum, because they require less breaking down. Examples include Peptamen Jr and PediaSure Peptide. Most are milk- or soy-based.
Elemental/Amino Acid Based Formulas
Elemental proteins in these formulas are broken down to the amino acid level (the building blocks of proteins). These formulas are hypoallergenic. They also are easier for the body to process and absorb. They are commonly used in conditions like small bowel syndrome, eosinophilic disorders, motility issues, and severe food allergies. Elemental formulas are often used in children who are fed into the small intestine. Examples include Elecare, Neocate, or EO28 Splash.
There are also specialized formulas available for children with specific metabolic disorders, kidney diseases, the ketogenic diet and other conditions. These may restrict, eliminate, or add one component of the formula, such as a specific amino acid, carbohydrates, or proteins. In addition, there are modular formulas available, which piece together the building blocks of nutrition to accommodate rare conditions.
Most people prepare formula once or twice a day. Once powdered formula is mixed, or ready-to-feed formula is opened, it should be used within 24 hours. It should be stored in the refrigerator or in a cooler (for day trips). Manufacturers do not recommend that formula ever be frozen.
Commercial formulas can hang in a feeding pump bag for 4 hours. We recommend using an ice pack to keep the formula cool if it will be longer than 4 hours. If you live in a warmer climate, you may consider using ice packs to keep formula cool even for shorter durations. You can safely hang formula overnight using a heavy duty ice pack. Keep the pump and feeding pump bag in a backpack, or rubber band the ice pack directly to the feeding bag.