Feeding and Swallowing in the Medically Complex Infant with Down Syndrome Down Syndrome Educational Symposium Series

2012
Arwen Jackson, MA, CCC-SLP Jacklyn Kammerer, MS, OTR

Who are we?

Arwen Jackson, MS, CCC-SLP is a speech-language pathologist who has extensive training and specializes in feeding and swallowing within outpatient therapy services as well as several multidisciplinary clinics at Childrens Hospital Colorado. Arwen also has interest in children with complex medical diagnoses including children with Down Syndrome, tracheostomy and ventilator dependence, allergies, and voice disorders. Jacklyn Kammerer, MS, OTR is an occupational therapist who has extensive training and specializes in feeding and swallowing within outpatient therapy services as well as several multidisciplinary clinics at Childrens Hospital Colorado. Jacklyn also has interest in children with sensory processing disorders, complex airway and gastrointestinal issues (Aerodigestive program), and infant development.

Financial disclosure
We have no relevant financial relationships with any commercial interests. Arwen Jackson, MA, CCC-SLP Jacklyn Kammerer, MS, OTR

Learning Objectives
Review typical feeding development Understand atypical patterns common in children with DS Identify differences and similarities of feeding and swallowing difficulties Review medical diagnoses that can impact feeding Discuss therapeutic perspectives to support feeding and mealtimes with a child with DS

Eating is a Learned Behavior

Anatomy + Physiology + Experience Need repetitive, consistent, & positive association with mealtimes to learn to eat

Before they are even born

Oral reflexes develop in utero Mouthing as early as 9.5 weeks Swallowing as early as 11 weeks Association between suck/swallow at 32 weeks Suck/swallow/breathe coordination at 37 weeks

Feeding Readiness in Newborns

Motor skills Born with significant physiological flexion patterns Hands to mouth begins at 0.5 months Oral-motor skills Ready to suck at birth Sucking is reflexive Coordination of suck/swallow breathe Can sequence two or more sucks before pausing to breath or swallow Rooting reflex aids in search for liquid via breast and/or bottle Latch to breast and/or bottle Sensory Non-nutritive suck for self-soothing fingers, pacifier, etc. State regulation Food Textures Liquids only breastmilk and/or formula

Motor skills

Normal Development to Support Successful Feeding Birth to 3 months of age

Flexion positioning Hands to midline Hands to mouth

Calming and self-soothing

Oral Motor Skills Symmetry of oral movements Suckling pattern Oral reflexes present Rooting, Suck/Swallow, Phasic bite, Gag Nutritive sucking and Non-nutritive sucking Oral Sensory Progression
Sensory input from hands, clothing, surfaces, visitors Liquids only via breast or bottle

Food Textures

Normal Development to Support Successful Feeding 4-6 months of age

Motor skills Improving head and neck control and sitting posture Transition to sitting in high chair Symmetrical reaching and grasping Beginning to reach for objects of interest visually directed Bringing hands up to and patting bottle Toys and hands to mouth Oral Motor Skills Continued suckling patterns Oral reflexes fading Increased mobility of tongue Oral Sensory Progression Mouthing of hands and objects Teething (6 mos) encourages oral exploration Food Textures Liquids for nutrition and growth Purees for oral motor skill experience and development
9

Motor skills Sitting alone with some support nearing independence Refinement of fine motor skills Radial digital grasp Poking with index finger Introduction of finger feeding and cup drinking Oral Motor Skills Development of chewing patterns Munching (6 mos) tongue and jaw move together Vertical chew (8 mos) development of lateral tongue movements, with up/down jaw patterns Increased refinement with spoon feeding Tongue quiets to accept spoon Top lip clears spoon Oral Sensory Progressions Explosion of oral exploration Important in learning sensory properties of non-food items Food Textures Liquids for nutrition and growth Purees and meltable solids for oral motor skill experience and development

Normal Development to Support Successful Feeding 6-8 months of age

10

11

Normal Development to Support Successful Feeding 9-12 months of age

Motor Skills Skilled dissociation with hands one to stabilize and one to play Engaging in independent finger feeding Development of pincer grasp Active release Bringing loaded spoon to mouth Oral Motor Skills Increased disassociation of oral structures Tongue lateralization to move foods side to side Rotary chewing patterns - diagonal jaw movements Controlled bite on soft foods Sensory Progressions Lots of sensory play with foods To explore the taste, texture, temperature, smell, etc. Food Textures Liquids for continued nutrition Purees of varying thickness and texture Meltable solids Soft solids Some mashed and coarsely chopped table foods
12

Gagging as a Protective Mechanism

Does the food being presented match developmental level AND oral motor abilities of the child?

PUREES
These foods offered by spoon, may vary in consistency from smooth, thin, and runny to lumpy, thick, or stiff.
Any table foods that are blenderized Grain Group Hot cereal (rice cereal, oatmeal, cream of wheat, malt-omeal) Vegetable Group Baby foods (sweet potatoes, squash, peas, beans) Mashed potatoes or mashed sweet potatoes Spaghetti sauce (marinara or alfredo) Fruit Group Baby foods (applesauce, peaches, pears) Berry sauces Applesauce Mashed banana Milk Group Yogurt Soft cheese spreads Sorbet and sherbet (considered a thin liquid with respect to swallow function) Soft cheese spreads Milk/Fat Pudding or custard Ice Cream, frozen yogurt (considered a thin liquid with respect to swallow function) Meat Group Refried beans Hummus Peanut butter (not recommended the first year due to potential for allergies) Fats and Sweets Cream cheese and flavored cream cheese Ketchup Barbecue Sauce Gravy Jelly, jam Chocolate sauce, butterscotch, or caramel sauce Mashed avocado

____________________________________________________________
Author: N. Creskoff OTR Approved by the Patient Family Education Committee January 2011 2010 The Childrens Hospital, Aurora, CO
14

MELTABLE SOLIDS
These foods which melt or soften readily with saliva and then break apart easily with gumming, mashing, or some chewing. Grain Group Pirates Booty Puffed Rice/Corn Snacks (Veggie Booty, White Cheddar) Gerber wheels Dehydrated veggie sticks Graham crackers Wafer cookies Grain/Fat Group Butter cookies Butter crackers Crushed cookies, cookie crumbs Fruit Group Fruit Booty Fats and Sweets Cheetos Butter cookies Butter crackers Graham crackers Chocolate Mini marshmallows Cotton candy Ice cream cone Wafer cookies Crushed cookies, cookie crumbs

____________________________________________________________
Author: N. Creskoff OTR Approved by the Patient Family Education Committee January 2011 2010 The Childrens Hospital, Aurora, CO

15

Soft Solids, Mechanical Soft Solids

These foods can be mashed and then swallowed, or break apart easily in the mouth without the need to chew. Grain Group Soft breads Soft, well-cooked pasta such as Ramen noodles Well cooked rice (may be more difficult for some children to manage) Pancakes, french toast, or waffles (softened with butter and syrup fats and sweets). Grain/Fat Muffin, cake Fruit and cereal bars Soft cookies such as Fig Newtons Vegetable Group Soft, well-cooked vegetables such as those found in soups (carrots, potatoes, squash) Fruit Group Soft fruits (especially canned fruits such as mandarin oranges, pears, kiwi, bananas, and thinly sliced watermelons) Milk Group Thinly sliced cheese Meat Group Scrambled eggs (should not be given before 9 months) May be more difficult for some children to manage without chewing. Meat sticks or Vienna sausages Cooked legumes / beans Ground meat or tender meats, fish, or poultry

____________________________________________________________
Author: N. Creskoff OTR Approved by the Patient Family Education Committee January 2011 2010 The Childrens Hospital, Aurora, CO

16

MIXED TEXTURES
These foods which contain more than one food texture, and require the most mature oral motor skills to manage. Vegetable and Meat Groups Casseroles Soups with vegetables, pasta, rice, meat Selected Stage 3 Baby foods Fruit and Milk Groups Yogurt with fruit pieces

____________________________________________________________
Author: N. Creskoff OTR Approved by the Patient Family Education Committee January 2011 2010 The Childrens Hospital, Aurora, CO

17

18

Atypical Development of Motor Skills

Abnormal muscle tone Can affect positioning for successful oral feeding High tone - spasticity Low tone flaccidity, floppy Fluctuating tone athetoid, ataxic Fine motor/Gross motor skills delays Can impact development of self feeding skills Diagnosis specific delays

19

Atypical Development of Oral Motor Skills Abnormal Oral Motor Patterns

Tongue thrust Forceful protrusion of the tongue Tongue retraction Pulling back of tongue has thick bunched look Jaw thrust Sudden strong downward movement Jaw retraction Pulling back of jaw difficult to open mouth fully Tonic bite Forceful, tense bite often difficult to relax Lip retraction Pulling back of corners of lips resulting in horizontal line over mouth Always smiling Lip pursing Attempts to counteract lip retraction result in lips being closed in puckered fashion Tremor Rapid, small movements usually during purposeful activity Fasciculation Non-rhythmical, unorganized contractions of muscle fibers across surface

20

Atypical Development of Sensory Processing Skills

Types of sensory dysfunction that can influence typical feeding development: Oral hypersensitivity Oral hyposensitivity Global sensory processing challenges

21

Oral Hypersensitivity
Clinical Signs Difficulty advancing food textures Reduced acceptance of tastes, temperatures and smells Aversive/exaggerated response to touch in and around the mouth Hyperactive gag response Aversion to teeth brushing Lack of age-appropriate oral exploration of hands/toys Treatment Blendarize table foods gradually thicken Avoid mixing food consistencies Meltable or soft mechanical solids are often more easily accepted foods Change only one sensory variable at a time Make gradual changes in taste/texture Work to normalize sensory response with desensitizing activities

22

Oral Hyposensitivity
Clinical Signs Slow registration of food in mouth Poor awareness of food on face/lips Overstuffs mouth May result in gagging or choking Pockets food in mouth Swallows food without adequately preparing the bolus to swallow May result in gagging or choking Drooling Preference for strong tastes Treatment Oral alerting activities Variety of textures of foods Variety of food temperatures Increase flavor of foods with spices/sauces Manipulate foods into safe proportions bite sized pieces
23

Other Atypical Behaviors Common in Children with DS

Orally seeking
Intense chewing on unsafe or odd items

Atypical biting patterns

Biting only with molars Avoiding front of mouth other than drinking or with purees

Reliance on pureed food textures, jarred baby foods, or home blenderized foods Reliance on caregivers for feeding purees due to less efficient but functional fine motor grasping patterns

24

Common medical diagnoses and/or structural differences in children with DS

Cardiac Diagnoses that could impact fatigue Hypotonia (low tone) Tracheomalacia Laryngomalacia Subglottic Stenosis Dysphagia Late dental eruption Gastrointestinal Constipation Celiac Reflux
25

A child with Down syndrome can present with a feeding and/or swallowing difficulty
Feeding/Swallowing Swallowing Chronic poor growth Coughing or choking while eating or immediately after eating Compromised nutritional status History of chronic pulmonary difficulties Food refusal/picky eating which may include diagnosis of Decreased variety and volume of oral aspiration pneumonia intake Chronic oxygen requirement Choking, gagging, coughing and Vocal cord dysfunction vomiting while eating Weight gain is difficult and thought to be Inability to chew/swallow secondary to oral motor or pharyngeal Delayed attainment of self-feeding skills dysfunction Inability to maintain oral skills when tube Difficulty initiating a swallow fed Difficulty transitions from tube to oral feeding Behavioral or learned feeding problems

26

Difference between an Upright Modified Barium Swallow and an Upper GI

27

Upright Modified Barium Swallow Study

28

Gastroesophageal Reflux
Passage of gastric contents into esophagus Common Presentations:
Effortless regurgitation to forceful emesis Arching Gas Irritability Sleeping difficulties

Feeding presentations:
Food refusal Texture selectivity Early satiety Sleep feeding Small volume feeding
29

When A Child Cannot Eat By Mouth:

Gastrostomy Tube (GTube) Nasogastric Tube (NG Tube) Orogastric Tube (OG Tube)

30

Gastrostomy Tube
G tube or button A tube is inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition

31

Nasogastric Tube
NG Tube A tube is passed through the nares (nostril), down the esophagus and into the stomach. Generally used for short term feeding

32

Transitioning from Tube Feedings to Oral Feeding

Work closely with GI doctors and Dieticians for support Ensure oral motor skills can support oral feeding Ensure swallowing is safe and functional for oral intake Normalize influencing sensory responses Support typical oral feeding and meal time patterns Tube feedings during the day If possible complete bolus feedings vs continuous drip feedings Schedule tube feedings associated with meal times

33

Feeding Evaluations at Childrens Hospital Colorado

Pediatric Oral Feeding Clinic Multidisciplinary Team: Developmental Pediatrician, Dentist, Dietitian, Occupational Therapist, Speech-Language Pathologist Individual Feeding Evaluations Occupational Therapist OR Speech-Language Pathologist Dietitian support as needed Upright Modified Barium Swallow Study To evaluate for swallow dysfunction and need for compensatory strategies, including thickening liquids Multidisciplinary Team: Occupational Therapist, SpeechLanguage Pathologist, Dietitian Other Clinics: GEDP Clinic Aerodigestive Clinic Sie Clinic Cleft Palate Clinic Rett Clinic Heart Institute FEES Clinic

34

Occupational Therapy and Speech Language Therapy

A collaborative approach to Feeding Intervention/Feeding Therapy
Individual Therapy Speech-Language Pathologist (SLP) or Occupational Therapist (OT) Frequency determined by patient needs and progress Group Therapy Up to 6 similar-aged peers Led by both OT and SLP Once weekly for 12 week intervals Intensive Feeding Therapy 1-2 sessions per day with either OT or SLP for up to 2 weeks (can be less per patient availability) Ideal candidates: non-local, benefit from increased frequency, allergy food trials in conjunction with medical evaluation by team at Childrens Hospital Colorado and/or National Jewish Hospital Heavy focus on parent education and training

35

A few things to keep in mind to help encourage positive mealtime experiences..

36

Consider your childs communication level during mealtime

Look at non-verbal communication such as eye gaze and facial expression Positioning for face-to-face interaction Food choices
Present food item Consider next steps for future

Sequence and routine for mealtime

Verbal

37

Non-Verbal Strategies to Encourage Eating

NON-VERBAL COMMUNICATION: This form of communication is important because we often give messages without using words. Consider the following during mealtimes: YOUR Position YOUR Facial Expressions YOUR Body Language Observe and Wait Imitation Allow for Equal Turn Taking Make Your Face Match Your Words Decrease Anxiety

38

Verbal Strategies to Encourage Eating

VERBAL COMMUNICATION: What comes out of your mouth at the table is just an important as what goes into it! Language can be a powerful tool to guide, encourage, and positively reinforce food interaction and eating.
Consider the following: Direct Attention Pay Attention to All Aspects of the Meal and All Family Members Provide Appropriate Praise Teach the Basic Rule and Structure of Mealtimes Talk About Your Mouth and What You Do With It Describe Food Properties Provide Reassurance Offer Choices Avoid Questions and Commands; Provide Encouragement and Offer Suggestions for Food Interaction Keep Language Simple and Repetitive

____________________________________________________________
Author: N. Creskoff OTR Approved by the Patient Family Education Committee January 2011 2010 The Childrens Hospital, Aurora, CO

39

Consider the importance of postural stability during feeding

Children need postural stability for distal mobility. What does that mean for a child with Down syndrome and how does that affect feeding?
Support for comfortable and safe positioning for bottle feeding
Impact on swallow function Impact on developmental skills to bring hands to bottle Multiple systems coordinating together for successful feeding experience Impact on tube feedings

Support for a child in the highchair so they are able to easily reach baby purees and spoon to grasp, touch, explore, learn!
Highchair designs vary significantly Adding rolled towels may provide lateral (side) support so that baby can easily stay seated in the highchair without falling to either side or leaning on the tray for support Postural support will allow for more controlled oral movements
40

Food for Thought

Think about your child with Down syndrome.
Are foods too challenging or just right for your child? Think about the environment during feedings, is it chaotic? Music? Television? Bright lights? Others eating? Is feeding with your child fun and social? Is your child positioned in the BEST way to support feeding?

41