Management of Infants & Children with Feeding & Swallowing Disorders SAC Conference, May 4, 2018 Joan C. Arvedson, PhD, CCC-SLP, BCS-S, ASHA Honors & Fellow jcarved@aol.com & jarvedson@chw.org Postural Control Evaluation Muscle tone (hypotonia or hypertonia) Central alignment relates directly to oral sensorimotor system Presence of primitive reflexes Level of physical activity Self oral stimulation Use of eye contact, head turning, & touch Principles of Management Whole child approach Total oral feeding is not always the goal Nutrition & respiratory status critical GER managed optimally Changes in management needed with gains or regression 1
Management Recommendations Direct & indirect approaches for oral sensorimotor function Types of abnormal sensory responses need to be considered Oral sensorimotor treatment for anatomic structure problems Intervention Based on Developmental Skill Levels Overall gross & fine motor skill levels Cognitive, language, communication Adjusted age for first year or two in case of prematurity Important that all involved with a child understand & respect the child Intervention Factors Cognitive status Posture, movement, motor skills Muscle tone Medications Reflexes Cranial nerve findings Dysmorphology diagnosis 2
Ongoing Monitoring for Potential Changes Airway status GI tract disease (e.g., GER) Clinical ongoing assessment Postural/positional observations Caregiver/child interactions Oral sensorimotor feeding status Observation of respiration Intervention for Dysfunctional Swallowing Dietary changes Position & posture Bolus placement in mouth Timing between bolus presentations Thermal sensitization - caution for infants & young children Bolus Formation (Oral-Motor Focus for Function of Structures) Jaw Lips Cheeks Tongue Palate 3
Oral Phase Management Positioning Sensory aspects Presentation Texture Movement patterns Pharyngeal Phase Management Indirect oral sensorimotor treatment (e.g., improve tongue base propulsion) Position changes Textures changes Nutrition Support Boost calories in a variety of ways Special formulas or foods Cut back calories/volume Close monitoring with tube feeds Infants with cardiac conditions along with neurologic problems may be fluid restricted 4
Positioning & Seating Critical as underpinning to oral sensorimotor considerations Adaptations may be needed with Hypotonia Hypertonia Growth Regression Therapeutic Techniques: Pros & Cons for Discussion Thickeners Oral sensorimotor therapy Electrical stimulation Escape extinction (part of ABA) Thickening: Questions What effect might thickened feeds have on the GI tract? Young infants may face risk of lifethreatening condition (NEC) Simply Thick banned by FDA for infants Some companies now marketing for ages 3 years & above 5
Thickeners: Questions What happens to timing & coordination with prolonged use of thickened liquid when no practice is given to work toward thinner liquid Thickened fluids & water absorption in rats & humans (adults) no evidence that absorption rate of water from the gut was different (Sharpe et al, 2007, Dysphagia) International Dysphagia Diet Standardisation Initiative (IDDS) Working committee working to standardize terminology related to texture modification Trends with thicker liquids Reduce risk of penetration-aspiration Increase risk of post-swallow residue in pharynx Food texture: properties of hardness, cohesiveness & slipperiness are relevant IDDSI Processes 10 international researchers collaborated to review articles: started 10,147 screened for relevance; 488 met inclusion criteria 36 articles contained specific info re oral processing or swallow behaviors for at least 2 liquid consistencies or food textures Steele, CM et al Dysphagia 2015 6
CP: Risks with Thin Liquids Cochrane review no studies found to support or refute water for children with cerebral palsy (Weir & Chang, 2005) Are there safe thin liquids if intermittent minimal aspiration occurs? If so, what conditions? How can practice/experience be provided? Oral-Motor Exercises Evidence in literature: very limited with mixed quality of reports Arvedson et al 2010: 16 studies of variable quality Insufficient evidence to determine effects Well-designed studies are needed Oral-Motor Exercises Likely sensory involved as well Work only on bolus formation & bolus transit hoping to facilitate pharyngeal function Farther off task they go, the greater difficulty to bring around to desired function Must be pleasurable & not stressful How much time to spend on OM vs use of food or liquid leading to functional feeding? 7
Electrical Stimulation Electrodes placed on surface of skin not adjacent to muscles involved in swallowing Goal: Increase speed of pharyngeal initiation of swallow and improve strength of pharyngeal contractors One report: no more effective than usual care for primary dysphagia in children Christiaanse et al, 2011, Pediatr Pulmonol. Escape Extinction Reports in psychology literature Usually part of ABA therapy especially for children with autism Nonremoval of spoon is typical focus to increase acceptance & mouth clean Used with positive reinforcement often Escape Extinction: Questions Non-psychologists carry out? Is non-removal of the spoon really negative reinforcement? Could this approach ever be perceived as forced feeding? Can negative reinforcement ever be considered positive to the child? For what types of children, is this useful? 8
Management with Feeding Tubes Considerations for Initiating Tube Feeding Incapacity or limited ability to eat & drink Inability to meet nutrition needs by oral feeding alone (>75% calorie needs even with high calorie supplements) Inability to maintain adequate hydration Lengthy feeding times High risk for aspiration Impaired swallow Disordered gastrointestinal system e.g., Gottrand & Sullivan (2010) Long Term Tube Feeding? Beyond 4-6 weeks, gastrostomy tube should be considered (ESPGHAN Committee on Nutrition) PEG routine for all ages, including neonates weighing as little as 2.5 kg Gtube replaced by button once site healed, some endoscopic 1-step button procedures now available 9
Goals of Tube Feeding Alleviate undernutrition in chronic conditions Maintain or improve nutrition status Minimize GI signs & symptoms Improve/maintain quality of life for child & caregivers Easier administration of fluids & medication More time for education & rehabilitation Management with Feeding Tubes Enteral route: through digestive tract Parenteral route: bypass digestive tract Total Parenteral Nutrition (TPN) or hyperalimentation Peripheral intravenous or central arterial lines Conjunction with oral or non-oral enteral feeding Types of Feeding Tubes Orogastric (OG) Nasogastric (NG) Duodenal (ND) Gastrostomy (GT) Jejunostomy (JT or GJT) 10
Nutrition Support for Tube Feeding Adjust formula as needed for Growth Medical needs Family needs Adjust schedule to optimize interest in & ability for oral feeding (bolus vs continuous) Maintain feeding therapy encourage PO Formulas for Tube Feedings Commercial formulas Specialized formulas with food allergies or sensitivities Blenderized tube feedings Ketogenic diets with intractable seizure disorder Others? Bolus Feeding with Gastrostomy Upright position Pump or gravity delivery, air removed Formula at room temperature Feeding time minimum of about 20 minutes to no more than 30 minutes Oral stimulation during feeding (or prior) Tubing flushed after feedings or meds 11
Contributing Factors to Weaning Prolonged experiences with invasive oral procedures Inability to regulate self hunger/satiety Missing out on critical or sensitive period of oral exploration & exposure (6-12 months) Oral aversions leading to continued dependence on supplemental feeding tube Transitioning Off Tube Feedings Establish patient s medical & nutrition stability Adjust TF schedule: bolus vs night drip Decrease TF in 10-25% increments to stimulate hunger Monitor weight on regular basis Transitioning Off Tube Feedings Establish regular schedule for oral feeding Use appropriate textures of food Use high calorie diet as needed Monitor fluid intake & provide free water by tube as needed Use supplements as needed Communicate feeding plan with all team members 12
Criteria: Discontinue Tube Feeding Patient able to take >75% of estimated calorie need orally & maintain weight May be able to discontinue calories by TF before discontinuing all water by TF Consider removal of feeding tube when child has maintained weight, hydration, & adequate oral intake for > 2 months & during period of illness Who is a Picky Eater? Child with limited or decreased Dietary variety Quantity of food Generalized resistance to foods Normal or Picky? Toddlers 2 nd year of life Decrease in growth velocity Relative tapering off in appetite Parents expectations often challenged Natural progression in growth & feeding can be misinterpreted by caregivers Leads to impression of picky eating 13
Fundamental Principles for Eating Children eat best when parents do their part in feeding provide children with appropriate support for their developmental age avoid putting pressure on feeding Fundamental Principles for Eating Health care providers must be careful about setting expectations for how much children should eat need to be aware that caloric densities may need manipulation under guidance of dietitians with physician monitoring Scheduling Food Rules Meal times < 30 min + planned snacks Nothing between meals (except water) Environment Neutral atmosphere - no forced feeding No game playing; no reward with food Procedures Solids first; self-feeding encouraged Meal over if food is thrown in anger Clean up only at end of meal 14
Picky vs Non-Picky Eaters Picky eaters: Less variety Toddlers perceived as picky by mothers Lower dietary variety & diversity Nutrient intake & growth parameters not significantly different Picky Eaters: Children with Special Health Care Needs Previous negative experiences Medical interventions Physical condition that made eating scary, painful, or dangerous Desire to avoid eating may continue after physical condition is corrected Treatment Strategies Medical (e.g., GER/aspiration management) Nutrition (e.g., calorie boosters, fortifying foods, cap on juices, multivitamin/mineral supplement, fiber & fluid considerations) Educational opportunities (for parent & child) Role play for selected parents Nutrition classes & snack time sessions 15
Meal Time Strategies Consistent meal & snack time schedules Average child:1/3 of calories from snacks For child who consistently rejects certain foods, provide nutritious alternatives Reintroduce previously rejected foods Increase exposure to new food Meal Time Strategies Alteration of food & liquid Temperature Taste Texture or consistency Use appropriate serving size: Small Material must be appropriate for oral sensorimotor skill levels Guide for Parents: Building Foundation of Understanding Typical development around growth & development Challenges that children may bring to table Ways parent find themselves stuck in unpleasant & counterproductive feeding patterns Rowell & McGlothlin 2015 16
STEPS: Supportive Treatment of Eating in PartnershipS Decrease stress, anxiety, & power struggles Establish a routine Enjoy pleasant family meals Build skills in what and how to feed Strengthen & support oral motor & sensory skills Understand progress in short & long term different for every child & family Rowell & McGlothlin 2015 Behavioral Interventions Division of responsibility: parent & child Adults are responsible for what food is presented to eat & manner in which it is presented Children are responsible for whether they eat & how much they eat Behavioral Interventions Empower parents with clear guidelines Focus on aspects under control Underscore that you can t force another person to eat Set time limits for meals & snacks 17
Behavioral Intervention Strategies Feeding structure Manipulation of hunger Contingency management Shaping Parent training Feeding Structure Manipulation of factors known to increase desirable behaviors & reduce problem behaviors All meals at the table Child securely seated in appropriate chair Consistent meal & snack time schedule Meal free from distractions Manipulation of Hunger Promotion of hunger to motivation at mealtime - range & volume of foods & beverages consumed Elimination of grazing supplemental feedings Allow child to fail a meal to experience natural consequences of increased hunger Use of appetite stimulants 18
Videos Demonstrating Strategies for Discussion: What Else? What Else? What about sensory approaches (SOS)? Do children who play in food readily end of putting that food into the mouth? What other functional approaches can we use to facilitate improved oral skills along with hunger for children? Other ideas? How do we measure outcomes? Intervention Summary Airway & nutrition highest priorities Often cannot depend on clinic observations alone with suspicion of pharyngeal problem Effort expenditure must be considered Developmental skill levels critical Functional techniques/processes 19
Summary Children with neurologically based feeding and swallowing problems are COMPLEX Feeding/swallowing status changes over time Realistic goals are critical & must be established with parents & professionals working closely together with mutual respect & coordination/collaboration 20