Weaning Preparation for Children Fed by G-Tube
Joan Arvedson, PhD, CCC-SLP, BC-NCD, BRS-S, ASHA Fellow
This article was originally published in the January/February 2010 edition of the Lifeline Letter, a newsletter published by the Oley Foundation and has been reprinted with permission.
Infants and children with feeding and swallowing problems may need to receive some or all of their nutrition and/or fluids via gastrostomy tubes (G-tubes). Depending on the etiology of the child's problem and his or her development, the child may need to be tube fed for several months, years, or indefinitely. It is usually the goal, however, at some point to wean the child from tube feeding, or to at least have the child take as much nutrition and fluid orally as possible in ways that are safe and pleasurable. This article will focus on what parents can do to prepare their child for weaning from a G-tube (other types of tubes are not covered in this article).
Some of these children are kept "nil per oral" (NPO, or nothing by mouth) when medical or surgical issues are prominent, and gastrointestinal (GI) issues or the risk for aspiration make oral feeding difficult or impossible. In these cases, most children should tolerate at least minimal "tastes," which may help the child adapt to oral feeding later. The parent should check with the child's health care team. The child may reach a point where safety of swallowing and GI issues are no longer barriers to oral feeding, and it may be possible for the child to eat and drink orally. When this day comes, parents may expect their child to be interested in eating and drinking, but that is not likely to be the case.
Similarly, a child who receives supplemental nutrition and/or fluid through tube feeding may one day be able to eat and drink enough food and liquid to meet nutrition needs so the tube can be removed. This child, however, may be very limited in what she will consume orally, or may have other difficulties with eating and drinking.
A child who has been tube fed for an extended period may not want, or know how, to eat and drink orally. A child's oral skills are one of several issues that must be considered in preparing her for oral feeding. There are a number of ways parents can help children and infants develop oral skills to prepare them for feeding by mouth, even if weaning is not predicted in the near future. Oral sensorimotor stimulation, with or without tastes, can promote improved oral skills. Some oral sensorimotor stimulation strategies are discussed below.
If your child's health care team has given the okay for your infant or child to eat or drink by mouth, you can ask the following questions to determine whether he is ready for small "tastes" by mouth or for larger-volume true oral feeding.
1. Does your child tolerate bolus tube feedings (where the amount of formula for the total feeding is given over a period of 20 to 30 minutes) without vomiting or other kinds of stress (for example, gagging or retching during or after tube feedings)?
Children who cannot tolerate bolus feedings and require slow, continuous feeds - even when the tube feeds are given overnight and turned off during the day - are not likely to demonstrate signs of hunger or an appetite for oral feeding. Facilitation or promotion of hunger is understood to be primary in transitioning from tube feeding to oral feeding. Hunger forms the base for advancing a child's oral skills and expanding the types of food a child will accept. If your child cannot tolerate bolus feedings, he is probably not ready for total oral feeding. He may still be receptive to tastes of food or liquid.
2. Does your child have gastroesophageal reflux (GER) or some other GI tract problem?
Gastrointestinal tract discomfort, from whatever underlying cause(s), can make it more difficult for the child to enjoy oral taste experiences. In these cases, it is more difficult to help the child learn the oral skills typical of children of the same developmental age. When the child's nutrition status, overall medical/surgical status, and safety of swallowing support an advance of oral feeding, she may not be ready to increase the amount of food or liquid, and expand textures and types of food. Parents are encouraged to be sensitive to the child's discomfort and seek guidance to reduce the pain or discomfort. A child needs to "feel good" in order to be interested in eating and drinking by mouth.
Close medical monitoring is important. Physicians and dietitians may make recommendations for adjusting the tube feeding; these could include changing the timing, formula, or volume per tube feeding. These changes may be needed as a basis for advancing oral feeding.
3. Does your child have frequent respiratory problems?
It is important that children have stable respiratory status in order to become oral feeders. It is also important that children get tastes of food or liquid in structured situations with no stress on the child or the parent on a regular basis. Frequent upper respiratory infections, repeated pneumonias, and upper airway obstruction (including enlarged adenoid and tonsils) can interfere with advancing functional oral feeding in developmentally appropriate ways. In this context, "functional" means the skills learned can be applied to "normal" eating experiences, such as eating with family, at school, and so on.
4. Has your child been made NPO? Does he drool frequently, or does he consistently swallow saliva?
It is not unusual for children who are NPO to be inefficient in swallowing their saliva. Total NPO should be rare. Small, perhaps miniscule, tastes should help stimulate purposeful swallowing. Increasing the frequency with which the child swallows his saliva can potentially reduce the possibility of the child's aspirating on saliva or secretions that may be sitting (pooling) in his upper airway. Without purposeful stimulation, some children don't seem to get the sensory cues they need to realize they should swallow their saliva. Healthy lungs are most important, and taste experiences or real feeding must never interfere with pulmonary status.
5. Does your child show interest in different tastes? Is she interested in food or liquid other family members are having?
Young infants who show interest in drinking often do well with a pacifier dipped into pumped breast milk or formula. After the infant has sucked several times and swallowed, the pacifier can be eased out of her mouth and dipped into the liquid again. The process can be repeated several times. It is usually best to keep practice times to about five minutes, and to start just before tube feeding or as the tube feeding is getting started, providing there are no obvious signs of discomfort and stress with tube feeding. If the child has negative experiences with tube feeding, it is best to keep the oral taste practice apart from the tube feeding. All oral experiences should be happy times for children and not related to pain or discomfort anywhere in the body.
Beyond infancy (defined as the first six months of life in typically developing infants or at that level of functioning for pre-term infants or others with developmental delays), a child is more likely to show interest in food and liquid from the family table than in pureed baby foods. She may prefer strong, sour, tart flavors rather than bland food. One example is flavored water (a couple drops of lemon, cranberry, or pickle juice [per a parent suggestion]), usually presented to the child by spoon so you can control the amount. Sauce is another example. You might try spaghetti sauce, ranch dressing, soy sauce, or other foods typically eaten by the rest of the family. You can dip your finger into the sauce, or present it to your child on a spoon; place your finger or the spoon first on the lower lip, and then into your child's mouth at mid-tongue as she "gives permission." The primary goal is nonstressful and pleasurable practice. Do not focus on the amount of food or liquid, or even on the number of trials.
Oral Sensorimotor Stimulation
Research supporting the importance of specific oral sensorimotor intervention procedures is limited. Research has shown that children have "critical and sensitive periods" in their development for advancing to chewable food. In a nutshell, children should be exposed to foods that require chewing by the time they are one year of age (or if global development is in that range) if the swallowing is safe. If parents and therapists wait until the child is 18 to 24 months of age, it may become much more difficult. He is likely to lack the skills and may have become aversive to attempts to get him to eat.
A fundamental principle when transitioning to oral feeding is that the child should find the experiences pleasurable, or at least not stressful. There is no evidence to suggest that activities for stimulation of the mouth and face help advance oral feeding by themselves. They may be helpful for some children who find oral stimulation with vibrators and special brushes to be pleasurable; they smile, vocalize, and reach for the object to "help." However, other children turn their heads away, clamp their lips together, and fuss, all of which clearly communicate they do not like what is being done to them. A child should never be tricked. No one, for example, should ever sneak a spoon into a child's mouth when she is not looking, or while she is crying with her mouth open. The child should know what to expect. The goal is functional eating and drinking, even if little volume.
Strategies to Use with a Child Who Does Minimal Oral Feeding
Offer taste experiences two to three times per day for about five minutes (and no more than ten minutes). These tastes are likely to be most successful when offered just prior to starting a tube feeding (for a child on bolus feeds) or at a time of day when you think your child will be most open to the practice.
For an infant, dip a pacifier into breast milk, formula, or water and let him suck on the pacifier or your finger (as discussed above).
If the child is six months (developmental skill status) or older, a well-supported high chair can be a good seating system. Introduce a dry spoon. If the child demonstrates fear when the spoon approaches her face, start by touching her arm and work toward her face. Tell the child what you are doing in simple, short sentences. For example, say, "Here comes the spoon," "I'm going to touch your lip," or "Time for a bite." Place the flat bottom of the spoon against your child's lips. Do not try to get into her mouth. Repeat a few times. The prediction is that she will open her mouth to give permission for the spoon to go into her mouth.
Do not force a spoon or other utensil into a child's mouth. The child should open his mouth in anticipation of the spoon. This action signals that the child is giving permission for the spoon to be placed on his tongue. Bring the spoon out of his mouth with the bottom of the spoon on his tongue.
Do not ask, "Do you want to eat?" If your child says "no" in any way, the session is over. You must respect the response your child gives when she has been asked and given the opportunity to say "no." Choices can be useful. If you ask, "Do you want water or milk?" you give your child a choice within your control. Further, you should end the session on your terms, not with your child getting fussy and escaping by fussing. Sessions should end on a positive note at the parent's decision.
Strategies for a Child Who Appears Ready to Wean from G-tube Feeds
First, it is very important that the "whole child" is considered when deciding if the child is ready for weaning from a G-tube. This typically requires a team approach. Adequate nutrition and hydration (fluids), stable pulmonary status, minimal to no GER managed well by doctors, knowledge of aspiration risks with oral feeding, and level of function for oral skills must all be considered.
Second, knowledgeable and highly skilled therapists can be extraordinarily helpful to parents and children. Frequency and intensity of therapy are worked out with parents and therapists figuring out a realistic plan. Remember: More is not necessarily better.
The primary opportunities for practice will occur with you and your child for a few minutes at a time, likely two to three times per day. The best times for most children are just before the tube feedings, or, if a child is on slow and continuous feeds, when you determine he is likely to be most receptive to practice.
If a child can drink the formula that is given by tube feeding, trade-offs can be direct. The child can drink whatever volume is handled efficiently and without stress, and the rest can be given through the tube. In that way, a "mealtime" schedule is maintained. Some children will make gradual transitions from tube to oral feeding without needing any intensive intervention. Some formulas given by tube do not taste good to children - or to adults either. Children on such formulas should not be expected to drink the tube feeding formula.
Intensive behavioral-focused intervention becomes appropriate for some children once they are medically stable (with or without major medical/surgical issues in the past), nutritionally sound, and swallow safely (not at risk for pulmonary problems with oral feeding). Diverse approaches may be carried out. There is no one size fits all approach
. Details regarding such programs are beyond the scope of this article.
Parents/Caregivers: What Not to Do
Do not "force feed." For example, never hold a child's face to "sneak" a spoon into her mouth.
Do not fill the spoon too full. Some parents think that if there is more on the spoon, they can get more food in with fewer presentations. That approach may lead to gagging for some children, requires extra, unnecessary effort for the child to swallow, and may lead to food aversions.
Keep the child in the chair for no longer than ten to fifteen minutes.
Do not try to get a child to eat or drink all day long. Children should not walk around with food or liquid. "Grazing" does not promote hunger and appetite.
Try to keep non-feeding/swallowing activities limited when the goal is to get the child to accept a spoon, cup, or finger foods. Keep distractions minimal, with no game playing.
Do not try to wean a child from a G-tube single-handedly. Most children and their parents/caregivers gain success as they work together with multiple professionals. It is important to make sure the child's health status supports the plan, swallowing is safe, nutrition is adequate, oral skills can be efficient, and parent-child relationships are positive.
Do you remember the Aesop's fable "The Tortoise and the Hare"? You know who won the race. The tortoise was slow and steady, and that turns out to be faster in the end. This is the way most children reach the goal of total oral feeding when their medical and developmental status makes it possible for them to wean from G-tube feedings.