Spina Bifida - 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 spina bifida.
Physical Disabilities Program
Our Physical Disabilities Program is a service where multiple specialists come together to provide evaluation and coordinated treatment recommendations for children with spina bifida and other physical disabilities. Our team includes Neurodevelopmental and Developmental Behavioral Pediatrics, Pediatric Nurse Practitioners, Pediatric Orthopedics, Pediatric Urology, Pediatric Physical and Occupational Therapy, Social work, a Registered Dietician, Orthotics and Prosthetics, and Special Education. We work closely with the family’s pediatrician or primary care provider to prevent, monitor for, and treat health complications of spina bifida. We also address associated behavioral challenges. We work with the family to help the child be as independent and successful as possible at home, school, and in the community.
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 spina bifida 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.
The Division of Pediatric Urology in the Department of Urology provides regular surveillance of all bladder and kidney related concerns including monitoring for hydronephrosis, infections and kidney growth. They can also work on developing a toilet training program based on the child’s ability and bladder’s function .
The division of Pediatric Orthopaedics provides regular surveillance of all bone and muscle issues for children and teens. People with spina bifida are at risk for various orthopedic problems like clubfeet, hip dislocation, scoliosis, fractures and other related problems.
Pediatric trained specialists in the division of sleep medicine can evaluate children and teens for sleep apnea. Some people with spina bifida develop sleep apnea and which can impact on daytime functioning, physical changes and educational performance.
Most children and teens with spina bifida have a bowel with slow motility and constipation. The division of gastroenterology can evaluate and offer suggestions for treatment. Many children and teens with spina bifida also have difficulties with feeding and gastro esophageal reflux (GERD) and may require treatment to reduce symptoms and improve the effectiveness and safety of their feeding regime.
Some children and teens with spina bifida may develop seizures or other neurologic issues and the pediatric neurology unit will evaluate and treat if needed.
Out Patient Physical and Occupational Therapy
Pediatric trained physical and occupational therapists in the department of Physical Medicine and Rehabilitation can provide more intense and targeted therapy programs for children and teens to address specific issues, such as developing an after surgery program to regain strength or improve walking skills, improving daily living skills (feeding, dressing and bathing needs), evaluate for adaptive equipment like wheelchairs or other similar needs. They provide services in their outpatient clinic and can consult to the Kirch Clinic during appointments if the family has concerns.