Feeding Issues: A Guide to Understand and Improve Feeding Skills for Children with Fragile X Syndrome

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1 Feeding Issues: A Guide to Understand and Improve Feeding Skills for Children with Fragile X Syndrome Kristin Burgess, MS, OTR/L Durham, NC Pediatric Possibilities Raleigh & Matthews, NC

2 Objectives Attendees will identify the oral motor, oral sensory processing, postural skills, and arousal mechanisms necessary for feeding. Attendees will identify behavioral associations that may hinder or promote positive feeding experiences. Attendees will explore strategies and tools to support feeding development and promote positive mealtimes.

3

4 Skills for Feeding 1. Oral Motor (Discrimination Skills) 2. Oral Sensory (Modulation Skills) 3. Postural Control and Proximal Stability 4. Arousal/State and Regulation

5 1. Oral Motor Skills Needed for Eating Lip Closure Tongue Lateralization Tongue Tip Control Chewing Pattern Strength Implications for Fragile X Poor Oral Discrimination Overstuff the mouth Poor oral control (soft textures) Trouble tolerating foreign objects in mouth Low Muscle Tone Poor Midline Crossing High Arch Palate

6 2. Oral Sensory Skills Needed for Eating Adaptive Response Taste Temperature Texture Implications for Fragile X Poor Sensory Modulation Picky eaters Maladaptive response to taste, texture, or temperature Prefer crunchy to mushy textures

7 3. Postural Control Skills Needed for Eating Posture Tone Strength Endurance Implications for Fragile X Low Muscle Tone Poor Seating Posture Slouch Prop Slide out from chair Prefer to stand Walk around and eat Lock joints

8 4. Arousal/State and Regulation Skills Needed for Eating Just Right State or Arousal Self-Regulation Respiration Implications for Fragile X Predisposed to Hyperarousal Poor Coping Poor Self-Regulation

9 Yerkes Dodson Law

10

11 Eating. It s not so easy.

12 Feeding and Fragile X Picky Eaters Mouth Stuffers Postural Instability Mealtime Chaos

13 Picky Eaters Avoid certain tastes, textures, or temperatures Tan and bland diet Lack variety in diet Particular about brands and/or restaurants Particular about presentation of food Dislike non-preferred foods on plate Do not like foods touching each other Do not like messy foods or multi-textured foods

14 Strategies for Picky Eaters Do not introduce new foods at mealtime Goal is to explore food, not to eat an entire portion (smell, touch, chop up, lick, spit out, crunch) Reward your child (intrinsic vs. extrinsic) Present food without packaging if possible

15 Strategies for Picky Eaters Explore the qualities of food (hot, cold, crunch, chewy, soft, etc.) Build positive associations Offer positive affect and feedback Reward them exploring foods Think outside of the box for vegetables and fruits Dried/Frozen Smoothies Supplements

16 Make it Fun!

17 Mouth Stuffers Food falls out of mouth Put more food in their mouth than they can handle Put food in their mouth before they have chewed and swallowed previous bite

18 Strategies for Mouth Stuffers Wake up the Mouth Cold (popsicles, ice, frozen chewies) Sour Foods Crunchy Foods Whistles Vibration (Z-Vibe, Electric Tooth Brush) Sucking, Blowing

19 Strategies for Mouth Stuffers Modeling Play based Videos Role Play Visual Cuing Mirrors Pictures

20 Strategies for Postural Stability Theraband wrapped around the legs of the chair to activate core Stack books or place a box under their feet so they are grounded Place a cushion behind their back if they are slouching or sliding forward to create an upright posture Weighted lap belt

21 Posture Dos and Dont s

22 Posture Dos and Dont s

23 Postural Supports

24 Mealtime Chaos In and out of seat during mealtime Refuse to sit at the table Maladaptive response to foods presented Not hungry due to grazing all day or hyperarousal Environment (# of people, smells, table setup, etc.)

25 Predictability s e n s o r y Interaction Environment

26 Predictability Implement a routine and be consistent Setting table Clean up ( bookend ) Use visuals (i.e. pictures, first then, checklist, etc.) Timers Modeling

27 Interaction Just right affect for the situation Waiting/Pausing for a response (backing off) Waiting to allow the individual problem solve or figure out some of the problem Triangulation Involve the child in picking the food Model appropriate behavior and use narrative language Avoid direct questions

28

29 Environment Hat Headphones (music or not) Headband Turn or position a different way Clean up the clutter Lighting Acoustics

30

31 Sensory Diet Deep pressure (anything that compresses joints, muscles, ligaments and tendons) Proprioceptive input (aka heavy work) Slow, linear movement (rocking, swinging, etc. in controlled back and forth movement) Deep breathing and abdominal breathing (activities which require deep breathe, blowing, and sucking) Slow rhythmic music Chew tubes or Chewelry Use firm touch rather than light touch

32 References Miller, L. J., Wilbarger, J. L., Stackhouse, T.M., Trunnell, S.T., & Hanft, B. E. (2002) Use of Clinical Reasoning in Occupational Therapy: The STEP-SI Model of Treatment of Sensory Modulation Dysfunction. In Bundy, A.C., Murray, E.A., & Lane, S. (Eds.). Sensory integration: Theory and practice. 2 nd Ed., F.A. Davis, Philadelphia, PA. Stackhouse et al. (2014). Sensory Processing and Integration Issues in Fragile X Syndrome. Fragile X Clinical and Research Consortium. Toomey, K., & Ross, E. (2012). The Sequential Oral Sensory Approach to Feeding.

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