THE TRIS PROJECT: FEEDING

DEVELOPMENT AND CHALLENGES

Deborah A. Bruns, Ph.D.Jessica ClaytonJuly 16, 2010

Sioux Falls, SD

PURPOSE

Collect and analyze information about the feeding development,

complications and possible solutions

for children and adults with trisomy 9, 13 and 18

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).

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

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.

METHOD

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

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%)

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%)

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

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

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%)

REFLUX MEDICATION: BIRTH TO SIX MONTHS

53% (n=14) reported Reflux as an issueMost 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%)

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%)

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

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

FEEDING/MEAL COMPLETIONBirth to Six Months (n=26) Currently

(n=24)

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%)

CALORIE INTAKE CONTINUED

THICKENERS

Participants stated that the following thickeners were effective with their children:Fruits and cerealsYogurtPowdered Instant PuddingCommercial thickeners including

Thicken up®, Thickit® and Simply Thick®

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

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

FOR ADDITIONAL INFORMATION

Debbie Brunsdabruns@siu.edu

Jessica Claytonjmc13@siu.edu