Written by Becky Keifer, MA, CCC-SLP and Elisabeth Kraus, MA
All of us have sat through medical appointments where we are asked how well our child is “tolerating their tube feeds,” but for so many of us, “toleration” is the low bar that our kids can never seem to hit as our lives fill with unending retching, gagging, vomiting, constipation and overall discomfort. To some people, toleration issues are a disappointing, but expected, part of tube-fed life, but they shouldn’t be.
At the end of the day, we all want our children to do so much more than tolerate their nutrition. We want them to thrive – to be happy and comfortable as they find medical stability and grow towards readiness for tube weaning. Developing this comfort, however, might require us as parents, caregivers, and medical personnel, to creatively think about how we might de-medicalize the tube feeding process to make it as close to oral eating as we possibly can.
This starts by assessing the most common reasons that children might struggle to tolerate their tube feeds.
For some, discomfort comes because of an allergy or intolerance to what is being put into the tube. Parents who notice these kinds of issues should work with their pediatrician or dietitian to assess what might be causing the reaction, and how to change to a formula or blend that meets your child’s nutritional needs without a reaction.
In other cases, though, discomfort comes because the prescribed tube fed volume is more than your child can handle, or because tube feeds are administered in a way that is uncomfortable. When this happens, some teams jump automatically towards the notion of slowing down the tube feed, but the reality is that a “slower feed” is not always a “more comfortable” feed. And, while pump feeds are a great option for many kids, they are not always the best option for those who deal with consistent reflux, vomit, etc.
For this population, intuitive tube feeds can bring some incredible relief – both to parents and children. Developing intuitive tube feeds requires creativity and the willingness to try a few tubing methods in order to learn your child’s cues and develop a process that, not only helps them to be comfortable and happy, but also mimics oral eating more closely.
There are a few principles to consider when moving towards intuitive tube feeding, the first of which is to stay engaged throughout the whole tube feed. Engagement allows parents to begin recognizing their child’s “full” cues, and to adjust tube fed volume in response to those cues! For many parents, recognizing full cues such as gagging, retching, back arching, squirming, etc., is the first step towards recognizing hunger cues such as hand chewing, fussiness, sucking hard on a pacifier, rooting, etc.
Many parents recognize cues most easily when utilizing a tube feeding method other than the pump. Trying some of these alternatives will require some imagination, recognizing that your child might be cuing “full” before they’ve reached the goal volume prescribed by their medical team – and that is ok! Because no oral eater eats the same volume for every meal, every single day. It also requires parents to avoid the mindset that says that “slower tube feeds will be better,” because many children are comfortable with a faster tube feed administered in one of the below ways than they ever were with fast tube feeds administered with a pump.
Here are some alternative tube feeding methods that might foster increased comfort with tube feeds, and here is an even more detailed explanation of how to do bolus feeds. All of these methods utilize a syringe, rather than a pump, and all of them are under 30 minutes.
1. Suck, Swallow, Breathe Syringe Method (“syringe swallow method”):
For this method, parents should use one or more large syringes with the plunger. After sucking up the entire goal volume into one or more syringes, hook it onto the tube and think about the pace your child would drink this volume if they were drinking it orally from a bottle: suck, swallow, breathe.
Mimicking this pace, begin pushing the feed, 3-5mls at a time: small push, short pause. Small push, short pause. Small push, short pause. And so on and so forth, all while spending time with your child and paying attention to what their body is communicating to you. If you notice that the push is too fast, increase the length of the pause in between. If you notice the need to burp, take a small break to make space for that. And when you notice “full cues,” such as those mentioned above, listen to your child and end the feed, even if that means they did not “eat” their goal volumes.
2. Gravity Feeds:
For this method, parents should use one or more large syringes without the plunger. This method might require a bit of experimentation as you learn how to pace the feed at a rate that is comfortable for your child. The main principle to remember is this: the higher you hold the syringe, the faster the flow, while the lower you hold it, the slower the flow.
After sucking up a portion of OR the total of your child’s goal volume into the syringe, remove the plunger and hook the syringe to the tube. Move the syringe from being level with your child up towards the ceiling. If you notice that the flow is too fast, move the syringe down to slow the flow – and vice versa! Pause when needed for burps or breaks, and end the feed when your child begins to show fullness cues.
3. Straight Syringe Method:
If your child has been tolerating these quicker-paced syringe feed, you may find that they can easily tolerate a “straight push” from the syringe: sucking up the full goal volume into one or more syringes, and simply pushing it in. We recommend trialing this slowly and carefully, again focusing on your child’s cues to know if you need to slow down, take a break, or end the feed.
When you begin utilizing any of these methods, you may worry how you will know if your child is safe if they aren’t receiving the exact volume prescribed by your team. When this worry arises, be encouraged to think about how you will assess “okay-ness” when your child is an oral eater: rather than measuring how much goes in, you’ll simply be aware of how much is coming out. Rather than expecting the exact same caloric intake day in and day out, you’ll expect the normal fluctuation that all oral eaters experience.
As long as you are seeing regular pees, good and soft poops, energy and happy engagement with the world, alongside expected developmental progression (that includes, but is not limited to, weight gain), then you can rest assured that your child is learning how to meet their nutritional needs adequately.