1. Care Connection for Children Our Most Difficult Cases Debbie Osborne R.N., M.B.A.

2. Care Connection for Children Care Connection for Children is affiliated with Carilion Children's Hospital and sponsored by the Virginia Department of Health.Virginia Department of Health Our goal is to help families coordinate community and education resources with medical expertise to ensure that children with special healthcare needs can reach their maximum potential. We partner with families of children who have chronic healthcare needs to help open doors to needed resources and coordinate quality family-centered care. We are 100% Grant Funded through the Virginia Department of Health.

3. What Care Connection Does: Facilitate access to services Promote continuity of care Provide families with support Improve health, developmental, educational, vocational, psychosocial and functional outcomes Maximize efficient and effective use of resources such as waivers, Medicaid, etc.

4. Who’s eligible for Care Connection Services? Individuals who can receive Care Connection services must be: Residents of Virginia Under the age of 21 Have special healthcare needs (as defined by the Virginia Department of Health*). *Children who have or are at risk of a chronic physical condition that requires healthcare of a type and amount not usually required by children of the same age. Typically lasting 12 months or longer.

5. Who are we? We are a Team of 10: 4 R.N.’s ( Pediatric Experience) 1 Social Worker (Healthcare Experience) 1 Parent Coordinator( Years of Resource Exp.) 1 Educational Consultant (Special Education) 1 Administrative Coordinator (35 Years at VDH) 1 Program Director (R.N. Clinic Practice Manager) 1 Medical Director (Pediatric Cardiologist)

6. Case History- Female Age 8 Diagnoses: Prader Willi Syndrome Cause: A distinct condition characterized by neurological impairments with an altered pattern of growth and development and hyperphagia (overeating). Genetic Disease caused by Genetic Deletion of Chromosome 15. Effects 1 in every 12,000-15,000 people. There is no cure for this disease. The earlier it is caught the more treatment options are possible.

7. Major Health Concerns: Presents in the neonate with hypotonia (floppiness) and a weak suck. Severe delay in motor movement. Hypogonadism in males is common. Physical description: short stature, deep-set almond shaped eyes, narrow forehead and small hands and feet. Strabismus (crossed eyes) may require surgical correction. Mild to Moderate Global Delay often have a intellectual disability by school entry. Onset of Obesity may be subtle at first and more significant later in childhood. Delayed or incomplete puberty is common. Low energy level due to hypotonia. Sleep disturbances and sleep apnea. Dental problems—including soft tooth enamel, thick saliva, poor oral hygiene, teeth grinding. Learning and behavior problems in school are common. Often there are cognitive impairments which create mood lability, temper tantrums, preoccupation with food and other obsessive traits.

8. Approaches to Treatment Infant has failure to thrive- will need NG for feedings. Short Stature- see an Endocrinologist for growth hormone early in development. Diabetes may also develop, monitor blood sugars. High tolerance to pain-could pose a risk to undetected medical conditions. Skin Picking- can lead to infections- monitor skin closely. Seek a Nutritionist for education regarding calorie intake and diet as child gets to toddler stage. Obsession with food. Educate family and monitor home surroundings (lock cabinets, etc.)

9. Approaches to Treatment Cont.d Dental visits yearly due increase in dental caries and dental anomolies. Need Child Developmental Pediatrician to assess need for Speech Therapy, Occupational Therapy. May also need pharmacological assistance. Need Education Consultant to work with the school on a plan for meals, access to food, and for cognitive learning difficulties. Psychologist is needed for behavior modification. May need Hormone Replacement Therapy for abnormal male and female sexual development. (Female is often sterile).

10. Case Management Role Provide support to the parents Educate family about the disease process each time there is a new development in the child. Meet with the school to provide education about the disease and the child’s educational plan. (Done in conjunction with Education Consultant). Coordinate the appointments and ensure parents have appropriate transportation. Provide emotional support to family. Attend appointments with parents as an Advocate (when needed). Coordinate any home care needs. Find appropriate resources for needs such as ID waiver, etc. Begin working on transition of care when child reaches 12 to 14 years of age. This disease follows them through adulthood.

11. Questions?