The Prader-Willi Center is the only one of its kind in North Texas and surrounding states – bringing the right experts together so your child can receive coordinated, thoughtful care without added burden on your family.

Your child has access to a variety of specialists offering targeted treatment, including:

• Endocrinologists who provide assessments and hormone treatments
• Developmental pediatricians who assess intellectual abilities and identify behavioral challenges
• Orthotists who create custom assistive devices such as braces
• Physical medicine and rehabilitation specialists who treat musculoskeletal problems
• Sleep medicine doctors who treat sleeping- and breathing-related problems

Our team also includes:

• Child life specialists who offer support and resources to help occupy children during long visits
• Nurse coordinators who help you prepare for visits and ensure your child's care goes smoothly
• Nutritionists who develop personalized dietary plans and recommendations
• Pharmacists who counsel families on medication instructions, interactions and side effects
• Social workers who assist, educate and advocate for families throughout treatment

PWS affects children in many ways. Our doctors and multidisciplinary team have special training in the potential complications and nuances of the condition, bringing your child the most effective care.

Our team includes social workers dedicated to extensive caregiver support. We help educate your family, connect you with community resources and advocate for the social services your child needs. Together, we focus not just on managing PWS – but on unlocking your child’s potential while supporting your family with clarity, compassion and expertise.  

Our comprehensive Prader-Willi Center team works together to evaluate and treat many of the issues that your child with PWS may experience. Here is a list of specialists on our Prader-Willi Center team and what services they may provide when appropriate for your child:

Endocrine clinician

• Closely monitor progression of growth for weight and height.
• Evaluate regularly for endocrine conditions, including: adrenal insufficiency, diabetes, growth hormone deficiency, hyperlipidemia, hypothyroidism, low bone mineral density, pubertal concerns, and Vitamin D deficiency.
• Manage growth hormone deficiency from infancy into adulthood while closely discussing with sleep medicine.
• Provide recommendations as needed on stress-dosing of steroids for individuals with adrenal insufficiency and coordinate with anesthesia and associated specialists peri-operatively.
• Refer to genetics, gynecology, nephrology, ophthalmology, and urology as needed.

Sleep medicine clinician

• Assess for sleep-related disturbances across pediatric ages: central and obstructive sleep apnea, hypersomnia, insomnia, narcolepsy, and other sleep-related disturbances.
• Coordinate screening pulse oximetry and/or sleep studies as needed.
• In conjunction with endocrinology, provide recommendations on the safety of growth hormone therapy in context of the patient's respiratory status.
• Refer to sleep psychology, pulmonary medicine, and ENT (ear, nose, and throat) as needed.

Developmental and behavioral clinician

• Counsel families on expected and/or observed behavioral challenges and help families proactively prepare and manage.
• Review IEP / FIE from school, educate parents on process and provide recommendations as needed for school.
• Facilitate and evaluate the patient's behavioral and developmental status through validated tools and educate parents on their child's development (such as having appropriate expectations).
• Prescribe treatment plans (behavioral and if indicated, medication treatment) for behavioral/mental health concerns (obsessive-compulsive disorder, anxiety, attention deficit hyperactivity disorder, oppositional defiant disorder, perseverant speech, extreme aggression/impulsivity, self-injurious behaviors, autism)
• Constipation, enuresis/toilet-training counseling and management for patients who do not have major musculoskeletal/physical limitations. Refer to gastroenterology as needed.
• Identify and refer patients needing more intensive behavior intervention/counseling.
• Refer to psychiatry for more intensive psychiatric medication or diagnostic needs as needed.

Physical medicine and rehabilitation clinician with orthotist

• Identify developmental delays for speech, feeding, fine motor skills, and gross motor skills; Refer to speech, feeding therapy, PT, and OT as needed.
• Refer for swallow studies to evaluate for dysphagia/aspiration in infancy and beyond as needed.
• Assess for scoliosis, hip dysplasia, foot abnormalities, limb malalignment, significant hypotonia, and other musculoskeletal abnormalities.
• Discuss household modifications to facilitate independence in activities of daily living.
• Coordinate orthotic fitting/placement for patients in conjunction with orthotist.
• Refer patients with significant musculoskeletal abnormalities to orthopedics for treatment with bracing, casting, or surgery as needed.

Dietician

• Closely monitor growth pattern for height and weight and determine what nutritional stage of PWS the individual is experiencing.
• Develop personalized nutrition plans and recommendations for patients and families
• Prepare nutritional plan for patients to take to school.

Social Worker

• Assess for community and/or system factors that affect the health of the patient and family unit.
• Advocate for social services and help families navigate this complex system.
• Educate family on available social resources
• Coordinate transportation to clinic for at-need families
• In conjunction with psychologist, provide crisis intervention as needed
• Advise families in the process of supportive decision-making and provide information on group home care for children transitioning to adult living

Child Life Specialist

• Provide donated toys/books to help occupy patients during MPoWER Center visits.
• Be available to help patients cope with multiple provider visits, labs, etc.

Pharmacist

• Verify medication history with families
• Be available to answer any questions that patients and families have about medication administration or side effects.
• Serve as a resource for the Prader-Willi Center team to investigate medication related issues and to help in medication prescribing and counseling.

Nurse Coordinator

• Coordinate and schedule Prader-Willi Center visits and provide information to families on what to expect on the clinic day.
• Ensure that any pre or post-visit studies and forms have been completed by families to help make the Prader-Willi Center visit as productive as possible.
• Facilitate smooth operations on the Prader-Willi Center clinic day.
• Be available as a resource for questions and concerns from families both on the clinic day and between clinic visits.

1. On your Prader-Willi Center day, your family will be assigned your own clinic room for the day, while your PWS specialists come in set time blocks throughout the visit. Our Prader-Willi Child Life Specialist will help make sure your child has engaging activities to help keep him/her occupied during the day.
2. Our Prader-Willi Nurse Coordinator will start preparing you for your visit in the month before your visit. Our Nurse Coordinator will walk you through intake questions and questionnaires along with pre-visit studies that will help make your visit as productive as possible.
3. Your Prader-Willi Center specialists meet together as a team before your family arrives and again after your family leaves to make sure a comprehensive plan is in place to provide the best possible care for your child.

Foundation for Prader-Willi Research

Prader-Willi Syndrome Association

Texas Prader-Willi Association

Ongoing PWS Clinical Trials

Thanks to the network of pediatric experts at Cook Children's, your child has easy access to specialty referrals as needed. We work closely with experts in:

• Cardiology
• Ear, Nose and Throat
• Gastroenterology
• Genetics
• Gynecology
• Neurology
• Nephrology
• Ophthalmology
• Orthopedics
• Psychiatry
• Urology