Our first letter focused our thoughts on working with parents and caregivers who are new to tube feeding. This letter focuses on what to keep in mind with feed tolerance and motility issues. We find that parents often need a good deal of help navigating these issues.
- Please address feed intolerance in a meaningful way. It isn’t enough that a child is gaining weight if they are having issues with feed intolerance. Vomiting, retching, constipation, diarrhea, discomfort, etc., impact a child’s quality of life. Moreover, not only are these signs of underlying medical conditions that may need to be addressed, they can really increase oral and food aversions. Make sure parents and caregivers know that these things aren’t par for the course when you tube feed. Take a look at what is being fed (whole protein/peptide/elemental/blended foods), calories per ounce, and the feed schedule (bolus/continuous/intermittent) and address potential medical issues, etc. A formula switch is a quick fix that doesn’t always tackle what can be a multifactorial issue. Have parents keep logs or food journals so you can review them to see how different changes impact tolerance.
- Think about the ability of the body to process high-calorie formulas. We know that medical professionals recommend high-calorie formulas for kids with volume intolerance. But the volume intolerance goes part and parcel with dysmotility. Kids with dysmotility often have a hard time tolerating high-calorie formulas. Many are better able to tolerate lower calorie formulas at higher volumes. Moreover, when increasing calories per ounce, make sure parents understand that their child will need additional free water to make up for the loss of water in the formula. Less free water = more constipation = more feed intolerance.
- Tell parents to adjust feeds when children are sick. We don’t eat the same foods at the same rate and volume when we are sick. It takes time even after an illness to feel like eating as much or as often. Motility slows and hydration becomes more important (especially with fever, increased vomit, diarrhea, etc.). Feeds need to be slowed down, calories per ounce need to be cut, and hydration solutions are recommended. Reassure parents who are concerned about their child’s weight that their child will recover better if their feeds are tolerated and if they are hydrated. Increased vomit or diarrhea doesn’t help a child feel better or gain weight.
- Don’t move kids to a gastrojejunal feeding tube if they haven’t failed continuous gastric feeds. (The obvious exception is when a child is aspirating secondarily into the lungs and the gastrojejunal tube is being used instead of a fundoplication). We hear from a lot of parents who are concerned about continuous feeds when moving to a gastrojejunal tube. You may be able to avoid a gastrojejunal tube by addressing feed tolerance issues with the G-tube, including trying continuous gastric feeds. Gastrojejunal tubes are fabulous when you really need them, but they are a much more complicated tube for children and parents. It means exposing children to sedatives (in many hospitals) and x-ray exposure with every tube change. They are more problematic if they get pulled out because they can’t be replaced at home. It can also be emotionally traumatizing for a child to have a procedure done so regularly. Moving to a gastrojejunal tube should be done when the options are exhausted with G-tube feeds.
- Make sure you test for delayed gastric emptying/gastroparesis before performing a Nissen fundoplication. This should go without saying, but we hear from a number of parents whose children are having difficulty with feed tolerance, retching, vomiting past the Nissen, and slipped and herniated Nissens who learn that their child has motility issues.
- Set realistic expectations for motility medications. In many children, motility medications don’t often fully address a motility issue. The motility benefit is often the side effect of the drug rather than its main indication. It often comes back to improving feed tolerance through managing the feed schedule and what is being fed. Also, resolving a child’s constipation issues or slower bowel function also does a lot for improving gastric motility.
Those clinicians who manage feed tolerance and motility issues well are truly special. These are real quality of life issues for the entire family.
Traci Nagy is the founder of Feeding Tube Awareness Foundation, a 501(c)(3) nonprofit organization, founded in 2010. The organization’s Facebook page is the largest online support group for tube feeding in the world. Traci is the 2013 recipient of the Lyn Howard Nutrition Support Consumer Advocacy Award from the American Society of Parenteral and Enteral Nutrition.