Feeding Tube to Family Table: An Introduction to the Spectrum Pediatrics Tube Weaning Program
by Heidi Moreland, firstname.lastname@example.org
It is well known that children who have significant medical histories requiring feeding tube placement often develop aversions to feeding. (Mason, Harris & Blisset, 2005). Children may require years of weekly treatments that include numerous appointments, interventions, medical opinions and home programs. Yet, despite adherence to regimens and recommendations, many children fail to progress in acceptance of any or all food intake. Parents often resort to (or are taught) force feeding techniques, bribery or controlling mealtime strategies. Family mealtimes remain disordered and stressful. Unpleasant mealtimes lead to greater mealtime stress as child and parents both dread or fear mealtimes, leading to greater use of controlling practices, or just giving up (Greer, 2008).
Spectrum Pediatrics Tube Weaning program (SPTW) grew out of the belief that tube-fed kids are among the most fragile emerging eaters, and that they deserve four things:
- The opportunity to discontinue tube use as soon as the medical reason for tube placement is resolved. The feeding tube may have been necessary initially, but it is not a neutral intervention. Far from it! It can cause a number of side effects, including vomiting, retching, pain, discomfort, scar tissue, dental decay and possible overfeeding. (Craig et al., 2006; Dyment, 1999; Vernon-Roberts, 2010). Therapy that takes months or years prolongs the child’s exposure to the side-effects as well, making feeding and oral motor activities increasingly unpleasant.
- An understanding of the actual purpose of eating, which is to satiate hunger. We would never work on articulation for a child with autism before working on communicative intent and interaction. Yet our feeding patients are asked to perfect the oral skills for eating before they understand the reason for eating and the purpose of food! Without hunger, food is experienced as either a play activity or stressful event.
- The opportunity to develop a healthy relationship with food. The very first job babies should have besides breathing is to figure out how much and how often to eat. They begin by eating every hour, and slowly learn how much it takes to thrive and grow. Children who are fed by tube have missed the opportunity for their bodies to learn how much it takes to get them through until the next feeding, and how much it takes over 24 hours. We also know that children are more likely to develop a healthy relationship with food when mealtimes are free from pressure or reward. Unfortunately, neither of these are typically considered in typical feeding treatment plans.
- The opportunity to learn the oral skills and coordination of eating in a developmentally appropriate and meaningful way. Sucking is a reflex, the rest of the skills are learned. (Wolf & Glass, 1992) However, spoon feeding, cup drinking, and chewing are not taught through isolated skill practice, they are learned in the meaningful and functional context of eating. We believe that fear isn’t the only reason they aren’t progressing in oral skills, they also haven’t learned the purpose and the context. Imagine learning to swim without getting in the water. The movements are entirely different on land! Without being immersed in water, the movements of swimming are meaningless. Without hunger and food, mouth exercises, playing with food, and even tasting bites are equally meaningless. Eating should be taught in meals, just as swimming should be taught in water.
We begin with an evaluation that determines medical and developmental readiness to eat enough by mouth to sustain daily activity and growth. We have a conversation with a physician who knows the child well in order to determine medical readiness and health parameters. Through video observation we are able to assess mealtime behaviors in a typical mealtime. Even if they aren’t accepting food from a spoon or cup or chewing solids yet, the child’s oral motor skills in play or talking give an indication of the potential to perform the tasks of eating successfully.
Children who are accepted into the program travel with their families and complete the treatment in a home setting, using regular mealtimes with food prepared by the family. 5 days prior to beginning the treatment, their tube feeds are progressively reduced to 50% so they can become familiar with the feeling of hunger in a gradual way. During the 10 day treatment, they are visited by a therapist 3-5 times a day. Food is introduced in developmentally appropriate ways and settings, and food items are chosen as the child shows interest, readiness or preferences. The family members are coached in ways to identify triggers to feeding refusal and to avoid pressure, as well as ways to encourage eating and a feeling of safety. The child is monitored for comfort, energy level, wet diapers and daily stooling. They continue to be supported by tube-feeding as needed to maintain well-being, within parameters set by their own physician who knows them and their medical history well. The average number of days it takes for children to discontinue tube use is < 8 days, although a few kids may take up to almost a month before they are eating enough by mouth to fully discontinue tube use. Oral intake is one outcome, but the focus of treatment is not only to decrease tube-feedings, but to develop sustainable mealtimes and a healthy relationship with food for the entire family. The tasks of the mealtime relationship transition from full parent responsibility for what, how much, when and where of eating to the parent being responsible for what, where and when. The child learns to become responsible for if, and how much they eat, following the Division of Responsibility developed by Ellyn Satter(2000).
Children and families return home at the end of 10 days, regardless of the status of oral eating. Because we focus on coaching the families during that process, we find they are prepared to succeed during the follow-up phase with remote coaching. In fact, the return to familiar settings and routines can be beneficial in the process of establishing carryover and making new routines and habits sustainable. We speak to the families at a minimum of every day for a week, every week for a month, and every month for a up to a year. Focus of the follow up may be food selection, mealtime roles, changes in routine, or strategies to encourage children through remaining fears or skills deficits as well as to ensure they begin to gain weight.
The SPTW program is based on evidence in three areas. We have found that we must address all three areas in order to be successful.
Readiness and Self-regulation Within the Child – Obviously, the child needs to be ready to eat sufficiently by mouth. Motor readiness and medical stability are important factors in considering the timing of the transition to oral feedings. However, we don’t expect self-regulation or mature eating skills to be present if they haven’t been allowed to develop.
There is a considerable body of literature regarding the development of self-regulation. In particular, this research reveals that babies and children regulate over a 24 hour period, not from meal to meal. (Birch, 1991; Daly, 1995; Dewey, 1992) We also see that children are able to regulate on energy, not volume. (Birch & Deysher, 1986 ; Wright, 2015). Finally, we see that every child is different, and every day can be different. (Shea, 1992), and that self-regulation can be taught (Johnson, 2000). Therefore, kids who refuse to eat when they are receiving full nutrition by tube actually are demonstrating appropriate self-regulation by refusing to eat when they have had enough. Well-meaning attempts to allow them to eat during the day and then “make it up by tube” at night or by following smaller meals with supplementation assumes that every child eats the same amount, and doesn’t allow each child develop the ability to self-regulate their intake based on what they need as an individual.
Studies show that babies self-regulate milk intake as infants (Daly, 1993; Fox, 2006), yet the oral skills for eating and drinking continue to emerge and mature over the next few years as the child shows interest and readiness. In other words, because they want to eat, they learn how to eat new and different types of foods. We find the same thing to be true with many of our non-eating “tubies.” Without an understanding of the purpose of eating, the process of eating is meaningless and difficult and will continue to require external motivation. Once they understand why we eat, they become self-motivated and oral skills can be addressed as they progress through appropriate and safe food selection within their interests and preferences. For example, some children begin by eating mostly puree, and need more time for their oral skills to mature for a greater variety of table food. Others begin with a few familiar table foods, but need time to feel comfortable with a greater variety of foods or with liquids.
Mealtime Environment and Relationships – The growing interest in obesity and the role of self-regulation has also resulted in a body of evidence regarding the importance of the mealtime environment and family relationships in developing a healthy relationship with food. Stress, pressure, and parent management of meals have been shown to be particularly damaging in the child’s ability to read and respond to their own bodies hunger and satiation cues. (Farrow & Blissett, 2006; Savage, Fisher & Birch, 2007; Galloway, 2006). We find that if we don’t address the mealtime environment and the family’s mealtime roles, the child’s eating is often not sustainable. The Division of Responsibility developed by Ellyn Satter (2000) has been particularly helpful as we guide parents in re-defining their own roles as their child becomes an “eater.”
Family Stress – As therapists, we know the importance of families and recognize the stress of the medical past. Yet in our roles as medical providers, we often forget how very damaging it can be, because we experience it in the walls of a hospital rather than in the life of a family. One family remembers, “I knew I was watching him die in front of my eyes.” That emotion doesn’t leave once the medical crisis is over. Parents report that watching their baby refuse to eat can often feel like that initial inability to eat due to medical complications, eliciting the same feelings of panic, helplessness and fear. Daily tube-feeding regimens can further isolate families from “normal” family and mealtime experiences until they become almost unrecognizable as family activities (Hartman & Medoff, 2012). Therapists know how to help children work through their fear and food aversions through therapy, but unless we recognize the impact those past experiences have had on the entire family, we will not be able to remove the roadblocks to healthy eating that those experiences have caused.
In fact, the National Child Traumatic Stress Network estimates that 20% – 30% of families will experience symptoms of lingering traumatic stress due to prolonged medical treatment or life-threatening circumstances to their child (NCTSN, 2015). We find that number consistent with the number of families we see that experience sensations of panic with any fluctuations in intake or weight, or who resort to forcing food out of fear for their child’s survival. Without addressing the stress response directly, these emotions will continue to impact mealtimes and the child’s ability to eat independently.
The results indicate that all 3 are important. Our clinical data indicate that approximately 81% are done with the feeding tube in less than 10 days, indicating that children can begin to self-regulate given the opportunity. However, oral skills and hunger recognition are still new. Questions and concerns that come up in follow-up coaching sessions indicates that families continue to need help to stabilize their mealtime interactions, and continue to define their roles in the feeding relationship. Children begin to show more independence and develop more likes and dislikes. Families learn that a child refusing food is normal and not a cause for alarm or escalating parental control of mealtimes, so they gradually relax and trust that the child will eat enough given the opportunity. Discontinuation of tube feedings is only the beginning of a healthy relationship with food, but we find that it is the foundation that tube-fed children need to build in order to become lifelong independent eaters.
Do you only work with tube dependent kids- what about kids that eat only a few foods- do you address that problem?
We occasionally work with kids who are very selective, but only if we feel that it the best option. It is a big undertaking for families.
Do you find the kids loose weight?
We do expect kids to lose weight. That is why we work closely with a doctor who knows the child and what they can tolerate, as well as the historical “ups and downs” of their weight. The standard parameter is 10% loss, although there is one inpatient program that used 15%. Many of the kids begin to eat at ~ 5-6% loss, but not all of them. Some only lose a few ounces! We typically have an idea on how they are progressing before we get to 10% and begin to plan accordingly by adjusting the supplementation. If they approach 10%, we have a conversation with the doctor on how to proceed and make a plan together.
Do you use any medicines to support the process?
We typically don’t recommend making any changes from the current regimen for 3 reasons. The first is that many children don’t respond to the medications, and they do have side effects. The second is that any medications to induce hunger (or reduce anxiety, as one program used) are masking the body’s sensations, making it harder to learn the body’s cues and how to respond to them appropriately in the future. The final reason is that the child will then need to wean off of the medications, possibly with the same refusal and difficulties they would have experienced during the wean, only this time they don’t have the same support.
I imagine some kids would not be appropriate for the program- for instance if weight was not stable or medical issues were untreated?
There are some kids who aren’t appropriate, such as children who aspirate all consistencies. Kids with metabolic issues or who have syndromes known to impact hunger, such as Russell-Silver syndrome, will likely have difficulty in responding sufficiently to their hunger cues, or in eating enough by mouth to keep up with their needs.
Another group of kids that don’t do well with this approach are those with significant sensory issues, such as kids with autism. Because they have difficulty in recognizing and responding to their body’s sensory cues, and eating is a sensory based activity, this is a difficult process for them. We have worked with a few kids with autism adding in some additional supports, but it is a difficult process and takes a longer period of time.
Unresolved medical issues, such as cardiac or respiratory problems that would prohibit them from realistically taking in enough calories to keep up with their needs are two big examples where we would advise them to wait before we start the weaning process. For those groups of kids we would recommend doing the evaluation, and implementing some strategies to get them ready for a wean once they are more medically stable.
Reflux or gut tolerance are actually two medical conditions that would not necessarily exclude them. We actually find that many kids can tolerate higher volumes by mouth than by tube, or do better with table foods than with formulas. Often the reflux symptoms and vomiting go away during Hunger Induction, and don’t return, even if their volume by mouth is similar to the volume they were receiving by tube.
Heidi Liefer Moreland, MS, CCC-SLP ,BCS-S, CLC
About the Author
Heidi is the clinical coordinator and a treating therapist at the Spectrum Pediatrics Tube Weaning Program. She is a Board Certified Specialist in Swallowing and Swallowing Disorders (BCS-S), and a Certified Lactation Counselor (CLC). She has 18 years of experience in working with children with feeding disorders in both hospital and outpatient settings. She began her career as a teacher in a Birth-5 early intervention program, which provided valuable insights into the progression of typical eating and how to work in the family setting, and continues to work with children and families in the home setting and in follow up. She is honored to work with families in this difficult and important process, and enjoys seeing the pride and bursts of independence that children demonstrate when they realize that they have become an “eater.”
Families and therapists interested in the tube weaning program can call Spectrum Pediatrics at 703-299-0051, or email Heidi at email@example.com.
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