One of the early and more difficult issues that parents face with tube feeding is feed intolerance. Feed intolerance may present as vomiting, diarrhea, constipation, hives or rashes, retching, frequent burping, gas bloating, or abdominal pain. In very young children, prolonged crying and difficulty sleeping may be the only symptoms.
What is feed tolerance and intolerance?
Feed tolerance is how well a child tolerates feeds. A child who is comfortable and happy during and after tube feeds is tolerating them well. If a child is uncomfortable, agitated, unhappy, retching, gagging, vomiting, swallowing hard, or experiencing diarrhea or excessive gas may not be tolerating feeds well. The key to feed intolerance is that it is a recurring pattern. The child pretty consistently will experience these things with tube feeds.
The initial feeding schedule should be seen as a starting point. It is very common that adjustments and changes will need to be made to make the child more comfortable with their tube feeds. It is common for parents to panic when their child isn’t tolerating feeds. It is important to remember that changes can (and should) be made to the tube feeding regimen.
Why does feed intolerance occur?
- The Underlying Medical Condition. Many of us do have a diagnosis and complete understanding of our child’s medical condition when we start tube feeding. The following are just a few examples:
- An allergy or sensitivity to the formula or the protein in the formula
- Motility problems, which make digestion too slow or too fast
- Absorption problems, such as from cystic fibrosis, that make it difficult to break down fats or proteins
- A metabolic disorder that requires a special component added or removed from formula
- Structural or anatomic problems that may make volumes difficult to handle
- Dramatic Increase in Calories, Volume, or Concentration. Many children who are labeled “failure to thrive” are not eating or drinking enough when they have their feeding tube placed. They are often put on a feeding regimen that is a dramatic increase in volume and calories over what they were taking in orally. This can lead to feed intolerance. Sometimes you need to add calories more slowly, so that children can adjust to the increase.
- Incompatible Feeding Schedule. Sometimes a certain feeding schedule just does not work for a certain child. Some children are always nauseous at night, but can take large volumes during the day. The schedule must be designed to suit the child, and not the other way around.
Feed intolerance really does matter.
The perception that many parents have is that no one cares if their child is vomiting, or retching, as long as the child is gaining weight. However, recurrent retching and vomiting takes a significant toll on both the child and the parents. It impacts oral aversions, oral eating, and quality of life for both the child and the rest of the family. So, it is important to bring it up to your medical team.
What can help with feed intolerance?
Make sure that you discuss any changes to your child’s diet or feeding schedule with your medical professionals.