The TRIS Project: Feeding development and challenges

1. The TRIS Project: Feeding development and challenges Deborah A. Bruns, Ph.D. Jessica Clayton July 16, 2010 Sioux Falls, SD

2. Purpose Collect and analyze information about the feeding development, complications and possible solutions for children and adults with trisomy 9, 13 and 18

3. BACKGROUND INFORMATION • Forty to 75% of young children with disabilities demonstrate feeding challenges such as insufficient caloric intake to meet nutritional needs and limited skills to self-feed (Arvedson & Brodsky, 2002; Bernard-Bonnin, 2006; Manikam & Perman, 2000) • Common feeding complications include reflux, aspiration and food selectivity. Solutions include use of adapted mealtime items, changes to foods (e.g., texture) and liquids and medication (Kuhn, Girolami & Gulotta, 2007; Rudolph & Link, 2002).

4. BACKGROUND INFORMATION CONTINUED • For children and adults with trisomy 9, 13 and 18, literature is limited regarding feeding experiences. • Available literature indicates respiratory complications including weak suck and reflux (Chen, 2004; Crider, Olney, & Cragan, 2008; Parker, Budd, Draper, & Young, 2003). In addition, cleft palate is commonly found in children with rare trisomy conditions, particularly trisomy 13 (Jones, 2006) • Anecdotal information points to a many children experience reflux and many have gastrostomy tubes with little to no oral feeding

5. TRIS Survey • Development of original TRIS Survey: Full and Modified versions • Completion data: approximately 500 in database • Full Survey: n = 190 • Modified Survey: n = 138 • Follow-up Survey: n = 84 Year 1; 33 Year 2; 8 Year 3 • Development of TRIS Feeding Protocol • Began with feeding-related TRIS Survey items • Available feeding literature and anecdotal information • Purposive sample of families with a child or adult with trisomy 9, 13 or 18 participating in the TRIS project. Due to small sample size, did not include children with “rare rare” trisomy conditions.

6. Method • TRIS Feeding Protocol was sent electronically; participants had option to return protocol electronically or paper copy by mail or fax. • Participants (n=28) • trisomy 9: contacted 25, 11 consent forms, 9 completed (36%) • trisomy 13: contacted 44, nine consent forms, 8 completed (18.2%) • trisomy 18: contacted 52, six “no” responses, 13 consent letters, 11/46 completed (23.9%) • Reasons for non-participation: time of initial contacts (e.g., holiday season, family schedule), child-related medical complications or other family issues

7. Participant demographics (n = 28): Children • Age range of children: • Living at time of completion (n = 21): 15 - 496 months, mean = 129.7 months (SD = 134.31) • Angels (n = 7): 6 - 253 months, mean = 64.7 months, (SD = 92.42) • Trisomy type: • Trisomy 9: n = 8 (28.6%) • Trisomy 13: n = 9 (32.1%) • Trisomy 18: n = 11 (39.3%)

8. Participant demographics (n=28): parents • Age range of parents: • Moms: 21 - 42 years, mean = 32.6 years (SD = 6.03) • Dads: 21 - 46 years, mean = 34.4 years (SD = 6.72) • Country: Majority from U.S. (n = 22, 77%) • Marital status: Majority are married (n = 26, 93%) • Education level: Majority some college to graduate degree (n = 23, 81%) • Income: Majority middle income (n = 21, 75%)

9. Preliminary findings:Formula: Birth to Six Months • Eleven infants received “regular” formula including Similac® with or without iron, Enfamil®, Nestle Good Start® and SMA First Feeding (UK) • Remainder used a specialized formula including: • Similac Neosure (t9:2) • Enfamil Lipil (t9:3) • Alimentum (t18:1) • Nutrimagen (t13:1) • Gentlease (t18:1) • No response for one participant

10. Formula: Six to twelve Months • Majority of infants received “regular” formula including Similac®, Enfamil® and Nestle® products • Several required specialized formulas including: • Alimentum® (t18:1) • Peptamin Junior® (t13:1, t18:1) • Enfamil Lipil® (t9:2) • No response from six participants

11. Preliminary findings:Reflux • Reflux is a common complication • Reported as an issue from birth to six months of age • Trisomy 9: 5 (35%) • Trisomy 13: 3 (20%) • Trisomy 18: 7 (47%) • Reported currently • Trisomy 9: 4 (66%) • Trisomy 13: 1 (16%) • Trisomy 18: 2 (33%)

12. Reflux Medication: Birth to Six Months • 53% (n=14) reported Reflux as an issue • Most Effective Reflux Medication includes: • Prevacid (35%) • Reglan and Zantac (20%) • Mylicon, Propulsid, and Domperidone (Motilium) (13%) • Least Effective Reflux Medication includes: • Zantac (15%) • Reglan, Mylicon, Liquid Gaviscon, and Losec/Prilosec (7%)

13. Current Reflux Medication • 21% (n=6) reported Reflux as an issue • Most effective reflux medication identified as Prevacid (50%) • Least effective reflux medications identified as Prevacid and Losec/Prilosec (6%)

14. Preliminary findings:Time to complete a feeding: Birth to Six Months • According to literature if an infant needs more than approximately 20 minutes to complete a feeding, it indicates possible feeding difficulties (e.g., Manikam & Perman, 2000) • 10 minutes or less = t9:1, t13:2, t18:0 (n=3) • 11-20 minutes = t9:0, t13:2, t18:0 (n=2) • 21-30 minutes = t9:1, t13:1, t18:5 (n=7) • 31 or more minutes = t9:3, t13:4, t18:7 (n=14) • No response for two participants

15. Current time to complete a meal or snack • 10 minutes or less = t9:3, t13:2 , t18:2 (n=7) • 11-20 minutes = t9:6, t13:1, t18:2 (n=9) • 21-30 minutes = t9:1, t13:1, t18:2 (n=4) • 31 or more minutes = t9:0, t13:1, t18:3 (n=4) • No response for four participants • Positive change in this area could be explained by one or more of the following: maturation, improved respiratory status, increase in feeding skills and greater enjoyment in eating activities

16. Feeding/meal completion Birth to Six Months (n=26) Currently(n=24)

17. Preliminary findings:Caloric Intake • Number of participants reportedthat calorie intake was sufficient • Trisomy 9: 4/9 (44%) • Trisomy 13: 5/8 (62.5%) • Trisomy 18: 7/10 (70%) • Number of participants reported that calorie intake was insufficient for optimal growth • Trisomy 9: 1/9 (11%) • Trisomy 13: 0/8 (0%) • Trisomy 18: 2/10 (20%)

18. Calorie intake continued • “Not with breast feeding alone, yes once supplemented with formula.” (trisomy 9p) • “She was breastfed on demand, so the duration of a feed would vary. In her last weeks of life her feeds were very short frequent, likely due to the respiratory distress (which we weren’t aware of at the time).” (mosaic trisomy 13) • “He always was very thin.” (trisomy 18)

19. Thickeners • Participants stated that the following thickeners were effective with their children: • Fruits and cereals • Yogurt • Powdered Instant Pudding • Commercial thickeners including Thicken up®, Thickit® and Simply Thick®

20. summary • Most infants were able to accept “regular” formulas • Children with trisomy 9 and 18 experienced greater incidence of reflux • Sufficient caloric intake was noted by majority of parents • Very identified as primarily or totally tube fed; may be selection bias of participating parents

21. Implications • Explore novel approaches to feed children with rare trisomy conditions. • Continue examination of specialized formulas and diets. • Develop new techniques with input from parents and family members to address feeding complications • Continue to study feeding development, complications and solutions with this population

22. For additional information Debbie Bruns dabruns@siu.edu Jessica Clayton jmc13@siu.edu