Prader-Willi Syndrome Clinic
What is Seattle Children’s Prader-Willi Syndrome Clinic?
The Prader-Willi Syndrome (PWS) Clinic at Seattle Children’s brings together experts in many specialties to care for children and teens with PWS. This genetic disorder affects many parts of the body. One of the main symptoms is overeating because the part of the brain that controls feelings of hunger does not work right. This symptom starts in childhood and continues as an adult.
How will the Prader-Willi Syndrome Clinic help my child?
Seattle Children’s has the only clinic devoted to children and teens with PWS in our region (Washington, Alaska, Montana, Idaho and Oregon). Our team includes national experts in PWS.
There is no cure for PWS, but we treat the many health problems that often affect young people with it. These may include:
- Obesity
- Hormone imbalances that can affect growth or sexual development
- Type 2 diabetes
- Difficulty controlling emotions
- Intellectual disability
- Breathing problems during sleep
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The experts you need in one place
Because of the wide range of health problems related to PWS, children have the best results when they get multidisciplinary care.
At our PWS Clinic, your child can see multiple experts in one place. This makes it easier for your child to get all the medical care and other services they need.
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Complete care for your child
- Each child is different. We work with you to give your child complete care. Some children need genetic testing. Others may need tests to assess how PWS is affecting their body.
- We provide treatments to improve your child’s symptoms and quality of life. These might include hormone replacement, dietary advice, behavioral therapy, sleep studies and physical therapy. We make referrals as needed to providers with special training in other departments.
- We can offer our patients the option to take part in national research studies of new drugs and other new treatments. These are called clinical trials. We help connect families to research studies at Seattle Children’s and other organizations.
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Support for your whole family
- We treat your whole child, not just their symptoms. Members of our team have special training in their field and in the unique needs of children and teens.
- Our child life specialists and social workers help your child and family ease tension, express concerns or fears and feel more in control. We also connect you to resources.
- We work with many children and families from around the Northwest and beyond. Seattle Children’s can help with financial counseling, schooling, housing, transportation, interpreter services and spiritual care. Read about our services for patients and families.
Services We Offer
To meet the varied needs of children and teens with PWS, our team has specialized training in areas such as:
- Endocrinology to care for the multiple hormone problems that often affect babies, children and teens with PWS
- Genetics to assess your child, counsel families and do genetic testing
- Neurodevelopmental pediatrics to assess your child’s needs related to the development of the nervous system and give you and your family the right services
- Neurology to find and treat problems affecting your child’s brain, such as seizures
- Nutrition to manage your child’s diet and help prevent obesity
- Pulmonary and sleep medicine to conduct sleep studies and treat sleep disturbances
- Psychiatry and behavioral medicine to diagnose, treat and prevent problems with emotions and behavior
We will identify your child’s medical needs and make referrals as needed to providers in other departments, such as Orthopedics and Ophthalmology. We work closely with the Motility Program, which helps children with problems related to movement of food through the digestive tract.
Scheduling an Appointment With the PWS Clinic
- If you would like a referral to the PWS Clinic, talk to your primary care provider.
- If you already have a referral, please contact us at 206-987-2640 to schedule an appointment or email us for more information.
- If you have an appointment, we will send you information about how to prepare for your first clinic visit.
- Providers, see how to refer a patient.
Telemedicine at Seattle Children’s
Your child’s first appointment in our clinic will be in person and take about 90 minutes. Later visits may be offered via telehealth (virtual). Learn more.
Who’s on the team?
At Seattle Children’s Prader-Willi Syndrome Clinic, we work together as a team and with you to give your child the best treatment. Our team has expertise in the wide range of specialties your child may need.
Teams
Contact Us
For more information, contact the Endocrinology and Diabetes Program at 206-987-2640. If you would like an appointment, ask your child’s primary care provider to refer you.
We provide care at our hospital campus in Seattle.
Providers, see how to refer a patient.
Resources
You can find more information and resources on these links to other websites:
- The Prader-Willi Syndrome Association, USA
- International Prader-Willi Syndrome Organization
- The Foundation for Prader-Willi Research
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School Issues (PWS Association)
- 12 Steps to an IEP (PWS Association, California)
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Getting Started with Disability Supports at School (Washington Office of Education Ombuds) (Spanish) (Somali)
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The Arc of Washington
Paying for Care
Learn about paying for care at Seattle Children’s, including insurance coverage, billing and financial assistance.
Access Additional Resources
Get resources for patients and families, including information on food, housing, transportation, financial assistance, mental health and more.