When Is It Time to Consider Tube Weaning? A Paediatric Dietitian’s Insight
Is your child’s nutrition supported with a feeding tube? Wondering if it’s time to consider weaning?
Tube weaning can feel like an important milestone, it’s also a complex process that requires careful consideration. In this post, I’ll answer some of the most common questions about tube weaning, drawing from an interview I did with The Blend Magazine for the article Keen to Wean?.
When Should You Consider Weaning from a Feeding Tube?
Deciding if and when to wean is very individual and needs a multidisciplinary approach. The team involved can include doctors, speech pathologist, physio, occupational therapist, psychologist and dietitian. It requires consideration of the child’s medical condition, ability to eat/swallow safely, growth, nutrition and hydration, overall well-being and their motivation. It also has to be the right time for their support network.
What Does the Tube-Weaning Process Involve? How long does it usually take?
The process of tube weaning varies widely from child to child, and it’s crucial to work closely with a medical team before starting. As a paediatric dietitian,I consider the child’s nutritional needs, eating ability, food preferences, family routine and goals. We typically begin by provoking appetite through the gradual reduction of tube feeds while offering food first. The tube can then be used to "top up" what the child hasn’t eaten. I would work with the family to ensure the foods offered are nutritious and high energy/protein, give them a plan for balancing tube feeds with food intake and monitor nutrition status.
As for timeline… how long is a piece of string? Gradually, we reduce tube feeds as oral intake increases. There are so many factors involved so it varies widely.
Photo: child with gastrostomy feeding tube
Common Challenges During Tube Weaning and How to Overcome Them
From a dietitian’s perspective, weight loss and limited variety of food intake is common. It takes time to learn to chew, swallow and eat new foods. Becoming familiar with textures, flavours and smells can also be challenging. Working with families to set realistic, achievable goals that are specific to the child’s needs and ability can be helpful to guide expectations. Ensuring mealtimes are positive without pressure to eat is very important. Regular monitoring of growth, blood tests and review of intake, helps the child stay nourished during the process.
One of my goals is to set children up for success with tube weaning from the moment the tube is inserted. Even while tube feeding, there are ways to maintain the connection between hunger and fullness, as well as the sensory and social experience of eating.
Consider the eating environment. A child will learn about the process of eating if they are sitting with others eating for example, at the table, during a picnic or at daycare. We may administer the feed from a pump placed behind the child while they play with a spoon or if safe to swallow, they may do messy play with food. I may refer to a physio or occupational therapist to ensure they are positioned appropriately and building the skills needed to eat even when weaning is not an option yet.
The ultimate aim is to de-medicalise tube feeding and socialise at meals.
Is this something people and families tend to get right on the first go – or can it take several attempts?
Think of it like learning a new skill. Sometimes you pick it up straight away, and other times it takes trial and error. I try to encourage families to celebrate small steps towards eating rather than focussing on the end goal which for some may be tube removal.
A Tube-Weaning Success Story
I’ve had the pleasure of seeing many families successfully wean their children off feeding tubes. A lot of them have stuck with me over the years. I have known some from birth/early childhood until they are taller than me and transitioning to adult services.
I had the pleasure of seeing a few have large medical breakthroughs leading to rapid tube weaning, seeing them go from eating almost nothing to feeding tube removal. The joy the families had when sharing this news is something I will never forget. It’s lifechanging for the child- reflecting on these journeys is making me emotional right now!
Until next time,
Ash
Your Child’s Nutrition Specialist