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T HE TRIS P ROJECT : F EEDING DEVELOPMENT AND CHALLENGES Deborah A. Bruns, Ph.D. Jessica Clayton July 16, 2010 Sioux Falls, SD.

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Presentation on theme: "T HE TRIS P ROJECT : F EEDING DEVELOPMENT AND CHALLENGES Deborah A. Bruns, Ph.D. Jessica Clayton July 16, 2010 Sioux Falls, SD."— Presentation transcript:

1 T HE TRIS P ROJECT : F EEDING DEVELOPMENT AND CHALLENGES Deborah A. Bruns, Ph.D. Jessica Clayton July 16, 2010 Sioux Falls, SD

2 P URPOSE 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 S URVEY 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 M ETHOD  TRIS Feeding Protocol was sent electronically; participants had option to return protocol electronically or paper copy by mail or fax.  Participants (n=28) o trisomy 9: contacted 25, 11 consent forms, 9 completed (36%) o trisomy 13: contacted 44, nine consent forms, 8 completed (18.2%) o 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 P ARTICIPANT DEMOGRAPHICS (n = 28): C HILDREN Age range of children: Living at time of completion (n = 21): months, mean = months (SD = ) Angels (n = 7): 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 P ARTICIPANT DEMOGRAPHICS (n=28): PARENTS Age range of parents: Moms: years, mean = 32.6 years (SD = 6.03) Dads: 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 P RELIMINARY FINDINGS : F ORMULA : B IRTH TO S IX M ONTHS 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 F ORMULA : S IX TO TWELVE M ONTHS 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 P RELIMINARY FINDINGS : R EFLUX  Reflux is a common complication  Reported as an issue from birth to six months of ag e  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 R EFLUX M EDICATION : B IRTH TO S IX M ONTHS 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 C URRENT R EFLUX M EDICATION 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 P RELIMINARY FINDINGS : T IME TO COMPLETE A FEEDING : B IRTH TO S IX M ONTHS 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) minutes = t9:0, t13:2, t18:0 (n=2) 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 C URRENT TIME TO COMPLETE A MEAL OR SNACK 10 minutes or less = t9:3, t13:2, t18:2 (n=7) minutes = t9:6, t13:1, t18:2 (n=9) 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 F EEDING / MEAL COMPLETION Birth to Six Months (n=26) Currently (n=24)

17 P RELIMINARY FINDINGS : C ALORIC I NTAKE  Number of participants reported that 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 C ALORIE 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 T HICKENERS 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 I MPLICATIONS  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 F OR ADDITIONAL INFORMATION Debbie Bruns Jessica Clayton


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