Alternatives to Tube Feeding Formula: Flexibility with Real Food

Green blended food in a mason jar next to fruit

As many of you know, insurance and hospital protocols heavily influence medical care. This structure is important and necessary in many situations, but with tube feeding, it makes it hard to explore the best option for each individual.

For example, hospital availability and insurance coverage often determine the nutrition options for individuals with feeding tubes, rather than family preference or what’s actually best.

Over the last 8 years working as a pediatric dietitian, I’ve seen many families face numerous challenges because of this.

So many formula changes, frequent adjustments to the feeding plan, new medications, more appointments and phone calls…and still no relief from ongoing digestive issues with their child’s tube feeds.

But then we found an alternative solution…

In this post, we’re going to unpack this together. I’ll share an alternative approach that could help you skip years of feeding issues, or turn things around if you’re already facing them.

Tube Feeding is Not a One-Size-Fits-All Approach

Let’s take a closer look at a few instances where families were left spinning in circles because of their limited choices.

Usually when someone gets a feeding tube placed, the typical “path” is to start on a commercial formula, which as explained above, is dictated by hospital formulary and insurance coverage.

Hilarie holding a PEG feeding tube

For many this means starting on a standard synthetic formula because that’s what insurance will cover. If they want a specialty product, the child usually needs to try and ‘fail’ this standard formula first.

This standard product was often not well tolerated, so on top of learning a new way to feed their child, they now had to manage new digestive issues, new medications, and endless hours dealing with medical supply companies and insurance.

And this could go on for a year or even longer.

Another challenging scenario for families I encountered was when their infant fed by a feeding tube turned one and had to switch to a pediatric formula.

Again, the options were often limited to synthetic commercial products and this transition was pretty rough for some families.

First, many of them had worked so hard to find a plan that was well tolerated, and now they were starting all over again with digestive issues.

Families also expressed they craved a more “normal” feeding experience for their child. They felt their child was not thriving on their tube feeds and should be getting some real food like their peers.

Others preferred a more holistic approach, so switching to a commercial synthetic formula felt like a step away from their ideal feeding plan.

And even though the clinic I was in at the time supported home blenderized diets, we lacked the training and capacity to support families with this well, so it was rarely offered.

Commercial blenderized tube feeding products were becoming more widely available for those preferring real food, but there were a lot of insurance hoops to jump through to get those covered.

Fast forward some years later, after starting many children on blenderized diets and seeing how much better they are doing compared to on synthetic formula only diets, I think about all those families and their struggles. Could some of these struggles been avoided?

History of Tube Feeding and Blenderized Diets

Let’s back up a bit. Did you know that prior to the 1970s, blenderized diets were the most common form of tube feeding nutrition?  

So how did we get to the point where blenderized diets are hardly mentioned, or even looked at as taboo?

Well, in the 1970’s, when commercial formulas became widely available, they became the go to option.

The general consensus shifted to formula is the safest and most ‘complete’ nutritionally. I was taught, just like many clinicians, that it’s unsafe to use anything but formula in a feeding tube.

But I have since learned while it’s true that care is needed to prevent issues like clogged tubes or microbial contamination, there are straightforward ways to make sure these aren’t problems.

And while these formulas are ‘complete’ in the sense that they provide essential nutrients to prevent deficiencies, many lack key components found in real food, like fiber and a variety of phytonutrients.

Hilarie preparing food for a blended diet recipe

Before we dive deeper, I want to be clear: I’m not anti-formula. There are situations where formula is the only option – certain medical conditions demand it, and sometimes, it’s the most practical and safest choice.

It’s also worth noting that formula companies are adapting, offering more real food-based products that have been great for many of my patients. To learn more about these real food formulas and what may be best for you, head here next.

However, I firmly believe you should be presented with all the options and be well-informed to make the best decisions for your child, rather than just being told what to do.

Discovering an Alternative Approach to Tube Feeding

If you are like most parents I’ve worked with, what I’ve shared so far may resonate with you. Tube feeding is just another part of your child’s medical routine, something you rely on your medical team for every direction.

This makes it hard to trust your own instincts because you’ve always been told exactly what to do. And when things are not going well, it feels so out of your control.

So, you continue to do what your team says even though it’s not sustainable or realistic long term.

This is how a family I recently worked with felt.

Cayden’s Story: From Tube Feeding Challenges to Sharing Family Meals

Cayden outside in his medical chair

Cayden is a 3-year-old with a rare genetic disorder that causes feeding difficulties, developmental delays, and seizures.

Because of his feeding difficulties, Cayden had a feeding tube placed, and until recently, his tube feeds took over his family’s life.

Between the two-hour feeds (every 3 hours), extra appointments and calls to navigate intolerances and poor growth, and digestive issues that got in the way of therapies, his parents were completely burnt out.

They had tried multiple formulas, including a real food-based product, many adjustments to his plan, and lots of medication’s. And while the plan was “working” it was exhausting and not sustainable.

Mom felt making his food and offering more variety could be the game changer for her son, but where would she start? And how would she fit this into her already busy schedule?

Here’s how we did it…

We started with just ONE simple blended tube feeding recipe that was the same calorie concentration as his formula. Mom replaced just one of his formula meals to see how he did with it.

Hilarie creating blended food recipes

Then a few days later mom replaced another meal, continuing to use recipes with the same calorie as his formula.

He continued to meet his calorie goal during the transition, and mom could focus on learning the blending nuances rather than stressing about nutrition intake.

She quickly developed confidence that she could do this, and the feeding plan became more manageable as his digestive issues improved.

And now, the family uses a combination of written recipes and blending whatever they are eating (including Panera Bread on busy days!) because they see a feeding tube as just another way of getting nutrition into the body, his food is just prepared a little differently!

This alternative approach, using real food for tube feeding, made all the difference for this family.

The Benefits of Blenderized Tube Feeding and Making it Work for You

There are different ways to do things when it comes to tube feeding, and sometimes the answers we need come from thinking outside the box and being open to new methods.

In my experience, and also backed by literature, blended food is often thicker than commercial synthetic formula which can help with reflux and vomiting.

Blending real food also offers more of an opportunity for a nutrient diversity and to provide food that benefits our gut and microbiome, which may help with digestion.

A blender containing blended, real food for tube feeding

Feeling stuck in a cycle of tube feeding intolerance can be really tough, but introducing real food has been the game-changer for so many families I worked with.

If you’re feeling unsure about discussing this with your healthcare team, don’t worry, I’ve got a free guide that can help you get ready for that talk.

And if your team is a bit unsure about how to support you with this, Blended Tube Feeding Made Simple is here to support you alongside your team. You don’t have to feel like you’re “going rogue” to make the switch to real food.

It’s a practical approach to getting started with real food, with strategies and support your team can get behind.

Just imagine, you or your child are finally feeling better, the tube feeding plan fits into your life, and you no longer feel alone on this journey. This is totally possible for you.

I hope this helps you think about tube feeding a little bit differently and gives you hope for better outcomes.

If you want to connect with me, you can find me on Instagram @blendedtubefeeding. I’d love to hear from you, so don’t hesitate to reach out!

Hilarie, RD, CSP

Hilarie drawing up blended food with a syringe.

*Disclaimer: The information and education provided here is not intended or implied to supplement or replace professional medical advice. Always check with your own medical professional before trying to implement any information provided here

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