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.
When making changes, only change one thing at a time. Go slowly, and wait a few days before making another small change. Making too many changes at once will make it challenging to know what is or is not working.
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.
If you were not taught to vent your child’s G-tube, you can learn how to do so on our page on Living with a Gastrostomy (G) Tube. Infants often need to be vented frequently (with every diaper change and before a feed), as do children who have had fundoplication surgery or have motility issues. Older children may not need as much venting, but it is always best for parents to try venting to see if it is needed or not. Continuous venting using a Farrell Valve bag is a great option for kids who need more continuous venting, particularly overnight while feeding. And, yes, the gastric (G) port on gastrojejunal (GJ) tubes often does need venting, particularly right after transitioning to J feeds.
Are you bolus feeding too quickly? Could using a pump make it easier to deliver a feed at a consistent rate or more slowly over a longer period of time? Would a child do better with a gravity feed over a syringe bolus? Does the child need to be on more continuous feeds either overnight, or both day and night? When working with your medical team on the feed schedule, please keep in mind your daily life and how the feed schedule will impact sleep and your daily life over time. A round-the-clock bolus schedule might be fine with an infant, but it isn’t sustainable (or natural) over the long-term. We all need to sleep.
Is it just too many calories or too much volume for the child given the underlying medical condition or activity level? For example, kids who have very low muscle tone or are less active may not need as many calories as kids who are more active and mobile. Also, those who are on jejunal (J) feeds may gain very quickly since it is such an efficient way to take in calories, and the child may no longer be vomiting feeds. We also hear that sometimes parents will add calories to their child’s diet because they want them to gain more quickly. If the child is having trouble tolerating feeds, they could be receiving too many calories. They could also be receiving more volume than the stomach can digest at once.
There is a tendency to increase caloric concentration for children who have issues with volume or motility issues. However, these high calorie formulas can be really hard to tolerate for some children. Think of it in terms of the foods we eat and how caloric they are. There are few foods that are 45 calories per ounce, and we just don’t eat them all day long every day. Moreover, calorie rich formulas have less free water, so additional water has to be incorporated into the feed schedule or there can be issues with both constipation and dehydration. Make sure your medical team considers the jump in calories when changing formulas or diet. The move from 24 to 27 calories may be tolerated well, but the move from 20 to 30, or 30 to 45 may be more difficult. It is important to consider that every child may not be able to tolerate 1.0 and 1.5 formulas; however, your medical team can advise you on how to bring the caloric concentration to an appropriate level for your child by giving you recipes on how to dilute ready to feed formula or mix powdered formula.
So many children who are tube fed have issues with constipation, or bowels just not emptying as they should. Make sure you understand how much free water your child needs to be fully hydrated. Addressing the constipation or slower moving bowels can really improve feed tolerance.
Is it whole protein, peptide, amino-acid? Is it real food, or could it be? Is added fiber appropriate or not? When proteins are more broken down (in peptide and amino-acid based formulas), it can help the stomach digest it faster. This can help improve how children tolerate feeds. Research has shown that a blended diet improves retching in children with fundoplication, but parents find that a broader range of children experience less vomiting as the amount of real foods is increased in the tube feeding diet. We hear consistent feedback from those who use blenderized diets that there is less constipation and children have regular bowel movements, which in turn, can improve how feeds are tolerated.
If the child isn’t tolerating continuous tube feeding into the stomach (via NG-tube or G-tube) with an appropriate diet, then it may be time to consider moving to a feeding tube that extends into the intestine, such as an NJ (nasojejunal) or GJ (gastro-jejunal) feeding tube.
Has the child been tested for food allergies, eosinophilic disorders, motility issues, and structural issues? There are rarer conditions like visceral hyperalgesia and cyclic vomiting syndrome that also cause the symptoms of feeding intolerance. And, if a child has low muscle tone, there may have issues with delayed gastric emptying.
Parents would automatically change the diet of an oral eating child when there is illness, but we are less likely to think about it with a “prescribed diet.” When kids are ill, you will likely need to adjust feeds to focus more on hydration, than calories. We have a whole page on how to handle illness. Moreover, children who have had surgery may not tolerate the same feeding regimen they were on prior to the surgery. For example, a child who tolerated a particular feeding regimen may not tolerate the same feeding regimen after having the G-tube surgery for a week or more, depending on the child’s medical conditions.
Sample Feed Tracker
You can learn a lot by tracking your child’s symptoms in correlation with feedings. The following feed tracker is just an example of how you can track symptoms.