Does your child have an ng-tube or g-tube so that they can get the calories and nutrients they need? Kids that have a feeding tube can learn to eat and chew! Get the step-by-step how-to instructions for weaning from tube feedings. Affiliate links used below.
Some children need a feeding tube to eat because they aren’t able to eat or manage their food safely. Or, in some cases, their picky eating becomes very severe. If a child absolutely refuses to eat or eats very little, they may also receive a feeding tube to ensure that they’re getting the calories and nutrition they need.
Initially, many children use a nasogastic tube, or ng-tube, that goes up through their nostril, down the back of their throat and into their stomach. Formula, breast milk, and even very thin liquid foods can be put through the ng-tube.
However, this type of tube is temporary and typically isn’t in place for longer than 6 weeks at the most.
If children continue to need tube feedings, then a procedure to insert a gastrostomy tube, or g-tube is done. This places a port right into the stomach. It’s much easier to manage, but is more permanent, although they can be surgically removed.
Why is Weaning From a G-Tube or NG-Tube Important?
As an occupational therapist that specialized in feeding, I’ve treated children that were placed on a tube feedings. I’ve also supported students through the weaning process in Table Food School and Mealtime Works, depending on their age. What I’ve found is that most children are put on tube feedings with no plan to ever take them off.
There is a peace of mind with tube feedings, because your child that has had difficulty eating now has a direct means for being nourished without any worry of their safety or refusal!
But, most parents would like to see their child resume or learn to eat as other children do. It’s a valuable skill that can enrich a child’s life. It’s also much more convenient, as tubes require maintenance and set up.
When Should You Start Weaning?
When you should start weaning from a g-tube will vary from child to child, but I believe for most kids, you can start preparing the way for weaning as soon as the tube is in place, as this will make the transition to chewing foods a smoother path.
Before you can begin working on any aspect of feeding your child orally, you must check with your doctor, usually their GI doctor. Often, you’ll work with a feeding team to ensure your child is able to safely begin swallowing.
Your child may need a “cookie swallow” or a modified barium swallow. It’s a non-invasive test that takes x-ray pictures of your child eating and swallowing.
A speech language pathologist will closely watch these pictures and determine if eating and/or drinking is safe to attempt.
Even if your child isn’t able to begin eating, there are other important techniques you can begin using that will help them get ready to eat once it’s safe.
How to Start Weaning
I strongly recommend working with a feeding team for the weaning process, I know it’s not always possible. Please stay in close communication with your doctor as a minimum.
Below you’ll learn some of the most beneficial strategies to help you make that transition from tube feeding to oral feeding that seems impossible.
And, I’ve got a powerful real life example to show you, my 2-year old niece Lucy. Although she’s still a baby in this picture…
Lucy got a g-tube at a very early age because of complex medical needs as a result of her Turner’s Syndrome diagnosis. But, my sister Alexis and her husband Aaron began to diligently begin the process of weaning from an early age. Having a sister that’s an OT has some perks 😉
Weaning from tube feedings went slowly at times.
They took breaks when they needed to, or when therapists raised concerns that Lucy might not be swallowing well, and possibly aspirating. That’s one of the biggest concerns with oral feedings, because when a child aspirates, it goes into the lungs not the stomach.
Alexis and Aaron have been kind enough to share some of their personal pictures of some of the strategies I’m going to share with you. It’s been a joy for me to support them through this process. Wait til you hear what Lucy is doing now!
*Note: Even though Lucy is 2, I would use the same strategies for a child at any age beginning to wean from a feeding tube.
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Step #1: Oral Play
Many, if not the vast majority of children on feeding tubes, develop strong oral aversions because they aren’t used to having anything in their mouth. We take this for granted because we eat all day long. But, when you don’t have food, bottles, and/or utensils consistently going into your mouth, the whole mouth area becomes sensitive.
Some tube fed kids are also fearful of choking, texture, or taste. They are scared of eating and will refuse to have anything at all near their mouth.
The first step is to get some teethers, a toothbrush, safe toys, or plastic/silicone utensils into their mouth. You’ll likely need to start slow, just touching the tip of the teether to their mouth. Lucy is a using what’s called a z-vibe in this picture. Only use this specific tool if you’re under the guidance of a therapist, as they’re powerful tools that can cause deeper oral aversion if not used correctly.
Practice throughout the day with teethers, a toothbrush, or any other utensil until they can accept these items in their mouth. Encourage them to bite on them and move them around!
This Zoli teether is one of my favorites because it can help address oral aversion and chewing.
You can use this strategy even if your child isn’t able to begin trying food or drink yet.
Step #2: Texture Play
Another wrinkle in oral aversion, is sensitivity to texture. If you notice your child gagging at the sight, smell, touch, or even taste of a food or any other texture, they likely are very sensitive to texture. That level of sensitivity makes it very difficult to eat any food.
I address that by encouraging playing and interacting with a wide variety of textures. This can be done away from meals with messy play and sensory bins. The more you child plays in different textures, the more they’ll be tolerant of different textures in their mouth because their brain begins to process textures better with all this exposure.
Set up time to play in different textures daily! Food counts too, again as long as it’s safe if your child puts it in their mouth. The picture below is of Lucy playing with a baby food. She was eating it at this point too.
It’s critical to encourage and allow children with feeding tubes to get as messy as possible. If they’re upset about the mess, clean them up and reassure them. Ultimately, we want them to be able to tolerate being messy.
Step #3: Tasting
As long as you’ve been cleared to start oral feedings, it’s time to start feeding your child small tastes of food. You may need to use your finger or a teether to try those first bites. Spoons sometimes trigger oral aversions.
Focus on tiny little tastes and keep it positive. Smile at your child and make “mmm” sounds. Demonstrate taking a taste yourself.
You will likely work on this stage for a while, working your way up to bigger tastes until they’re eating a few spoonfuls of pureed food. Try baby foods, yogurt, or homemade preferred foods. Just make sure the food is totally smooth. It should have no textures at all.
If your child is having a hard time swallowing, touching their chin to close their mouth can help them swallow the food back instead of spitting it out. See the therapist demonstrating this with Lucy below:
Step #4: Timing
The pivot point to getting your child to understand that they’re hungry is starting to feed them orally when they are tube fed. Most children that have g-tubes or even ng-tubes don’t have a sense of their appetite.
They don’t understand what it feels like to be hungry because food is automatically deposited into their stomach. The brain stops sending signals about hunger. That’s why it’s crucial to match up the timing of the oral and tube feeds.
If your child is on a slow drip feed through the night or day, then you’ll need to talk to your doctor and begin to shift those feeds around. Because the slow feed makes it difficult to connect hunger to eating. Only make tube feeding schedule changes under the guidance of a physician or feeding team that specializes in tube feedings.
As your child begins to eat more orally, you can decrease the amount of food they get from their tube feeding. It’s a bit of a balancing act and does take some time until you’ve found the best balance. The goal is to decrease the amount of nutrition from tube feedings over time until it is eliminated.
Step #5: Eating and Drinking
At this point, volume and variety of foods are usually challenges for a child that is tube fed. To help with volume, eat with your child and demonstrate opening your mouth widely and accepting a bite of food.
You may also want to consider using some high calorie foods so they get the biggest bang for those few spoonfuls of food. Use this list of high calorie foods to get inspired.
As your child accepts purees, you’ll also want to start think about chewing! This is a detailed post that teaches you how to teach your child to chew. Even though it’s geared for younger kids, I’d use the same steps for older kids that haven’t chewed before.
For drinking, you’ll again want to make sure it’s safe to start working on liquids, and if so, which kinds. Milk and formula are thicker than water and therefore easier to manage. Whatever liquid you start with, you’ll want to try putting a little bit on a spoon and seeing how they manage with it. Again, if you’re in feeding therapy, the therapist should try this first.
You’d then keep practicing from a spoon and then experiment with a sippy cup or straw cup (here’s a tutorial on how to teach straw drinking). But, keep in mind that it requires a lot of oral motor skills and sequenced swallowing to do either.
Consistently working on these strategies and being patient with what can be a long process are a very important part of this transition!
Alexis and Aaron focused on these strategies and now, at 2 and 1/2 years old, Lucy is eating just by mouth with no tube feedings for the last 4 months. She’ll need to eat solely by mouth for 6 months before they can begin to discuss plans for removing the g-tube. This time frame does vary though. You can learn more about Lucy’s incredible miracle medical journey here.
Grab a Free Printable
One of the most helpful resources I can give you for this transition is our How to Transition to Table Foods Printable Guide. While this printable was designed to help babies and toddlers not beginning to eat table foods, the steps inside will be instrumental in helping your child begin to eat food too, no matter what their age!
Alisha Grogan is a licensed occupational therapist and founder of Your Kid’s Table. She has over 15 years experience with expertise in sensory processing and feeding development in babies, toddlers, and children. Alisha also has 3 boys of her own at home. Learn more about her here.