After the medical challenges that made a feeding tube necessary have been treated, many parents are left with the daunting task of weaning their child from tube use. However, if you haven’t been successful in working existing medical teams, it is wise to seek the assistance of programs and professionals who specialize in feeding tube weaning. Most physicians and feeding therapists don’t have lots of experience in this process, so you may be on your own in choosing what program/approach is ideal for your child and family. Following are some questions for consideration as you decide which approach makes the most sense for your family.
Show me the evidence!
Any health-related service should have strong roots in evidence, and any decent and skilled professional should have no problem sharing this information with an inquiring parent. Having information about the research behind the program you chose for your child will have the dual effect of ensuring safety and success and will also offer some peace of mind as you embark on the process of helping your child become an eater
- Although personal examples and case studies are emotionally compelling and provide part of the picture, programs should also be able to provide published research that supports the specific interventions and techniques that are used.
- Ask questions about whether the techniques/strategies implemented in feeding therapy or feeding tube-weaning have been studied in the short-term AND the long term.
What are the Outcomes?
Many programs provide percentages of success (i.e. 95% of kids who work with us learn to eat by mouth, or 94% of our clients don’t need to use the tube at the end of treatment). That is important information to have. However, we have worked with many families who are counted amongst the “success rates” of other programs, but after a month or a few months the tube feeds are needed again because the change created wasn’t sustainable. When asking about success rates consider questions like this:
- What is your success rate, and when is “success” determined?
- How do you define success? Tube-free? Eating some by mouth? Stress-free mealtimes?
- How do you manage outliers, such as kids who need more time to learn new things?
- What happens after the first few months?
Do they rely on a “magic bullet?”
Many programs describe their tube weaning programs as “hunger-based.” However, it’s important for therapeutic techniques to extend far beyond getting your child hungry and following their lead because hunger is actually NOT what makes weaning work. If that were the case more children would begin eating after a skipped meal or being made NPO for surgery.
Hunger is important, because it provides the motivation and the context in which children should be learning to eat. Our clinical coordinator states that “teaching a child to eat by mouth without hunger and food is like teaching them to swim in a pool without water.” But, the reverse is also true…. the water itself doesn’t teach you how to swim. You still need to learn the strokes and the breathing techniques and how to float. You still need the people around you to be trained to help you if there is a safety or skill concern.
Children with tube dependency should work with therapists who employ responsive feeding techniques that encourage self-regulation through hunger and who can help them and their families gain the skills they need to make eating possible. Any program that promises results through only hunger and space is likely to leave you with many questions and missing pieces. Chose a program that will be able to support you and your child as you both develop the skills to make eating by mouth both possible, enjoyable, and sustainable.
What is the program’s long view?
Is the goal just to “ditch the tube,” or are they setting the stage for a lifetime of healthy eating? The goal of simply to increasing oral intake may necessitate the use of strategies that have been shown to be detrimental in the long run.
Studies have long shown that adult-controls, bargaining, and external rewards at mealtimes (i.e. “Take another bite”, “Eat this and you can watch your iPad) are correlated with negative feeding behaviors later in life and even health challenges like eating disorders, diabetes and drug abuse. Because these tactics treat the short-term symptoms of feeding aversion and feeding tube dependency and NOT the underlying causes for those conditions, kids may eat more in the beginning, but at a cost to their health and eating down the road.
Look for a program with the long view of developing self-directed independent eaters, not just children who are “tube-free” if you use all the right words and rewards.
Are parents expected to “Do as they are told” or coached and empowered into their roles as agents of lasting mealtime change?
We often see families who worked with “net-coaching” programs or received “training” in a clinic who end up getting stuck on the tube because they never truly developed the competency necessary to maintain the skills that emerged in early weaning and therefore were unable to maintain oral eating.
A true coach has experience in using the research and skills they possess in a way that comes to life for parents. Although some well-meaning therapists think that coaching a parent is just about telling them what to do and sharing information, research shows that this expert-client mindset yields poor results when it comes to eliciting and maintaining change in the family mealtime and other areas of development.
A tube weaning program with therapists who are skilled and trained as professional coaches will empower parents not to “do as they are told”, but to truly develop the skills to approach feeding and mealtimes in a way that fosters healthy and enjoyable eating now and well into the future. Parents should feel confident in asking about the evidence-based coaching approach therapists have been trained in and how that impacts outcomes.
Do they collaborate with the team you already have in place?
You and your child have been on a journey that may already have a number of players with differing expertise and opinions. You want to be sure that the feeding specialists you chose to help wean your child from their tube are willing to work with your child’s medical team….and certainly not against them.
Given the variety of approaches and opinions on learning to eat, the lack of training in the medical community about the tube weaning process, and the impact of certain approaches, many parents feel that this task is an impossible one. Collaborating with the medical team is essential for keeping kids safe and a truly knowledgeable and invested team should always consider safety first and be in communication with your child’s doctor.
In order to avoid the stressful situation of having to navigate competing recommendations from different specialists, it is best to work with professionals who are willing to collaborate with your child’s medical team and establish a plan together. It truly does take a village!
Are they licensed?
This is pretty basic and can be easily overlooked by parents who are busy considering all the other components of a feeding tube weaning program. However, licensure boards for health care workers are there for a reason. They exist to protect the public by making sure that therapists meet the basic minimum training criteria for practice in each state. Therapists who are willing to “get creative” and work illegally in other states could be subject to having their credentials revoked.
- Speech and Occupational Therapists who perform feeding therapy should be licensed in the state where they practice and should also be willing to obtain licensure if your home state.
- In many states, even telepractice services with phone/video support require licensure for therapists in the state where they are located and in the state where the clients reside.
We hope this is helpful to you! Take the time to consider what is important to you as a family, which will inform the way you make your decision. Remember that a tube weaning program should be developing eaters, not just counting calories. For more information on our program and how it might work for your family visit Thrivewithspectrum.com