The Kindercare Prader Willi Syndrome Clinic for Ontario

The kindercare PWS Clinic  is a multidisciplinary program servicing both pediatric and adult PWS patients across Ontario. Our team delivers family-centered care inspired by the guiding principle that each patient has unique health needs and individualized paths to success.

About Our Program

Our Philosophy of Care

We believe in the 3 Cs:

  • Caring: We strive for compassionate family centered care Individualized flexible approach with a no harm philosophy.
  • Collaboration: We work towards streamlined, evidence based care and collaborate with your team (GP, dietitians, OT, specialists, schools, group homes).
  • Caregiver Support: We connect families with support services and resources. We work closely with the OPWSA (Ontario Prader Willi Syndrome Association) to advocate for the needs of children and adults with PWS.

Services For Infants, Children and Adolescents

  • Individualized health supervision of patients from age 0 to 18
  • Individualized nutritional counselling
  • Collaborating with community programs, including schools and daycares
  • Assistance with food security and developing a hyperphagia friendly food environment
  • Patient advocacy in community programs, including schools and daycares
  • Pediatric endocrinology consultation and ongoing management
  • Addressing behavioural concerns
  • Transition to adult care

Services For Adult

  • Individualized health supervision for patients aged 18 and over
  • Individualized nutritional counselling, including meal plan consultation
  • Collaborating with community supports including group homes and day programs
  • Assistance with food security and developing a hyperphagia friendly food environment
  • Patient advocacy in community programs, including group homes and day programs
  • Addressing behavioural concerns

Availability

Our clinics run on the following days:

  • Pediatric Program: Thursdays, 2 afternoons per month
  • Adult Program: Mondays, 2 to 3 afternoons per month
  • Our appointments can also be made through telemedicine (Ontario TeleHealth Network)

How to send a referral?

We accept referrals from physicians, nurse practitioners, and physician assistants

  • Please fax a referral to the Kindercare office at 416-848-7664
    • Please specify if patient is interested in visits through Ontario Telehealth Network
  • Include the following referral form and any relevant growth chart, relevant laboratory investigations (if applicable), sleep study report, genetics report, any specialist reports (Gastroenterology, Endocrinology, Orthopedics etc)
  • Download referral form here.

What if I don’t live in Toronto but I would like help from the clinic?

  • You can still see the doctor and the dietitian through the Ontario Telehealth Network
  • Your first visit needs to be in person, and then follow-up visits can happen through Telehealth
  • You can even have a telehealth appointment on your home computer, as long as you have a good internet connection and the right type of computer
  • Ask your doctor to indicate on the referral form if you are interested in telehealth services

What to expect at your first visit

  • You will meet with a dietitian and a doctor who specialize in Prader Willi Syndrome
  • On the first visit, we talk about your medical history, growth, diet and nutrition, day-to-day activities, community supports and any issues or concerns that you would like to address
  • A physical exam may take place, including height and weight

Resources

  • Prader Willi Syndrome Association USA has numerous resources, such as information for schools, behavioural support – https://www.pwsausa.org/family-support/
  • Ontario Prader Willi Syndrome Association is a valuable resource connecting you with knowledgeable supportive staff to direct you to services and connect you with other families for support – http://www.opwsa.com/contact-us
  • International Prader Willi Syndrome Association has a good resource on understanding challenging behaviors – https://www.ipwso.org/understanding-behaviours
  • The Foundation for Prader Willi Research Canada is an excellent resource to get update regarding the latest research results in PWS and current studies as well as connecting to other families, events, conferences – http://www.fpwr.ca/

Our Team