Fragile X - 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 Fragile X.
Kirch Developmental Services Center
Many children with Fragile X 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 developmental disabilities. 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. Our social work team can help families with community supports, financial issues and family relationship challenges. Our nutritionists can help look at whether a child is getting the right amount of food and nutrients.
Crisis Intervention Program
Our crisis intervention program provides services to individuals with ASD living in Monroe County with significant behavioral difficulties
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 Fragile X or other developmental disorders who 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 common in Fragile X, 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 FRAGILE X.
Pediatric Sleep Medicine
Many children with Fragile X have sleep problems. Low muscle tone 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 Fragile X 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 Fragile X 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 & Occupational Therapy
Many children with FRAGILE X 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.
Children with Fragile X 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 Fragile X.
Children with Fragile X 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 Fragile X have good oral health.
The Pediatric genetics department sees patients with Fragile X.