[NFOSD note. Due to the significant volume of emails and calls we receive from families who have a child with a feeding or swallowing disorder, we reached out to Donna Edwards for her insight into what makes this such a difficult diagnosis and treatment. Donna spent a significant amount of quality time listening to what we are hearing and provides an in-depth and insightful response to this subject matter. Thank you for this valuable contribution.]
As a practicing pediatric clinician, I often hear from physicians, “Why does this child have feeding difficulty when there is no evidence of developmental delay, neurological insult or obvious diagnosis?” It’s a difficult question to answer, not only for the child and the family, but one that holds the speech language pathologists interest as well.
If a child is able to take foods or liquids orally they may successfully participate in a Modified Barium Swallow (MBS) or Fiberoptic Endoscopic Evaluation of Swallowing (FEES) assessment thereby allowing the clinician some additional insight into the problem.
Case #1: A 12 month old girl with no obvious issue other than an aversion to food in a unique situation
This young child was referred for and participated in a feeding evaluation. She drank from one particular bottle and would pick up any food you placed in front of her—— even if it was slightly too large for her jaw to work efficiently she would attempt the challenge. She did not consume sufficient volume and remained bottle dependent. If you placed a dry, clean spoon near her face she immediately closed her eyes, turned away, flushed, began to gag and then cry her displeasure. On her MBS, she demonstrated mild loss of bolus control with thin liquids via her bottle resulting in intermittent nasopharyngeal reflux. Nasopharyngeal reflux, caused by a backflow of fluid entering the nasal cavity during drinking, is an occasional occurrence observed during a MBS exam that many children her age do not appear to notice as they independently drink. As each bolus entered or threatened the oropharynx (upper pharynx), this child would stiffen her trunk, hold her breath and begin to cry as she pulled the bottle from her mouth. Though she had a mild swallowing disorder (dysphagia) that could benefit from a controlled liquid flow, she had erroneously learned to attribute her growing negative physiological responses to presentations of utensils. The thought process was unlikely, unfounded, and unrealistic, but spoons were definitely not acceptable. Her oral intake of nutrition/hydration was unable to sustain her as she continued to grow and became more physically active. She was diagnosed with Failure to Thrive (FTT) and the physician was considering an alternate source of nutrition/hydration (such as a feeding tube). Thankfully this little one had strong family support, consistent graduated steps in therapy to increase her comfort level and eventually was able to eat enough from the spoon along with her finger foods that an alternate feeding mechanism was avoided.
Frequency and Intervention
These types of cases are not as rare as some may think. Pediatric caseloads are filled with children struggling at meal times. They are referred for choking, gagging and vomiting, sometimes several times throughout the day as meals are offered. The family dynamic is stressed and dread increases as meal time approaches.
In many cases, an earlier assessment and diagnosis will lead to an easier treatment plan and more successful result. There appears to be a critical window of opportunity to address feeding disorders. These cases are typical of those children found on a pediatric caseload. Usually there is an underlying medical condition either currently or in the past. Whether related to the gastrointestinal system, pulmonary system or overt dysphagia, these issues often prevent these children from developing chewing and swallowing in a typical age appropriate manner. Similarly to the adult with a Zenker’s diverticulum or in need of esophageal dilatation, there is often a physiological basis to the underlying feeding presentation.
Case #2: A 7 year old boy with a diagnosed medical history impacting his eating
Consider the referral of a 7 year old typically developing male with a history of lower stomach dilatation and botox injections for delayed stomach emptying. Since the age of 9 months his interactions with attempts to eat orally were met with discomfort, vomiting, and persistent gagging. He had consumed Pediasure to sustain him over the years and arrived for his feeding evaluation dependent on bottle drinking with no experience having texture in the mouth or pressure/residue in his teeth from chewing foods. Family attempts at transitioning to a cup around the age of 12 months were unsuccessful. Therapy was initiated and this boy now drinks from an age appropriate cup, can bite through cereal on the molars bilaterally without a hypergag response, still cannot tolerate texture to his tongue and is gradually learning to accept various flavored purees without watering of the eyes and vomiting. Reduction of his negative physiological responses is opening up an opportunity for development of oral motor skills for age appropriate chewing skills.
Swallowing overview and perspective
Swallowing and swallowing disorders include the oral and pharyngeal phases of the swallow. For those children who have not developed these oral skills, how shall we clinicians think of them? Do we label them as having a feeding disorder or do we say they have oral dysphagia because they have not learned the correct skill and have an immature feeding pattern? Do we use the term feeding disorder or swallowing disorder as they present with an immature persistent sucking pattern, and help them to facilitate the right motor pattern to coordinate muscle movements to better handle the bolus for more efficient feeding for sufficient nutrition and hydration and relaxed meal times with their family. Those are some of the clinical considerations that I think are important for us to consider as a whole with healthy discussion amongst colleagues. It’s also a reminder that the treatment begins with a valid assessment and that each person, regardless of age, is unique.
Clinicians are working diligently to help children progress along developmental parameters for elimination of alternate sources of nutrition/hydration, such as G-tubes, to learn oral and pharyngeal motor skills to sustain themselves for a more natural interaction with peers at home, in the community and in the school setting. Many children are daunted by the thought of eating with peers, participating in the classroom if foods are involved and struggling to eat a sufficient volume of food efficiently in a lunch room with limited time for lunch. These children are often impacted by early oral feeding as premature infants, silent aspiration, pulmonary challenge, alteration in the esophageal tissue with restricted movement, as in eosinophilic esophagitis (EoE), and other gastrointestinal disorders that of course are not easily detected in these children that appear to be hale and hearty in the classroom. They have frequent hospitalizations, get admitted for NG/G/J tubes, FTT and dehydration. Some parents are even taught how to pull and replace NG tubes depending on the volume consumed by the child. The older child may come in for feeding evaluations with choking and avoidance issues with reduced jaw endurance for repetitive chewing. If the issue goes long enough, the child may appear gaunt and fragile overall. Treatment typically leads us to educating the parent/caregiver, modifying the diet, positioning for safety if needed, and referring to the appropriate source to address medical concerns. Once the medical issues are addressed and begin to resolve, the real work of swallowing begins and improvement begins to emerge.
As children come in for feeding evaluations, we may find they are sucking on bottles, pacifiers, sipper cups, straws, and pureed food pouches without having to grade their jaw to accept the spoon or drink from an open cup. They are having frequent experiences that reinforce immature sucking patterns and then expected to chew foods that are above their skill level, this may perpetuate their aversion to solid foods. Though there is a population that benefits most from a sipper cup to consume sufficient volume that is not the group I refer to here.
The NFOSD foundation is a perfect venue to increase awareness of swallowing and swallowing disorders, but also an avenue of preventative measure for children having an increased risk of swallowing and swallowing disorders with choking episodes, inefficient chewing, and lack of chewing skill, to promote swallowing in our communities and in our families.
Further research and clinical work is needed
It would be marvelous if we could indeed research the clinical questions that are frequently posed by my colleagues and me. DOES severe gastroesophageal reflux disease (GERD) negatively impact development of cough? DOES severe GERD negatively impact sensory chemoreceptors in the oropharynx to trigger airway protection? DOES severe GERD negatively impact sensory chemoreceptors in the oropharynx and thus impact swallow initiation? Does eosinophilic esophagitis (EoE) and the subsequent tissue changes that occur in the esophagus have a negative impact on function and overall physiology of the subsystems. How MUCH impact does aspiration have on a developing pulmonary system?
Pediatric versus adult dysphagia
As an adult therapist I had no idea how complicated the pediatric feeding specialty could be. I often thought it was feeding premature infants, expanding diets, and reintroducing foods to children who may have had a single unfortunate choking episode on food. Similarly to adults, these children have cancer, head and neck issues, traumatic brain injury (TBI), progressive neurological disorders, complications with contractures / torticollis, and cerebral palsy. I find that the children are as complex as adults and more so in some instances when you consider micropreemies and other diagnoses with which these children are born. Unlike adults, their developing systems aren’t being rehabbed, they are developing these skills without the support of core muscle memory to guide them in re-establishing what ‘normal’ feels like, what midline positioning should be or what it feels like to chew or swallow. They don’t know what abnormal is either.
In children, you may have an isolated feeding disorder and there certainly is a percentage of children that fall into the category of an episode of choking on a piece of fruit, or choking on a candy, a pasta, a hotdog, corn…..something that gave them pause, gave them fear, and has limited their diet and acceptance of food and liquid often time resulting in hospitalization for nutrition/hydration issues. Being enrolled in therapy to get back to eating by mouth because of psychological stressors and a team approach is much needed at those times to help those children resume an oral diet, getting back into the school setting and getting involved with their peers in social situations that involve food. On the other hand, there are many children who do not have feeding disorders but they have a true dysphagia, poor bolus transit, aspiration, persistent penetration to the level of the vocal folds, nasopharyngeal reflux, or persistent residue interfering with their successful feeding. They may need a change in utensil to slow the flow rate of the liquid, change in positioning, or diet modification. More and more of our research is showing the structural differences between the adult and the child (Gosa). Then there are those with a feeding disorder and a dysphagia. Many times the dysphagia event resulted in coughing, choking or vomiting and the child responds by developing a feeding disorder along with the dysphagia.
Like adults, children with a dysphagia and/or feeding disorder may benefit from a multidisciplinary approach incorporating the expertise of gastroenterology, pulmonology, primary care provider, registered dietitian, nursing, family supports, community supports, diagnostic related support groups if applicable, Speech Pathology, Occupational and Physical therapy services (Silverman, 2010; Arvedson, 2008). Coordination of these efforts allow us to share our individual professional skill levels while respecting the skill set of each professional field. Unlike adults, these children may also be followed by a Developmental Pediatrician and a Psychologist to help develop a behavioral plan for consistency in a variety of settings that involve food or meal times. When these children are older it is so much more difficult as they have learned behavioral patterns for so many years that they sometimes need more than what we can offer. The feeding clinician can be a compliment to help those children and families as they struggle with a feeding disorder. The Psychologist can help the family transition to successful acceptance of oral intake that truly becomes a part of the child’s daily routine. The Psychologist may help the child internalize the active decision process and guide the family in establishing a positive response to meal times. There are many avenues of support that can be offered to children and families.
Arvedson, J. C. (2008), Assessment of pediatric dysphagia and feeding disorders: Clinical and instrumental approaches. Dev Disabil Res Revs, 14: 118–127. doi: 10.1002/ddrr.17
Gosa (Perspectives, December 2013) Unpublished
Silverman, A. H. (2010), Interdisciplinary care for feeding problems in children. Nutr Clin Pract. Apr;25(2):160-5. doi: 10.1177/0884533610361609.