Prader-Willi Syndrome - Clinical Services
Clinical services in the division of Neurodevelopmental and Behavioral Pediatrics are designed to address the special health and behavioral needs of children and teens with Prader Willi Syndrome.
Kirch Developmental Services Center
Many children with Prader-Willi Syndrome benefit from seeing specialists in childhood developmental disabilities. Our Kirch Center programs provide evaluation and treatment of the common health and behavior concerns associated with Prader-Willi Syndrome. Our physicians and nurse practitioners can help families with behavioral support, developmental monitoring, and treatment of health conditions. Our information and referral service provides families with resources to help their child.
Crisis Intervention Program
The Crisis Intervention Program services to individuals with Prader-Willi Syndrome living in Monroe County with significant behavioral difficulties
Pediatric Nutrition Service
Our registered dietician has expertise in working with children with Prader-Willi Syndrome and other developmental disabilities. She can help families understand nutrition needs and ways to help children with Prader-Willi Syndrome be as healthy as possible.
Feeding Disorders Program
Our pediatric feeding disorders program provides assessment and treatment for children who have difficulty eating related to food selectivity (being very choosy about type and texture of food) , food refusals (refusing to eat certain types of foods), and disruptive mealtime behavior. We provide individualized assessment by a registered dietician, psychologist with expertise in feeding behavior, and speech pathology. We provide treatment to improve mealtime behavior and increase the range and nutritional quality of foods a child eats.
For children with chewing and swallowing problems, gagging, coughing, or aspiration, we work with speech-language pathology to assess oral motor skills and difficulties. We collaborate with speech-language pathologists to improve oral motor and feeding skills and safety.
Behavior Interventions for Families
The BIFF program is for children with Prader Willi Syndrome or other developmental disorders who also have challenging behavior such as tantrums, feeding or sleeping problems, and poor following directions. Goals of the program are to teach families ways to prevent bad behavior, increase the frequency of positive behavior, and teach the child skills required to behave in a desirable way. This generally involves weekly meetings between the caregivers and our behavior specialist for 6-14 weeks.
Because of the medical and behavioral issues commonly associated with Prader Willi Syndrome, children often need the care of other specialists. The Kirch clinical team works closely with the following specialists to make sure each child’s needs are met.
The Pediatric Orthopaedics team works with us to monitor and treat bone and muscle issues in children with PWS. They see children with Prader Willi Syndrome both in the pediatric orthopaedic offices on Westfall Road and in our Kirch Physical Disabilities program.
Pediatric Sleep Medicine
Many children with Prader Willi Syndrome have sleep problems. Low muscle tone and weight problems can increase the risk for problems like sleep apnea, which can impact daytime behavior, learning, and overall health and functioning. Pediatric trained specialists in the Pediatric sleep medicine service can evaluate and treat these sleep problems.
Many children and teens with Prader Willi Syndrome have problems with slow bowel motility, constipation or gastro-esophageal reflux (GER). The physicians and nurse practitioners pediatric gastroenterology can evaluate and offer suggestions for treatment.
Some children and teens with Prader Willi Syndrome have seizures or other neurologic issues. We work closely with physicans and nurse practitioners in Child Neurology to assure children have the evaluation and treatment they need.
Physical and Occupational Therapy
Many children with Prader-Willi Syndrome have problems with low muscle tone and slow development of motor skills. Sometimes children need therapy in addition to what they get through school or Early Intervention. URMC pediatric physical & occupational therapists are available to provide outpatient evaluation as well as intense and targeted therapy programs for children and teens. These programs target specific home and community goals, and independent daily loving skills.
Orthotics and Prosthetics
Some children with Prader-Willi Syndrome need braces or shoe inserts. The orthotics and prosthetics team works with children in their Westfall Road office to provide evaluation and treatment services. They have expertise in evaluation of gait and in identifying and fitting orthotic devices to optimize gait. In addition, they work with children with scoliosis who require bracing and with children who require helmets for cranial molding.
Children with Prader Willi Syndrome often have difficulties with speech, communication, oral-motor control and feeding/swallowing. We work with both Dawn Vogler-Elias (Kirch Speech-language pathologist) and with the team in URMC’s speech pathology department to meet the needs of children with Prader Willi Syndrome.
Children with Prader Willi Syndrome have special dental needs. They often have difficulty tolerating tooth-brushing and routine dental care due to problems keeping the mouth open, sensory differences and problems with gagging. Many children also have challenges due to crowding of the teeth, the way the palate is formed, and dental complications from medicines or health issues. We work closely with URMC’s dental department and with other pediatric dentists in the community to help children with Prader Willi Syndrome have good oral health.
The Pediatric Genetics department offers services to individuals with Prader Willi Syndrome
Children with Prader Willi Syndrome can be susceptible to eye issues. We collaborate with the Pediatric Opthalmology department at the Flaum Eye institute.
the Pediatric Endocrinology department offers treatment and services to children with Prader Willi Syndrome