1. Chris Linn, Executive Director Mother to Emilie who has struggled to eat Conquering pediatric feeding struggles to nourish healthy futures

2. Purpose of today: Understand the complexity of feeding and swallowing problems and the importance of Early Identification Discuss the importance of team collaboration in order to best support the child Discuss the transactional nature of feeding challenges developmental and medical

3. Are kids with feeding problems rare? Feeding disorders  25% - 45% in typically developing children  33% - 80% in children with developmental delays (Arvedson, 2008)

4. Children at-risk include: There are over 200 diagnosis where feeding difficulties are an underlying symptom  Prematurity and extended NICU stays  Celiac disease  Gastrointestinal disease (GER/GERD; allergies)  Congenital heart disease  Neurodevelopmental disorders: Autism; Cerebral Palsy; Down Syndrome; genetic disorders and syndromes

5. Case study - Emilie Baby A – Girl Born 3/15/03 at 25 weeks 3 days gestation 1.9 oz Grade I brain bleed resolved Ventilated 3 weeks then PDA ligation and ventilator for 3 additional weeks Discharged at 35 weeks and 3 days gestation Discharged on oral feeds, supplemental oxygen and apnea monitor At home feeds - arching, crying, vomiting, turning away from the bottle, breathing heavily, apnea monitor alarms periodically for low heart rate, lips turning slightly blue, hand out in 'stop' motion

6. Case study – Emilie cont. Local Pediatrician noted slight weight gain and suggested mom was anxious, however, noted reflux and started reflux medications Pulmonology group readmitted Emilie 3 weeks from NICU discharge date for silent aspiration and ordered NPO NG tube until 19 months old and then G-tube placed Volume issues and constipation - continued vomiting up to 8 times per day - resulted in slow weight gain 2 years 8 months - physician prescribed Amitriptyline - vomiting stopped

7. Case study – Emilie cont. Attended Children's Hospital Richmond, VA feeding program at 3 years old - discovered severe constipation and began Miralax - discharged 75% oral pureed and 25% G-tube fed Diagnosed General Anxiety Mood Disorder while in Richmond, VA - started medications Diagnosed mild cerebral palsy at 4 years old Adenoids removed and sinus scrape at 4 years old due to constant sinus infections

8. Case study – Emilie cont. Feeding progress at home for next 2 years 9 months (able to go 9 months without using the G-tube) G-tube removed at 5 years 9 months old Admitted to bio-behavioral unit at 5 years 11 months old General Anxiety Mood Disorder medications changed - began slow decline in weight

9. Case study – Emilie cont. Diagnosed malnourished 7 years 9 months old (79% ideal body weight) by Children's Hospital Wisconsin Feeding Program Team (Dec 2010) – discovered large tonsils Tonsils removed Jan 2011 Returned to Children's Hospital WI for 1-wk intensive feeding therapy April 2011 Intensive feeding therapy focused on foods matched to skill ability and variety of foods (co-treat model) At 10 years old (March 2013) – weight 54 lbs; 51”; still needs more catch up weight but on right track

10. Thoughts ??? Open discussion …

11. Cognitive Medical Motor skills Social- Emotional Communication Food choices/ Nutrition Environment Sensory Child

12. Coordination of Care Other Important Sub Specialists: Gastroenterologist Ear Nose Throat Pulmonologist Cardiologist Allergist Etc. Multidisciplinary Core Feeding Team: Parent/Caregiver Physician Psychologist Speech & Language Therapist Occupational Therapist Dietitian Nurse

13. Infant and Child Feeding Questionnaire© www.feedingmatters.org/questionnaire 10 – 15 minutes to answer questions

14. Red Flags  Meals described as emotional drain on parent / child / caregiver  Stress cues during meals: gurgled breath sounds; noisy breathing; color changes; aversive behaviors  Severe diarrhea / constipation / vomiting  Ongoing choking / gagging / or coughing during meals  Meals take longer than typical

15. Key Summary Points … Early identification Parallel referrals Collaboration and Coordination of Care