Your child’s gastroenterologist can help investigate and manage feeding intolerance with tests, medications, and changes to the feeding routine. A dietician can review current feeding schedules and formulas, and consider whether alternative formulas or regimens will deliver appropriate calories and fluids. Complex care and palliative care clinicians bring expertise in causes of GI symptoms that are due to the altered nervous system, and can coordinate a care plan.
Feeding Intolerance and Decline
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When a child experiences persistent abdominal pain or vomiting associated with receiving nutrition and/or fluids into their GI system, this is sometimes referred to as feeding intolerance. Feeding intolerance can occur intermittently, as when a child experiences other medical stress (e.g., illnesses or surgery), or can build over time. When feeding intolerance occurs alongside worsening of other neurological symptoms, it can be a sign that the altered nervous system is contributing to the overall slowing down of the GI system. Feeding decline refers to the natural slowing of digestion with diseases that involve neurological decline.
Feeding intolerance is the inability to tolerate food in the stomach and/or intestines. It is most obviously evident in children with feeding tubes whose feeding generally occurs on a schedule, rather than in response to behavioral cues about hunger (which is often what guides feeding by mouth). Intolerance can be due to one or more problems in children with SNI. Problems that can impact the ability to tolerate tube feedings include:
- Pain with feeds
- Recurrent vomiting
- Constipation and motility problems
- Recurrent functional ileus
- Overestimation of calories
- A natural part of decline
As a child’s condition worsens, it can be natural for food tolerance to decrease. The child may have an overall decrease in activity level–sleeping more hours of the day–which will decrease the calories needed by the body, so what seems to you like a small amount of food can still be enough.
The ability to eat by mouth or tolerate feeds might come and go. It might stop for several days, leading you and the medical team to prepare for the possibility that your child is nearing the end of life, and then feeding may pick up again. This temporary change is naturally unsettling and jarring. Trust your instincts and allow your child’s comfort and level of interest to be your best guide. Palliative care and hospice teams (care specifically for end-of-life support and comfort) can provide needed support.
GI problems that persist and impact how easily feeds can be given might best be approached with a goal of balance. One part of balance is rethinking what weight is good enough rather than thinking about a “needed” weight. The calories needed can decrease when a child with SNI is less active, yet calculations do not always account for these changes. How much nutrition to give can be balanced by considering what has changed in your child. Another part of balance is revisiting the goal of treatment. For example, is your goal no GI pain, or should less frequent or less severe symptoms be the goal? Exploring the following questions with the medical team might help you as you navigate:
- What other causes of these symptoms could be considered?
- If there are tests that could help investigate this problem, how burdensome or invasive are the tests?
- What are the benefits and risks of trying a medication just for pain?
- How can we manage pain or vomiting when it occurs?
- What will happen if we give less formula?
Providing your child with food and liquids can feel like a basic parental responsibility. Thus, conversations about feeding can feel intensely emotional. It is important to acknowledge the ways in which your identity as a “good” parent may feel in conflict as you have discussions about feeding intolerance. It may also be helpful to consider sharing these feelings with your medical team.
For some children, feeding intolerance resolves with temporary changes in the care plan and quality of life is not significantly changed. For other children, feeding intolerance can signal a decline in their overall health. When feeding decline or feeding intolerance persists, you may find that some interventions are simply not worth the struggle. In fact, a natural decline in feeding, or reducing feeds when there is intolerance, may be a path to greater comfort for a child, especially when they are in their final weeks to days of life. Complex care and palliative care teams are often helpful partners in navigating decisions that involve trying to balance comfort with health, especially when a child is using life-sustaining medical technology.
