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What to Expect when Using a Feeding Tube with Your Child

Next week, the Feeding Tube Awareness Foundation is hosting the 11th Annual Feeding Tube Awareness Week® to help promote positive aspects of feeding tubes despite the negativity that often surrounds these medical devices.

Feeding tubes can help your child live, grow and thrive. After the doctor recommends a feeding tube, it can be a lonely feeling because you may not know of another child who has a feeding tube; however, in the U.S. over twenty thousand children depend on a feeding tube.

The idea of a feeding tube can seem overwhelming but there are great resources and support groups out there to help you and your child through this journey. It is possible that your child is facing other medical challenges and a feeding tube can be something that gives some relief instead of adding to the stressors.

Many parents report wishing they had decided on a feeding tube earlier on after seeing all of the benefits that feeding tubes can provide. When nutrition intake is not adequate, children may not be able to thrive at their full potential. Adequate nutrient intake can promote both developmental and physical growth that you may not have thought possible.

Does a feeding tube mean my child cannot take anything by mouth?

This really depends on your child’s medical condition and whether or not he or she can safely take foods and fluids by mouth. If your child can safely consume nutrition orally, it is often recommended to continue to encourage oral intake as much as possible to help improve or sustain feeding skills. While some children require a feeding tube because they cannot safely take anything by mouth, many children require a feeding tube to support intake because they are unable to meet their needs by oral intake alone.

If a special diet is required, children may rely on a feeding tube due to poor palatability of the formula. In other instances, children may enjoy their formula; however, they are unable to take in the volume required to meet their nutritional needs. In children who cannot safely eat or drink, feeding tubes help to reduce the worry by ensuring these children are able to safely take medications, hydration and nutrition needed to help them grow, thrive, and stay healthy.

Can my child still be physically active with a feeding tube?

A common misconception is feeding tubes inhibit a child’s ability to be active and stay involved in sports and other activities like their friends. However, many children with feeding tubes are very active. In fact, adequate nutrition through their tube may improve a children’s energy and performance. A child’s feeding schedule can impact activity; however, this is something that you will want to bring to your doctor or dietitian’s attention so you can work together on the most optimal schedule for your child.

Bolus feedings – which are similar to regular meals but are typically given more quickly, less than 30 minutes – are often preferred. and the amount of nutrition given through a bolus can depend on your child’s ability to tolerate larger volumes.

If bolus feeds are not tolerated, children will generally need to rely on continuous feedings through a feeding pump at a slower and steadier rate. While this can sound like it would impact activity, many children wear their feeding pumps in a backpack to allow them to remain active. It is common for children to use a combination of bolus and continuous feeds. When continuous feeds are given overnight while the child is sleeping, it allows for lower bolus volumes during the day. For children that are more active in their sleep, parents have used special vests or clothing to keep the tubing from pulling apart in the middle of the night. Again, refer to your healthcare team with your cares and concerns to ensure he or she is on the most appropriate feeding schedule.

Is a feeding tube permanent?

Feeding tubes are beneficial in supporting children with a variety of medical conditions. Each child has his or her own unique nutrition prescription and goals are set by a healthcare provider and parents based on what is best for the child. Some children may have a medical condition that requires them to depend on a feeding tube throughout their lifetime, but for a large number of children a feeding tube is a temporary solution. Many children are able to wean from their feeding tube with help from their medical team once their tubes are not a medical necessity. The weaning process often takes longer than parents hope for so it is important to go into this process with the mindset that it may not be quick. It is also important to work with your child’s healthcare team to establish goals together and avoid any surprises.

How can I tell if my child is intolerant of feedings?

It can take time to monitor your child’s symptoms to determine tolerance versus intolerance. One of the most common causes of intolerance can be receiving too much volume too fast. Often, reducing the volume or decreasing the feeding rate can help with this issue; however, if your child is unable to consistently meet the nutrition goals set with the healthcare team, you may have to adjust the overall feeding schedule to ensure adequate nutrition.

If your child is receiving a gravity bolus feed and is showing poor tolerance, you can try lowering the bag or syringe so that it does not flow as quickly into the stomach. Another common cause of intolerance can be the formula is too concentrated, or the caloric density is too high. If your child is underweight when the tube is placed, he or she may require a higher calorie formula for catch up growth.

The problem is that these higher calorie concentrations may be difficult to tolerate, especially in children who have other complications in the gastrointestinal system. Work with your child’s doctor or dietitian to ensure he or she is receiving a concentration and schedule that is best tolerated. In some cases, children may have difficulty tolerating a cow’s milk-based formula.

A formula in which the proteins are partially broken down (partially hydrolyzed or peptide-based) or one in which the proteins are completely broken down (amino acid-based or elemental) may be better tolerated. A dietitian or doctor can help you in determining which formulas are most appropriate for your child. They can also work with you to rule out any food allergies, intolerances, or other medical conditions that could be contributing to intolerance.

When an amino acid-based formula is recommended

At Cambrooke, we want you to have improved options for your child’s amino acid-based formula. We offer two new amino acid-based formulas for children over one year of age. EquaCare Jr. offers the same great nutrition and taste as other popular amino acid formulas but at a much lower cost. Essential Care Jr. provides more natural, superior ingredients and leaves out the unwanted corn syrup solids and artificial ingredients. For more information on our quality formulas, please visit our website at www.essentiallybetter.com or call 1-833-377-2773.

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